hysterectomy experiences

Hysterectomy Experiences: Misinformation and Lack of Consent

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Gynecologic surgeries, namely hysterectomy (uterus removal), oophorectomy (ovary removal) and C-sections, are the top overused procedures in the U.S. Only 10%, at most, of hysterectomies (and probably fewer oophorectomies) are considered necessary as cited in the “Hysterectomy Facts” section of this article. The 90% “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. The surgery was recommended or sometimes forced on a woman for reasons that are not typically medically warranted suggesting that many gynecologists use unethical and fraudulent tactics, such as those discussed here and here.

Worse yet, after the surgery any negative effects are dismissed by the doctors as unrelated or untreatable. This leaves women fending for themselves. With the internet, she finds us and discussions ensue. We thought it was time to highlight those comments, to show what women are saying about their experiences. For the next several weeks, we’ll be re-publishing some of the most telling stories of declining health and profound feelings of betrayal after female organ removal.

Deceit and Bullying

The following comments are the most striking examples of “fraud in the inducement” which is defined as “the use of deceit or trick to cause someone to act to his/her disadvantage” as defined here. This definition goes on to say that “The heart of this type of fraud is misleading the other party as to the facts upon which he/she will base his/her decision to act.” My article here explores the con of female organ removal. The HERS Foundation wrote a blog on “fraud in the inducement” which can be found here and has 100 comments. Here is my personal story of how I was scammed. Other women who’ve written for Hormones Matter have also been given hysterectomies without (informed) consent. Their stories can be found here, here and here.

The first comment listed below is the most glaring example of fraud, as the doctor fabricated the woman’s fibroids and was deceitful about her ovarian cyst. Thankfully, the woman sensed that she was being played and did not fall into his trap. It’s so important that women get their medical records and do their own research. But, unfortunately, medical records cannot always be trusted either so we can’t count on them to protect us from fraudulent tactics as evidenced in this first comment. This woman’s gynecologist lied in her medical records to protect himself. My medical records from both my gynecologist and my gyn oncologist contained lies as did those of many women with whom I’ve connected.

Donna writes:

“When I was 41, I had a couple of irregular periods but otherwise I had never had any gynecological problems…. So, I went to an OB/GYN who was VERY well known and popular in my city… he examined me and said my uterus was the size of someone at 3 mos. pregnancy. A couple of days later, I was back in his office to discuss the results. As soon as he walked in, the first words out of his mouth were, “You need a hysterectomy.” I was taken aback, but thought to myself, okay–maybe. I said, “Is it fibroids?” And he said, “Yes! Multiple fibroids. And a cyst on your ovary.” I still couldn’t really believe it, but went on with the visit. He asked for permission to “go ahead and take out my ovaries if during surgery he sees that they’re bad.” What? I said, “okay—I guess.” But I wasn’t really buying all of this. He told me to plan on “a nice six-week vacation,” and he proceeded to set up the surgery for the following Wednesday, just five days from then. I left being very skeptical…So I called his office the next day and told the nurse that I was not going to have the surgery and the doctor called back almost immediately asking why. I asked him some questions (based on my reading) that he should know: What kind of cyst was on my ovary? I had read that most women have functional cysts on their ovaries during every menstrual cycle, then they dissipate. The doctor can tell what kind of cyst it is on the sonogram. What options are there besides surgery? He was agitated and said he didn’t know what kind of cyst it was until he got in there (lie) and “there are no other options”! (another lie). He said that if I wanted a second opinion, then go get one. So I did. I went to… saline sonogram of my uterus, which would give an even better picture. Imagine my surprise when the results were NO FIBROIDS whatsoever! And, it was indeed a functional cyst. The former doctor outright lied about the whole thing. I wrote him a letter and told him my results that I had no fibroids and to let him know that I know he lied. I asked for my medical records, and on them on the date of my exam, he had written his recommendation for surgery and “all options discussed with patient.” Another horrible lie. Unfortunately, just about every person I know who goes to him has had a hysterectomy. And none of them had cancer or anything very serious. It’s chilling, too, to hear them tell the story because the doctor uses the same phrases that he used on me. That was 15 years ago; today I’m 56 and have gone through menopause naturally, and I never had any other issues. It was simply irregular periods in the beginning perimenopause stage. My doctor at… told me this. The former doctor never once mentioned that it could be perimenopause. I’m hoping more women will question and stand up against a diagnosis that just doesn’t seem right or make sense, just because a doctor is telling them it’s so. Always get a second or even third opinion!”

