Wide Awake: A Hysterectomy Story

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I’ve always considered myself to be someone who takes charge of her life and health. After all, we only get one body, one heart, one set of eyes, one uterus, one pair of ovaries and so on. I never smoked and always exercised. I went in for my yearly pap smears. I never took my good health for granted.

However, as it turns out, I had no idea how my body functioned or how I remained healthy. Not really. I didn’t understand how my female organs and hormones contributed to who I was. That is, I didn’t understand until my life fell completely apart after hysterectomy and ovary removal five years ago. Now, I’m wide awake.

On September 27, 2007, I woke up in recovery after undergoing a complete hysterectomy I didn’t need or consent to. I was coerced into agreeing to removal of my uterus after experiencing a distended abdomen. I looked six or seven months pregnant and was wearing maternity clothes. Only after surgery did I learn that my distended abdomen had nothing to do with my uterus. At no time did I agree to removal of my cervix, tubes or ovaries. Even my doctor agreed that I should keep my healthy ovaries.

When I arrived at the hospital the morning of my surgery, I was presented with a consent form which listed the wrong surgical procedure. According to the new consent, all of my healthy female organs were to be removed. I explained to the nurse that this was not the surgery I agreed to and I refused to sign the consent. As I waited to speak with my doctor about this, another nurse came into my room and said he was going to give me something to relax me. I explained that I didn’t want to be given any medication since I had not signed the consent and was waiting to speak with my doctor.  As I was protesting, he injected my IV with Versed.

That was my last waking memory.

My next memory was that of seeing a nurse I didn’t recognize. I asked her if my doctor was on his way to talk with me and she told me that I had already had surgery. In disbelief, I began to sob and asked what type of surgery. I wanted to know what organs had been removed. She matter-of-factly said “You have nothing left.” I cried out that I wanted to die, a curious fact that is noted in my medical record. Everything seemed to be happening in slow motion. Although I lost a lot of blood and had to be taken back to surgery, I was released the next morning with a prescription for hormones and iron pills.  I had no idea just how much my life was about to change.

I went back to my apartment but everything seemed different. It wasn’t that the apartment had changed. It was me. I felt like a different person. I also felt an emptiness I’ve never known. I assumed this was only temporary and would pass as I healed. I remembered researching hysterectomy and reading about how some women feel emptiness afterward because they can no longer have children. Eventually, I healed from the outward surgical wounds, but the emptiness remained. It was an emptiness that transcended far beyond not being able to have any more children.  I suddenly found myself in a body that didn’t feel like mine. Every bone, muscle and joint cried out in pain. I felt as if I had aged twenty years. My abdomen never did return to normal size. My sexuality vanished. My emotions were blunted. I didn’t know what was happening to me but I was afraid – very afraid. I cried for no reason and for every reason.  I did not want to live in the body I’d been left with.

Not knowing what else to do, I went out to a local bookstore and bought every book I could find on the topic of hysterectomy and hormones. One of the first books I read was “Hysterectomy Hoax” by Stanley West M.D. By the time I finished reading Dr. West’s book, I was finally wide awake. I had been castrated and there was no turning back. Finally, I realized I did not feel like the same woman because I wasn’t the same woman.  I felt a deep sense of betrayal. I became desperate to find a way to “fix” myself.

The truth is that there are over 400 estrogen receptor sites in a woman’s body. Every organ depends on an estrogen type hormone to function properly (there are three main estrogens: estrone, estradiol and estriol along with many more we’re only now beginning to understand) . Estrogens protect the heart, brain, lungs, bladder and more. The thyroid gland has estrogen receptors. When the ovaries are removed, the body often attacks the thyroid. Many women who’ve undergone hysterectomy go on to develop thyroid anti-bodies and/or thyroid disease. I developed thyroid problems almost immediately after surgery. I was first diagnosed with Hashimoto’s disease and then Hypothryroidism. I’ll have to take thyroid medication for the rest of my life. A woman’s brain has estrogen receptors too. Without estrogens, the brain develops diseases such as Dementia and Parkinson’s Disease. Memory and concentration are very real problems I face almost daily. Heart disease is a much greater risk for woman once their female organs are removed due to the loss of heart protection via the loss of estrogens.

