It may seem like quite the leap from hysterectomy to suicide, but it really isn’t a leap at all. Hysterectomy with ovary removal induces what doctors refer to as “surgical menopause.” There’s really no such thing as “surgical” menopause. Hysterectomy with oophorectomy is the female equivalent to male castration and as such carries with it all the risks and associated hormone changes that one might expect when primary endocrine producing glands are removed. The precipitous drop in hormones, much like those experienced following childbirth, can and does have calamitous effects on mental health, not to mention physical health. Perhaps the only difference between male castration and female castration is the fact that female castration is performed regularly and without regard to the physiological and psychological side effects that ensue.
Why Write About Hysterectomy and Suicide?
I decided to write this post because I was castrated, against my will, without consent and have struggled with a myriad of health problems ever since. You can read my story here, here and here. In the years since my ovaries were removed, I have worked hard to spread awareness about the devastating health consequences that this common surgery elicits. Over those years, I have heard from hundreds of women who have experienced similar suffering.
“I was a bright light until a doctor murdered me on (she gives the “exact” date of her surgery). Only a woman with a complete hysterectomy can remember that date. I have had surgeries before, but I never remembered any of those dates. You will always remember when you went into have something done simply to stop heavy bleeding and going in as one person and then the doctor switching you with some kind of alien when you wake up. Within a year, I was 50 pounds overweight and my thyroid had a nodule on it that was cancerous. I had the worst fatigue and suicidal depression there could be.
I can’t believe I made it. I remember telling my 10 year old I didn’t want to live anymore and he kept saying “don’t say that momma, yes you do”. There is no one that could ever comprehend this hell unless they have been through it. I’m overweight with fibromyalgia and fatigue, talking myself out of suicide constantly. I have metabolic syndrome and I’m insulin resistant. I have constant lightheadedness, difficulty swallowing, broken out and dry skin. I have never even tried to go back to having sex simply because I stopped dating. I stopped being the happy, vivacious, beautiful woman I once was. I have been to 45 specialists in the last 10 years including Mayo Clinic to the point where I know I know more about hormones then they do!”
Another woman wrote to me recently stating she too was suicidal just thinking about the 1 year anniversary of her hysterectomy. She wrote:
“Exactly one year ago today, I was on an operating table being castrated and mutilated – the pain too much to bear. I wish I could stop this rapidly aging skin, body and hair loss. My body and soul are devastated. Shaking and in utter disbelief. The person I was before died the day of hysterectomy: my life, body, personality and every other aspect of the life I once knew is dead and over.
So, it is a rebirth of this hideous and painful existence of a stranger living inside a new broken body, soul, personality, etc. I very much relate to Frankenstein who was created in a laboratory unwillingly and without forewarning (informed consent) and awakened to a strange world he could not relate to nor understand. He was full of pain inside and out with all of those gory stitches, having to learn to walk, talk and the great torment he had of being here. Frankenstein is a fictitious character, but I can relate, for I, feel like a monster. I would give anything to be whole again. I know what I now am, and that is a “Castrati” and “Eunuch”.
More recently, a good friend that I came to know through my website committed suicide after years of struggling with post hysterectomy health issues. Before she died, Toni sent me her story in her own words and asked me if I’d post it on my site so other women could be warned about what life post-surgery is really like. She didn’t want what happened to her to be in vain. She wrote in part:
“I am a changed human being. I sometimes do not even want to get out of bed. My poor husband… he misses the woman and wife I was. She is gone. She was taken the day I had a hysterectomy. I am a “shell” of a woman now.”
This shouldn’t happen. Young women should not be castrated and then thrust into a world of ill-health and darkness. Hysterectomy, especially when the ovaries are removed too, should be an option of last resort, not something cavalierly recommended to young women, nowhere near menopause.
I wrote this post for the women who have lost their ovaries, lost their health, their vitality, their sex lives and their hope. I am not sure that I can give you hope, but I can give you a voice until you can find your own voice and together we can stop this practice and prevent other women from suffering.
Natural Menopause, Hysterectomy and Castration: It’s All About the Hormones
Natural menopause. It is important to talk briefly about the effects of “natural” menopause in order to better understand the effects of hysterectomy and castration. Even natural menopause is a “game-changer” for most women with some of the more commonly discussed symptoms being hot flashes, mood swings and dry vagina. ACOG lists over twenty adverse effects of menopause in their Menopause Patient Information Pamphlet including but not limited to: hot flashes, insomnia, dry/thin vagina, increased risk of urinary and bladder infections, increased bone loss and risk for fracture, loss of heart protection and increased risk of heart attack and stroke, emotional changes such as nervousness, irritability and fatigue, loss of libido and difficulty achieving orgasm. There are more symptoms not specifically listed, but these are enough to take your breath away. It is important to keep in mind that these symptoms develop gradually over years during the natural process of endocrine senescence or aging. The process is complicated and researchers still don’t understand the full spectrum of changes that happen when women age. Some hormones decline, others increase to compensate, immune factors are involved and the entire body changes to adapt to the new reality. The experience of menopause in each woman differs with some experiencing very few symptoms and others experiencing great difficulties. The key points are that menopause is gradual and complicated. It is not just the removal of estrogens and progesterone. Many other hormone systems recalibrate.
Hysterectomy without Oophorectomy. Hysterectomy without ovary removal is common. The thought is that if the ovaries are left in place, vital hormones will continue to be produced and circulated. To some extent that is true and women who retain their ovaries seem to fair better than those who do not. However, hormones work through feedback loops, the uterus contains many important hormone receptors that communicate with the ovaries. When the uterus and cervix are removed, those receptors are removed too. Without those receptors, communication ceases and the ovarian production of hormones will cease as well; more gradually than if the ovaries had been removed, but more rapidly than in natural menopause.
Castration. When the ovaries are removed, we call this castration. It is no different than removing a man’s testicles. Oophorectomy precipitates a radical change in hormones overnight. Symptoms hit within a matter of hours rather than years. Ovary removal is akin to a ‘cold turkey’ full throttle withdrawal from very strong drugs, the complexity of which we still don’t fully understand.
Concentrations of the estrogens and progesterone drop to nearly nothing, almost immediately, while testosterone concentrations decrease by half. In natural menopause, the adrenals can pick up some of the slack and produce more estrogens and other hormones, but with oophorectomy there is no time, just an immediate crash; a crash that most women, their families or their physicians are not prepared for, because nowhere in the literature given to the patients is this discussed.
Female Castration According to Experts
The American Congress of Obstetricians and Gynecologists (ACOG) calls female castrations ‘surgical menopause’ and although they recognize the severity of hormone changes in their professional literature: “The effects of surgical menopause are severe due to hormone levels decreasing all at once,” the severity of the hormone dysregulation initiated by surgical menopause is not even mentioned in their patient literature: ACOG’s Hysterectomy Patient Information Pamphlet. In fact, the term “surgical menopause” is not even used. Instead, the pamphlet says
“Depending on your age, if your ovaries are removed during hysterectomy, you will have signs and symptoms caused by a lack of estrogen, which include hot flashes, vaginal dryness and sleep problems. You also may be at risk of a fracture caused by osteoporosis at an earlier age than women who go through natural menopause. Most women who have these intense symptoms can be treated with estrogen.”
There’s no mention of castration or even the more benign term surgical menopause. If these terms were mentioned, some women might think to look for a pamphlet about those topics. In other words, they’d connect the dots. As things stand now, there are no dots to connect. The severity of the side effects are downplayed considerably.
The Myth of Hormone Replacement Therapy Post Hysterectomy
To make matters worse, many castrated women are left with no way of supplementing the hormones they’ve lost. They’re simply sent on their way. Others are prescribed a “one size fits all” hormone therapy such as Premarin which is derived from the urine of pregnant mares. While it may work for some women, it comes with serious side effects and doesn’t seem to work for women who have been castrated, likely because the ovaries produce more than just the estrogens and synthetic hormones are not capable of replacing what the body produces on its own.
“I am a 46 old and had a hysterectomy for which my uterus, cervix and both ovaries were taken in 2011. This was due to having endometriosis since I was 22 and having it laparoscopically removed three times, for which my doctor had advised to just have total hysterectomy instead of surgeries. I, however, wanted to hold on to my ovaries. That day did come that I agreed to have all removed, and can I say that I count that as the last day of my life. I have been living in a life just short of a Stephen King novel. I decided after surgery to wing it with no HRT at all and done that for a whole year. In 2012, I decided to try Premarin at the suggestion of my doctor. This was because of the night and day sweats, intense cold spells, horrific mood swings, insomnia, drastic weight gain, memory loss and forgetfulness and loss of libido to name a few symptoms that had gotten to me severely. The hormones worked for 1 month. Then all symptoms came back with a vengeance! My doctor wanted to double my dosage of premarin, but my scare of cancer quickly stopped that. I am now holding on day by day. I have lost half of my hair since coming off HRT. Every day, suicidal thoughts are in my mind, I mean it is all so hopeless to me. Just wish I could reverse the surgery, but that is not possible. HELP”
Sadly, many doctors even prescribe psychotropic drugs, as if they could somehow replace a woman’s own natural hormones.
Depression Post Hysterectomy
Depression is a very common problem for women who’ve been castrated, but one that is rarely acknowledged appropriately. Given the vast biochemical changes a woman’s body is thrust into, it seems likely that she could be propelled into a severe depression and should be warned accordingly, before the surgery.
To better understand how traumatic castration can be, consider a few things we now know about women going through “natural” menopause: 1) women going through natural menopause are three times more likely to be diagnosed with depression than the general population 2) this is true even when there is no prior history of depression and maybe most surprising 3) natural menopause is a time in a woman’s life when she is most likely to commit suicide. Of course, women who’ve been castrated are at the highest risk of all due to the immediate drop in hormones and the severity of symptoms. Add this to the fact that a castrated woman’s adrenal glands are suddenly placed under the extreme stress of taking over for missing ovaries and other organs throughout the body become likewise stressed. All of this additional stress on the body’s organs and systems can, of course, lead to diabetes, autoimmune diseases, heart disease, brain diseases, cancer, etc.
Depression Post Female Castration
Depression brought on by castration is unique in that it only happens to women undergoing this certain type of life change – this specific surgery. It’s much more than just a bout of the blues. It isn’t a weakness or flaw in character, nor is it something that you can simply “snap out” of. No – this type of depression may require long-term treatment. Stanley West MD, author of “Hysterectomy Hoax”, wrote “…this is much more than the blues; it is serious enough to require hospitalization for some women, lengthy counseling and drug treatment.” The chemical imbalances brought on by castration can lead to a woman becoming clinically depressed. And if the depression continues, then suicide becomes a genuine risk factor.
Is There Help?
So, where exactly does a castrated woman turn for help? Since this type of depression stems from an imbalance of hormones that includes the loss of vital estrogens, progesterone, and androgens, hormone therapy becomes all the more important since it raises those levels again to some extent. However, castrated women may also require a wide range of hormone supplements. Combinations of estradiol and estriol may be necessary and these should be balanced with progesterone and sometimes testosterone. DHEA might need to be added too. Because sex hormones are important to so many other hormone systems in the body, a woman who has undergone castration may also need supplements to help with her thyroid and adrenal glands.
For counseling, reach out to the resources in your area. A brief list can be found here.
Castration requires close follow-up care. And yet, very few doctors seem to be seriously engaged in helping castrated women regain their health and vitality. This is yet another reason women become depressed. There’s really nowhere to turn for help. Instead, most women find out very quickly that all of their post-surgery “complaints” will be dismissed as a mental problem of some sort. ACOG mentions only one reason for “emotional changes” post-hysterectomy: “Some women feel depressed because they can no longer have children.” Personally, I’ve not heard from one woman who said they felt depressed for this reason. The women I hear from tell me they’re often made to feel that nothing is “really” wrong with them – that it must all be in their head. In short, they’re made to feel “crazy”. But the issues are real. Read any of the stories below and there is no doubt that the suffering is legitimate. Hormones impact brain chemistry as well as every other physiological system in the body. Remove a primary source for those hormones and there will be problems. How can there not be?
The Reality of Ovary Removal
This is what women who have been castrated say about their lives post-surgery. Let me warn you: it’s not pretty. Please note that some comments have been edited for brevity. It’s the same story over and over and over again. Only the names change.
“I have not been the same woman since my hysterectomy. Within one week of surgical menopause, at age 42, I became clinically depressed. It went downhill from there — no sex drive, weight gain, anxiety plus depression, bone loss and energy loss. Basically, I’ve felt like I was falling apart. I have been on the estradiol patch and an antidepressant since my hysterectomy. I would have kept my ovaries if I had known what would happen.”
