share your hysterectomy story

Share Your Hysterectomy Experience

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The hysterectomy and oophorectomy industry continues to flourish. There are over 600,000 hysterectomies every year. The oophorectomy rate is about 70% of the hysterectomy rate, some performed at the time of hysterectomy and others as separate surgeries. About 90% of these surgeries are for benign conditions (elective). These are merely estimates based on samples of inpatient data from short-term, acute-care, nonfederal hospitals along with hysterectomy and oophorectomy outpatient percentage estimates. According to the aforementioned publication, the rate of outpatient (ambulatory) hysterectomies increased from 14% in 2000 to 70% in 2014. Outpatient oophorectomies increased from 57% to 84% over the same time period. The Centers for Disease Control (CDC) reports only inpatient hysterectomies which is why hysterectomy rates are typically understated by the media. A 70% understatement is a gross misrepresentation and outpatient hysterectomies may now exceed 70%.

Hysterectomy is seen as panacea for a multitude of women’s health issues. Unfortunately, it is not, and yet, this perception that hysterectomy is a cure-all survives, largely because of false information from gynecologists, gynecologic oncologists, other medical professionals, hospitals, surgical centers, the media, and women who have had the surgery(ies).

The prevalence of hysterectomy and oophorectomy leads the public to mistakenly believe that a woman’s sex organs are disposable. In many cases, gynecologists fail to provide their patients with the necessary factual information to make an informed decision about these surgeries, leaving women and their partners to learn about the side effects after the fact. Some of the more commonly reported side effects include: bladder and bowel dysfunction, skeletal and figure changes, sexual dysfunction, emotional emptiness, and impaired ovarian function. Although some may believe these side effects are rare and thus rarely discussed pre-surgery, comments on these hysterectomy articles indicate they must be more common than many realize.

What makes these side effects even more troubling, is the fact these procedures are rarely needed. Women are coaxed into the surgery under the false pretense of cancer or pre-cancer or told it is their only or best option. Finally, many women’s organ(s) are removed despite having specifically told their surgeons that organ(s) should not be removed. Here is just one of those stories.

In light of the problems with hysterectomy, the HERS Foundation is collecting stories of post-hysterectomy problems. We are supporting that effort. If you would like to share your story, consider participating in the “In My Own Voice” project. To learn more, click here.

If you would like to share your story here on Hormones Matter, please contact us here.

Thank you in advance for sharing your hysterectomy experience.

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WS has a passion for educating women (and men) about the overuse and harm caused by gynecologic procedures. She also wants to raise awareness that health care has evolved from being patient centered to being profit and quota driven. This paradigm shift is responsible for excessive unnecessary testing and over-treatment which is not only costly but can cause more harm than good.

15 Comments

  1. I’m not sure if anyone reads these posts anymore as they are years old, but still thought I would post the he’ll I have been through so others can hopefully avoid it. I was told when I turned 40 that I had to go off birth control pills due to risk of stroke. My PCP told me I could either have a hysterectomy or go back to having heavy, painful periods. So, he sent me to a surgeon and I had it done. Boy I wish I had gotten a 2nd opinion because there are so many other options. They said they would not take my ovaries so I would not gain weight. Gained 40 pounds in 2 months despite going back to walking 4 miles a day and eating 1000 calories a day. When I went back for my 2-month follow up the surgeon told me to exercise more and eat less. Talk about body structural change I lost my waist that I was always lived having. I’ve been on a diet since first grade and had an eating disorder and prior to surgery finally lost the baby weight plus and enjoyed shopping for clothes and showing off my new body (lasted a few months). Two and a half years after hysterectomy, I suffered an evisceration of small bowel (surgeon did not close me up right so my small bowel came out of vagina (paramedics took me to closest hospital where hysterectomy surgeon was in call and told my husband to get me the hell out – he and hospitalist said they had no idea what to do with me). Fortunately, I was transferred to a much better hospital where they saved my life, but since they didn’t take a good look at my chart they missed some very important things. I am now almost 3 months post op having vaginsl vault prolapse repair surgery and vaginal rejuvenation surgery (there are only a few specialists in the US who are truly qualified to do this – don’t just go to anyone). I found one in Atlanta who has an excellent record and he is so confident he offers a 5-yr guarantee if anything goes wrong he will fix for free. Just be aware he does not take insurance, but after having all of my female organs hanging outside my body (all grade 4 prolapses), for 6 years this was my only option to gain some quality of life back. Do t get me wrong, it’s not perfect. I had so many adhesions it more than tripled surgery time, lost blood, severe drop in BP (still fighting after years of high BP), anemia, severe fatigue, and worsening depression/anxiety. I cannot tell you how many times I have considered suicide. The one and only reason stippling me is my 21-yr old daughter. I hate my body again, I hate shopping. I hate just about everything. So, if anyone learns from my story – ALWAYS get a 2nd opinion!!!!!!

