Hysterectomy Experiences: Broken Bodies

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hysterectomy broken bodies
Gynecologic surgeries, namely hysterectomy (uterus removal), oophorectomy (ovary removal) and C-section, are the top overused procedures in the U.S. Only a small percentage of hysterectomies and oophorectomies are considered necessary since gynecologic cancers are rare. According to this JAMA Surgery article on 2007 inpatient procedures, “Two operations on the female genital system, hysterectomy and oophorectomy, accounted for a total of 930,000 procedures (89.3% and 84.6%, respectively, were elective).” These figures do not include the roughly 300,000 outpatient hysterectomies and oophorectomies. This graph (graph B) of indications for hysterectomy is a good visual of how few are done for cancer (~50,000). However, it is misleading in that it appears that hysterectomies have steadily declined since it only includes inpatient procedures. Outpatient hysterectomies have steadily increased since about 2002. The 89.3% “elective” rate would indicate that these surgeries are “restorative” or at least harmless, but medical literature and women’s experiences prove otherwise.

A few years ago, I began writing for Hormones Matter about the consequences 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 second one of the series. The first article is about the lack of informed consent and can be found here.

Musculoskeletal Changes Post Hysterectomy

The severing of the uterine ligaments, the pelvis’ support structures, compromises pelvic skeletal integrity affecting the entire musculoskeletal system as explained here. The changes – spine compression, widening of hips and descent of rib cage – cause discomfort and chronic pain over time. Our figures reflect these changes in the loss of our waists, the buffer between the rib cage and hips. That’s why women who have had hysterectomies have shortened, thickened midsections, protruding bellies and the loss of the curves in their lower backs. Endocrine dysfunction further compromises musculoskeletal integrity at least from a bone density standpoint but possibly other mechanisms too. This article addresses these changes. Since the changes are somewhat gradual, many women don’t realize that their hysterectomies are to blame.

Nicole writes:

“leg numbness and back pain”

Theresa says:

“My lower back, hips, and legs are constantly killing me after the surgery. My lower back has an inward indentation as if I have a lordosis back. I never had this before neither all these aches and pains.”

Julie:

“I have been told that my lower back injury is also directly related to my hysterectomy as the entire support structure has been weakened.”

SharonJ:

“I have ongoing PT and dry-needling for my lower back, pelvic floor, sciatica & my hips.”

JRM:

“constant back, leg and hip pain. … My once tiny, strong tummy area is now flabby and my entire abdomen is completely numb.”

Sumbil:

“severe pain in my hipbone and my knee and shoulder left side hurting more and left side sole give me pain when I walk.”

Angie Hayes:

“… at 26 I had a total hysterectomy. Worst thing I could ever do!!! … my hips are tilting in and back pain all the time.… I would love to have the week of pain every month I was having for the rest of my life. Instead I now have some kind of pain every day and just getting worse….”

Jill Reif:

I lost my waistline, I look in the mirror and cry. I work out but my joints, especially my hips, legs and back throb.”

Barracuda:

My hips always ache. My pelvis shifted forward because of the round ligament removal, my gait and stance changed…. I can’t take long strides anymore, and letting my knees cross is painful.… That rib to hip thing is real.”

Julie:

I had two university trained health professionals spell out exactly what removing the uterus, cervix, tubes does to a woman’s musculoskeletal system, connective tissues etc and it ain’t pretty! One was a PT and the other a chiropractor. Since they spend their lives rehabilitating injured and broken down bodies they would know.”

Annele Oosthuizen:

“I am so glad I found your post, I thought I was searching in vain for answers, after my hysterectomy I experienced numerous changes, weight gain, ageing more rapidly, facial features and skin texture changed, my figure changed….”

Michelle:

“It’s been a year since my surgery. Most recently I’m having… and joint pain in lower back and hip bones.”

Eva:

“I had a complete hysterectomy in 2004 due to severe endometriosis. Since then my low back, hips and legs stay in chronic severe non stop pain. I am on heavy pain meds…. I have lost 1″ in height since my surgery as well.”