“I had a hysterectomy 2 years ago. Since then, I have had nothing but trouble. The surgeon took away my ovaries, so I have no estrogen in my body – only testosterone. This makes me very angry all the time. I refuse to take HRT because my mother had breast cancer. I have no interest in sex whatsoever, and am on anti-depressants all the time. Hysterectomy has ruined my life, and if I could go back, I would not have had it done. I would have just put up with the fibroids. My advice to anyone contemplating this is to think long and hard. If there is an alternative route you can take, do so! I would not wish this on my worst enemy!”
“I will be turning 40 this year and 3 years ago I had my hysterectomy. Ever since then, I have not been the same. I’ve gained weight, have hot flashes, aches and pains everywhere and am moody. If I had to do it over, I would never have a complete hysterectomy. I used to be full of life and now all I want to do is hate the world or cry over everything.”
“When I woke up in ICU almost 24 hrs later with a tube in my throat I motioned for a pen and wrote the word hysterectomy with a question mark. I don’t know how I knew, I just did. After the doctor carelessly punctured my uterine artery he decided that the best way to fix his mistake was to take out everything that made me a woman. He nearly killed me. They had to give me 15 units of blood while they frantically carved out more and more. He never even came to see me after he butchered me to explain what happened or why he ruined my life and my families’ future. I have never seen him again. I am 35yrs old in surgical menopause. Some days I wonder if my young husband will leave me for a woman that can still have children. I have never posted a comment on any site about anything. I read your story and felt that you were the first person that knew what I was feeling.”
Sadly, there are more similar hysterectomy comments and stories on my website which I refer to as “hysterectomy hell”. You can read those stories here and here. There are forums and blogs all over the Internet too where women gather and pour out their inner-most feelings about their lives after surgery. Most women can’t sleep, so they reach out during the night for help, seek answers for what’s happened to them and otherwise just try to fill the void.
Families of Women Who Have Been Castrated
One adult child wrote about her mother’s hysterectomy:
“After we moved to a ranch house in an exclusive residential suburb of Minneapolis when I was 8, my mother stopped singing. That wasn’t the only change in her during the summer of our elevation from middle- to upper-middle class. Her hair seemed to turn white very suddenly and her personality altered just as drastically.
I learned to test the air when I got home from school, trying to discover what mood she was in that day: playful, full of games and secrets, or grim and tight-lipped, on the edge of tears.
Later, I discovered from old medical records that Mother had had a hysterectomy during the summer of our move, when she was only 38. Being plunged into early menopause could explain her mood swings, I now realize, the tearful scenes, the tranquilizers, but then my 8-year-old mind developed a theory that my sweet, raven-haired mother had somehow been kidnapped and replaced by a white-haired virago who resembled her. I remember poring over the family photographs in the mahogany sideboard, trying to determine when the substitution had taken place. Mother never sang to us again after that summer and when we asked her to, she replied that her voice was gone: ‘I’m too old to sing’.”
I could share so many more heart-wrenching comments and messages like these, but I feel I’ve shared enough to substantiate that women who undergo hysterectomy and castration, especially when uniformed, misinformed or not informed at all, suffer beyond words really and so do the families. There’s certainly no shortage of post-hysterectomy horror stories. Maybe woman who undergo hysterectomy and castration to save their life are better able to cope. I don’t know. What I do know is that far too many hysterectomies are performed for other reasons and many of those women feel extremely betrayed. They never get over it as the many comments here suggest. In the case where there’s no consent, hysterectomy and castration is considered assault and battery. That’s criminal and that’s a very big deal. Women who’ve been surgically “assaulted” have even more trauma to come to terms with. There’s not much a woman in this situation can do other than file a medical malpractice suit against her doctor. Maneuvering and enduring the legal system is yet another nightmare all its own and isn’t a reality for most women (“victims” in the case of unconsented surgery).
There can be no question that so many women are experiencing profound depression. This is not something we can continue to ignore. This is a very real problem everybody should take seriously. After all, we’re talking about over half a million women going through this every year just in the United States alone. From a public health point of view, depression is a substantial illness with significant morbidity for patients (and their families). If the depression continues, then suicide absolutely becomes a genuine risk factor. It is so important for families of women who’ve undergone hysterectomy and castration to realize how serious the resulting depression can be and what it can lead to.
Personally, I’d love to see a huge drop in the number of women undergoing these mostly “unnecessary” and “elective” surgeries. Until such time, we’ve no choice but to begin this discussion in hopes of saving precious lives. Depression can be managed only when we talk about it openly – when there is no shame. Managing depression may include: hormone replacement therapy, talk therapy, proper diet, exercise, meditation (including prayer of course) and medication too if necessary. While I’m no psychologist, I can tell you what has helped me survive post-hysterectomy depression. I’ve learned that it is critical to fix what’s fixable. Restore balance back by doing what you’re still able to do – whatever that is; it will be different for every woman. Like the “Prayer of Serenity” change what you can, deal with the rest. We all only have so much energy left after such a life-altering surgery, so we need to learn to focus and use our energy on things we can change. This is by no means easy to do.
My Story
To be completely honest, I still struggle with depression since my unconsented hysterectomy. I guess I always will. And yes, I’ve been suicidal at times too. And while there may not be a “cure” for this type of depression, it helps a lot for women to know and understand they are not “crazy” or alone. Before social media and personal computers, women mostly suffered in silence. There’s no need for that today though. A doctor from Australia who specializes in menopause and hormones once told me not to waste what I’ve suffered and so I’m trying to follow his advice. Specifically, he said
“You can’t waste what you have suffered. Others need not just to know, but to understand the depth of that hole, and how hard it was for you not just to climb out of it, but how hard it was to even have the energy or will to turn around as you plummeted to the bottom. And more than anything, they need to know that you can!”
So, we absolutely must start talking about the hysterectomy hole. We must share our stories so that others do not suffer as we have. And doctors too must stand up and speak out. If you’d like to share your story here on Hormones Matter, Write for Us.
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- change.org petition: Help Stop Unnecessary Hysterectomy and Castration
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This post was published previously in July 2014.
I was a very happy woman who NEVER suffered any gynaecological problems in the 58 years I had my female organs FULLY INTACT. Nobody warned me that 90% of hysterectomies are UNNECESSARY and beware of any doctor who fabricates non-existent female problems, especially non-existent cancer to con healthy women into radical hysterectomies for profit or training practice as what those shysters did to ME.. My health and my life was completely distroyed because I trusted rogue doctors… He is just a tiny fraction of what I suffer every day… A hysterectomy ruined Teresa’s life. She wants to warn others
thenewdaily.com.au/life/wellbeing/2018/02/11/unnecessary-hysterectomy-australia/ ….The 2 gynacologists at Monash Health lied through their teeth as Monash Medical Centre surgeon bullied and threatened me into the surgery when I had nothing wrong to start with….
Teresa Lovejoy was told she had “no other option” but to have a radical hysterectomy – the removal of her cervix, uterus, fallopian tubes, ovaries and some lymph nodes.
But the doctors were wrong. All those parts of her anatomy were healthy.
Twelve years later, Ms Lovejoy, 70, from Hallam in Victoria, endures constant excruciating pain, incontinence, and anger that she let herself be pressured into major surgery she never needed.
Sometimes I wail so loud, I think the neighbours might think I’m dying.
During an annual pap smear, Ms Lovejoy, a former office worker for over 30 years, was told she had post-menopausal bleeding, despite not reporting “a single drop of blood”.
Doctors scraped off the lining of her womb (a procedure called ‘curettage’) but discovered a malignancy they told her could only be removed by a radical hysterectomy.
Ms Lovejoy said she “begged” for an alternative but remembers being “yelled at” by her gynaecologist: “‘You should be lucky you don’t have to have chemotherapy like all those women out there in the waiting room. They weren’t so lucky’.”
Despite feeling railroaded and rushed by her gynaecologist, Ms Lovejoy signed a consent form to undergo the procedure because she “knew no better”.
Two days after the procedure, Ms Lovejoy discovered she never had cancer to begin with.
“How else were we going to find out if you had cancer unless we cut out your organs?” she recalled her gynaecologist saying.
Ms Lovejoy asked about her ovaries, which were permanently removed in the procedure, and was told: “They’re useless anyway after menopause.”
Ms Lovejoy’s story is, according to one health body, part of a wider problem of unwarranted hysterectomies being performed in Australia.
International non-profit women’s health organisation, the Hysterectomy Educational Resources and Services (HERS) Foundation, has counselled 312 Australian women over the past two decades who were told by gynaecologists they needed a hysterectomy.
HERS has referred thousands of women to certified gynaecologists who are experts in certain conditions such as fibroids, endometrial hyperplasia, uterine prolapse or endometriosis.
HERS founder and president Nora Coffey told The New Daily that only four of the 312 women in Australia had a life-threatening condition that required a hysterectomy.
One woman had early-stage ovarian cancer, two had confirmed cancer of the uterus that had not metastasised, and one had a postpartum haemorrhage.
In the other 308 women there was a conservative alternative to hysterectomy, including no treatment, Ms Coffey said.
“The majority of hysterectomies performed in Australia and other countries were for fibroids, heavy or irregular menstruation, or pelvic pain.”
Alarmingly, not one woman was told of the damaging effects of having their female organs removed, according to HERS.
Many women were also made to feel that their concerns were “foolish”, Ms Coffey said.
Danny Vadasz, the CEO of Health Issues Centre, a consumer health advocacy organisation, said the HERS Foundation finding “does not unfortunately surprise me”.
We are aware that there is a broader problem in the health system of Australia of unnecessary and avoidable surgeries being conducted.
The complications most frequently reported to HERS after hysterectomy include loss of sexual feeling, loss of libido, severe depression, diminished maternal feelings, joint and muscle pain, severe back and hip pain, cardiovascular disease, chronic bowel and urinary problems, debilitating fatigue, chest pain, insomnia, panic attacks and heart palpitations.
According to an international medical journal, the rate of hysterectomies performed in Australia significantly decreased between 2000 and 2014, with an average annual 2.8 per cent decline.
Medical director Dr Elizabeth Farrell at women’s health organisation Jean Hailes said the Mirena IUD, a small contraceptive device inserted into the uterus, has made significant inroads in reducing the rate of hysterectomies because it has treated heavy periods in women “so well”.
Dr Farrell said a hysterectomy should only be employed when non-surgical treatments fail.
When a “women’s quality of life is impaired by constant, persistent heavy bleeding”, a hysterectomy could offer a permanent solution, she said.
A 2017 report in the Lancet medical journal found up to 70 per cent of hysterectomies in the US were unnecessary.
The second Australian Atlas of Healthcare Variation expressed concern about the overuse of hysterectomies for the treatment of non-cancer conditions.
However, Professor Beverley Vollenhoven, head of gynaecology for Monash Health, said: “There are a lot of women who have had hysterectomies and are incredibly happy at the end of it because their life is so much better.”
Monash Health only offers surgery if non-surgical treatments are not viable or have failed to treat heavy bleeding in women, Professor Vollenhoven said.
Common non-surgical treatments include the use of a birth control pill, contraceptive injections, tranexamic acid tablets or the Mirena IUD.
Dr Charlotte Elder from the Royal Australian and New Zealand College of Obstetricians and Gynaecologists said “non-surgical management of gynaecological problems is booming at the moment”.
Patients should always understand that it is OK to ask their doctor questions, she said.
“Unless it’s an emergency, lifesaving situation, you don’t need to rush into any decisions.”
I had my ovaries and uterus removed and have never been the same
Worse is later the doctor that removed them lost his medical license for doing unnecessary hysterectomies.
He went from a booming gyno to now a truck driver
I feel he ruined my life
Now at age 52 I feel I am having a nervous breakdown
This is wrong and something needs to change
I prob didn’t even need a hysterectomy
It’s so sad
I have attempted suicide twice yrs ago. I don’t understand why 25 years later I feel even worse.
I want to crawl in a hole and die but my kids keep me from that
Thank you making others aware
Debra
Sent from my iPhone
My mother took her own life 8 days ago. She had a full hysterectomy and ovaries removed to treat endometriosis. She fought so hard the last 20 years trying to get her hormones under control. She spent thousands upon thousands of dollars but they couldn’t ever get them right. Until now, I never fully understood what my mom was going through. We spent 10 of the last 20 years estranged from one another because she became so mean. I didn’t know what happened to her. I thought she just had mental health problems. Everyone around her did. When I reflect back, I remember how happy and content my mom was before the surgery. We were so close and then we just weren’t. I see now that I didn’t lose my mom 8 days ago – I lost her 20 years ago when she was castrated. She was never the same person. I miss her so much.
