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Healing From Lupron and Endometriosis With Thiamine

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Lupron, endometriosis, thiamine

I was diagnosed with stage 4 endometriosis in 1996. In 2017, I was ready for a hysterectomy. I had two children and was finished with childbirth. I was having a lot of pain on my left side where my ovary was located. My Veterans Administration GYN refused to do a hysterectomy without first giving me Lupron shots assuming that my pain was due to the endometriosis. I was trying to hold down a very demanding government job and missing a lot of work from the pain. I had two laparoscopic surgeries in 1996 and 2001, respectively. Both were to excise the endometriosis. At the time, I was required to take Lupron in order to have a hysterectomy, I was 46 years old. I was denied a hysterectomy after my son was born in 2000 because I was considered too young at 30 years old to have a hysterectomy.

Endometriosis in the Colon and Lupron

After the injections of Lupron, a colonoscopy confirmed a diverticula pocket in that spot that was painful and others on my large intestine. The laparoscopy and excision in 1996 confirmed that my endometriosis extended to my large intestine. The colonoscopy found that I have so many pockets of diverticulosis, a resection surgery was not possible. Basically, if I were to become septic due to an endometriosis/diverticulosis flare, they would need to remove all of my large intestine. My options were very limited. My GYN wouldn’t perform a hysterectomy and laparoscopy under the assumption that the pain I was having was due to endometriosis. He convinced me to start the shots to see if they would help the pain because he assumed the pain was due to endo. I didn’t research the Lupron injections much prior to receiving them. I fully trusted my GYN. He mentioned hot flashes and suppression of symptoms with estradiol.

Immediately I noticed a difference. I don’t take prescription drugs of any kind unless I am really sick. I had nothing for any preexisting conditions. I could not tolerate the injections and function at work. I had severe hot flashes every few seconds 24/7 for three months even with add back estradiol. Worse, the estradiol made my migraines flare and so I was a hot mess. After stopping estradiol, my migraines continued to flare and still do without supplementation. I was also having diverticulosis flares every month sometimes twice a month. I had terrible gas and severe IBS symptoms. My work leave, FMLA and advanced sick leave were dwindling from all the visits to the various doctors. Within three months of my last Lupron injection, I was forced to retire or be fired for not being able to work. I never fully recovered from the Lupron.

Finally, a Hysterectomy

My GYN finally agreed to the hysterectomy in 2018 where they found my left ovary and left fallopian tube in one mass of adhesion scarring with my large intestine. The GYN removed the left polycystic ovary, left and right fallopian tubes along with my uterus, which had fibroids, and cervix leaving me with just my right ovary. Prior to the hysterectomy, I began noticing some numbness and cramping or burning in my feet at work that was much worse at night. I had the same kind of cramping and burning in my lower back too. I would later learn that these are symptoms of thiamine deficiency. Trying to keep it together at work with all of this was a nightmare.

Around this time, I also began having severe nausea and pain in my stomach. The GI doctors did an upper GI scope to confirm duodenal ulcers. The digestive issues, especially the diverticulosis should disqualify anyone from having Lupron as Lupron causes major digestive upset according to the FDA fact sheet. My digestive tract was inflamed from mouth to anus post Lupron. I had an inflamed esophagus and ulcers, diverticulosis flares, IBS with constipation and diarrhea and hemorrhoids that I couldn’t heal with meds. The low FODMAP diet helped though.

No More Pharmaceuticals

In 2019, I finally stopped taking all pharmaceuticals. No pharmaceutical made me feel better. Every medication I took for GI issues and neuropathy made me worse. I only took one for one or two weeks at a time to log all my side effects from each so I could have them added to my growing list of allergic reactions. I did have some sensitivity issues with prescription drugs prior to Lupron, just not as bad. I have the MC1R redhead gene. Redheads are more sensitive to pharmaceuticals and have more adverse reactions. I struggle with topical solutions as well. I couldn’t use estradiol patches because I’m allergic to the adhesive. Thankfully, my primary care physician also has endometriosis and suggested herbal supplements and remedies. All of this ,surprisingly, is from the veteran’s hospital. I was ordered by her to stop working. This was a final attempt to heal my ulcers, as they would eventually kill me if I could not find relief.

How I Healed Myself With Thiamine and Diet

I decided to try high dose thiamine after researching it via Drs. Lonsdale and Marrs and Elliot Overton. I started with 100mg daily for 6 months. Then 500mg for 3 months and currently 1000mg (500mg 2x daily). The thiamine works as well as the acupuncture with EMS. I also take Alpha Lipoic Acid and Dandelion root daily. The increases in thiamine are proving to be a significant factor in recovery. If I miss one day of supplements I’m sick for several days so I’m convinced that it is working.

To help myself heal, I no longer work a 9 to 5 job. I follow a low FODMAP diet with modification for diverticulosis and supplement with elderberry or dandelion for inflammation and immunity, turmeric, prebiotic + probiotics, magnesium for bone loss, palpations, anxiety, alpha lipoic acid for neuropathy, high dose thiamine for neuropathy, fatigue anxiety and brain fog, b vitamins and D3+K2 for b1 uptake regulation and delta 8 CBD for fibromyalgia pain and fatigue. I have regular chiropractor adjustments of my neck and lower back. Acupuncture and light therapy on my feet helped with the burning and cramping.