Julie:

“I had a total hysterectomy in November of 2014. I have experienced so many terrible body changes such as the ones discussed. Hips have shifted sides of stomach are wide. No longer a woman’s figure. Legs got very dimply and joints and back ache. It’s as if I feel all these changes as they are happening and causing so much discomfort…. Doctors don’t seem to want to help and didn’t explain all this beforehand….”

Ram Rakh Bishnoi:

“My wife was undergone operation for removal of uterus (Hyp) in five month ago. But now a days back pain and knee pain problems are come to notice.”

Kristina:

“Not only do I suffer with pain every day, My bone structure is different and my lower abdomen is swollen all the time and hangs over my underwear line…. I used to be tall and thin, strong and energetic. The Robotic Laparoscopic Hysterectomy is a lie and a scam for Dr.’s to make money….”

Sherlyn:

“I am a victim of getting Spinal Stenosis 12 months post Hysterectomy. I had to leave my good job 6/2013. I cannot sit long, walk long, stand long. I cannot clean my home, handwriting changed. Heavy legs, arms. Pain all over body.”

Jay:

“I have chronic low to moderate pain for the last two weeks in back and genitals, dismissed as being nothing to do with the hysterectomy and due to sacral/coccyx issues only…. I believe it is all interconnected.”

Lynn:

“Not to mention I feel like my body looks so different in my midsection.”

Sherlyn:

“I had MRI in 10/2013 found that have cervical spinal stenosis. I also have left hip and left lower back pain.”

KME:

“My figure has shifted also and I now have the poochy pot belly you describe. I am slender otherwise. … my lower back aches nearly every day from my altered and off kilter frame, which is now un-naturally front heavy.”

Barracuda:

“Anatomical, skeletal changes, nobody ever mentions those when talking about hysterectomies. My mother and my sister both had them, and never once mentioned anything about the changes….”

Shalyne Lockett:

“I had a total hysterectomy may 2014 and my lower back hurts daily. I can walk a few steps and it’s worse.”

Ann:

“My body was previously bikini worthy, now as others seem to have experienced, there is less support so my rib cage is lower and my abdomen has a bulge. My pelvic muscles also are almost frozen. I have a new large indent in my back now, almost like the plane across where the uterus was has an empty void and doesn’t support my spine.”

ATH:

“I still have severe lower back pain. The pain is debilitating. I can hardly make it through a full shift at work and driving is something that I avoid because sitting in the same position for more than 5 min is almost impossible….”

Yvonne:

“I am 38 and now feel worse than I ever have. Really bad lower back pain and pain in my pelvic area and pain when urination. Inter course is very uncomfortable also.”

Elaine Bailey:

“Surgeon basically told me I had to have a hysterectomy, I had gone through menopause.…  Now every morning is a chore, my knees, my ankles, my elbows, and recently now my lower back is sooooo stiff and sore. If I sit and try to stand I look like an 80 yr old woman. I ache constantly…. I am so sleep deprived and so sore. I cry and yearn for who I was a year ago.”

Jerri Burris:

“When I was 25 I went to my GYN because I was having painful periods. He did a hysterectomy in which he took everything but my cervix. They tried putting me on several different hormones over a 2 year period, but none were right for me. Now I’m 37 and have been experiencing some major issues with fractured ribs. I have had two fractures within a two month period. Both were caused when someone gave me a hug. And I can’t stand on my feet for long periods of time.”

Lisa:

“my knees don’t bend and I have very little use of my arms as my joints are ceased.”

Lisa:

“I now have terrible osteoporosis.”

Julie:

“I had a hysterectomy 8 months ago and still kept my ovaries. Ever since surgery I had so much pain. … I have been having some pains in my ribs, major lower back pains and my incision still hurts.”

SharonJ:

“a flat ass & tummy pooch now too!”

Nerve Damage Post Hysterectomy

According to this article “Iatrogenic nerve injury following gynaecological surgery occurs more commonly than is recognised and is a significant cause of postoperative neuropathy.” There are several mechanisms cited as major contributors, namely, “mal-positioning, improper incision sites and self-retaining retractors.” It cites a 7% rate of chronic nerve pain after surgery with a “bikini” (Pfannenstiel) incision. The femoral nerve is the most susceptible to injury at a rate of at least 11%.