Ladies, my sympathy and empathy. I thought I was alone…. I had surgery (complete with a ton of bonus complications) 7 months ago. I’m in pain every single day. Walking hurts, if someone physically touches my stomach it hurts. Had a gyn exam with yet another useless doctor 3 days ago and my insides literally feel like I got punched from the inside out. Due to damage done to other organs during the procedure I now realize that this is now my life. I am not okay and realized just yesterday that who I was died on the operating table. To those that think it’s because I “no longer feel like a woman” they are so wrong. I no longer feel human, big difference. I am on doctor #4 post surgery due to the surgical complications. I’ve been prescribed antidepressants by two doctors (it’s obviously “all in my head”). I refused to take them. I do not now nor have I ever suffered from depression. I have physical issues, I don’t want a psychiatric medication. I want someone to LISTEN and realize I need help for physical issues, not mental. Doctors suggested I see a psychiatrist as it’s “all in my head”. Because my husband asked me to, I did see one. She wanted to put me on multiple medications for depression – automatic to “all her post-hysterectomy patients”. Last time I will EVER see a psychiatrist. “Oh you poor thing, not having a uterus doesn’t make you less a woman!” I walked out. I am on premarin and have begged doctors to look at my bloodwork numbers and realize I need PHYSICAL help and to quit saying it’s in my mind because I can no longer bear children. So wrong, me and my husband deliberately chose not to have kids. Now I’ve gained 47 pounds, look 9 months pregnant and sleep less than 2 hours a night. Added bonus, I’m also going bald. I was lively, very active and lived life!!! Now all I want to do is curl up in a ball and stay there. My poor husband, I saw him cry the other night for the first time. Why? He saw me reading an article about a suicide prevention barrier that will be put up at a local bridge many have jumped off. I think he thinks I was considering jumping. I was actually thinking about how I used to enjoy driving the bridge at sunrise with the windows down – and it’s something else old me used to do but new me doesn’t. Head high ladies, I have hope. I can’t fix me and no one else can either because they have a preconceived notion of what is wrong instead of listening. The more women that speak out MAYBE someone will eventually listen. I understand some women really do need this procedure for health reasons. Where the biggest flaw lies (my opinion) is that proper follow up care and the preconceived notions of medical staff about the after effects need to be addressed. It’s physical and it’s not in my head.
I am the opposite. I had severe depression to the point that I debated suicide to just end it more than once. I was in pain most of the time and would bleed at random. My family doctor thought I had endometriosis, but we then discovered I had a large polyp and early signs of uterine cancer. My only blood Aunt on my dad’s side had similar issues and had to have a hysterectomy much younger than me, so I wasn’t too surprised when they told me what they found.
My husband was still undecided about children. I was adamant from the very beginning that I didn’t want any, telling him on the third date that I didn’t want kids, didn’t like kids, and was pretty sure I couldn’t have kids. Add to that my age, other health issues, and genetic concerns on both sides, I knew it was not a good idea and did not want to be a mom. After my laproscopic surgery, the doctor gave me three options: monitor it, medication and monitor, or total hysterectomy. I chose option three and told my husband he had his answer. With my consent, they removed my cervix, uterus, fallopian tubes, and ovaries. It was done with robotic assistance and I was up and walking just a few hours later (in the hospital with a nurse) at my own insistence.
It’s been months now and I am doing so much better, both mentally and physically. My body healed really quickly–the doctor said he had never had a patient heal as fast as I did. I had the surgery before cancer could grow and spread, so all traces of it were gone. My libido slowed down a bit, but still works (when and if my husband even bothers to try). I can still orgasm, it just takes me a little longer (used to take me less than a minute, so this is a bonus for my husband). My depression and anxiety are not as bad as they were before, though I am quick to anger more often now. Ironically, I have the mental state as I did in my early 30s and have the same energy, minus what my arthiris saps from my knees thanks to Lyme disease a couple years back.
There isn’t a right or wrong answer for everyone. You have to decide what is best for you and your situation. I know a lot of women feel empty because they are infertile. For me, that was a huge pro to having it done. I knew my mind would never change, and it was confirmed that it would have been extremely difficult to conceive even if I wanted to. This was why I told my husband from the beginning: I hate kids and already helped raise two when my parents divorced. Unfortunately the anger is genetic: my dad’s genetics are all fight and no flight. Just an example of one of the traits I did not want to pass on to a child I didn’t even want. And truth be told, I probably wouldn’t be so agitated if I could change my job and living situations, and if my insurance would have actually helped with my medical bills.
If I could go back in time, I would make the exact same decision without hesitation, as I did the first time. It was the right decision for me. I traded my non-functioning child-bearing parts for my life, and no one could ever tell me I made the wrong decision. My life is more important to me than anything in the world.
Most doctors are giving women synthetic (non-bioidentical) hormones, which just eliminate the symptoms, but it’s doing nothing to actually replace the hormones you have lost. Without our hormones we die.
Thank you for this article. I had never thought of the loss of my ovaries in such a manner but it was horrific. I am a DES Daughter and lost both ovaries following ectopic pregnancies. Waking up from surgery was so horrific and I can hardly explain but remember how horrible it was till this day.
Have I ever been the same…. I have not. To loose your ovaries at 26 was devastating!
First I want to apologize if any of part of my comment comes across as rude in any way, because I promise that I am not meaning to do that at all! And yes, I do also know that I don’t need to comment on your post here if I don’t agree with it, but I just feel too strongly about what I have to say. But most importantly, I also feel that maybe if you could hear my relatively quick story also on this whole subject & considering that I’ve just recently experienced a radical hysterectomy also, almost a month ago at 40 years old… hopefully you can see another side to it & help all of us in another & more positive way!
Yes, a little over 2 months I begged & finally got my amazing gynecologist to refer me to a specialist (gynecological oncologist), to PLEASE do a radical hysterectomy – the whole female she-bang!!! *No pun intended?♀️! I had just turned 40 years old 1 month prior & not only had my endometriosis pain & hell come back with a vengeance & worse than it already was every single month since age 16 years… BUT now I had also just found out in the couple of months prior, that my recent Pap test, biopsies & other ‘FUN’ doctors visits had revealed grade IIIB Cervical Cancer!!! I didn’t even bat an eye at my newly discovered cancer….. WHY??? Because I had already lived through MANY HORRIFIC YEARS of diagnosed PMDD & POST-PARTUM DEPRESSION ~~~ TWICE, even though both of those very serious issues weren’t ever fully taken as serious as they should’ve been!!!! I knew all along that it was my “DEVIL HORMONES” (as I always referred to them), that literally had almost killed me too many times to count, as everything would get so bad as much as almost 2 weeks before my menstrual period each month! I would only have maybe 2 weeks a month where I felt relief & like a human!! The depression, anxiety, back pain, mental fog, joint & muscle pain, severe mood swings, fatigue, sugar ‘obsession’ (literally) due to dangerously low levels of progesterone, feelings of disassociation & just not wanting to live because everything was so overwhelming, so irritable, night sweats & COUNTLESS other terrible symptoms at these times turned me into someone I hated! I ended up telling my husband that I wanted him to find someone better for him & our kids, because I felt so bad for what they had to deal with all the time!….
Fast forward to 2 days after my hysterectomy & I was a new person!!! Also I forgot to mention that I knew I didn’t want anymore children, so that may have helped my thought process also… NOW, that doesn’t mean that I wouldn’t have had another if I could’ve & also wouldn’t have had 7 MISCARRIAGES, & also 2 really hard pregnancies! I just know that the 2 children I have already ARE a gift & miracle from God, so I am SO blessed with them & will not push my body any further! But I kept waiting for these horrible “forced surgical menopause” symptoms to come & yeah, I have noticed some small issues with waking up more at night than before & surgery recovery with constipation, etc., is never fun… & just yesterday for the very 1ST TIME EVER, I did experience a severe & horrible nervous breakdown type feeling which is how I ended up here, on your page, while searching google… because with EVERYTHING I do or whatever I’m going through… I RESEARCH IT TO DEATH!!!!! Now in the meantime & while I was searching about my issue & reading your page, I also called both my surgeon & my gynecologist about what I experienced last night. Well we all together, brainstormed & finally realized that I it was due to me just recently (2 nights ago) starting back on my migraine medication – Topomax!!
Why did I go through all of this, you ask??? It’s because I wanted to make a few points to the other side of this for those coming here looking for help – even maybe if it’s only for someone reading the comments that may need to hear it. And please don’t think I’m bashing this article because I could & would never!!! Not one person should feel bad for how they feel about anything, giving their opinion, trying to help others & more than anything NOBODY should be forced to have ANY kind surgery at all… especially this one… And that is not ever ok; It actually makes me really angry it’s happening! But I’m just saying to ALWAYS do your research & never be afraid to go to 1000 doctors, specialists or more until you are heard! You know you & your body & YOU are the only one who can help YOU! Also please understand that our hormones are VERY COMPLEX & they can absolutely wreak havoc on us whether we like it or not! I tried so many things for so many years & due to breast cancer in my family, I was refused many forms of birth control for my hormones because of the estrogen they contained – even low dose ones! It was also HELL trying to figure out which ones did what to where! Nobody deserves to live a life like that. Also please just think of the many women who have no choice when faced with ovarian cancer, or endometrial & cervical cancer that has spread & they are forced to have everything removed, when truly given all options by a good & genuine Ob/gyn/oncologist, who does care & who is trying to save their lives!!!! Don’t make them feel worse for this new way of life… HELP THEM (& maybe even yourself) in WHATEVER WAY YOU CAN, to start over better & still the beautiful, powerful WOMEN we ALL ARE ♥️♥️ This isn’t a death sentence & each new day is a new day for us. There’s so many things out there now that CAN HELP, & all we have to do is look & find it! Thank you for being a page where others can come to see they’re not alone.. but please don’t make it a negative thing!
I’m 38 and had one ovary removed over 3 years ago because of stage 4 endometriosis now I’m post hysterectomy/oophorectomy 3 weeks today. 2 weeks post surgery I started noticing I would cry on a whim. Had a nervous breakdown practically crying hysterically my husband had to calm me down. I literally feel like my body is falling apart on me. My emotional and mental health feels like it’s on a roller coaster. Fine one minute and crying the next. Nightmares every time I fall asleep so I was sleeping 1 to 3 hrs at a time since coming home from surgery. Waking up covered in sweat every time I slept. Hot flashes randomly throughout the day. Racing thoughts.
Feeling like a different person. Exhausted all the time. Finally was seen by the dr 2 weeks post op and he put me on the lowest dose of estrogen he could. My vision is now blurry and I have migraines every night.
I wish I had a choice in the matter but I didnt so I had to have the surgeries. The surgery which was supposed to be performed in under an hour took the 3 surgeons almost 4 hours. The endometriosis had taken over my left ovary merging it to my uterus and side of the vaginal wall. So they had to first separate the organs before removal. My surgeon stated it was good they got to it when they did or my vaginal wall would have probably been perforated from the amount of endometrial tissue they found.
The pain I dealt with since I was 12 and the amount of bleeding I wouldn’t wish on my worst enemy. Hotflashes and nightsweats since I was a preteen because my ovaries had endometrial tissue all over them. My hormones made me crazy. Food cravings were bad. Fluctuations in weight. Bleeding to the point of having to change my clothes or stay home from school or work. Feeling so fatigued I would spend 2 to 3 days in bed pale as ghost. Anemic all the time. Excruciating pain thinking this was normal period cramps and then finally realizing it wasnt normal.
So now I’ve been on estrogen for a week and actually see a big difference I’m not crying at all but the vision is blurry which stinks and the migraine headaches at might. I’m praying I feel normal at some point.
Amy – I am so sorry that you have had to deal with cervical cancer, and it really sounds like you had some serious challenges. But, I must tell you that the after affects of having a hysterectomy are like a slow moving car crash, you may not experience problems right away, but within the months or years to come. I felt “great” in the beginning and now at 8 years post op, I am truly living in my own personal hell. I am not trying to be negative, but this is just the honest reality of having this procedure. I am now dealing with the many skeletal and anatomical changes this surgery has created, not to mention the loss of very important hormones. I feel chemically altered and broken. In my personal case I had fibroids, and should not have went through with the hysterectomy to “fix” it. Your situation was much more serious than mine, but I truly regret having this done.