Where I Am Now

Currently, I have no endometriosis pain, only some lingering PMDD. I have no ovarian cysts and the migraines are not as frequent. Now only a couple a month versus weekly. I still have some burning and cramping in my legs and feet, but it is tolerable. Before thiamine, I was bedridden. The back and neck pain I had previously has improved with thiamine along with physical therapy/yoga and regular chiropractic care. I no longer experience diverticulosis flares with the new diet and supplements for inflammation like dandelion root, turmeric, and elderberry. I switch out the dandelion and elderberry because they work about the same. Depends on what is on sale.

I am able to stand for longer periods of time. My anxiety is significantly reduced, my palpations are gone, I can remember things, and my ADHD flare ups are minimal. In 2022, I only had two mild diverticulosis flares. Prior to the diet changes and supplements, I was having them once a month. I went from being bedridden completely to cooking (I still need to sit some), cleaning with short breaks, gardening with a sit on garden cart, and walking about a half mile every few days. I still have numbness in both feet. I am hopeful that lowering my A1C will resolve this. It may be permanent. Only time will tell. I’m going to the VA this week for a checkup and requesting more PT to see if it will help. They did an EMP on both legs with normal results. That was pretty painful but I felt nothing in my 3 little toes on both feet. Overall, I am doing much better with the higher dose thiamine and have much more energy.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Conquering the Uterus – Trends in Hysterectomy

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hysterectomy

Every 10 minutes, 12 American women lose their reproductive organs, every day of every year. Hysterectomy is second only to cesarean in common surgeries. Approximately 660 women die each year in the United States from complications related to hysterectomy. Thousands more suffer long term side effects associated with oophorectomy – removal of the ovaries. The most common reasons for hysterectomy include:  uterine fibroids or rather the menorrhagia, heavy bleeding associated with the fibroids and endometriosis, an incredibly painful condition where uterine tissue grows outside the uterus. Both conditions are hormonally modulated, plague millions of women and take years to develop.

One would think that with such extended period of disease progression, 5-10 years, researchers and clinicians would have ample opportunity to develop innovative treatment protocols, long before the surgical removal of the uterus was necessitated. One would be wrong. Despite the cost of long term care leading to, and as a result of the hysterectomy; despite the outcry from the hundreds of patient associations, some with high profile members; despite the billions of dollars spent annually on performing what should be last resort surgeries, there has been no innovation in diagnostic tools for these conditions and no new therapeutics for women’s reproductive health developed in over 50 years, unless you call the re-purposing of old meds innovation.

Instead, innovation in women’s healthcare, much like American healthcare in general only magnified exponentially, comes at the end of the disease progression – when no other choice but surgery exists. Let’s build a cool robotic tool to remove even more uteri. Sure it will cost significantly more and have a higher complication rate, but the technology is so impressive that does not matter. Forget about developing early diagnostics and less invasive, more effective therapeutics, just take it all out and look cool doing so. Who would not want to perform surgery remotely with a million dollar piece of medical technology? Women don’t need their uteri anyway – a win win for all involved.

Robotic Assisted Hysterectomy

The robotic, joystick controlled, remote surgical tool is an impressive piece of engineering. With a price tag of over a million dollars per, it provides the cutting edge stature that all top-notch hospitals strive for. An added bonus, it makes gynecology, the long derided medical profession, the cool kid on the block. But does it work?

Well, not really. Sure it removes a woman’s uterus more quickly and with less scarring; a single ½ inch belly button scare versus two or three ½ inch abdominal scars, but it costs more and doesn’t reduce complications – may even increase them a bit. Compared to the minimally invasive laparoscopic hysterectomy, the robotic assisted hysterectomy costs $2000 more per procedure. As of 2010, about a quarter of all hysterectomies were performed robotically. That’s about $300 million dollars per year more to perform a robotic hysterectomy with no added gain health.  When combined with the costs multiple hospital stays, ineffective therapeutics and possible other surgeries that often led up to the hysterectomy, it is clear why women’s healthcare is so expensive.

Perhaps we could use our health dollars a little more wisely. Maybe we should spend some of those many billions of dollars or even a fraction of the $300 million spent annually on robot surgery, on prevention, early diagnostics or more effective therapeutics.

Update

Since this article was originally published in 2013, additional reports of complication rates for robotic surgery have been published. In a study of 298 patients undergoing robotic hysterectomy published in 2015, the complication rate was 18%. In 2017, a study of complication rates of a single surgeon using the robot, was 5.5% suggesting that some surgeons are better with this tool than others. In comparison, a study looking at 4505 hysterectomies performed by the same team between 1990 and 2006 (3190 were performed by laparoscopy, 906 by the vaginal route and 409 by laparotomy) saw the complication rates below 1%, significantly lower than that of the robotic surgeries, but again demonstrating that the skill of the surgical team is paramount.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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This article was published originally on March 18, 2013.

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Hysterectomy’s Best Kept Secret: Figure Changes

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hysterectomy secret - figure changes

There are many misconceptions about the after effects of hysterectomy. There are a number of reasons for this. First and foremost, gynecologists are not honest with women. They present hysterectomy as merely the end of our ability to have children. A bonus is no more periods. Secondly, their professional society, ACOG, has a lot of influence on government and the media. Therefore, much of the information women find also misrepresents hysterectomy as benign. And last, but not least, most hysterectomized women fail to share the after effects. So it is no wonder secrecy abounds.