Although not addressed in the cited article, it would seem that the gradual shifting of bones and other tissue could also cause nerve damage especially compression. Post hysterectomy endocrine dysfunction and impaired blood supply may be other mechanisms of nerve damage. This could have a domino effect on organ function since organs require nerves (as well as blood supply) for proper functioning. The above cited article implies this causal relationship in its statement that “injuries to the nervous supply of the bladder and bowel are beyond the scope of this article.” Women’s experiences with post hysterectomy bladder and bowel changes will be addressed in my next article.

Here are some of the comments from women suffering from nerve damage:

Angie Hayes says:

“… at 26 I had a total hysterectomy. Worst thing I could ever do!!! I have pain all the time cause nerves were left exsposed and my hips are tilting in and back pain all the time. All with other health problems I think maybe connected…. I would love to have the week of pain every month I was having for the rest of my life. Instead I now have some kind of pain every day and just getting worse.”

SharonJ:

“I have ongoing PT and dry-needling for my lower back, pelvic floor, sciatica & my hips.”

Sunny:

“My surgery date was 10/15/15. Felt really great up until last week of January 2016…. Noticed drastic, sudden sharp pain from my lower back shooting around the sacrum, up into my spine, all the way to my neck and head. This sharp pain was coming and going sporadically. But now, the excruciating pain in is my lower back constantly. It feels like constant pain in the bone of the sacrum (lower back). The shooting pain up into my neck and head still occurs whenever it feels like it, i just never get any warning at all. I literally cannot sit comfortably…. Now for the past 3 weeks I am experiencing what feels like a “pulled” something or another in my upper, inner left thigh area. It feels like something is pulling hard- like a stretched out rubber band– and it hurts just as bad as my back. I am in so much pain all day everyday and nothing helps whatsoever. Naturally my GYN got his money out of me and conveniently he is all booked and per his nurse (who was nice enough to return my call), ‘your symptoms do not sound like they are from your surgery in October 2015– maybe you should see a neurologist.’”

Sandra Dalton:

“I had a hysterectomy six years ago since then can’t go without a day having nerve pain on my back hips thighs no legs it’s mostly on my right side I work full time and now I’m of work because I in pain all the time. It’s also on both legs I get burning and like someone putting a sharp knife into me went to doctor and he’s said its not connected to hysterectomy I did not believe him”

Cheryl:

“…. I feel as though your article is describing me. …The pain seemed to have originated from the lower back traveling down my inner thigh via my nerve. I thought I was having sciatica again. But this nerve pain never went away, and to this day I’ve still got it. In addition, over the last few months I’ve gotten this excruciating pain after I am in a lying or sitting position. The pain again originates from my lower back and goes down both legs to the point that I cannot straighten up or the pain increases in intensity. It lasts the entire day now.”

F De wazieres:

“… severe low back pain, pelvic pain, left buttock, thigh, knee calf and foot…. during sex I am experiencing sharp pain that radiates into my hip leg etc and it is now constant. … morphine … is not helping this pain….”

Lyn:

“… I will be 2 years post hysterectomy (TAH). I was 52y/o…. After 3 months post surgery, I had to retire my full time profession…due to fatigue, lower back, sacroiliac joint, hip, leg and foot pain!… I no longer can remain for long lengths of time to stand, walk, dance, sit, or lay in bed without the debilitating feeling of flares of chronic pain.”

Ginger:

“Sciatic, disc tears”

Ann:

“When I woke up from my surgery I also had excruciating sciatic pain which has never gone away.”

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 implies:

“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 loss of ovarian function after hysterectomy.