At 40 I had a total hysterectomy due to endometriosis. I tried bioidentical hormones for less than a week. That was the only time I felt “crazy”. I had every PMS symptom & felt a total loss of control of my emotions. Before & after my surgery I struggled with weightloss, depression, anxiety, sleepless nights, hot flashes. I tried to control my food, I knew sugar addiction was a huge factor in my ups & downs. Extreme adrenal fatigue was another. GET YOUR HORMONES CHECKED-Salvia test-not just blood! It’s eye opening what you can realize & give yourself Grace for your feelings & behaviors bc your test results will prove its real, there’s a chemical reason you’re not yourself. I couldn’t correct things on my own. I didn’t want medication. Thankfully a friend told me about Yoli. I’m not trying to sell anything but it helped me eliminate foods, lose weight w out extreme excercise or dieting, helped w my mood & energy. I seriously am not sure how I would have gotten out of my post surgery condition without it. I still struggle. Hormones are not leveled out but I haven’t felt this good in years! My surgery was the best thing that could have happened. My body was a wreck. I’m hoping everyone on these posts can find a solution to feeling better & healing mentally from imbalanced hormones. Seek a hormone therapists that doesn’t push medication but individual solutions to healing. Take time for yourself. I had to force myself to slow down, rest, give up stressing about things I couldn’t control.
I have been very sick years after the castration too. Luckily i had children. Why can’t doctors remover a womens eggs beforehand, at least she would have a chance to use a segregate and could have children that way. From Margaret.
I am just begining the fight for my uterus, I have a large degenerating fibroid that they say may or may not be sarcoma, but they will not do any testing other than ultra sound and MRI, NO blood work and no biopsy, I have very little symptoms and no pain from my fibroid, just some heavier bleeding during my periods, ( I was a two day) now its 4-6 , The first OB I saw told me it was cancer and he was taking it all. I said its cancer?? he said well it might be wont know until we remove all your female organs and check it , why are you taking my ovaries?? well your 47 your done with them will we just get rid of them.. I lost my mind!! Second OB told me it was not cancer and not to worry but was still going to do a full hysterectomy leaving my ovaries( or a part of one ) NOPE not good enough, I am now waiting to go to a womans clinic in Toronto Ontario. They have already told me I am to old to consider myomectomy??? But Hysterectomy is not an option. IT WILL KILL ME> I already know this and fear it will all my might. the fight will be long and hard.. Please can you give me the words to speak to the OBs that will help me to get them to see things my way?
Julie Lester – I know your post is from months ago, but I am a fellow Canadian from Alberta and made the BIGGEST MISTAKE of my life having a hysterectomy. DO NOT let them talk you into a hysterectomy! Hysterectomy will greatly increase your chances of developing heart disease by 3x, it also increases your chances of parkinson’s disease, and alzheimers! And this is just a few of the major side affects. Please order a copy titled “The Hysterectomy Hoax” by Stanley West. You can get a copy of his book from amazon. I believe you can also contact Dr. Stanley West? But, I am not sure if he is retired now or not? You can also speak to Nora Coffey at the HERS foundation. If I had even known a bit of what I know now, there is NO way I would have consented to this “Butcher Surgery”.
I had a hysterectomy with oopherectomy 9 weeks ago to stop the crazy bleeding and to ensure the oestrogen dependent cancer I had didn’t come back. Now I feel like a totally different person, I’m nothing but a shadow of the strong woman I was who fought breast cancer with grace and dignity. I feel like I’m losing my mind most days and the only thing doctors know to tell me is I can’t take hormones, and this will pass. I don’t know how to claim my life back!!
You wrote this in 2017, but everything you wrote is how I feel! I beat cancer, but can’t beat this depressed, anxious person I’ve become after a total hysterectomy.
I would research studies of women taking estrogen replacement even with estrogen dependent cancers… women do… knowing my quality of life without bhrt, I would like to think I would take the risk because: quality over quantity. My life without hormones was no life at all…. much love
I do sympathise with everyone here but I had a hysterectomy removal of my last ovary and cervix at 39 and I am 53 now. The years proceeding from this operation with HRT have been the best years of my life. The torture of constant hospitals, heavy bleeding , operations and pain nearly sent me demented! The doctors didn’t want to do it but I pleaded! It was the best thing I ever did, I have no children but I got my life back and for that I will always be so very grateful
I had a partial hysterectomy the month after I turned 30. I have had depression every since then. I am now 54 and about three months ago I was having mood swings like crazy. I went to the doctor and had a blood test it showed I had no estrogen or testosterone and so she put me on a hormone pill with both in it. It worked for a month and then it came back severely so she added a estrogen patch now I am so depressed that all I want to do is cry. Does anyone have advice for me?
I had my total hysterectomy Aug. 29, 2013. I have been battling ever since and only just considered my hysterectomy as the culprit. I should have known sooner as my best friend committed suicide 7 years after hers. I have things wrong with me more so than ever before. I just did not blame it for my anxiety and depression as I had those before (I was a caregiver for 8 years, my grandmother had dementia). But, now that I look back I was recovering after her death. Until my hysterectomy. I now have anxiety, depression, incontinence, IBS, fibromyaligia, high blood pressure, C-PTSD, and sever fatigue and brain fog. I am so tired, and I am fighting every day to save myself from myself. I don’t want to live any more. My marriage is suffering, my relationship with my child. No one understands, and I feel so lost and unloved, and unable to go on. I found this article, because yesterday I remembered my beautiful girl friend. How she battled afterward, I remembered blaming her hysterectomy for the changes I saw in her. That is what made me say, maybe I don’t have everything the doctors say I do. Maybe, just maybe this is all the cause of my uterus & cervix being removed. I was told I would die if they did not take it, but my tumor was not cancerous. After I read your article I wish I would have taken my chances with the tumor. I turn 48 this year, and I want to be happy, I want to live. Thank you for putting this out there, I am not crazy!! Not sure if knowing this will save my life down the road. But now I have a place to start from, and I know that my friend was castrated in essence she was murdered, and it was a slow and painful death. Thank you
May 23, 2008. I thought it was just me. I am relieved, yet sad, to see so many of the stories on here. I have been so down for so long and literally have planned my suicide. Fortunately I am stronger than those thoughts and I could not do that to those I love and leave them to deal with it. What I do not see here is any solutions… any ways to cope…any medical advice. I thought of hormones but it seems they are not helping from what I read here. Any advise?
My 45 year old exgirlfriend had a castration about 3 weeks ago. She had endometriosis really bad for the past 25 years and the pain was so bad that she decided to get the castration. Since the castration, she has totally changed from being outgoing and happy to depressed and fatigued. She broke up with me about a week after the operation because she felt like a broken woman and that she didn’t need me in her life anymore. I just wanted to give my perspective. Thanks
wow your story is so powerful and emotional. I commend you being so open and honest about it with the readers. I went through menopause at an early age and was unable to have children. It tore me apart and I struggled with depression afterwards and my life was turned upside down. I have found reaching out online to seek the advice of others has helped me through the good and bad time. I had a ton of issues with my midlife crisis and have started to follow the advice of Dr. Robi Ludwig. I saw her on a tv show once and I really appreciated her take on current psychological issues. She has written two books but my favorite book is with Your Best Age is Now I have read it and loved it! I highly recommend it to anyone out there struggling with dealing with midlife. I got hit hard during my 40’s and this book really helped me to become a better version of myself.
I had my operation to remove my last ovary due to early stage2 ovarian cancer.I was lucky to have caught it early.Unless you have been through it, no one can understand the cost to one emotionally,for a while there I was feeling on top of the world even telling people I should have been on HRT years ago.The truth is that I feel so alone,I cry myself to sleep every night and have become so reliant on prescription medication just to get through the day.I am now just a former shell of myself inside and out. Is there light at the end of the tunnel or do I live like this forever.
Dear Robin,
THANK YOU for writing this and sharing your story! I have felt so alone in the aftermath hell of my castration. Just knowing I’m not alone, you plus many others not only understand but have/are going through some of the exact same ailments. I too feel as though I lost myself on the day of my hysto, which will be 1 yr coming up on the 9th of October. We deserve better!
I wish I would have found this site sooner, thank you for sharing all the stories. I have read all of these replies desperately looking for answers for my situation. I don’t even know where to begin. I had a couple abnormal pap results come back and a lot of pain suspected endometriosis and fibroids so at age 35 I decided to have a full hysterectomy with both ovaries out. After this surgery my nightmare became 1000X worse. 4 months after the surgery I came to find that I had 2 masses sitting on top of my urethra and no one knew why. I was in a lot of pain and the ER doctor suggested I go to a urologist because I was having trouble using the restroom and my kidneys were starting to not function. After the appointment with the urologist I was scheduled for surgery to place a drainage tube in my belly to drain the masses after they did a procedure that ran dye inside to see if I had any other blockages. After the tube insertion my husband had to drain it and measure how much fluid was coming out every day. A week later the tube was taken out and I was much better. 4 months later the same pain started again so again I went back to the ER and was told that I again had these 2 masses. This time my GYN decided he would go up and put a slit in them to let them drain like I was having a period again. I woke up from this surgery feeling wet and when I told the nurse she immediately replied oh that is normal you are going to feel like you are. I insisted that something was wrong so finally the nurse lifted the blanket they had on me and there was blood everywhere, here the dr. had nicked an artery and immediately I went back into surgery to stop this bleeding. After coming home from the hospital from these 2 surgeries I was still having pain and finally was refereed to another specialist. This specialist did some further testing and told me that my GYN had left a partial ovary on the one side and that is where the drainage was coming from. This new doctor scheduled a Davinci robotic surgery and two weeks later I had this done a year almost to the date from the first surgery for the hysterectomy. Apart from an allergic reaction to the tape they used and my five incisions having what looked like burns around them everything was good and I thought my nightmare was over 8 surgeries between January 2012 and October 2013 but I made it.
I had a great year in 2014 and I was the happiest and healthiest I had ever been. I had previously lost 75 pounds and walked 5 miles a day and loved taking my retrieves around our neighborhood for their walks. I always had music on and loved cooking and singing. My life was wonderful until the bomb came. I simply can not explain and so far no doctor has been able to explain to me what happened. In January of 2015 it was like a switch in my brain turned off over night. When it first started I remember saying something is very wrong and I don’t think I can stop this. Let me just say that I had always been a fighter. I lost most of my vision suddenly when I was 15 and retaught myself how to do everything depending mostly on my other senses, there was nothing I could not do and if I found something I couldn’t do I kept trying till I could figure out how to make it work. I even pushed myself to get a Masters degree in Rehab Counseling so I could help others. Anyway I remember just sitting here in my rocking with a blanket around me like I was trapped inside my head and no matter how much I tried I could not make myself do a thing. I could barely shower or even make myself something to eat. Since January of 2015 I have been going to dr after dr begging for someone to help me, from gynecologist to neurologist to homeopathic doctors and still I am a shell. I am not functional at all and no matter how much I want to do something it is like a wall is up in my brain and no matter what I try to get it down it only gets higher. My brain simply just wont turn off. I could go a week and not sleep and the constant headache and desire to just die. I find myself praying for God to just take me home so I do not have to face another day like this.
The first Gynecologist I went to told me it was just depression and put me on an antidepressant and sent me along the way although I insisted something was wrong with my body. Over the course of 2015 I did the whole psychiatrist/depression/its all in your head thing. ECT was also suggested for me as I just wanted to die since no one could find a fix for this person that I had no idea who she was anymore. The loving, happy, singing, smiling, beautiful woman that I had become in 2014 was totally gone. I even began telling my mom that I wished I was never born because the pain and the constant hell I am in was so not worth living. Psychiatrist tried me on what I know was at least 10 different medications that did nothing and finally another dr. decided to take me off of all the medication and start over and this brought on panic attacks which I had never had before and induced Akathesia(an involuntary condition brought on by antipsychotic medications that prevents you from sitting). I walked around my house constantly for 5 weeks without sitting only to able to stop walking when I actually slept a few hours a night.
I finally said I know it is not in my head and found another gynecologist in October of 2015 that started me on Premarin. This still was not helping so I was added Progesteron as well. Still after a few months went by still no changes only getting worse so the gynecologist switched me to Estratest.