The hormone replacement therapy (HRT) my doctor prescribed was not helping and was, in fact, making me feel much worse.  I was taking Premarin – an estrogen made from pregnant mare’s urine. The chemical structure of Premarin is nothing like a woman’s own natural estrogens. Because my body wasn’t tolerating Premarin, I began to research hormones — especially, bioidentical hormones. After I met with a hormone doctor, blood tests confirmed that all of my hormone levels were nearly non-existent. I was prescribed bioidentical estradiol and testosterone crèmes and compounded oral progesterone. Additionally, I was prescribed supplements such as DHEA, Calcium, Vitamin D, etc.  The creams were very messy and didn’t seem to help. I tried wearing a bioidentical estrogen patch (Vivelle Dot) but the adhesive made my skin break out with a blistery rash. Nothing was working.

Finally, I found a hormone doctor who uses bioidentical hormone pellets.  I decided to give the pellets a try even though they are quite expensive. They seem to work better for me than anything else I’ve tried.  My doctor inserts estrogen and testosterone pellets about every three months and I still take a compounded oral progesterone by mouth each night. Many doctors don’t prescribe progesterone for women who have undergone hysterectomy, but I learned through my own research that progesterone is critical for proper hormone balance. Nothing works like a woman’s own natural hormones but for a woman who has undergone hysterectomy and ovary removal, hormone “replacement” is a must.

As the days turned into weeks and the weeks turned into months, I realized that I was not getting back to my old self. In fact, I was getting further and further away from myself. Within the first year of surgery, I was diagnosed with severe vaginal atrophy and third degree bladder prolapse. The pelvic organs I had left, drifted down into the open space left from removal of my uterus. Chronic constipation became a huge problem. I experienced nerve damage that often prevented me from standing or walking. I developed problems with my eyes and was eventually diagnosed with severe dry eye disease. Due to corneal ulcers, I’m now legally blind in my left eye and can no longer see to drive.

Sadly, the aftermath of hysterectomy is filled with a lot of losses. There’s no turning back. Hysterectomy is final. For the woman who undergoes hysterectomy, life is forever changed. I lost my health, my career and then my home. I was engaged to be married at the time of surgery but never did marry. Unfortunately, it’s not uncommon for women to end up divorced and alone after hysterectomy. There have been more times than I’d like to admit that I felt all alone in my devastation. I felt as if I had stepped into some alternate world where I could no longer communicate. Hysterectomy impacts every facet of a woman’s life.  Every single cell is impacted.  And yet, nobody is talking about it.

For this reason, I decided to create a blog site and web site. I knew there must be other women who felt as alone and devastated as I did. Since creating my sites, I’ve heard from women all over the country, and sadly, their stories are all pretty much the same.  The names are different but the stories are the same. Many of their stories are posted on my web site. Most women share the feeling of betrayal. Once they awaken to the many adverse consequences of hysterectomy, they feel deeply betrayed by their doctor for not telling them about the true impact of the removal of their female organs. The trauma can’t be overstated. Women deserve better than this. They deserve to be told the consequences of hysterectomy and informed about the alternatives to hysterectomy. My goal is to make this a reality. I testified in both Indiana and Kentucky regarding hysterectomy informed consent laws and I created a petition on Change.org insisting ACOG (American Congress of Obstetricians and Gynecologists) inform women of the many consequences of hysterectomy and ovary removal (castration).  I support Hormones Matter and their research on hysterectomy. If you have had a hysterectomy, take The Hysterectomy Survey. Your data could save the life of another woman.

My Websites and Social Media

Website: Hysterectomy Consequences

Blog: Hysterectomylies

Twitter: www.twitter.com/jiggaz31

Facebook: www.facebook.com/hysterectomyconsequences

change.org petition: Help Stop Unnecessary Hysterectomy and Castration

 

 

 

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45 Comments

  1. Hi Robin,
    thank you so much for sharing your story. Now I know I am not alone on this journey. For me, it will be a year on 19 days after the surgery. It affected my life, health, my business (I lost all my clients), lost my new car. I honestly thought I was crazy. Until I started doing research and talking to other women. When I asked my doc. he said I would be fine because I was 54. But at my 54 I wasn’t even close to menopause.
    Anyway, I am doing way better now with herbs and natural hormones. I started sleeping and feeling better. I know one thing, we are all different, so there is no one thing fits all. There is a process of trying different herbs, brands, creams, etc.
    We have to raise awareness about hysterectomies and how to deal with such devastating experience.
    thank you again!!!
    Maria