Marie writes:

“This was never what I wanted. I went for medical attention…. After an MRI, the next day my family and I were told that I had to have an emergency hysterectomy and possibly my colon…. PLEASE help STOP this modernized form of sterilization of woman!!!!”

From Marlo:

“Oh wow. I feel so duped. I had no idea about all these problems after having a total hysterectomy…. I thought everything would be so much better after this. That is what my new OBGYN made me feel like.”

Rachel:

I had numerous promises and scare tactic talk used on me. I would give anything to not have the surgery. I am slowly dying from… and no doctor will help me.”

Jacqueline:

“I had the same disgusting lied to procedure done to me two years ago. Why do doctors castrate woman. Why. It makes no sense at all. Why do they cut out our sex organs? Why do they disable us?… Every woman who has this done has been harmed and brutilized…. Even rapists are treated better.”

Donna:

“I am truly horrified to read these stories…. They all say the same thing (especially if you’re over 40), that “you don’t need your reproductive organs anymore if you’re done having children.” This is an absolute lie… the doctors are very intimidating and we find it hard to question what should be their expert opinion that’s in the patient’s best interests (not their wallet’s).

Robin:

I refused to sign a consent for a ‘complete’ hysterectomy and was promptly knocked out so one could be performed regardless of what I needed or wanted or even agreed to! So, I knew immediately upon waking up in recovery what had been done to me…. I didn’t begin to understand how drastically my life would change from that moment on….”

Amanda:

I too was told more likely than not you have cancer. …gyns are so quick to just to yank everything out…. Additionally, they don’t fully explain options nor explain how serious the surgery will be….”

Shanda:

“I was told I would feel better… but unfortunately… I do not… the worse I have ever felt….”

Elissa:

“I too had a hysterectomy and was told how great I would feel.”

Sunny:

“I had robotic Laproscopic hysterectomy on 10/15/15…. I was told “you will feel like a new person after the hysterectomy.” They were so wrong! I feel 10 times worse…!

Elaine:

“Surgeon basically told me I had to have a hysterectomy, I had gone through menopause so I was not using it anyway.… I feel I was not thoroughly informed and this surgery was the biggest mistake!”

SG:

“… it is too late for me.… I had a hysterectomy 4 years ago… the gyno decided it was necessary… and later told me he found a few nasties down there… I never received any pathology results to indicate this….”

Rebecca:

“Was advised the only option was a total hysterectomy had it on 6th February 2014.… I can’t cope anymore.”

KME:

“Looking back I remember my OB matter of factly telling me that surgery was really my only option and cheerfully started to schedule the procedure right then and there during the initial exam.”

Elissa:

“I too had a hysterectomy and was told how great I would feel… my bones hurt! My whole body hurts! I have more spider veins in my legs now than I remember my grandma having when she was 70.”

Convenient Omissions

More frequently than not, it appears physicians fail to inform women of the potential side effects.

F D:

“I feel very angry that I was never told of these very debilitating side effects.”

Gail:

“My life changed the day I went to a women doctor who did not disclose everything when she recommended a total hysterectomy for me due to a bladder prolapse.… Doctors seem ill equipped or unwilling to spend time to explain thoroughly the consequences of having your lower organs removed. Somebody do something!!!!!!!!!…please.”

Nicole:

“I wish I would have known about all of this prior to the surgery so I could have passed on having a complete hysterectomy….”

Sharon H:

“Oh how I wish I knew all this before my surgery. I would NEVER have had it done.…”

Irene:

“I was never advised about the negative. MY BIGGEST REGRET IN LIFE IS HAVING This TOTAL HYSTERECTOMY.”

Theresa:

“Like others my gynecologist never explained all the side symptoms to me. Had I known I would’ve just removed my fibroids ONLY.”

Elizabeth:

“I had a partial hysterectomy several years ago…. If I had known all this before the hysterectomy I wouldn’t have had it.”

Nora:

“I had a TAH in December. The surgery shortened my vaginal canal by 3 inches. After 27 years of marriage I am unable to have sex. I feel castrated. Can this be reversed? I never knew this could happen.”

Pat:

“I had total hysterectomy 7 years ago due to fibroids. I still regret having it…. I feel duped because the doctors never mentioned the sex disadvantage. I wish someone had told me.”