Over the years, I have written about many of the deleterious after effects of hysterectomy here, here, and here. Read the comments on any of these articles and see the thousands of women who have suffered. Among the least well recognized of these effects, however, are the figure changes that develop post-hysterectomy; changes that are related to both the anatomical effects of the surgery itself and the hormonal decline that ensues. Figure changes are hysterectomy’s best kept secret.

How Hysterectomy Changes a Woman’s Figure

How does hysterectomy change a woman’s figure? The “bands” (medically known as “ligaments”) that suspend the uterus are also the support structures for our midsection. They keep the spine, hips, and rib cage where they belong. The severing of these ligaments causes our entire torso to collapse. The hips widen, the spine collapses, and the rib cage drops onto the hip bones. This causes a shortened and thickened midsection, protruding belly, and a loss of the curve in our lower backs.

These unnatural changes lead to back and hip problems, loss of mobility, poor circulation in extremities, and chronic pain. Nerve injuries are another source of pain and loss of mobility. “Hysterectomy cripple” is a term from an old gynecology textbook that reverberates in my head. Two of my articles and readers’ comments on this best kept secret can be found here and here. Some women also talk about these changes here.

Other Harms of Hysterectomy

The uterus is essential for a woman’s whole life to keep her healthy. So are the ovaries. And the Fallopian tubes. We were not made to be disassembled. Studies prove it. Yet gynecologists continue to treat the female sex organs as disposable.

Although hysterectomy’s best kept secret is figure changes, there are a number of other harms. Hysterectomy’s effects on the bladder and bowel are explained here. Many women report sexual dysfunction including loss of desire. Feelings of emotional emptiness are common. So is chronic fatigue. Even the ovaries (vital endocrine glands) don’t escape unscathed. Their impaired function causes a whole other set of problems related to the diminished supply of vital hormones. For many, these life altering changes cause break-ups of romantic relationships and families. The effects can also end careers leading to financial hardship and shattered lives. The societal effects are far-reaching.

It is one thing to have cancer and have to live with these trade-offs. But over 90% of these surgeries are unnecessary since less than 8% are done for cancer.

Why Do We Not Know About the Figure Changes?

How can we not know that hysterectomy causes figure changes? Shouldn’t we have noticed this in women who had hysterectomies? Yes and no. Women gain an average of 25 lbs. in the first year after hysterectomy according to the HERS Foundation. That can certainly mask figure changes. Not only that, the torso collapses gradually so is not immediately discernible. And women tend to dress differently in an attempt to hide their altered figures. For women we didn’t know before their hysterectomies, we have no “before” view. Conversely, how much does any woman really critique other women’s bodies anyway? Not so much. Nor can we count on women to divulge these changes just as they fail to share other effects. Proof of this association does not require studies as it is evident from diagrams of the female anatomy. Hence, the reason hysterectomy’s best kept secret is figure changes.

So Much Despair

I had a hysterectomy 13 years ago at age 49. The effects were immediate and severe – physically, mentally, and emotionally. I never could have imagined that a person could age so quickly or feel that their very heart and soul were ripped out! You can read my story here. I quickly realized that my gynecologist of 20 years was dishonest about the consequences. And my medical records show that he also lied about my diagnosis and treatment options.

The changes to my figure amplify the despair that has plagued me since that fateful day. Like the author of the book Misinformed Consent, I cannot bear to look at myself in the mirror. And I shudder to think how much more height I will lose from my already small frame. Even more unsettling is the recent onset of hip and leg pain and midsection discomfort. I fear that reduced blood flow is causing my hip joint to deteriorate (known as “avascular necrosis” or “osteonecrosis”). I know some hysterectomized women who had hip replacements in their 40s or 50s for this reason. Great… more worries about my future health. The thought of any medical treatment, especially surgery, terrifies me!

The Harm of Female Organ Removal

There is long-standing evidence of the harms of female organ removal. Yet, nothing is being done to stop the abuse. It affects almost half of U.S. women. The states’ medical boards don’t care, and neither do legislators. Even women’s health organizations don’t care. Their platform is “reproductive choice.” I guess I was naive to think any of them would care. Then along came the #MeToo movement. I thought this was our opening to make our voices heard. But no. People don’t seem to view this as a form of sexual abuse or harassment. Evidently, perpetrators of surgical crimes against women get a free pass.

The ACOG works hard lobbying Congress and the media to keep it that way. One only need look at the Advocacy menu on their website. Hysterectomy is a big money maker. So maximizing these surgeries and denying the harm is in gynecologists’ best interest. The recent increase in resident minimum requirements from 70 hysterectomies to 85 is evidence of this. There is no training for myomectomy, or removal of fibroids, despite fibroids being a common reason for a hysterectomy. A gynecologist petitioned the ACOG to mandate myomectomy training, to make this uterine-sparing option more accessible. The ACOG rejected his petition. Clearly, the Ob/Gyn specialty puts profits before women’s health.

One has to question why insurance companies continue to authorize and pay for so many unwarranted hysterectomies. What documentation are gynecologists submitting to get these authorizations? My insurance company refused to divulge what my gynecologist submitted to get authorization. I had an ovarian cyst yet my medical records show authorization for a “hysterectomy.” There was absolutely nothing wrong with my uterus or other ovary as proven by pre-op imaging and post-op pathology. He should have removed only the cyst.

Protect Yourself

Don’t allow yourself to be deceived or bullied by a gynecologist. If you do go into an operating room, protect yourself. Modify the consent form to explicitly state what can and cannot be done and removed. Have the surgeon(s) sign off on all revisions.