My condition keeps deteriorating and I have absolutely no idea what to do. I never connected this to the hysterectomy because I had a wonderful year and 2 months from Nov 2013 to Jan 2015. After reading the stories on here I am now wondering if all of this that I have been through and still suffering from is from the hysterectomy. I have been told now from the holistic doctors I am seeing that I have leaky gut syndrome, my adrenal glands are not working since my body is not making cortisol, I have hyperthyroidism, estrogen dominance, low stomach acid, a high yeast distribution throughout my body and have 3 times the amount of lead in my body that I am suppose to have. I am taking 18 “supplement” pills a day, estratest, progesterone, busphar, and now ambien along with amitriptyline to try to get some sleep. My “mind” feels so disconnected that I can not do a thing. The only thing that I still have are my memories and I feel as it is a curse because I no longer can feel sleepy, tired, happy, or anything else. I just know that I can not live anymore stuck inside this body not being able to do anything but sit or lay in bed. I have gained all 75 pounds back that I had lost and I do not recognize the person I have become full of hate for life and myself. I have no idea what to try to do to get my life back if it is even possible. I miss myself and I am at a loss as to what to try next so any thoughts or ideas would be much appreciated.
Please have your Dr check your vitamin D3. It’s a serious hormone vitamin.
I’m really encouraging everyone who has blotched by this surgery and been castrated come forward and contact me directly at jacquihud@hotmail.com. I seriously believe that for those who have been injured need to come forward and we need to put this civil law suit together. Robin, again your thoughts on this.
THANK YOU! Reading this was so encouraging to realize I wasn’t alone. I had a miscarriage at 3 months last December and although I knew something was wrong with my body shortly after it happened, I couldn’t get my doctor to truly believe it. I appeared fine in most regards. But within days of losing the baby I had stopped sleeping. This went on for months, I would wake up in a puddle of sweat, I had no idea what was going on. Someone finally said I was experiencing night sweats. I was only 30. finally after 6 months I demanded a doctor to order a hormone test. Sure enough the results came back with my estrogen and progesterone far too low. I could have told someone that months ago, but no one believed me. I struggled with suicidal thoughts that I had NEVER even thought of before this experience. I have lost all motivation and my personality even has changed. I used to be happy all the time. Its a rare day that I feel that way now. I’m now waiting on bio-identical hormones and am praying they will work. This is a very real problem for women and I am so grateful that someone is speaking out about it.
Reading many of these is heartbreaking. I consented and very much wanted mu hysterectomy to be honest and wish I had done it earlier. I had both adenomyosis, which basically causes contractions similar to labor contractions, as well as endometriosis on both ovaries. I was never not in pain and sitting was agonizing. I tried every alternative treatment possible as well as conventional treatments. At 38 I was suicidal from pain and on heft doses of pain killers. I distinctly remember the moment of clarity saying to myself, “please god, take the plumbing out.”
I was a serious case and as I said, consented fully to my surgery. That said, my hormones were grossly mismanaged afterward and I had a kind of surgical post-menopausal shock syndrome. I was deeply suicidal, stopped going through all my sleep cycles, had absolutely no brain power. (I could no longer read because I could stay focused through even a single paragraph.) I left a job at a prestigious ivy league university as well as a PhD program.
Dr. after Dr. treated me as if it was all psychiatric even though I absolutely knew something was wrong with my body. I managed to do some research and lucked into finding an absolute angel of a NP who specialized in hormone treatment, primarily using compounded bio-identicals. Prior to finding her, I went back to my original OB/GYN ( who did not do my hysterectomy) and asked about testosterone. Her answer, “do you want to lose the hair on your head and grow it one your face?” 4 years later I have done neither. Testosterone and the right balance of estrogen and progesterone have quite literally saved my life. It took 4 Dr.’s to get the appropriate treatment.
Although it took about a year to fully acclimate to this treatment, I began sleeping better within 2 weeks of starting testosterone. It was an absolute life saver. Sleep had become a nightmare, not so much because of insomnia, but I no longer went through a dream cycle and would wake in a doom and gloom, heart pounding cortisol surge every single night @ 2-3am. It was absolutely dreadful.
Prior to this I was being recommended for ECT because of the suicidal depression I found myself in. Thank god I did not consent to this, and had one very kind friend who supported me through this. I was also lucky to press and fight for SSD as well as my former employers disability. Thank god. My family is of no use and I am single.
I tell every woman I meet, whether they’ve had a hysterectomy or not, to please please find a practitioner who treats the full spectrum of hormones via compounded types. Estrogen was absolutely not enough, testosterone pretty much save my life. Compounded forms are less problematic for the liver and body as a whole. I am so sorry for every woman who finds themselves swept up into an unnecessary hysterectomy, but despite the horrendous situation I found myself in for 3 years after my surgery, it was still one of the best decisions I’ve made in my life.
Describing the degree of my very hopeless and suicidal existence at that time is difficult for those who haven’t experienced it. Hot flashes, lack of sleep, and a useless brain was like being in a very real purgatory. In my heart I did not want to give up but quite honestly its a miracle I am alive.
I will say that I truly wish I had more education and follow up after the surgery. The impact on the body can be catastrophic as many of us have discovered. I now have zero sex drive and my energy will never be what it was, but not being in 24/7 pain like I was in most of my 30’s is a trade off I am glad I made. It is a sacrifice for sure. Now at 45, I figure that in many ways I am more like a 60 year old. I walk daily, ride a horse on occasion and stay as active as I can.
Thanks for posting your story, and again, I am deeply sorry for those of you finding yourselves unnecessarily talked into this irreversible surgery. Incidentally, I had an atypical breast tumor removed 2 years ago and the surgeon was pressing me to go off hormone. I made an educated decision not to do this. you might as well have handed me a hammer an nails for my coffin. I would rather, fingers crossed not, live a shorter but higher quality (non-suicidal) life than go through what I did before. Education is key. They say Dr’s are “practicing” medicine for a reason.
First,thank you for all this information. It’s been quite educational. However, I do have one question. Is it at all possible or has it been found out to be that the same outcome can be found in women who have had a partial hysterectomy as it has with women who’ve had total hysterectomies? I ask this question because all of the before and after issues, situations, and problems have also been experiences that I too have encountered.
Since the age of 11, I had suffered from severely painful and very heavy flowing periods. My doctor placed me on narcotic pain medication at the age of 13 as my pain was so severe, I couldn’t even get out of bed for the first 3-4 days of my period. Then within a year of being placed on the pain medication, I was then prescribed birth control pills to try to regulate my cycle as I would either have a period that lasted for weeks at a time or I would go for months without having one. At the age of 16, I was told by the doctor that I had a badly tilted uterus and because of this, I unfortunately would not be able to even conceive let alone carry and give birth to a child. Again the pain medication was continued with as well as were the birth control pills but with a change in strength as the original ones had not seemed to have served their purpose. The change in birth control pills occurred numerous times over the years. Then at the age of 20, I became pregnant, only to miscarry within a couple of weeks of finding out. A year later, at 21, I again found myself to be pregnant. Only this time, I carried to term (actually even much longer than the 40 weeks). I was told that my body apparently was not responding to the birth control pills. They hadn’t been strong enough to regulate my cycle let alone prevent pregnancy. My pregnancy was a very long and terribly horrible one. My body kept trying to miscarry (or as my OB at the time put it, “involuntary abort” the pregnancy). I bled just about every time I stood up, and my first OB would not put me on medical leave. Now since I worked in retail at the time, I was on my feet at the check stand 40 plus hours a week as we were just starting the holiday season. I changed doctors. That doctor not only immediately removed me from work, but he put me on bedrest for the remainder of my pregnancy. I became pregnant in September 1988, put on medical last week of November 1988, but didn’t give birth until mid July 1989. My due date was the first week of June. My giving birth was as difficult as my trying to carry my pregnancy to term. Then in September 1989, I began to have even more painful periods than before. Every other month I would lay down on my back side and you could see a lump on the left side of my lower abdomen area. Finally in February 1990, I went to my family doctor where I underwent several tests. After my ultrasound test, he told me that it appears as though I have Endometriosis. He referred me to a gynecologist. The Endometriosis diagnosis was confirmed. It was recommended that I undergo a surgery know as a laparoscopy to coterize my uterus. So I did. After I was informed that I had had one tumor on the wall of my uterus. Oddly though, this tumor turned out to be the size of a golf ball. The doctor said that he’d never seen anything like it before. I would then continue to have 9 laptaocopies during the following 10 years. During this time, I continued to have 2 more children. My second pregnancy went very well, but my third in 1994 didn’t. I almost didn’t carry to term again, so my husband at the time decided that it would be best if I had a tubial ligation. So in early 1995 I had it done. However my physical symptoms continued on and only became more painful. So I decided to stop the birth control pills as they were not apparently working in any fashion but I was to still continue with the pain medication. My OB/GYN I was seeing during my last 2 pregnancies then informed me that my having Endometriosis is something that needs to be taken seriously. It’s not only physical but that it’s all a chemical imbalance in my body. That it effects every aspect of my life. Even then I hadn’t considered what I would later come to suspect. By the end of 1996, I had separated from my husband, we later divorced. I began dating again. I also continued to have uteriun problems and more surgeries. Then in late 2001 I remarried. Followed up with another laparoscopy in February 2002. During this time, my husband and I wanted to find out if there was a possibility of reversing the tubial ligation. The doctor did the laparoscopy on my uterus, and also took pictures of my fallopian tubes. During the office visit, my husband and I were told that I had plenty of tube there that would make for a successful tubial ligation, that I should then have a 95% chance of conceiving. However, the risks of my trying to carry a pregnancy to term was very high. We were told that I had a higher chance of miscarrying, of having a stillborn birth, or taking a big chance of both the fetus and myself not making it. My husband then indicated to my doctor that I would have a hysterectomy. So I did. In May of 2002, I underwent outpatient surgery to have the “partial hysterectomy”. Since then I’ve become depressed, suffer from insomnia, have made irrational decisions, become argumentative, and in 2004 left my husband resulting in a divorce in 2006. In that same year, I have been hospitalized over a dozen times for psychiatric disorders, have attempted suicide several times, have since been diagnosed with depression with psychotic symptoms, along several other issues. And at the end of the day, I still suffer from the Endometriosis. This is why I now wonder if my mother’s having used baby powder on me as a baby and toddler and if my continuing to have used shower to shower powder throughout my teen and early adult years could be the cause of the Endometriosis diagnosis and all of the physical and emotional/mental problems I’ve encountered. And if so, how would I go about having it properly diagnosed so that I could finally get the proper treatment? Since my hysterectomy, my life and the lives of my children, second husband, and that of my step son have been dramatically changed and for the worst. I would find it very hard to believe that there’s been no adverse effects have occurred to women’s cervical, vaginal, and uterual areas. Especially since any chemicals that have traveled to the overian tubes have had to travel and contaminate the others first.
Furthermore, my grandmother, my mother, and both of my mother in law’s have also had to have hysterectomies. All of which (except for the unconfirmed use by my second mother in law) have used baby powder and other talc powders over the years. I also have one daughter who has shown signs of possibly having Endometriosis. I also used baby powder on all of my children for the early years.
I would appreciate any feedback from anyone regarding this matter. These last 14 years have been very long, painful, and life altering years. Please be advised that I have not included all of the doctor’s information and/or suggestions/recommendations, all diagnoses, and/or all physical/emotional/mental encounters/experiences, etc.
Thank you in advance for any help provided.
Hello, Thank You for pressing forward and getting this information out there. I am on a similar and related Mission myself RE: Endometrial Cancer caused by the long term use of and exposure to Talc.
September 9, 2009 at age 53 – yes, I too know the date, during Menopause I was diagnosed with what would be the first of four different kinds of cancer (that I’ve been diagnosed with so far)9@ – Endometrial Carcinoma/Sarcoma. I was told by my female Gynecologist I “had” to have a “Total” Hysterectomy that HAD to include removal of Ovaries (rational was that the Ovaries produce Estrogen that and if left in me could possibly encourage the growth and metastasis of the Endometrial Cancer to other areas of my body) and Cervix as well…(hey, why not include the Clitoris while you’re at it) in order to “save my life.” Adding insult to injury she arranged for me to have “Robotic Hysterectomy” surgery explaining to me this was the latest breakthrough and SAFEST (for who, I don’t know) way to go! Ha!
On September 20, 2009 I reluctantly submitted to this Castration, regretting ever since both the dramatic removal of my Uterus, Tubes (what was left of those following the Tubal Ligation I’d had following the birth of my third child years earlier), Ovaries, and Cervix. The surgical biopsy revealed while I did have a malignant Carcinoma/Sarcoma in the Posterior Uterine wall, it had stayed confined not venturing out into any local nodes.
Prior to this Assault on my Body, I always had a healthy low Blood Pressure. Only three months later after having Robotic Hysterectomy, I had an appointment to meet my new Primary Care Physician and get established as her Patient. When she took my Blood Pressure it was sky high and she noticed I was having irregular heart rhythm’s. I told her I’d had some pains in my chest within the last few days… Nothing significant… Or so I thought. She immediately ordered a Blood Test that could be run there in the office, a Chest Xray they could also process there while I waited, and an EKG. Wow, she’s thorough,I thought.