S M:

“Can’t believe what I have read – I match your situation entirely. I feel so let down by my consultant, these changes to my sexuality were never suggested to me…. I feel numb, panic stricken and so very sad.”

KME:

“I was never told about ANY possible adverse short or long term complications from the surgery, especially long term anatomical changes. Nor was I offered any other choice than the surgery or an unwieldy and painfully uncomfortable pessary….”

Barracuda:

“Oh and you’re totally right about patients not being informed, I went in blind! Went home blind too. I had a short, vague pamphlet that didn’t really answer anything directly about what to expect….”

Julia:

“Again, none of the potential problems, nerve damage and prolapse are not mentioned in the usual hysterectomy surgical blurb. I asked specifically about hormones etc and was assured my remaining ovary would be doing the work of both but in the off chance it didn’t hrt would do the job. Of course I know now that one form of hormone can never replace the delicate balance of multiple hormones….”

Marlo:

“I feel like I am 90 years old when I sit for a while and then get up I cant even walk because the hip joint pain is so bad…. I did not have any idea about the physical changes that are now going to take place.”

Sharonj:

“So I trusted my Doctor and didn’t search on the internet for the side effects of a hysterectomy. I wish I would have… I wouldn’t be where I am today. I guess that means I’m twice the moron.”

Yvonne:

“I came across [sic] this site while once again researching all my post op problems from my recent hysterectomy…. I wish I would have know before how I was going to feel.”

Dismissal of After Effects

When women question their doctors before surgery about various negative effects, they are typically told that the negatives they’ve heard or read about are “nonsense” or rare. When they experience these after surgery, they are typically dismissed as unrelated.

Sharonj:

“My doctor and her nurses told me to avoid the internet so I wouldn’t be scared with any horror stories. The thing is, 4 years post-op and my story is darn near identical to the ones I found here. The endometriosis I had my whole life (I’m now 46) was a cake walk compared to the hell I’m in now!”

Sunny:

“your symptoms do not sound like they are from your surgery… maybe you should see a neurologist.”

DM:

“This is a fantastic piece. So much detail and so much supporting data…. Only wish I’d seen it before my surgery… though I suspect my doctor would’ve told me it was all nonsense.”

Marie:

“I have severe pain I am dealing with, especially on my spinal cord. The surgeon claims it has NOTHING to do with the surgery, but I did NOT have it prior to the surgery. PLEASE help STOP this modernized form of sterilization of woman!!!!”

Post-Surgery Medical Abandonment

Consistently, women express that once after effects emerge post-surgery, their doctors are less than helpful.

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. 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… ‘your symptoms do not sound like they are from your surgery in October 2015– maybe you should see a neurologist.’

WS:

“It became clear very quickly that I had become a different person. I felt like my HEART and SOUL were removed in that operating room. Despite being prescribed estrogen, everything fell apart. I quickly spiraled into a suicidal depression… with a lengthy list of symptoms of hormonal deficiency and endocrine havoc…. Yet a call to my gynecologist/surgeon resulted in being told ‘we’ve never heard of those problems before’ followed by the phone being hung up. He’d now abandoned me as his patient despite having been under his care for 20 years….

Suz:

“… Doctors don’t seem to want to help and didn’t explain all this beforehand.’

Rachel:

“I would give anything to not have the surgery. I am slowly dying from worse pelvic pain, new severe symptoms, adhesions and no doctor will help me.”

Robin:

“I contacted my gynecologist and told him. I begged him to help me…. I was told to find another doctor since I had so many problems.”

ATH:

“I went back to my obgyn (more than once) and was blown off and told pain was common and would go away on its own.”

When Will it End?

These surgeries have been largely unnecessary since their inception in the late 1800’s. There have been efforts by various organizations as well as Congressional hearings, one in 1978 and one in 1993 but still the problem persists. About half of all women will end up having a hysterectomy. And 55% to 73% of them will also have a healthy ovary or ovaries removed. Those are shocking statistics! You can hear the desperation in some of the aforementioned comments. Unfortunately, our voices are also silenced on some of the hysterectomy forums such as the hysterectomy “sisters” site, the UK Patient.Info site and a Surgical Menopause site. The many women’s health organizations seem to only care about women’s “reproductive choice” (access to birth control and abortion). (They probably don’t want to alienate the gynecologists.) The following comment sums it up:

Someone Who Cares:

“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 life long functions of the female organs. It also has a lot of 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.