You certainly don’t want to endure a hysterectomy’s figure changes or any of the other negative effects. The HERS Foundation and Ovaries for Life are good resources for understanding the lifelong importance of the female organs.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, and like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.

Image by Tayeb MEZAHDIA from Pixabay.

This article was published originally on June 13, 2019. 

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Hysterectomy Trauma

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It was April 2007, I remember seeing my gynecologist for the second time that year and receiving the same painful test, revealing that I had pre-cancerous cells and required a hysterectomy. I was then directed to see a gynecological oncologist for further testing and another opinion. I was not too scared at this point, being it was pre- cancer and not actual cancer yet. Little did I know what was ahead of me.

When I went to see the specialist, he said that I had endometrial cancer, and needed a hysterectomy right away. I was so devastated by the news, scared and confused, me cancer? This was May of 2007, my upcoming 42nd birthday was on the 18th, and here just a few days short of it I was being prepped for a full hysterectomy. I remember before going in how scared I was. I had to sign affidavits that said if they bumped into other organs such as my bladder they wouldn’t be responsible. All the risks involved were also listed, even death. I had no choice. I had to get this emergency surgery, because the cancer was pretty bad.

A Hysterectomy From Hell

The last thing I remember before my surgery was counting down. Then I awoke to the IV in my left wrist, blood just oozing out of it, and all on the sheets. I thought someone shot me because there was so much blood. I also woke up with the gurney underneath me, which they forgot to remove before placing me in the hospital bed. I was confused and hurting so badly. After attending to me with these complaints, I was cleaned up and given a morphine pump for pain, which didn’t even take the edge off. I remember crying in such pain for many long hours, and no one could do anything with my pain management. Two hours after the hysterectomy, I was made to get up and walk. It was so very painful, I thought my stomach was about to come out and hit the floor. I did their painful exercises and was sent home five days later.

At home it was no picnic either. I had a young school aged daughter at the time. My mom was tending to her, so mostly I had to tend to myself. I finally got the chance to look at my surgery site in the mirror, and it was like a horror show. I was cut open from side to side, hip to hip, and had large staples closing the wound. I had a draining hose on each side of the wound. I felt like crap, looked like the bride of Frankenstein, and didn’t have a hospital bed and so I couldn’t easily get up to go walk or to the bathroom. Each time I pulled myself up I thought I would pop those staples out. Each painful step I took, I thought my stomach would just flop out.

The Callousness of My Physician

Two weeks later, I went to see the doctor who did the surgery for a follow up. I asked him, “why do I feel and look the way I do?” “He said what you mean,” very sarcastically. He said I just had a triple surgery. I said “what?” “Well,” he said, “beside the hysterectomy, we had to give you a panniculectomy because there were lymph nodes in there and we couldn’t take the risk of the cancer spreading. Then we had to give you an appendectomy because you had fecal matter in there, and that would have later erupted.”

My mouth stood open with disbelief. I could not believe there was so much wrong with me. Then he said the drains still needed to stay in and he would be sending in a nurse to my home to show me how to empty the drains. He said in six weeks I would be healed, and that I could go back to work then.

I was feeling like a barrel of pooh, mentally and physically and he is already planning my life. I went home. I did all my exercises. I was still in pain. I lost feeling on the outer part of my stomach, had trouble going number two, and my mental health was getting worse. At the 6-week check-up, he took the tubes and the staples out, and tried to write me a note to go back to work. I told him that mentally and physically I wasn’t ready. He didn’t like what I said. I told him that he bumped into my bladder and that I leak urine and have to wear pads now. He said “we told you this might happen and you signed papers.”  He said, “I’ll write you out for another six weeks, but then you have to go back.” I was feeling like I didn’t matter. My feelings didn’t matter. What the hell? I know how I feel.

I went home started to feel anxious and get more depressed. I began having flashbacks of trauma that I experienced in early childhood that wasn’t ever dealt with. I wondered why this was happening to me. Haven’t I suffered enough? I decided to see a disability lawyer. She was kind and wrote me a letter to give to my doctor to give me more time, and she didn’t charge me. I went back to him. He took a copy of it, wrote me out again and said “when you return this is it, you have to go back to work.”  That is when I went to my job and started to collect disability. While I did that, I fought for my disability. It took several times, but I got it. After all the fighting, I had a nervous breakdown, and went into a mental health facility. I was getting help for my issues that weren’t dealt with in the past. It took years to work on myself. All these years, I noticed my physical health deteriorating. I went to the doctors and told them my horror story. Of course no one wants to put blame on what the surgeries did to me physically, only my mental doctors supported the fact that my surgeries caused my breakdown.

Where I am Now

Today I suffer physically from the hysterectomy. I have no sexual libido and no feelings or wanting to have sex. Thank god I have a fiancé who has been through the whole thing with me and who completely understands. I suffer bladder leakage, recurring UTIs, which are very painful, hot flashes, dried out cracked skin, spinal stenosis and neuropathy caused by the stenosis, and sciatica nerve issues from the stenosis. Mentally, I suffered from PTSD, severe anxiety disorder and severe depression.

After 13 years, I am doing better now mentally. I am back working, but still collecting some disability. I have my own place with my fiancé and my dog. If you ask me was I happy with my hysterectomy, my answer is yes, because it eliminated the cancer, but it came with a deep price, the pain and suffering that I will have to live with for the rest of my days.