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12 Comments

  1. I can’t believe I thought that a hysterectomy would give a woman a flatter belly since an organ would be taken out.

    1. Cindy, That’s probably what most women think. And for women with very large fibroids, that may be the case even in the long-term but not for others. I regret that I dismissed hysterectomized women’s thick midsections as merely weight gain and lack of core strength. But then I didn’t know them before their surgeries so had no idea what their bodies looked like beforehand. If I could only go back in time… 🙁

  2. Wow,I am so happy to finally find some relatable experiences with post op issues.
    I had no choice in my hysterectomy as I was very ill from a severe infection that almost killed me.
    That being said,it’s been one nightmare after another since surgery.
    I am now 13 months post op,I still have incisional pain on at least a weekly(or more)basis.
    I have constant lower back pain,extremely sore right foot but not all the time.
    Tingling in legs,often,usually every day.
    I had to have the hormones changed that I was on as they were making me suicidal(never been suicidal or depressed before).
    I had to quit my job and have more or less not been back to work in almost a year.
    Bladder issues,very powerful urination and feeling like you need to go far more often.
    Bowels have been a mess and go between constipation (never had before)and extremely loose bowels.I can see that becoming an issue when I get older(46 now).
    Last is an abdominal hernia that I am waiting to get repaired that is making many of these other symptoms worse.
    What I find incredibly frustrating is the lack of follow up.Also,the amount of time that you are not supposed to be doing lots of stuff.I was not physically ready to head back to work and that’s when the hernia happened.
    Also,there is NO patient follow up after the post op at 12 weeks.
    My life has changed drastically as a result and I will probably have to change careers.

    1. AH, I’m sorry you’re suffering with so many after effects! That’s awful that you had to quit your job on top of it!

      I’ve also had bowel problems since surgery which included rather severe diarrhea for around 9 months! I also became suicidally depressed despite being put on estrogen 5 weeks or so post-op. Once I found a more suitable form and dose of estrogen, the depression lifted and most of the other symptoms improved too.

      You’re absolutely right; the lack of follow-up is frustrating and appalling. I’d been a patient of my surgeon’s for 19 years and he dropped me “like a hot potato” when I called his office desperate for help. That’s considered patient abandonment which is negligence and a form of medical malpractice. Yet my state’s medical board said my doctor did nothing wrong by removing my organs unnecessarily and then abandoning me.

      I’m curious if your surgery was robotic or not.

      I hope your hernia surgery is successful and improves your other symptoms! Please write back with an update. Hang in there!

      1. Thank you so much for your reply.
        I was actually put on hormones the minute I was awake in recovery.My issue was the hormones were far too strong for me and because there is so little follow up,it made it impossible for them to catch the issues I was having.The only thing the surgeon seemed interested in was how good my scar looked and if it was healing.
        I had a bilateral,salpingo oophrorectomy but still have my cervix as it had adhered to my bladder after my c-section and it would damage my bladder further.The cut was huge and is from my bellybutton to my pubic line.Surgery was not robotic.
        I had a rare bacteria that destroyed all my reproductive organs in a very short period of time and I had a huge mass they need to remove,there was no way around my hysterectomy from what I can gather.
        Glad to hear that the estrogen improved once you got the correct dose,and that symptoms improved.
        In Canada people don’t sue Dr’s and I am really sorry to hear of how abandoned you were.
        It’s awful,especially when you feel that no one is believing you.Both my sister and my Mum had hysto’s and neither of them ever complained and I am sure they think I am crazy for all of this but I know my body and non one can tell me otherwise as I live it every day.
        I wish you a safe New Year and thanks for writing about all of this.It’s very helpful to know we are not alone 🙂

  3. Hi! I have 2 uterus problems that I am dealing with. I am 36.

    1. I have severe uterine prolapse due to a long labor and foreceps. My uterus can be felt right inside my vagina. I have frequency of urination due to this condition and it’s quite miserable. My doctor says he can do a procedure where he somehow pulls up the uterus (without mesh…I don’t want mesh) and either cuts or ties the ligaments. He puts the uterus back in place and he says it will last me a long time. At the same time, he would do a urethral sling (using my own skin-no mesh) for my severe stress incontinence. Will pulling up the ligaments and cutting and tying them cause the skeletal problems that removing the uterus will do?