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 first published on October 13, 2016.

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.

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.

Hysterectomy Experiences: Loss of Sexuality and Emotional Emptiness

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Gynecologic surgeries, particularly 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 done in 2007. 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 and reached 40% of these surgeries in 2012, the last year for which I could find data.  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 fourth of the series. 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.

Although gynecologists typically dismiss women’s concerns about loss of sexuality after hysterectomy, women’s experiences show that it is a common after effect. Many women also report that they no longer feel connected to others and have lost interest in most activities.

The non-profit HERS Foundation did a survey of 1,000 hysterectomized women. These sexual and emotional disconnect / emptiness after effects were reported by a high percentage of women regardless of whether or not their ovaries were removed. Here is a list of those that were reported by more than half of survey respondents:

  • personality change:  79%
  • diminished or absent sexual desire: 75%
  • difficulty relating to and interacting with others: 69%
  • difficulty socializing: 68%
  • diminished or absent pleasure with intercourse: 66%
  • diminished or absent sexuality: 66%
  • diminished frequency of intercourse: 65%
  • diminished or absent sensuality: 63%
  • diminished or absent pleasure with foreplay: 62%
  • loss of affect: 61%
  • diminished or absent orgasm: 60%
  • diminished or absent vaginal lubrication: 59%
  • diminished or absent sensation in vagina: 54%

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 that are evidence of these after effects.

Chris writes:

“They dole out Viagra so men can sustain their erections but perform hysterectomies that destroy women’s sexuality so who are they using the Viagra with?”

Julia says:

“I personally feel a hell of a lot doesn’t get covered,  e.g. scarring, nerve damage,increased chance of prolapse, changes to your sexuality and ability to orgasm as previously use too,hormonal imbalances, weight gain, depression, potential for dehiscence of vaginal cuff (uncommon but does occur) and so on it goes.”

Katrina:

“I can ditto many of the comments made. I had a hysterectomy 3 years ago and it has literally ruined my life! I have no desire for sex when, before the surgery, I loved it and was very active with my husband. Now I have no desire and intercourse is extremely painful so we have virtually no sex life and it is ruining our relationship. It has also changed my appearance and not for the good…. I’m desperate.”

Erin:

“…my boyfriend of 12 years as of Sept 2016 attempted to have intercourse two separate times in which it was painful for myself which was an obvious turn off to him and unsatisfying to him because it felt like he was hitting a hard, scarred, shortened vagina which was a complete turn off for him.… miss terribly the amazing sex life we once had. We have not been intimate for 4 years now. Have no idea if he is faithful to me sexually. I am depressed and miserable knowing what our relationship once was…. thoroughly depressed and feeling anxious and alone… very little self esteem and I feel my whole body and look is different.”

Carla:

“I have the same difficulties and I have not found any solution for me but I now am becoming much better at satisfying my husband with other sexual acts, oral, and anal. While I get very little out of it, he has accepted that we cannot do the things we used to.”

Rhonda:

“I had a hysterectomy at the age of 19. They left one of the ovaries but it no longer works. I’m 46 now and struggle with having the desire to have a healthy marriage with my husband.”

Wendy:

“I had a subtotal hysterectomy thirteen years ago when I was 33. It was 6 weeks after my daughters birth…. I have the most wonderful husband and he has stuck by me. I love him so much but it has changed our relationship…. I am not really interested in intercourse and get about 10% of the feeling I used to. It takes forever to orgasm and emotionally this is hard to accept.”

Wendy:

“I realise that this experience has altered the person that I am. I get panic attacks if I feel out of control- fortunately not often but it is always there. I am also mega determined at times…. My pre baby need to go up the career ladder has gone and I would be happy I the same job to the end of my career now. In so many ways I have changed but whether this is down to my hysterectomy experiences I don’t know.”

Elizabeth:

“I now have experienced a loss in my sex drive and my orgasms are smaller and less often.”

Chris:

“I am 64 and had a full hysterectomy one year ago…. I have suffered through all the problems as everyone else listed here. 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 and our sex life is now that of senior citizens due to my loss of sensation. Before I was multi-orgasmic, now I can barely have one, my clitoris suffers from erectile dysfunction….”