  2. I had a hysterectomy when I was 32 for endometrosis and adenomyosis. What endo/adeno didn’t rob from me, the hysterectomy took. No one cares or understands. I had a baby just before the surgery, and all he has ever known is this shell of a human that was left behind. Since then, I’ve lost my house, career, my sanity. I’m unable to do basic things; my short term memory is gone. Everyday I struggle with anger, medical ptsd and suicidal thoughts. I don’t think I will make it another 10 yrs. Living on this planet, in this society, has utterly destroyed me.

  3. Hi everybody !- My name is Sunny and i am 6 weeks post-op !- I had a hysterectomy because of a large fibroid.They removed my fallopian tubes, and my uterus !- Unlike everybody else who usually gets constipated ,i got the opposite !- diarrhea everyday since then ,and currently still have it !- I am beyond frustrated, im super depressed,im totally losing hope !- I’ve been to the hospital since then for dehydration,Uti , my stool test came back normal and blood !- Nothing is working ,none of the medications prescribed nor natural remedies im trying !- Now they want to send me for a colonoscopy while im having chronic diarrhea !- Not looking forward to that one !- Im having major heartburn….im literally praying to God for help with this !! …thankful i finally found a place to understand im not the only one with complications ,because believe me it feels like it !!!

    • Sunny – I’m sorry to hear you are having diarrhea. I experienced the same and it was horrific, going as many as 8 times some days. I did not seek treatment until long after and never got a diagnosis. My bowels have never returned to normal but they very gradually improved over the years. It’s good you are having this checked out. I wish I had pursued treatment early on. Please come back with updates as you seek out answers. I hope things improve soon!

      • Thank you for your support !…if i could go back i would have never gotten it done !- Truly miserable !- Thanks again for sharing your story!

      • Hi all, I am also having troubles after a total hysterectomy and it is scarring the hell out of me. I had complications during keyhole surgery and went to abdominal surgery. I also had both ovaries removed. This was done February 2019. I am having lower abdominal discomfort with sharper pains in the lower left area around the groin. When I get up from a seated position my stomach feels heavy which seems to go away after walking around a bit. I have no idea what this is and I am very scared. Has anyone else had this heavy tight feeling. My bowels also have been all over the place but I do go every day so hopefully nothing wrong there. However at times it does hurt in the lower stomach to urinate and move my bowels. Put this down to the endometriosis though. My uterus had to be cut away from my bowels. Please help put my mind at rest if you also have lower abdominal discomfort or pain. I just can’t make myself go to the doctors again. I’m terrified in what they will find.

        • It’s hard to say what’s causing the pain. Hysterectomy involves so much cutting as well as displacement of organs. Even adhesions / scar tissue can cause pain. And since hysterectomy is not a cure for endo, endo itself could be one source of your pain.

          I have had bowel problems since my surgery. They have improved somewhat over the years but I have abdominal pain that can last for hours when both my bladder and bowel are full. This typically happens in the morning but, thankfully, is not a frequent occurrence.

          I did have some tests done by a gastroenterologist which ruled out some problems but couldn’t bring myself to do any other tests.