She came back into the exam room with the results of all these tests. For the first time in my life I was given a diagnosis of High Blood Pressure, the blood test revealed I’d recently had a Heart Attack. I also now, for the first time in my life had an Enlarged Heart AND a diagnosis of Congestive Heart Failure as well. I had showed her, laughing about it, that I’d developed “canckles” (very swollen shapeless legs and ankles) since I had my Hysterectomy.
And… Even though throughout my life I’ve had NUMEROUS Abdominal X-rays, CTScans, MRI’s, and PETScan’s, AFTER I had the Robotic Surgery, a PETScan revealed I now have an Aortic Aneurism!
Oh…mY…GOD!!! You’re kidding, right!?! Aren’t you?
By September 2010 a Synovial Cyst Tumor had developed at L4/L5 on my spine and traveling down my right Sciatic Nerve and created pain so bad I was confined to bed for almost five months prior to having back surgery in September 2010 to relieve the pressure from this tumor with no promise from the doctor it wouldn’t eventually grow back. Well, it’s 2016 and it’s grown back.
Also in 2010 I was diagnosed with 2 different skin cancers, Basal Cell Carcinoma on my left shoulder to which I have a three inch scar and Melanoma just below my neckline front and center.
Oh yeah, in 2011 an Oncologist diagnosed Cancer Number Four as Chronic Myeloproliforative Leukemia.
Personally, I believe my lifelong use of talc contributed to the Endometrial Cancer. I’m not trying to use your page to advertise this but I have a Facebook Page Group called, “Endometrial Cancer Caused By Talc” that is both an Information and Support Group (it’s all Free) to bring attention to women everywhere to STOP using ANY kind or brand of Talc immediately because they’re IS a scientific link between the user of Talc for personal hygiene and Ovarian Cancer but there is ALSO a link with Endometrial Cancer as well. I used J&J’s Shower to Shower and/or J&J Baby Prefer.
They KNOW that as benign as Talc seems and feels it actually produces an Inflammatory Response in the Body. Chronic Inflammation in the Body causes Cancer.
Talc isn’t the ONLY cause of Female Organ Cancers but. J&J KNEW 40 YEARS ago their Products caused cancer in women and did NOTHING to warn us!
Not knowing, who hasn’t used Baby Powder on their daughters as babies and even granddaughters? I quit using them in 2009 when I was diagnosed with Endometrial Cancer.
Thank You for allowing me the Space to Comment on this here.
When I woke up this morning, most of the time, I don’t let myself go there. But yesterday a good friend was being advised to think about having a hysterectomy by her doctor to CORRECT??? a hormone imbalance???
I woke up with a very bad case of PTSD from having mine. I came here. I wrote about it. You helped. Good Bless You!
I’m 22 years old and had a full hysterectomy back in February. My partner and I had just married and got a home together and since it has broke down the relationship due to my guilt of never being able to give him a family.
I’ve had such a lovely life so far and from that moment I woke up I knew my body wasn’t right anymore, I did not give consent to the operation and didn’t know it was happening until it was over. I don’t recognise myself in the mirror anymore, I fight the urge of suicide on a daily basis, I received no support from doctors, I haven’t lived my life yet and it’s already over. I feel my body changing every day, i don’t feel beautiful, I don’t feel like a woman anymore, I stopped taking care of myself and my body is ruined. I’ve been on long term sick leave from work since the operation, I haven’t been out and I make excuses to stop my friends coming around.
I can’t cope with the mental torment I go through on a daily basis, it doesn’t seem fair. I’ve lost the love of my life, the future we had planned and I’ve lost my life.
You still have options available for you. You can adopt children. Many people do. Many children need loving homes to be placed in. You have much to live for. Your life is not over. It has only just begun. Never give it. Find someone you trust to speak to…a friend, a counselor. Someone that will listem to you and encourage you.
My wife had cervical cancer in 2006 at the age of 35 just after the birth of our “Miracle” child. We use the name “Miracle” because her tubes had already been tied and she only had 1 ovary because the other was removed in the late 90’s. With a history of ovarian cysts since she was 17, the decision was made to have a full hysterectomy in 2006. My wife refused to take hormones because of various reasons. Any way over the years she has dealt with hot flashes, chronic joint pain, ongoing constipation and here recently depression. Her nightly “glass” of wine brings out the worst in her. When I read some of this sites content I realized that my 10 year old does not know if his Mom will be Mom or Mrs. Hyde when the evening rolls around. We love her dearly, however something is wrong. She is tired all the time and the alcohol seems to bring all of this anger, resentment, sadness to a head almost nightly now. She will not go back to the Gynecologist. I have tried and tried to talk her into getting some help for years and this morning she has agreed to go to the doctor and spill the beans. What should I do? What should she do? Please help me help my bestest friend that I love so much that I would do anything for her even live in a home that at times can be hard on my soul especially when our 10 year old has to be the one that comforts her because to her I am oftentimes the enemy in her eyes not her Knight.
Whatever the cause, depression is all too frequent following hysterectomy. This illness is much more than a bout of ‘the blues’. Many affected women require hospitalization, lengthy counseling and drug treatment. Depression affects your sleep, your weight, your energy and your concentration and should be taken very seriously.
I suffered medical mismanagement from the military, VS and civilians. When I was opened for appendicitis, the doctors knew what malpractice they had done. A month later another surgeon had to remove everything except the right ovary to keep me dying from sepsis at 26. I would never have a child. My spouse reneged on adoption.
At 43, the surgeon removed the right overt after repeated painful cysts and surgeries. My mom was diagnosed with and died from cancer in nine weeks. My husband had open heart surgery which his mother blamed on me and my stepdaughter entered a disastrous marriage and after divorce moved to the other coast.
At 58 I have I overwhwlming physical, financial, emotional and work stress. I will not live to retirement. I no longer have hobbies or interests or friends and hope each day I will simply drop dead.
No counseling or medication will change this hell. Not a single family member or co-worker guesses understands even a smidgen of why I feel sad or angry or hopeless. My constant prayer is the God will just let me die.
Are you still on this forum? I’d like to talk to you if you are.
The uterus, ovaries and all our womanly organs are more than just physical things. They mean much more than women being able to give birth, to nurture or to have sex. There is a living sacredness inside us which is ancient and a deep part of who we are. It may be something we have ignored or taken for granted until a medical problem arises. I know what it feels like to want something fixed medically – to make a problem go away, having had my share of life threatening illnesses. When I was honest with myself, I found there was always more to the problem than just the physical, in the way I lived my life, the issues I did not want to face about myself as a woman and accepting myself for being beautiful just the way I am, not for what I am able to do or achieve.
Yes, it is vital we empower ourselves and others, looking into what medical procedures can do and the devastating effects these can have on people. We can also choose to look at the reasons we get ill in the first place and ask ourselves ‘is there another way to live?’ A loving way of living which nurtures and supports us as women. I used to drive myself incessantly to achieve the things I thought were important, at the expense of my body which became ill to the point where I nearly died.
Getting the support we need from the right people can be a life-saver. It’s something I deeply appreciate, together with an appreciation of how far I have come in a few years. Being able to appreciate something about ourselves each day in small things, makes a difference in how we manage each day, even though our challenges may be huge and often seem overwhelming.
So while we may feel our lives have ended in the way we knew them and will never be the same, there is a way we can accept what has happened, which brings healing and allows us to make loving choices for ourselves. I am living proof of this
Add me to the this horrible, horrible trauma. My question, are there any doctors that are willing to work with women to regain their hormonal balance after Hysterectomy?? In the 5 years since this happened, I’ve gone to approximately 30 doctors/specialists/ob-gyn/psychtriasts/endo specialists (my surgery was even done by one 10 states over). I am DONE. Absolutely DONE. Lioe many of you said, I am a complete shell.
One thing that helped me (somewhat- just saw a new dr yesterday) was to order my own blood tests (i used zrtlab.com- i have NO affiliation). I have BEGGED dr after dr to test me (including the HIGHLY regarded endo specialist in another state who did my hysterectomy)- I was told I didn’t need hormones and instead needed a therapist. BS. My bloodwork showed my hormones were close to 0. Shocker! I took those results to a new dr and will be given hormones in 3 weeks. If this doesn’t work, I don’t even know what I’ll do. I’m also at a very dire point- gained a TON of weight, now have hypothyroidism, metabolic issues, fibro, the list goes on and on..,
Thank you for listening. I’ll keep all of you in my thougts. ❤️
Contact Dr Irwin Goldstein at san diego sexual medicine… (google his credentials ) I am going through this too. I jhave posted before as I have nerve damage that has prevented my body generating its own hormones and I have been empty mentally, sexually and physically ever since. He is very to bring to the medical industry this vastly overlooked and neglected issue in sexual health.
Operations need to be regulated better and this is a neurological area that needs more research. I also have spent 6 years contacting hundreds of phsyicians who have sent me packing blaming ’emotional problems’ which is an outrage since this was forced upon me. Please speak to him as he has shown huge compassion and understanding.
Yes! Seek out an integrative or progressive practitioner who treats with bio-identical hormones. They saved my life. I am on progesterone/testosterone/estrogen and a very low dose natural thyroid. Traditional Dr.’s feel there is no need for these additional hormones since they are produced in very minute quantities in fat cells and other organs. I would be dead if I had not lucked into finding my very progressive NP. You are on the right track. Advocate for yourself! It can be hard in the face of authoritarian Dr.’s, but move on if they don’t have the answers for you
I am in upstate NY.
I hope you’ve had luck since you posted in December
I swear to god we all seriously need to do something about this. First and foremost I want to thank the writers; Robin especially and of course Chandler for the website Hormones Matter. I have read countless stories here, all the same. All the same consequences, this is also recognized by the HERS Foundation as well. Why are these practices still going on here, woman who have severe diseases still come forward and absolutely regret this surgery in entirety. Gynoeclogy is a seriously back-ward practice with woman, and its treatments have not developed. How can we go on like this? I too like everyone of these woman have also been castrated and had my uterus removed. I have so many problems because of this awful procedure. I would rather take back the adenomyosis. There is a factual death that hits a woman after this surgery, in truth we have been severely injured and are in our own way dying physically. Without these essential hormones we will die. And lets be frank we are dying; a slow death. Our bodies innately knows this. Being castrated makes these essential hormones lost forever. Can’t we see that we have been executed; by the surgeons knife. Lets take for example the late Alan Turing, the English mathematician and logician who helped crack the Nazis’ Enigma code and win World War II. He was a brilliant man, and because of his homosexuality he was chemically castrated, as a punishment by the government for being a gay scientist, but he slowly lost his cognition and brilliant mathematician mind and committed suicide. Again proving how awful this was to do to a man, and yet this is done everyday to woman.
Wow. This has been very informative, and has me rethinking hysterectomy. Since I was 10, I’ve had a, due to period/ PMDD…depressive suicidal existence and I have actually wanted to have my uterus and ovaries ripped out
I hope you manage to make the decision thats right for you.
I dont know about the diagnosis you have described, so I cant truly feel your pain, however I did grow up with a violent and painful level of out of control emotion and a sense of being wild and unloved. This led me to various forms of self abuse and harm and a deep sense of worthlessness.
I wouldn’t wish this on anyone as such, but now I really miss that girl I was.
I do not understand PDMM and the torment that goes with it, but I will say as a woman we are taught to fight and suppress our most powerful, passionate and painful emotions. Its too much for people to deal with and can frighten people away. Further driving us to feel weird or abandoned.
Although a torture, this is a magic and a powerful energy that I think should be learned to channel, express and value. Not to be removed. Imagine, Billie Holiday, Kate Bush, Bjork, Grace Jones, Tina Turner, Nina Simone, Aretha Franklin etc etc.. all had a hysterectomy?..Would their voices mean so much without the pain that goes with the passion? Our energy is life and is creativity.
No one can understand your body or advise you. So im sorry if this it too much.
I dont know what you are going through so sending love and hope for you and that whichever road you take brings you to a better place.
XX
Robin, I have written for Lucine/Hormones matter for a while (Not recently) and what you have wrote I could not put into words and I thank you for making see and realize that surgical menopause is nothing like natural menopause and made me write a new blog post.
You have nailed it with all that you have said and I had such trouble articulating my words and thoughts to even explain to anyone what I was feeling. Its the most scariest place I have been and I have been to hell and back 🙂
I can’t thank you enough and hormones matter for doing an article on this because it was so long overdue. The web and many people only give information on basic menopause and it is so deceiving and makes people feel that it is a better option, although some wake up to it which is even more horrifying.