SG:

“I had a hysterectomy 4 years ago.. as part of prolapse surgery..,the gyno desided it was necessary…. My waxing sex drive plummeted and no more big Os for me..now it is a ripple compared to a tsunami. I am now on estrogen patches which do not seem to increase anything.”

Jacqueline:

“I had the same disgusting lied to procedure done to me two years ago. Since then my life has been hell. A living hell. Why do doctors castrate woman? Why? It makes no sense at all. Why do they cut out our sex organs? Why? Why do they disable us?”

Ashley:

“I had a full hysterectomy almost exactly a year ago…. I am struggling a lot with the changes in my body. I never get wet enough or stay wet. The tissue on my vulva is very thin and almost always tears with sex. I can still have an orgasm but it takes much longer. My vaginal ones aren’t as strong and it is almost impossible to have a clitoral orgasm now. My clitoris is tiny. I mean really tiny. I don’t really even think about sex anymore. There is rarely desire or arousal at things that once made me go nuts. I feel broken.”

GPLD:

“After surgery I feel exactly what you described about sex.”

Nora:

“I had a TAH in December. The surgery shortened my vaginal canal by 3 inches. After 27 years of marriage I am unable to have sex. I feel castrated. Can this be reversed? Why are doctors doing this to women? I do not have cancer…. I never knew this could happen. I’ve been using dilators but it’s not helping. I’m feeling hopeless.”

Pat:

“I had total hysterectomy 7 years ago due to fibroids . I still regret having it. I have no libido and sex enjoyment and orgasm is like 30 percent compared to the 100 percent pre TAH. I feel duped because the doctors never mentioned the sex disadvantage…. I wish someone had told me.”

Yolanda:

“I have loss some of my sex drive, but i can still have an orgasm. I have also lost some sensation in my nipples, but not completely.”

Helen:

“Had robotic, total hysterectomy in December. Immediate menopause. No fun. Shortened vagina. No fun. Physical changes to body. No fun.”

BeBe:

“My hysterectomy was necessary due to Essure permanent birth control. One migrated to my uterus and I was sick from that poison in my body that the FDA approved. I’m 11 months post op. Tummy still tender. Hurt the day after sex in the cuff area. And miss the good orgasms. I’m furious at all of this. I’m fatigued. Have migraines and have become very anti-social.”

Sandra:

“Three years ago I had a hysterectomy. They removed one of my ovaries tube and uterus. Since my surgery I have had nothing but negative effects on my life. I no longer want to have sex with my husband. Before I had a great sex life!!”

NJ:

“I am two years post total…. I am heart broken and wish I could turn back the clock… I miss my sexuality so much and I am battling with the sense of disconnect that some have described. I am able to achieve a faint orgasm with a vibrator but it comes and goes so quickly and if I try to lengthen the plateau period then I get a strange painful ache in my somewhat diminished clitoris. I have, I think, scar tissue inside the entrance to my vagina which makes penetration painful to the point that I am apprehensive at the mere prospect of sex.”

S Mc:

“Cant believe what I have read – I match your situation entirely. I feel so let down by my consultant, these changes to my sexuality were never suggested to me. My story is worsened by the fact that I am trying to heal my marriage of 20 years after discovering my husbands long term affair. I feel numb, panic stricken and so very sad.”

Julia:

“I’m now 4 and a half months post hysterectomy and vaginal repairs…. Worst decision ever! A battle with vaginal dryness, burning and ph that constantly changes. Trying to find a lubricant that doesn’t irritate my now fragile tissues is a nightmare. Oestrogen cream currently burns like hell so I can’t use that atm. Oral Oestrogen help but then cause outbreaks of thrush…. My sex life has tanked, sore and lack of sex drive. Today I spent 20 minutes icing my vulva, such is the irritation but at least the swelling has gone down. I use to be an active, strong and sexually fulfilled woman and now I feel opposite.”

Julia:

“Even now it shocks me when a Doctor says you don’t need your uterus or cervix for orgasm. That’s total bs, because I have ‘shallow’ orgasms in the few times I’ve managed sex since ‘that’operation. I desperately miss the old me.”