  4. I would like to leave a comment from a man’s perspective. I just lost the love of my life after a hysterectomy. I was with her for 16 years. I always felt fortunate to have this woman in my life, and I was not shy about telling others how lucky I was. My relationship was as good as it gets. She stuck with me through thick and thin. I was in the car business and several years ago things went south . We went from a large home and a great social life to a tiny house and alot less money to spend. We were still happy. That all changed after a hysterectomy that was done to prevent cancer. I realize now it was something that should have involved more research. Nothing was ever mentioned about psychological side effects. It started slowly. First she didn’t want the massages she used to really enjoy. Sex went from whenever to a schedule and not much time was spent at it. Then everything I did started to annoy her. She quit wanting to do the things we always did. Our home is in the country and very private. There was no more sitting out by the fire and just enjoying to be together. Eventually after a couple glasses of wine she would tell me she hates me. It advanced to shouting matches and one day she just walked out. I know she is depressed but not willing to seek help. I am not young, 63. I never thought for one minute that we wouldn’t be together to the end. Now she wants nothing to do with me and told me to move on. My advice to anyone reading this, GET A SECOND OPINION.

    • I am so sorry that hysterectomy destroyed your marriage. My heart goes out to you. It is shocking and shameful that gynecologists get away with hysterectomizing 45% of U.S. women.

  5. I got a hysterectomy end of August for severe endometriosis. I have sporadic back & shoulder pain now but I’m not sure if that’s just from getting back to normal from resting the past 12 weeks. I’m 33.. both ovaries and cervix was removed. I was supposed to do 6 months no estrogen but couldn’t so I started hrt. Next month I see a bioidentical hormone specialist to see if maybe some of my pain could be from enduring 6 weeks of surgical menopause and a few months of very low estrogen due to fear of stimulating all the endo that is left on my colon and appendix. I also had very bad pcos, and fibroids. I can tell you I fear I’ll never be the same but I’m an anxiety ball right now due to my hormones being WHACK. This specialist has promised to get me feeling back to normal. I just really hope this sporadic pain is not here to stay…for life. If it is.. idk how I will cope because I was boxed into this surgery to try to prevent me from needing further surgeries. But at a huge cost to hormones and estrogen loss now.

    • Michelle – I am so sorry you were “boxed into” this surgery. And that you were not fully informed about its aftermath. Unfortunately, that is the norm when it comes to hysterectomy as well as oophorectomy. I cannot imagine having severe endometriosis. It really puts you women between “a rock and a hard place.” My heart breaks for so many of you undergoing hysterectomy and ending up with a whole new set of problems. I hope you can find help for the problems it causes.

  6. After my hysterectomy I always got my yearly pap now for almost 3 yrs I have had abnormal pap’s why? Because my last appt 6 months ago dr scared me while she was giving me pap she goes omg I said what/what’s wrong she replied you have some of your cervix left in you? then told me if I were you i’d Go to that dr & ask why! So I looked at her& said “Why” ? then seen her in hall while leaving & said dr, why did you do this& she replied oh I just decided to leave some? she was seeing me twice a year so I decided to get 2nd opinion & the gyno I seen told me why would she want to see me twice a year,she knows pap is going to be abnormal ?when asked if he could remove rest he told me I would get worse& mostly require many more surgeries ? so I now face The Ugly C because of her medical mistake! I have had many surgeries after this surgery& almost died twice!i want Justice!! Does anyone know a good attorney near Austintown,Youngstown,Boardman,Canfield surrounding areas? Please lmk!

    • Sometimes they do purposely leave the cervix. It’s called a “partial” or “supracervical” hysterectomy. Abnormal paps are not always something that needs to be treated. A number of basically harmless things can cause an abnormal result. Was a colposcopy and biopsy done to see if you have anything concerning going on? You certainly don’t want to have any procedure, either removal of your cervix or cervical cells, if you don’t need it.

  7. I had a hysterectomy 5 years ago because of uterine cancer. My uterus and cervix were removed. I still have my ovaries and Fallopian tubes. I’m still cancer free 5 years later and I have no regrets about having the surgery done. I have not experienced any problems physically that I’m aware of. I’m a widow and my husband was ill for several years before he died. Perhaps that’s the reason I’m not awAre of any sexual difficulties. Everything else seems to be fine.

    • Denise, I am sorry you had cancer but am glad that you have not noticed any changes that you are “aware of.” I am curious what prompted you to go in search of hysterectomy information.

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