    2. Along with the prolapse, I have dysfunctional bleeding. I have polyps that just keep growing back. I have bleeding or spotting 15-17 days per month. I had a polypectomy 5 years ago. My doctor at the time said I had so many polyps in there that there was nothing he could do. He removed as many as he could but said I had to either live with the bleeding or have an ablation as the next step. I’ve been living with the bleeding. I used the MIrena IUD for about 18 months. After the nonstop spotting stopped, I had good results with the bleeding. However, every month on the days I wasn’t bleeding, I had yeast infections. Every single month. Plus, I started to have migraine headaches every month. I never had migraine headaches before. I had the remove the MIrena this past March because I figured the spotting was better than the yeast infections and migraines. My periods have been not too bad since then. Also, I have not had one yeast infection or headache. I was only bleeding and spotting 10-12 days a month. However, over the last few months, I have noticed the spotting and bleeding is picking back up to 15-17 days per month. I’m guessing the polyps are growing back. Obviously the hormones give me yeast infections and headaches so I can’t use those. I use NSAIDS and transexmic acid during my period. However, that does nothing for my almost constant spotting due to the polyps. It’s driving me crazy. Do I have any other options left for the constant bleeding that really deflates me?

    1. Claire,
      I’m sorry you’re dealing with uterine prolapse, incontinence and polyps that cause dysfunctional bleeding. Have you considered a pessary for the prolapse? There are some that you don’t have to change very often. There are many types and they have to be custom fitted. The uterus can be suspended and I’m sure the surgeon’s skills have a bit to do with how well it holds. But it seems I read some studies or articles about a fairly high failure rate in the long term. And those statistics may be understated because women aren’t always forthcoming with their doctors on this problem. This article http://healthcare.utah.edu/publicaffairs/news/current/05-14-2013_pelvic_organ_prolapse.php says that the five year success rate is lower than expected. As far as the techniques of the surgery, I cannot be of help there. However, I personally would not want mesh either since it is associated with some very nasty and permanent problems. If possible, I would want my own tissues used but I’ve read that’s not always possible. Plus it depends on the surgeon’s skills.

      I don’t really have any input on the polyps except to have them removed (again) and see if that helps. Ablation has its own set of long-term side effects especially at your young age.

      You may want to consult with The HERS Foundation – http://www.hersfoundation.com. They may have some suggestions or be able to guide you in finding the right doctor for your situation.

      Best of luck and please keep us posted on all this.

      1. Thank you for your response. Yes, I currently use a pessary. But I’m just not sure it’s something I want to use for the next 50 years. I found this surgeon who says he does the uterine suspensions frequently and gets good results. He says that due to my age (pre-menopausal) my tissues are still full of estrogen so he hopes I will get a good 15 years out the suspension (he’s quite the confident one). Once estrogen drops, he says it may fall again, but that he can pull it back up if I want. And he says if it does drop, it might not drop to be as severe as it is now and the symptoms may not bother me as much as they do now. I’m really considering doing the surgery. I really want to do the urethral sling for the stress incontinence since mine is so horrible. It’s not just a few drops and I have problems even just walking. The doctor says he’ll take a little piece of my skin from my tummy to use for the urethra. I’m unwilling to do mesh. He says it will take me longer to heal but then I won’t ever have to worry about the mesh. Plus, it’s like a tummy tuck, right? I have extra skin from babies and he’ll take some away from me! I have so many stretch marks that a little scar won’t bother me.
        I’d also like to try the suspension to see if it possibly helps with the bleeding. I sometimes wonder since my uterus moves around so much, if this bumps the polyps around and they bleed due to that? If my uterus is solidly in place, perhaps the polyps won’t bother me as much since they’re not getting movecd? I say this because I have no polyps that show up on ultrasound. It’s only when the doctors look inside that they see about 50 little tiny ones and they wonder why they are even bothering me. So to me, that’s worth a try too. I figure if I’m already going through the recovery for the urethra sling that I may as well try to have them tie my uterus back up too. If it does fall, I don’t see how it would be worse than it is now.

        Also, when he does the surgery for the incontinence and possibly pulling my uterus back up, he will try to remove what polyps he can. The problem is that I’ve got SO many that the doctors don’t know which to remove to help me. And they always grow back. I wish I could use some natural form of progesterone to stop their growth? I don’t know if that will work though. The hormone in the MIrena sure helped with the bleeding and I’m guessing shrunk the polyps, but the constant yeast infection and migraines were just not worth it. I’m assuming the mini-pill would be the same hormone as in the mirena so it would probably give met the same side effects unfortunately. And I’d rather be spotting than having yeast infections!