Karen:

“My heart has literally been breaking as I’ve read these posts and understand how many other women feel the way I do. I had a total hysterectomy five years ago…. He did everything to scare me into having the operation and quickly…. now when things should be perfect I feel like my very soul has been removed. I was such a sexual creature before they took away all my sexual organs and now my very lifeblood has been taken away. As many have already mentioned on this site, the sexual energy, which was a huge part of my being, simply doesn’t exist anymore and when I do feel sexually excited, not only is it a different feeling to before but it’s almost impossible to have an orgasm and it’s not worth the effort to reach a climax as the orgasms are just so insignificant when they do happen. I used to experience the most intense orgasms and even at age fifty one, when I had my operation, I still had the most amazing pleasure from sex so I feel so desolate at the loss of those intense, fulfilling emotions and feelings.”

Linda:

“I had a complete hysterectomy in 1998. Since then, I too have lost something that was VERY important to me as a woman. You described what I’ve gone through..to a T. When I spoke to my doctor who performed my surgery, she had no idea what I was talking about. It is like a death, and I too struggle. I feel robbed, cheated and incomplete as a woman.”

12032003:

“My heart can’t express how I feel reading this article. If I only knew what I know now. They got me, I was only 27 when I got a full hysterectomy…..crying. It was tumor and myth doctor told me the same thing,”

Lisa:

“Eventually, all of these surgeries resulted in a complete hysterectomy about 6 years ago. I have been married to my husband for a year now. Thankfully we were friends for years before we married but I still feel sorry him. He has a healthy sex drive and is very loving toward me. I have absolutely no sex drive and I am completely turned off by the thought of sex, I am attracted to my husband and he takes it so personally when I turn him down, I guess I need to get better at pretending.”

Micah:

“I am 25 I had to have a hysterectomy at 24 after I had my son on June 16,2014.. My husband,is younger then me He is 20 and of course my sex drive no longer exists at all!! We have had sex 2 times this month it is about to cause US to divorce!”

Eme:

“I had a partial hysterectomy its been 1 yr and 3 months I’ve had nothing but pain since then. I’ve noticed if I have an intense orgasm I’m in pain after for hours.”

Denett:

“Hi I am 35 and went a full hysterectomy in Jan.2015. At first it did not seen to be a problem with mys ex life but now it has been 4 months since i have been able to climax. I am a sexual person and love having sex with my husband but don’t know how to explain to him that sex is just not working 4 me anymore. I am still young and I am really sadden and hurt because of it….”

Linda:

“I too had a hysterectomy that could have been avoided. It completed destroyed a very active and important sex life. I have tried all sorts of measures (including hormones) to improve function and though some helped to a small extent, nothing has ever been the same. 7 years later, I am saddened and feel destroyed. I try so hard to maintain some level of intimacy, but there just isn’t enough feeling to make it worth it. I miss my old life, and the closeness I once had. I just feel so hurt that one of the most important aspects of my life was robbed from me by a greedy doctor who just wanted to make money. I would do anything to have my function restored.”

Tanara:

“I had an hysterectomy 04-22-2015, the reason was I was suffering from a prolapse uterus, it actually fell out my vagina so the doctor tells me I need a hysterectomy and now I’m so emotionally cause it was like taking my womanhood away.”

Leigh:

“Sex yup still painful even more so than before days after I hurt.”

Erica:

“I’m 44…. I’m experiencing severe… have no sex drive… I’m an emotional basket case…. I’m so depressed and feel like I’m 80 years old. I’ve been reading all of these comments and it brings tears to my eyes.. I know I’m not alone.”

Michelle:

“when I think back to before my hysterectomy I was a happy bubbly person with a good job, husband etc I changed becoming old tired in constant pain not interested in sex the depression etc the list just goes on and on. I have never been right since…. I have just started in a new relationship and a sex life which is very difficult as I have zero sex drive also worry due to the rectal prolapse, during sex I am experiencing sharp pain that radiates into my hip leg etc and it is now constant I have been on morphine for pain for many years it helps me cope but it is not helping this pain.”

Suz:

“Sex is not the same libido is gone and nipples no longer harden.”

Ginger:

“sex too painful, this surgery ruined my life”

Kat:

“This surgery did great damage to my body and affected changes in my hormone levels, libido, etc. but nothing as drastic as when I had the oopherectomy to remove the second ovary. Since that time, libido has been all but nil…. even with uterus-only removal, you will most likely be left with the issue of no longer having the capacity for uterine orgasms (if you did before), only clitoral. While you can learn to ‘enjoy’ these orgasms, they are much more shallow and sometimes even frustrating.”