We Need Your Help

More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

Yes, I would like to support Hormones Matter.  

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Hysterectomy Experiences: Chronic Fatigue

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A few years ago, I began writing for Hormones Matter about the gross overuse and adverse effects of hysterectomy and oophorectomy. Year after year, these posts generate tens of thousands of views and hundreds of comments. The comments inevitably follow the same pattern of unwarranted removal of organ(s) without informed consent and ensuing declining health. We are publishing a series of articles highlighting women’s comments. This is the fifth of the series and addresses the common complaint of chronic fatigue. The first article is about lack of informed consent and can be found here. The second one talks about how our “exterior” settles / collapses after the uterus is removed. The third addresses organ dysfunction and the fourth is about loss of sexuality and emotional emptiness. Although the 90% elective rate of these surgeries would imply that they are “restorative” or at least harmless, medical literature and women’s experiences prove otherwise.

Chronic Fatigue and Loss of Stamina

Many women commented on my other articles about chronic fatigue and loss of stamina and vibrancy since their hysterectomies even if they still had their ovaries. Although sleep problems were a common complaint, even absent those, women just couldn’t seem to get past the chronic fatigue and lack of stamina. These experiences match those of the majority of 1,000 hysterectomized women surveyed by the non-profit HERS Foundation. Those results are as follows:

  • Loss of energy:  78%
  • Profound fatigue: 77%
  • Loss of stamina: 69%
  • Insomnia: 61%
  • Unable to maintain previous level of activity in home: 34%

The complete list broken out by hysterectomy only, hysterectomy with one ovary removed, and hysterectomy with both ovaries removed can be found here. Below are comments from some of my articles.

Chris (age 64) says:

“My husband and I had and unbelievable sex life, I had loads of energy and strength and was able to joke about being “37”. I now feel like and old woman. I want to sleep more then move, I have little strength….”

Jacqueline:

“I have no energy at 38. I have more problems now than I did before surgery.”

NJ:

“The Testim has helped my energy levels but I have lowered the dose as my body hair increased.”

Joshua:

“…my finance had a cervical hysterectomy [sic] back in January of this year and she seems to be having issues with mood swings sex drive depression and fatigue.”

BeBe:

“My hysterectomy was necessary due to Essure permanent birth control. One migrated to my uterus and I was sick from that poison…. I’m 11 months post op…. I’m fatigued. Have migraines and have become very anti social.”

Joan:

“I was a very active women, always running around from 6am till 9pm…. I am tired all the time.”

Teresa:

“I’m 12 years post op…. I stay fatigued and have no sexual drive and depression….”

Sue:

“Hysterectomy [sic] in 2007…. Severe fatigue, bloating, pain under rib. No answers…. My life has been horrible since.”

Jill:

“…my energy levels have dropped too.”

Jen:

“I had TAH kept my ovaries (boy, that was a battle)…. I have had so many problems since…. I truly feel awful. My energy levels are just depleted. I’m dealing with idiot doctors rift now plus I am too tired to go to all these specialists…. I also have severe rib pain right and left. I have bowel problems too and the nausea and fatigue is hell.”

Irene:

“Ever since HYSTERECTOMY my whole personality has changed, gone from an outgoing lady to a hermit rarely interested in socialising and I have little energy and gone from 60kg to 70kg.”

Annele:

“Had my surgery in 2010, compared to photos of me and my energy levels, sex live, I have aged about 10 years in a 5 year period. My mother also went for her hysterectomy during 2012, she experienced similar side effects.”

Sharon:

“I can hardly get out of bed. I have no appetite, no energy, and I feel awful.”

Elaine:

“I ache constantly, I still get intense flashes and my energy level has gone from active (pre-surgery) to minimal…..I am so sleep deprived and so sore….I feel I was not thoroughly informed and this surgery was the biggest mistake! I cry and yearn for who I was a year ago.”

Julie:

“Ever since surgery I had so much pain, discomfort, fatigue, and now depression. I used to be real busy with my family going outdoors for hunts, fishing and picnics. Now days I just barely do anything and my whole life has changed. My health has just been going down.”

Lyn:

“After 3 months post surgery, I had to retire my full time profession as a licensed therapeutic massage therapist due to fatigue, lower back, sacroiliac joint, hip, leg and foot pain!… My balance has been compromised and have had (4) falls since surgery…. I use to enjoy my walks with my dog and make attempts daily, but I become winded and fatigued almost instantly….”

Sue:

“My health just continues to decline. I was the most active person before this surgery, now I do nothing most days. I’m very concerned about my bowel issue and the relentless fatigue.”

Angela:

“I saw my mother destroyed by a hysterectomy at 38. This has been going on for decades and the denial has to stop. Women don’t even have to tell me they’ve had one. I can see it – in their faces, their hair, their figures, their lack of vitality.”

Jacqualine:

“take ambien to sleep”

Marlo:

“I can’t sleep at night.”

KA:

“taking a sleep aide”

Rebecca:

“Can’t sleep, wake up with headaches every day. Having major sweats, Loosing my hair and my mind!”

I caution any woman who is told she needs a hysterectomy and/or oophorectomy or is considering one to heed these comments. With the gross overuse of these surgeries, chances are she’s being sold a false bill of goods. It’s not always a good idea to rely solely on your doctor’s advice as Someone

Who Cares cautions:

“After 40 years of enduring this “disabled” existence, it breaks my heart that no matter how many of us try to warn other women, in various ways, the number of these destructive surgeries continues to increase, not decrease.”