        1. Claire,
          I totally get wanting to go forward with surgery. If I were in your shoes, I wouldn’t want to wear a pessary “forever” either. And your incontinence sounds awful too. They oftentimes do incontinence surgery at the same time anyway because incontinence is a common complication of POP surgery. And yes, being young your ligaments should be full of estrogen hence healthy for use in the suspension. Definitely stay away from mesh for the sling! I hadn’t heard of using tummy tissue but what a bonus (sort of a mini tummy tuck)! I hate my hysterectomy belly but not sure surgery would be very helpful since mine is from the spine compression and hip widening. 🙁 And I would not want to have surgery for just that reason anyway after my hysterectomy experience.

          I hadn’t thought of the prolapsed uterus possibly exacerbating the polyps. If the surgery suspends it more than the pessary, maybe you’ll see an improvement. If not, there are various formulations of progestins. Maybe a low dose of a particular formulation would help. Or as you mentioned, micronized progesterone (Prometrium or its generic) may help. It is of course meant to be used orally but some women insert it vaginally. There’s also a vaginal progesterone, Crinone.

    2. Oh one more thing I failed to mention. The prolapse surgery follow-up study I cited did not differentiate between prolapse in intact women versus after hysterectomy which is a shame. Women who’ve had hysterectomies are at increased risk for prolapse yet they oftentimes remove the uterus to treat prolapse! Makes a lot of sense huh??

  4. To Hormones Matter ,
    I had a full and total hysterectomy aprox,4yrs ago .
    I have in the last two years been struggling with loss of energy ,muskeloleta talk changes and pain. Short term memory loss , inability to function properly at work , take care of my family the way I use to , anxiety , social problems , lack of interest , weight gain , food cravings (mostly sugar) incontsnence both urine and feces . The list goes on for days ! I had endometriosis and two different kinds of cysts that weighed far more than a fetus ! Insomnia and pain and lack of energy followed by disinterest in things I used to find motivating only to be feel inadequate not sexually primarily but as a productive capable woman who used to be very quick to respond and with poor memory obviously find work and life in general a lot more challenging . I feel like people and I must say primarily other women even those who have had hysterectomies themselves less than supportive . I want to thank you for putting this information here as it helps to know that it is not ME but a result of my hysterectomy . I have also been diagnosed with fibromyalgia and possibly rheumatoid arthritis . Life has not been easy to say the least however Iam finding that as I research possibilities as to the cause of my discomfort that I can forgive myself for not getting the laundry in or forgetting what my boss told me literally 2 mins ago . Although there is nothing I can do now to change my choice to have this surgery understanding my situation is helping me to move forward and find ways to cope and live the life I deserve to have ! Thank you very much
    Sincerely Sheri-Lynn Chalmers

    1. Sheri,
      Thank you for sharing your experience. I’m so sorry you’re suffering all these after effects! You did not mention if you’re on HRT or not. Although it isn’t a cure-all, it can be helpful for many of the symptoms associated with ovary removal or post-hysterectomy ovarian failure. However, if you did indeed have endometriosis (some women are told they do when they don’t), estrogen can fuel growth of any remaining endo implants / lesions. But estrogen deficiency will typically cause any endo to die off which is why some women choose to take estrogen after being without for a period of time. Combined HRT is sometimes prescribed to reduce the risk of endo regrowth. Of course, there are some other risks associated with HRT which you would want to understand before taking it. I personally don’t think I could function without it. I know in the first 18 months or so when I was on an inadequate form and/or dose, I was a complete “basket case.” Once I got sufficient estrogen in my system, I could function much better and my severe suicidal depression lifted.

      You’re right about women not being supportive and those who have had hysterectomies are seldom honest about their experiences. Some I know did not share anything before my surgery but admitted to problems after I’d already had it done. As you can imagine, they are no longer my friends. And some hysterectomy support forums enable this abuse of women by censoring negative posts to the point of completely banning those they deem “too negative.” These include Hystersisters, UK based Patient.info/forums and a Surgical Menopause Survivors’ Guide. Shame on them!!

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