Thank you so much for being so inspirational and writing this. You have a lot of courage and I can sense your strength and resilience even when it seems like there is nothing left to give. 🙂
You rock!
Hi,
I am here for the same reason you are all here. Except for one difference. One that will mean no one will probably even read this post, and will overlook the massive loss I have also suffered.
In August 2010, I also had surgery. and from that day I have felt dead inside. I also try and fight the suicidal thoughts that I lie awake with at night and try not to give up hope. Obsess about how to even get help, what to say? who to reach out to?However, I am left to deal with this alone, day after day after day.
As my surgery was not even a hysterectomy. So how can this be happening? I must be crazy, this is a metaphor for some other loss..
As the doctors have persistently told me, ‘I should go home and try to relax.’
I used to be a creative, passionate, sensual person too. I used to lie in bed and dream of lovers, of being loved, of starting a family. My mind was my passion, I used to dance, draw beautiful drawings, I used to laugh. my womb used to feel like there was a universe of light and stars in there. Now its cold and empty.
My world has moved on, all my friends settled and found love. I just want to want, just to feel that feeling of wanting. Not this endless and terrifying void.
The day after this happened I also woke up dead inside. I touched myself and could literally no longer feel sensation in my labia, my inner areas were no longer responsive, even my inner thighs, which used to bring electricity, nothing.
I tried to orgasm.. something that used to easy and reach into my soul, but I had completely lost the capacity. It happened a little, but had become invisible. None of my cells in my body or mind react anymore. Im empty.
My brain felt like a hole had been blown in it and I was no longer who I was and I was dead, but no one could possibly even understand. After all, my surgery was a ‘harmless’.’minor procedure’.
I asked a few questions before they did this to me but apparently it was ‘not even worth thinking about’.
Fantasy was once my life and my hope. I was special and magical and had the world ahead of me. I try and imagine now a sensual experience and I just stay numb, like I am sexually aspergers.. Love and life, a language I no longer speak.
I am a non being. I want to greive and just get over it, but I cant as I am unable to connect to myself.
I gave up my job and my career, because it was hard to be around people not knowing who i was anymore. I don’t even consider myself to be a creative. Everything I dreamed of just became a facade.. I used to be a successful designer. I used to feel fire when I heard music, wear clothes that felt made me sexy and alive, part of something. I felt young. I was young.
Now Im at home all the time. My thirties nearly over, and I cant see any future.
I isolated myself, can no longer can bond with my friends, they are sick of not knowing whats wrong. And so am I.
People think this is a metaphor, a depression,stress. an indulgence I have bought upon myself. My God I wish it was.
I can feel there is something wrong inside. But there is no evidence. No proof, no explanation. Nothing. so I am left. Crazy and alone.
I do everything I can to seem positive, sport, pretend laughing, pretending Ill meet someone one day.
I put on a fake smile and go out. Pretend to be enthusiastic about being alive.
I have also worked day in day out, researching and fighting for an answer. Battling the institution that did this to me.
I have lost my mind, there is no other thought in my head, but finding what has been done this to me.
You have all lost so much, I am so so sad, so sorry. I feel like an imposter writing here, I may be able to have children still, if by a miracle I meet someone who can tolerate what i have become. As I still have the organ that they have somehow yet cut the life out of, but Im also desperate for some support.
What you are writing is the nearest thing I have to explaining the loss inside. I can find no other place to ask for support.
I think there is an element to the womb that is more than childbearing, more than hormones, more than anything modern medicine has been bothered to try to discover.
There is something powerful but unexplained, that exists in each one of us that defines us as a woman.
And not just the womb, the cervix, the doorway to life. The part that is always overlooked. The most important, sacred, innervated, yet undervalued part of the womb itself. This is the part that they cut into.
The part that they now try to save with some hysterectomies, but yet, happy to cut into daily on women for minor reasons without even a consideration what this might do.
I am grateful everyday for being ‘intact’ , yet now i’m told, after years of denial by the countess UK doctors, having travelled the world looking for answers and to finally find some specialists, that my organs have begun to be reabsorbed. At 39 years old. My once passionate, young, joyful, female body died on that day. I no longer am.
This is my story.
I am sorry if this seems irrelevant. I know I should be grateful, for what I still have, but I wish I had someone who understands who could just hold my hand through this.
Melanie, your story is not irrelevant. You are not alone. What surgery did you have, if you don’t mind me asking, b/c you make a very important point that few women realize about cutting into the female body, even when the organs are largely left alone, that there is damage. A woman’s reproductive organs are so much more than their baby making and few realize this until it is too late.
Thankyou. My operation was a leep. This is sold as a minor procedure but it is not. It is not a harmless little cut. It is a deep and random cutting into the cervix. This is a dangerous and controversial procedure that doctors are denying can have a devastating impact on a growing number of women, it has been casually rolled out as a routine and no thought has been given to the impact of the nerve pattern inside the cervix.
I am talking to researchers at the moment who have the statistics and (over 11% of women suffer similar symptoms to hysterectomy post leep..) this should not be allowed to continue without reserach at least.
I cant even explain. I am grateful for having my health but I am devastated to have lost my sexuality. It feels like an assault and for it to be denied constantly has made me feel crazy and alone.
I know I am not in the same boat os the other women but I really need a community that understands how it feels to have lost something so precious.
I loved being able to love and share my body. I feel like I got neutered.
Thanks for listening.
Melanie,
I’ve never had any surgery and have reached the age of natural menopause, without many side effects, but I do not think you are crazy.
I am so sorry you were lied to by the medical profession and you have such agony.
I pray you find someone who will take you seriously and who also knows how to help your physical being.
If we lived close to each other, I would be your friend through this.
Thankyou so much.
xx
Melanie, I am researching LEEP for a book about women’s health and you are most certainly not alone. Please feel free to reach out if you’d like to talk.
Peace to you
Hi! I am researching leep frantically as well.. with some amazing scientists.. who may have found out what the truth is behind this.. (and hysterectomy symptoms) please please lets talk!..
I got removed from another site for mentioning my email and the researchers name.. how can we do this?.. x
You can reach us directly via this link: http://www.hormonesmatter.com/write-for-hormones-matter/
HI, we are doing a presentation at the isswsh pleasee contsct Dr goldstein at sdsm and mention you are writing about leep. He will give you lots of information
HI,
I have asked the site to swap our details and also left a message below that you could trace me on.. (the people who are helping with this can be googled easily.)
Melanie isnt my real name but I am a case study now on leep so they will know how to find me easily and give you my details.
I am really keep to talk to you so please get in touch!..
We have all been neutered Melanie, that’s the lack of information we are presented at the time of surgery. It just all makes me so very angry!
I’m reading these stories of women who have been “castrated” and I can relate. I had my complete hysterectomy simply due to chronic pain and enlarged and dropped (?) uterus. I voluntarily had them remove everything because I just wanted for it to be over, thinking take everything out and that will solve my problems. Man was I wrong. Think period emotions are bad? Tsk Tsk. I cry at the drop of a hat and I was never a crier. I spend almost every minute of every day wishing that life was over because I just can’t handle it anymore. The stress. Emotions that I don’t understand. The inability to carry on a conversation with someone without being negative. The doctor put me on Welbutrin (which made it worse) and estrogen therapy which merely helps with hot flashes, I don’t see any other significant change. My sister had a complete hysterectomy 2 months before me. She is the opposite. She thinks the surgery was the best thing that ever happened to her. Said she is a changed woman, for the better. I would take the pain and the surgery back if I could. There is no telling how long it will take to get out of this hopeless state of mind. Best wishes to you all and I hope those of us who are suffering (some more than others) find peace.
I had a hysterectomy on 10/29/15. I had my rt tube removed & kept my ovaries. I found this article after searching for suicidal thoughts after hysterectomy. Wow!!! I also suffer from fibromyalgia. These past 4 days have been absolute hell, to say the least. I’ve never been a bubbly person but loved to laugh, joke and enjoy life as much as I can. That’s all gone. I feel like a prisoner and a stranger in my own mind and body. I’ve had other surgeries, including a open heart-like surgery to remove a bullet that was migrating in to my heart. Yes, I survived a gun shot to the (almost) heart. But this…this is a hell I don’t wish on anyone. I’m tired of the pain, tears, uncertainty. I’m sick and tired of being sick and tired. I keep telling myself, this too shall pass…
Oh my gosh! I cannot believe I am not losing my mind. I had a radical hysterectomy on July 21 2015 and when I woke up , I was gone. Instantly I knew the old vivacious, outgoing, high energy, beautiful and irresistible girl was completely gone! I am beyond gone. All I think about is how to end the pain. I look in the mirror and don’t even recognize her. I remember being beautiful. I remember being so full of life. I remember who I use to be but can’t get her back ?
Dear Robin and other Sufferers,
Fourteen years ago I had cysts on my ovaries. Surgery was recommended. When I signed the consent form, I added ‘removal of cysts and nothing more’. I told the surgeon several times, including just as I was placed on the table, that I wanted to keep all of my organs.
Of course, you know what happened. So I pursued him through the NSW (Aussie state) Health Care Complaints Commission. I also had an article published in the OBGYN journal and kicked up a stink in any other venue I could find. I didn’t want to sue him, I wanted him to admit he had done the wrong thing, and most of all I wanted as many OBGYNs to see what happens when they play God.
They can’t see how horrible I felt for years. Due to my loving family I have survived, or perhaps there is something stubborn inside that doesn’t want him to win. Still can’t be in a room with a specialist without wanting to cause him harm.
Stay strong,
Judith
Kristin, I know and feel your pain deeply. What was done to you, me and so many other women–too many other women–is not fair and very hard to bear. You have a reason to be sad…
I don’t feel whole either. The truth is that we’re not whole after hysterectomy and castration. Not only does our world cave in, but those around us, who love us, feel like their world has caved in as well. One woman commented here that she felt as if she’s holding her own death certificate since undergoing hysterectomy. Very sobering comment…
Thank you for sharing a piece of your heart here Kristin. I think it’s important that we know we’re not alone in the very sad aftermath of hysterectomy. Feel free to comment here anytime.
The thing is, I no longer care about recovery. 22 years of hell is enough. I just don’t want to live anymore and why should I? If I didn’t believe it is a sin, I’d stop now.
I used to be so fun and carefree !!! Now im sad all the time for no reason. My husband is afraid to say anything to me because im paranoid that he wants something else. I dont feel pretty or whole anymore. I have had thoughts many times of just giving up but him and my kids are what i clinge too. Im scared that he will leave me cause its too much for him. Its not fair that my world is caving in and i wasnt warned how this would effect me.
Oh Kasy, I’m so sorry for what you’ve endured… I can’t imagine being castrated at your young age. Your doctor should have done everything possible to spare you this fate and sounds like he didn’t. I understand how you feel toward him. It’s only normal.
If you’re not using hormone replacement, you should probably check into it. I’ve been using bioidentical hormone pellets since about 2009 and it does help. Of course, no hormone replacement can ever replace the dozens of hormones our ovaries naturally produced. Still, hormone replacement can help with depression and maybe help prevent bone loss, heart disease, etc.
I’m glad you found my article and took the time to share your story here. Please know you are not alone in your devastation. There are many of us who understand what you’re experiencing. I hope your fiance will read up on the after-effects of hysterectomy and castration so he’ll understand what you’re going through and know how to better help you.
You can find more information regarding hysterectomy and castration on the Hormones Matter site. You can find all of my articles if you type Robin Karr into the search bar. My website is http://www.hysterectomyconsequences.com if you want to check that out too.
Will say a prayer for you Kasy…
Thank you for writing this article. While I found it hard and painful to read, I related to a lot of what you wrote about. Nobody prepared me for the aftermath of losing my ovaries. The only thing I thought I was losing was my ability to conceive naturally. I had my eggs frozen. I didn’t think I would lose my ability to work, my ability to function day to day, lose my sexuality and ability to date or have sex. I am broken, and I feel it every day. I think it every day even if I never tell this to a single soul. This all happened to me in my late 20’s and while it was done for medical reasons, this surgery has basically devastated me, my life, and my family who has no idea what to do other than to keep seeing more doctors and trying to find other opinions/solutions. My doctors did not inform me any of this they definitely didn’t use the word or term “castration” if they had I would have researched everything more thoroughly. This surgery may have been an inevitability for me because of a medical condition/defect that caused my body to produce borderline ovarian tumors…But there isnt adequate research on how to make women post surgery feel good and be able to function. The HRT works ok, but not well enough for me to be able to be a functional person. I have tried so many of them, and still haven’t felt well since the surgery. I struggle with depression and yes have thought of suicide on occasion. My nature is generally positive so it passes. But I do fear what my future will be like. Will I never have love in my life again? Will I not be able to support myself because I cannot work? Will I ever have sex again and it be pleasurable? It’s very sad. I try to distract myself but more research needs to be done in this area of women’s health. If they were “castrating” men with the frequency they castrate women , you know the medical community would be trying to find solutions. But we are just kind of forgotten about post op. Given an HRT that doesn’t work for us and sent on our way. There was no support, therapy or anything offered. They just acted like I’d be totally fine. I am years post op and still very young and some days I feel totally hopeless. Thank you for writing this article. Thank you for giving women a voice.