A complete list of my articles can be found here. The HERS Foundation is a good resource for understanding the lifelong functions of the female organs. It also has information about gynecologic conditions and treatment options. These two sites, Gyn Reform (especially the studies/citations link) and Ovaries for Life, are excellent resources about the gross overuse and harm of ovary removal or hysterectomy induced loss of ovarian function.

Share your Story

If you have a hysterectomy story, please consider sharing it on Hormones Matter.

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This article was first published in April 2017.

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Hysterectomy or Not?

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hysterectomy or not

Should I Have a Hysterectomy?

I had some spotting once that led to the OBGYN to do an ultrasound test. The test showed that the endometrial lining was thicker than normal. I am on hormone replacement therapy (HRT) and have been on it for 5 years. Prior to that, I was on birth control pills for 10 years. So from the ages of 40-50 years, I used birth control pills and then from 50-55 years, I used HRT, first a cream form of bioidentical hormones and then I switched to a patch (estradiol-combination of estrogen and progesterone). Both at the very lowest dosage.

The OBGYN said that if by ablation he could remove the extra lining then I would be safe for the next 10 years from getting endometrial cancer. But because he was not able to perform it, he said that the uterus should be removed to prevent this from happening. I do trust his opinion. He has been my gynecologist for 15 years, but I really do not want to do this surgery. I am fully aware of the consequences. On the other hand, the possibility of the lining developing cancer is also scary. Also, I am not sure if he was able to get the endometrial tissue for pathology since the cervix was too tight for ablation. If it’s not possible to get the tissues from the lining for testing, then I do have a big problem?

I do not have any other symptoms. I am overweight, but I have been like that for the past 20 years with no major changes up or down.  My fasting sugar is at 110-120 most of the time, which is considered pre-diabetes, so I do take Metformin 500 once a day at night. Other than that, my blood tests are perfect. There are no other issues.

I do not have any family history of any female organ cancers that I know off. None of the females in my family, including grandmothers, aunts, cousins, had any type of cancer. My family history is full of heart disease (heart failure on both sides of the family and heart attacks) and there is some diabetes in the distant family (great-aunts) but NO cancers of any female organs (that includes breast cancer also).

The only reason my doctor suggests the hysterectomy is because he could not do an ablation and my endometrial lining was thicker than normal for my age (55) and menopausal stage. He could not perform the ablation since I have cervical stenosis and the cervix could not be opened wide enough even with dilation.

He says that in order to keep me safe from possible endometrial cancer I must get the hysterectomy. I do not want to do that, but I have no idea how to check the endometrial lining tissue for pathological changes if the tight cervix will not allow to get samples of the tissue. There were tissues taken for pathology at the procedure, which came back negative (no cancer of pre-cancer cells). I am just not completely sure if the tissue was also taken from the endometrial lining or not. He is being evasive and not specific.

What should I do? Any suggestions would be greatly appreciated.

Thank you.

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Hysterectomy: Greed and Ignorance Reign

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hysterectomy greed and ignorance

Hysterectomies and C-sections are two of the most overused surgeries. One in three women has a hysterectomy by age 60 and about half eventually have one. Approximately 600,000 women undergo hysterectomy annually, 50,000 to 60,000 of which are for a cancer diagnosis. This graph (figure B) depicts the number done for cancer (which are typically done as inpatient). However, the graph misrepresents total hysterectomies as it depicts only inpatient figures. In 2014, 70% of hysterectomies were done as outpatient – in ambulatory surgery centers or in hospitals with discharge in less than 24 hours. So one could say that ~90% of the ~600,000 are unnecessary. ACOG says that 76% do not meet ACOG criteria.

The Greed Factor

What is driving the high rate of hysterectomies? The more cynical among us would argue that money or greed is a large contributing factor and there are certainly data to back this up. In this article, a gynecologist talks about attending a seminar where gynecologists were coached on how to cultivate patients for hysterectomy to maximize fees. The healthcare dollars wasted on unnecessary medical procedures, especially hysterectomy at $17B, is discussed here. Another factor contributing to this gross overuse is the failure to properly diagnose and inform patients of treatment options and their risks and benefits. This failure may also be due, at least in part, to greed.

Ignorance at Play?

Still yet another variable may be at play: ignorance. For whatever reason, there is a huge disconnect between the perceived benign nature of the procedure and its reality. The research here, here and here are just a few examples of the compelling evidence of the damaging effects. These effects are affirmed by the thousands of comments on the various hysterectomy articles on this blog and others.

A Gynecologist’s Defense of Hysterectomy

A comment by a gynecologist on one of my articles reflects the ignorance and arrogance regarding the many aftereffects of hysterectomy (with or without ovary removal / castration).

Here is the May 3, 2018 comment by gynecologist Yvonne Treece, MD, FACOG:

There is no or minimal evidence to support many of these claims particularly in regards to pelvic ligaments providing support to the entire torso, loss of sensation, loss of sexual pleasure, fatigue, joint and ligament pain. There is some risk of nerve damage, but it is very small and does not result in loss of sensation over the whole vulva and vagina. There is a small risk of damage to bowel or bladder, with the ureters at highest risk. The percentages given in the YouTube video are grossly exaggerated, and most have no proven correlation with hysterectomy. The uterosacral ligaments are preserved in supracervical and most laparoscopic hysterectomies. The vast, vast majority of hysterectomies are uncomplicated. Most of the YouTube video is false. The false and misleading information is a disservice to patients. Where is the evidence for these claims?