Jay:

“If only I could turn back time, I would vastly change my decisions…. I certainly miss my uterus and cervix sexually, with orgasms being a shallow version of what they use to be.”

Karen:

“I had a hysterectomy almost 3 months ago. I hate what has happened to my body. My vagina is not even similar to what I remember. My breasts are so painful I don’t know how to aleviate it. Sex…misery. I feel so alone…. I feel a needling pain in my lower abdomen/vagina.”

Lisa:

“I am reading this in absolute disbelief. I feel heartbroken and sick for any woman that has been falsely led by their doctor and has had their womanhood remove. Those organs make us a woman, they are so much more than just organs, they effect every fiber of our being. I’m so sorry, I really can’t even express myself in words.”

SharonJ:

“The thing is, 4 years post-op and my story is darn near identical to the ones I found here. The endometriosis I had my whole life (I’m now 46) was a cake walk compared to the hell I’m in now!… I have to put Lidocaine inside my vjay 15 mins before sex & then lube just to make love with my husband of 26 years!”

ATH:

“The thought of having sex makes me cringe because I know the kind of pain that will follow. WHY IS THIS HAPPENING??”

Rebecca:

“Was advised only option was a total hysterectomy had it on 6th Febuary 2014 recovery ok. Sex life non existent major loss of feeling, weak pelvic floor – leaking pee when exercise, sneeze, rarely laugh. Feel the lowest I have EVER felt in my life….”

Lisa:

“8 months after Hysterectomy, I am miserable…. The Posterier repair is a nightmare. I am too small for my husband and along with the lack of sensation, its not fun at all.. Even after 6 vaginal births, I always enjoyed sex. Though it feels great to my husband, and he is sensitive about my feelings, I have now developed an anxiety about sex.”

Sheli:

“Im 11 weeks post op of my hysterectomy. My doctor… said id have a brand new vagina and be cancer free and id feel like a brand new person. Omg! Exactly the opposite has happened…. at this point, i wish i wouldve never had the surgery even if it meant keeping the cancer. Im a 34 year old…  feels like im 90.

3/4 of my vagina has no feeling…. I have to I guess spend the next 20 years trying to figure this thing out. My sex life, relationship with my husband has all been affected by this horrible surgery…. I feel like my life is over. I’m changing and developing new symptoms all the time. My husband is saying I’ve changed since my surgery…. I fear i may lose my husband and with losing myself like i have due to this whole experience of the surgery, its just too much to bear. I feel like nothing and a no body. I don’t feel like a woman anymore. I feel like I’m a disappointment to everyone and don’t know how I’m going to live the rest of my life like this.”

Jake writes:

“My wife and I had a very good sexual component to our relationship and post surgery it is simply not the same – not at all. It is always funny to me how “doctors” tell you everything was/is fine post hysterectomy. I can absolutely tell you that it significantly and permanently damages/destroys the sexual component of a healthy relationship – PERIOD. Don’t bore me with the “well there must be something else wrong… blah blah. My wife and I had a very good sexual component to our relationship and post surgery it is simply not the same – not at all. Think long and hard and then think again before you allow any “doctor” to permanently mutilate your body.”

PS says:

“My wife had a hysterectomy about 18 months ago. We have been married for 24 years and have always had a passionate sex life. Two weeks ago, she informed me that she no longer has romantic feelings for me and has asked that I not make sexual overtures to her of any kind. This hit me like a ton of bricks. I have read this article and feel very strongly that the effects experienced by WS describe what has happened to my beautiful wife. Needless to say, I am devastated. As a 49 year old man, I’ve realized that sex is actually more than sex, it is an intimate connection that forms a bond. That bond is now missing and I’m reeling… I feel an absence of affection not only for myself, but for my children. My two daughters have reached out to me repeatedly saying that they feel a loss of connection with Mom. I’ve had a few weeks to process this, and as time has passed, and as I have thought more and more about what WS has written, I have begun to grieve not only for myself but for my wife. I feel very strongly that a part of her is now missing.”

Joshua:

“I’m unsure how to ask for help but my fiance had a cervical hysterectomy back in January of this year and she seems to be having issues with mood swings sex drive depression and fatigue. I want to help her and be there for her but no matter what I do or say doesn’t seem right. How can I help her? This is cause a very big strain on our relationship. Plz help me help her.”

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 loss of ovarian function after hysterectomy.

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