I’m kasy and I’m 23.,
When I was 11 I had my first period. I felt so different and awkward. I was always shy and I hid everything from everybody. I told my mom but she never thought much about it, but I would always complain that my periods hurt more than they should and at my size and age 70 lbs and 11 years old. But as I got down my teenage years ., the worse they got the more awkward and shy I got. By the time I was 17 things got out of hand and I was falling unconscious in class and throwing up constantly. I started homeschooling the following sophomore year thinking it would help out with my type one diabetes and help relax a bit too. Things weren’t getting better and,I was falling off track. I was trying to graduate high school and get my diploma. Well I graduated got my diploma and the following spring got a job a car and a place of my own. I thought I was doing great. ! And one night I was alone at my new,place I stared my period that night. It was the worst. ..in a very long time. I woke from being unconscious covered in vomit and infected bloody puss…I was mortified! ! I called my fiance and he then rushed me to the local ER. Long story short…. I had endometriosis and cancerous cysts on my ovaries. ..meanwhile the vomit scenario was my ruptured appendix
……..needless to say I had a reality check that hit ME in the face like a freight truck! Here I was 19 years old not even close to 20. They tell me that they are going to perform a emergency hysterectomy and while they’re at it to remove my appendix that ruptured earlier that day which is what made me so very sick. So
… on the 23 day of March 2011 I kasy l slo*e was castrated…. but! Necessary?? At 23 today I feel alienated and my poor fiance….he does, miss the old kasy….but he will always love me the same! I hope at least… but there’s one problem. ..to doctor wesley j Harris. ..I hope you still sleep well at night knowing what you’ve done to me and probably hundreds of other women…and I hate you for closing my door to childbirth. And taking MY hormones away from me because I can’t pay you your precious 47000 you needed to pay for your brand new BMW!!!!! I hope you get what you deserve!!! Thanks y’all for letting me share!!
Amanda, your comment is heartbreaking… I’m so sorry you are suffering. You are not alone by any stretch of the imagination. And you’re not crazy either. What you’re experiencing is completely predictable. Sadly, nobody talks about this. Please know that you’ve done nothing to deserve what’s happened to you. But yes, it can certainly feel like a death sentence,
You didn’t say what type of hormone replacement you tried. But, I could not tolerate synthetic hormones like Premarin. I’ve been on bioidentical hormones (via pellet insertion) for over seven years and they’ve definitely helped in some ways. As I mentioned in my article, I attempted suicide a few months after my surgery. If you haven’t tried bioidentical hormones, you might want to give them a try. You’re just way too young to feel the way you’re feeling.
I’ll say a prayer for you. Please take care of yourself and find a good endocrinologist who will help you.
Hi, my name is Amanda and I’m 30. Just a week ago I had a hysterectomy with my ovaries removed as well. I had PCOS, PMDD, and Adenomyosis. With the hormones already being messed up and dealing with suicidal thoughts I thought this was a good option. Then I could control the hormones I put in my body. The hormone path has been making me sick and I still go from hour to hour on if I want to live or not. I don’t know what I’ve done wrong to deserve such death sentence, but I can’t take it. Everyone just thinks I’m crazy and I’m so alone.
Hi Katie, thank you for taking the time to share your experience here. It’s unbelievably sad that gynecologists perform hysterectomy and castration on women as young as you were. I’m so sorry…
I agree with you about HRT being expensive (and yes, a real money-maker) and not really helping that much either. Women’s bodies and hormones are very complex to say the least. There’s no way that any man-made hormone therapy can ever replace what we lose when our ovaries are removed. Most doctors know this.
Like you, I believe that God is truly our best source of help when we’re in this intolerable and devastating situation. It is my personal opinion that God never intended for women to live without their hormone-producing organs – at least not in the massive numbers of women who are doing so. Nobody really talks about the spiritual impact of hysterectomy, but I’ve written about that subject on my blog site at http://www.hysterectomylies.blogspot.com if you want to check it out.
I think you’ve stated really well how many women feel when you said you feel like you’re holding your own death certificate. Profoundly sad, but true I think… If you feel up to it, you should consider sharing your story on the Hormones Matter site.
I am so over these websites and all this talk about HRT. I was told that I MUST have a hysterectomy at 30 and did. The doctor removed my ovaries and stated there would be no problems. Since then, I have been trying to find my hormones for the past 5 years. I am now 35 and the only Savior for this is Jesus himself. No one can help you with this. I have spent $1000s of dollars trying to get balanced and been given many of “cocktails” or “solutions”. No one has the solution, because age happens. Do not waste your time on HRT and “spit tests”, because it is not covered under insurance and it is very expensive. You may start feeling good for a month, then WAM they feed you with more and more vitamins or “cocktails”. This is a very huge “money making” industry. DO NOT FALL FOR IT!! My MD that removed my ovaries doesn’t have the answers. With all that said, believe me when I tell you I understand how horrible this is. I used to be fit, loved my life, and have two beautiful boys and a wonderful husband. I am getting better, but with the help of Jesus and his word on healing. Don’t waste your time on man to heal you! Good luck and God bless. lost hope in medical industry PERIOD; found hope in someone that counts
The hell about this is you look normal to everyone on the outside, but once you start talking about it people think you are crazy. This is why so many want to take their own life. We all feel backed into a corner holding our own death certificate.
Oh Stephanie, I am just crushed by the news of your sister-in-law’s suicide. Just crushed… My heart breaks for your brother and nephews and you too, of course. I’m so sorry you’ve also endured the horrific many after-effects of hysterectomy, but I’m happy you found my article and now realize that it wasn’t just you.
I decided I had to speak out after a dear friend of mine (Toni) took her life for the same reason. She sent me her story and asked me to post it on my website in her own words. Then, she ended it… I didn’t know she had any plan to take her life. I mentioned Toni in my article, but you can read her entire story here http://hysterectomyconsequences.com/suicide_letter_50_-_73_of_hysterectomized_women_become_suicidal/one_womans_story_shes_dead_due_to_trauma_of_hysterectomy
Again, I’m so sorry for your loss. Thank you so much for taking the time to read my article and comment. Sending you comforting hugs and huge love…
My sister-in-law had a hysterectomy just 10 months ago and I am now deeply saddened to say we will be burying her on Friday. We are just now, almost 2 days after her suicide, discovering that this is the reason she did this. I am 43 and had a hysterectomy 13yrs ago. I went through so many of these symptoms then and still continue to do so today. I always assumed it was just
me and that it was just something that I had to get
through. I never realized that other women fealt this loss or feeling like you were dead on the inside. This has been a very big eye opener for me. I’m am spending
this night @ my brother’s with him and his two sons and
am so glad that I have come across your article. I will continue my research and pray that we can help my brother and nephews cope with their loss.
it’s about time that women take a stand together to combat the forces of man medicine which has and is dominating the world. Endomeyriosis is a disability, women need funding for alternative therapies, access to organic free foods and the option of support from the government when cannot work.
I’m glad you found this site too Tracy! And, I’m especially glad you found it before agreeing to undergo a hysterectomy. While I’m sure you’re beyond ready to be free from pain, depression, etc., I worry that hysterectomy may not provide you with relief from those things.
I hear from women in situations similar to yours and they say hysterectomy caused even more problems for them. I don’t want that to happen to you. Keep doing your own research for sure.
Please talk to your doctor about options (alternatives)as you said you’re planning to do. Consider seeing a holistic doctor who could help you make any necessary changes in your diet. Proper diet, supplements where needed and regular exercise can help a lot. Things should get better once you go through menopause too.
Hysterectomy is a very permanent decision with very profound consequences. Make sure the benefits way outweigh those consequences. Please, whatever you do, don’t make a rushed decision.
As sad as these stories are,I’m really glad that I came upon this site. I am 42 years old and have been dealing with PMDD and endometriosis for the past 20 years and it’s really had a negative impact on my life, in more ways than one. That said, I am seriously considering a complete hysterectomy, but, after reading many horror stories, post hysterectomy, I am reconsidering that option. Last year, I had fibroids removed along with endometriosis, not all was removed so I still have painful periods, the hole 9 yards and I’m just looking for relief from all of the awful symptoms that I have for a good 2 weeks out of each month. I have an appointment with my DR on 8/19 to discuss options.
Best,
Tracy
Don’t get a hysterectomy. You will pay in your older years. So many problems after complete hysterectomy at age 27 for endometriosis. Problems started the following year & escalated . I’m 64 now & can’t have sex with my husband. That’s just one issue.
Wow Janie! Thank you for reading my article and taking time to comment. You understand on a deep level what I was hoping to convey. This was such a difficult article for me to write for obvious reasons, but I want to be a voice for those who don’t have one.
I’m reminded of women like my friend Toni who are no longer here to speak out and others too of course. I certainly feel some sense of responsibility to not just speak out -but speak out loudly- about something that is destroying the lives of so many innocent and unsuspecting woman (and their families).
Heartbreaking and soul shattering it is… And yes, I believe there would no doubt be a massive outcry if this were happening to men. I talk about that in my article on the ethics of female castration here http://www.hormonesmatter.com/ethics-of-total-hysterectomy-female-castration/
Informative and devastating, Robin–thank you for sharing your experiences and giving other women a voice. I hope blogs like yours can become talking points among women, and their doctors. The thing is, everything you point out makes perfect, rational sense. It’s really outrageous and astonishing that this goes on–but it’s because women are not informed, and too many doctors are going after the dollar, AT THE EXPENSE OF THEIR LIVES. I find this so heartbreaking and soul shattering. Also, what you point out about the need for even MORE meds to counter the meds they freely give out as if they’re a satisfactory substitute for natural hormones et al, turns these women into robots–automatons who can’t even think and act freely on their own. I sincerely hope there will be a way to exert some pressure on these charlatans–seems there’d be a huge outcry if this happened to men?
Wanda, thank you so much for taking the time to share your story here. Wow – all the way back to 1970 and you still remember how undergoing hysterectomy made you feel! Your comment is so much like the ones I included in my article. That makes me incredibly sad…
You were way too young to have been feeling like less of a woman and not wanting to have sex. And the loss of your marriage too… Those years should have been the best years of your life. I’m so sorry.
I’d be very interested in knowing how you finally overcame so much post-hysterectomy trauma. I hope you’ll consider taking the hysterectomy survey on Hormones Matter and share your experience there. Hope you’ll think about signing my petition as well.
I had a hysterectomy in 1970. I had suicide thoughs and didn’t want sex for many years and didn’t understand what was wrong. It finally cost me my marriage of many years. At the age of 29 I felt less of a woman because I didn’t want sex and most of all I couldn’t have anymore kids. I started getting sick all the time. I felt that I wasn’t a full woman anymore and no man would ever want me. It took many years to over come my guilt.
Thanks for taking time to read my article and comment Dr. Samuel!
Very interesting article… Thank you for sharing!
WS, thank you for reading my newest post and taking the time to comment. The fact that there is truly no recovery is the saddest part of all… We’ll never know just how many women die needlessly after undergoing unnecessary hysterectomy and castration.
As I’m sure you’re aware, these surgeries lead to death in a variety of ways – heart disease, cancer, autoimmune disease, etc. Suicide is probably the most sad and profound though…
As you say, it doesn’t appear those charged with helping are going to help. One day, I do believe people will look back on these surgeries and shutter to think so many women were made to suffer in such a barbaric way for no true medical reason.
Thank you for another great (but VERY SAD) article, Robin. I too was hysterectomized and castrated. As you and every hysterectomized woman knows, there is NO recovery from hysterectomy. I too became suicidal along with the many other typical health, quality of life, and personality robbing effects of female organ removal.
With the propensity of women to listen to doctors over women’s negative experiences post-hysterectomy, we need to make our voices heard. Sadly, it doesn’t appear that the “authorities” are going to help in any way.