I disagree that 70-90% of hysterectomies are unnecessary. Source? As alternative treatments become available, hysterectomy rates are falling. I am an OB/Gyn, and certainly do not do unnecessary hysterectomies, especially not for profit! That is a very hurtful, and malicious thing to say. It is not true of any one I know. Certainly someone may be performing unnecessary surgery for profit, but that is highly unethical, and illegal. Not mainstream.

Please look at an anatomy book (like the slides on the YouTube videos). A lot of your claims are physiologically nonsensical. It makes me sad that people have bad outcomes sometimes, but it saddens and frustrates me when patients are given misinformation attributing physical symptoms to a hysterectomy when they are unrelated.

I would be happy to have a dialogue with you about hysterectomy. I’m sure we could both learn from each other.

Here is my rebuttal comment: 

Yvonne – As a doctor in a specialty (gynecology) whose training and livelihood is entrenched in doing hysterectomies (as well as oophorectomies), it’s natural to deny and defend. I don’t know how much of your misinformation is due to lack of proper medical training (including intentional omission by medical schools) and how much is in defense of your profession and livelihood. But regardless, I will address your points:

1) The severing of the ligaments that run from the uterus to the pelvic wall cause a collapse of the torso. It’s an anatomical fact. To use an analogy – If you cut through bridge supports, the bridge will collapse. A woman can still be “fit” after a hysterectomy but her figure / skeletal structure will be altered. Her midsection will gradually shorten and thicken (even absent weight gain). Women’s comments corroborate this. Further evidence of this can be seen as an indentation at each side of her back (one woman referred to it as a “plane” across her back) where her rib cage is now sitting on her hip bones. Another telltale sign is a crease / line that starts a couple inches above the navel and then gradually lengthens across her midsection as her rib cage drops. I doubt you typically observe patients before their surgeries and a few years after in their underwear to be able to observe these changes. And it seems many women end their relationships with their surgeons. They certainly don’t need birth control or any other reproductive services.

2) Another anatomical fact – The uterus separates and anchors the bladder and bowel. Its removal displaces them increasing risk for dysfunction in the short and long-term including incontinence and prolapse. With so many women having had hysterectomies, it’s no wonder incontinence is so prevalent.

3) Another anatomical fact – A shortened and sutured shut vagina lacks the bundle of nerves at the bottom of the cervix as well as the tip of the cervix that heightens sexual pleasure for both the woman and man.

4) How can you truly believe that severing of nerves and blood vessels, including those running through ligaments that are severed, does not cause loss of sensation and sexual pleasure? It is basic physiology that innervation and blood flow are vital to sensation. Many women even report loss of nipple sensation. And furthermore, uterine orgasms cannot physically happen without a uterus. This is a HUGE loss for many women. And many women who still have ovaries (the lucky ones whose ovaries haven’t “died” due to loss of blood flow and feedback with the uterus) report loss of libido and sexual function. There are PLENTY of women’s stories of shattered lives on the web if you really care to know.

5) Most hysterectomies may be (in your words) uncomplicated (absent the “surgical” errors of ureter, bladder, bowel damage, nerve damage, blood clots, hemorrhage, infection, morcellated / upstaged tumors, anesthesia harms, death). But the after effects are forever (as are the after effects of some complications when they occur). And shockingly, 55% of hysterectomies include removal of ovary(ies) (equivalent of a man’s testicles) despite the average woman’s lifetime risk of ovarian cancer being a measly 1.3%. More ovaries are removed as separate surgeries.

6) According to Obstetrics & Gynecology August 2013, ~50,000 hysterectomies are done for cancer. That is less than 10% of all hysterectomies making over 90% unnecessary. Media reports of declining hysterectomy rates are misleading in that they typically report only inpatient hysterectomies and the large majority are now done outpatient / ambulatory as I’m sure you’re aware. In 2014, 70% of commercially insured hysterectomies were outpatient.

7) I’m concerned that you also fail to inform your patients of the many increased health risks associated with hysterectomy (with ovarian “conservation”) – cardiovascular disease (3-fold), metabolic syndrome, increased Body Mass Index, increased BP, renal cell cancer, colorectal cancer, thyroid cancer. Ovary removal (castration) or post-hysterectomy ovarian failure is also common and is associated with another whole list of health risks such as cardiovascular disease (7-fold), stroke, lung cancer, osteoporosis, hip fracture, dementia, parkinsonism, impaired cognition and memory, mood disorders, adverse ocular and skin changes, sleep disorders, more severe hot flushes. Even unilateral oophorectomy (with or without hysterectomy) is associated with increased risk of cognitive impairment, dementia and parkinsonism.

Needing CME credits? You may have just earned some although you should have already known all of the above since this is your specialty.

Let the women who have had unnecessary hysterectomies (and those who love them) decide who is doing a “disservice to patients.”

Alternatives to hysterectomy are great but some of those also cause permanent harm. Ablation has been shown to increase risk of hysterectomy due to Post Ablation Syndrome. The blood can get trapped in the uterus (behind the scarred lining or due to a stenotic cervix) and/or back up into the tubes causing chronic and debilitating pelvic pain. Although procedures are the money makers, they should only be used as a last resort especially when they can do more harm than good. That applies to any specialty.

You said you “certainly do not do unnecessary hysterectomies, especially not for profit!” You mentioned you’re an ob/gyn so I assume not a gynecologic oncologist. In that case, all hysterectomies you do should be for benign conditions which makes them unnecessary.

If “performing unnecessary surgery for profit” is not “mainstream” then how do you explain the high rate of hysterectomies when less than 10% are done for cancer? And why do residents have to do so many hysterectomies yet ZERO myomectomies when many hysterectomies are done for fibroids? Yes, it’s very unethical but it’s the “standard of care” so it continues.

It’s no surprise that she did not respond to my rebuttal even though she stated “I would be happy to have a dialogue with you about hysterectomy.”

It Comes Down to Money

Gynecologists are supposed to be the experts on female anatomy and physiology. There is an abundance of medical literature on the harms of female organ removal. So how can they not know the consequences of removing the uterus and/or ovaries? As Upton Sinclair said:

“It is difficult to get a man to understand something when his salary depends on his not understanding it.”

You can read all my articles about three of gynecology’s destructive procedures – hysterectomy, oophorectomy, endometrial ablation – here. They include citations to medical literature.

For the truth about female anatomy and the lifelong functions of the female organs, check out this video:

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More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.

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Hysterectomy Without Consent

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hysterectomy without consent

Fortunately, the incident in this recount has had limited impact on my ability to relate to family members and continue in employment. Others might not be so lucky, so I am prompted to warn patients that this could happen to them. I was given a hysterectomy without my consent. In fact, I was given a hysterectomy against my explicit instructions to save my organs.

In the years leading up to my hysterectomy at 47, I had yet to enter menopause. I was generally very fit and healthy, but had experienced several ovarian cysts. These were aspirated under general anesthetic using keyhole surgery. The time came when an unusually large cyst formed on each ovary. I sought an opinion from a different gynecologist, a decision I later regretted. The cysts were the size of oranges and caused pain when I moved a great deal, which is why I sought treatment.

The new specialist insisted I needed bilateral surgery so the cysts could be completely removed. This meant a complete cut opening my abdomen instead of the keyhole surgery I had previously experienced. Instead of being back at work in ten days, it would mean a recovery time of four weeks. This daunted me. I am a special educator. People in my field are difficult to replace and I was concerned that my students wouldn’t generalize their behavior with a substitute teacher.

He Said, He Did Me a Favor: Hysterectomy without Consent

I agreed to the surgery. When given the consent papers to sign, I read them carefully. The operation I was consenting to was for bilateral surgery to remove large ovarian cysts. No where did the papers mention any other procedure. For some reason, I hesitated and told him that I never had any intention to have a hysterectomy. I stated that it was my intention to keep my organs. He barely acknowledged me, but he seemed to be paying attention.

My employer understood that I would be away for a month’s sick leave. I organised a month of work for my students, wrote detailed information about each student’s needs and felt confident they would receive proper care.

The day before my surgery, I painted a room for my mother-in-law. The cysts caused some discomfort but didn’t hamper my activity.

The surgeon saw me briefly before the operation. I restated my intention to keep my organs to him then.  Before the anesthetic took effect, I looked at the other team members in the theater and again said, “Don’t remove my uterus and other organs.”

The pain upon waking was unbelievable. I couldn’t understand why it was excruciating. It wasn’t until the next morning that the surgeon told me that I’d had a hysterectomy. I assumed he’d found cancer. No, he just thought he’d do me a favor. I wouldn’t need those organs anyway as I’d ‘already gone through menopause’.

My husband was there the next morning at 7 when the surgeon arrived. I wanted a witness. Although I was still in great pain, I forced him to admit that there was nothing dangerously wrong with my organs, and if I’d been younger or on IVF he wouldn’t have removed them. He looked at my husband and said, “You had a tilted womb; I did YOU a favor!” I told him I never wanted to see him again. He was shocked. He also gave no serious consideration to a decline in sexual sensation or any future difficulties this might have on my health (bone strength, other abdominal organs and heart). I suggested that I would be glad to remove his organs as he had grey hair and probably was finished reproducing anyway.  He found this response absurd as ‘males and females are so different.’

The surgeon did not see me as a whole person, someone who had a responsibility to their clients; he seemed to dismiss the impact such an extensive recovery time (and therefore, sick leave) would have on my vulnerable students.

Many months later after countless correspondences, emails and phone calls, the surgeon was brought before his peers in a meeting organised by the Health Care Complaints Commission. He was told not to do this again. To make certain others got the message, I submitted an article detailing the incident to the journal read by obstetricians and gynecologists in Australia and New Zealand. The article was published.

The hospital representative stated that the surgeon made this decision for me based on ramifications of cysts on my future health. The rep said that is what surgeons do. I think everyone was running for cover, afraid that I was going to sue.

Where I Stand Now

I can still do my work. I am still married, still love my family members and have good friends. I no longer trust doctors. It took years for me to not be filled with anger and resentment when I saw a white coat. I often still boil with anger when I remember my quality of life before the operation when my organs were intact.

There is nothing else I could have done. This is something that I’ve forced myself to believe. If stating my determination not to have my organs removed wasn’t a prompt to discuss things going ‘wrong’, what else could I have said? It seems that when a person is unconscious, the surgeon is in complete control of your body.

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