  2. i had a partial hysterctomy in 09 bc of heavy bleeding etc. I was told to keep my ovaries.. I tht everything would be fine. I woke up from surgey with a catheter bc they messed sumthin. Up and i went home for 2 mths with it. Years laters now im experience ing cushions syndrom moon face excessive sweating hair breaking on my head and im growing hair on my chin and nipples crazyweight gain blue strech marks crazy hormones seen a endocrinologist who did labs and sd i had high testosterone levels and recommended a ultra sound tocheck for ovarian tumor i dont really hurt in my ovaries i hurt where my adrenal glands are i asked to have a 24 hr hormone urine test and she was so offended she told me to get a second oppion and hung up on me…something is going wrong and no one is listening to me.so i got my pcp to refer me to another endo dr who does 24 hr hormone urine testing…im not my self i have crazy moods and a sever feeling of fullness under my ribs..i hope the new dr can help me..

    1. I forgot to add the mri i had done showed empty cella in my pit. Glands and a mass in the nasal ararepossible sinus infection. But i had no signs of a signs infection. Kinda wonder is it a tumour and i have a dx of chronic pancreatistis. ..im lost on this weight gain and pain and crazy moods…i cant sleep well times im up 48 hrs on occasion. ..but no one has any answers i so hope this new endocrinologist can help i was dx long time ago with pcos but never really experience any symptoms but repested painful cysts that busted on they on…if anyone has any advise id be glad to hear it…ill keep u informed. …

  3. I am 4 years out from my total H.. God knows, if I had known then what i know now… Life has been much different. I feel like a lost soul… feels as tho I can’t even be accepted by those who really love me…. I just know all my emotions get on their nerves… I was not a woman who cried much before…NOW …. I could fill the gulf of mexico with all my tears. I will go for a few months feeling as tho things are getting better….then like a freight train my emotions hit me. It is so painful to live this way… I wish I could help someone else out there…. I feel so alone at times… no one around me gets it. I don’t want to live in regret…but man is it hard when you change so much. I have heard other women say that a hysterectomy was the best thing that ever happened to them… I can not agree!!!

  4. I am so glad I found your blog.I’m scheduled to have a hysterectomy in two days.I have had a partial tyroud removal,have herniated,disks,have cronic anemia,iron.dif iciency,make,no vitim d.I have a bleeding disorder that makes my peiod longer than usual.sometimes up to 20 days.I’m always tired.In the last month I lost my hair.I have no cancer.I was having so many doubths about surgery.Reading about all the side affects has made me realize that even through this my sex drive is intact.I feel that having the survey really won’t fix my problems but will make them worst. THANK YOU.

  5. i had my full hysterectomy July 1,2015 due to endometriosis. I had endometriosis for 10yrs and told I could’nt have any more children then 5yrs ago I found out I was pregnant. I was beyond shocked..During the 9mths I had no sign of it til 2mths after my son was born. The endometriosis was bck and worse than before. I finally found a doctor who specialized in Endo and he worked on different treatments to help me cope but the endo just didnt get any better. I was against a hysterectomy but my husband and doctor kept tellin me I needed it so I could be out of pain. i got the full hysterectomy and due to the surgery I had a hematoma on my right top incision by my rib cage that the doctor said would go away afterwhile upon healing I just needed to put warm compreses on it and apply pressure. well couple days out of the hospital my right leg kept hurting go to the ER and they tell me I have sciatica. As wks and mths go by I still kept having pain where the hematoma was so i go to my checkup and he tells me i have costochronditis which deals with the rib cage being inflammed. Wks and mths go by still in constant pain when I bend, sit up, lean foward, and cant lay on my stomache anymore. Today its just a struggle Ive had a nerve block injection which is scary and Ive had a permanent nerve block surgically placed and NO RELIEF. I use to be a full time workin mom full of life but since the surgery my life has been rough. I’m always in and out of the ER or doctors office,I NO longer have a husband, I NO longer work cause of this pain and I cry soo much just cause I’m frustrated cause NO one understands. I think I have some type of nerve damage I just wish someone would just listen to my story and help me .Prayer has been my solution so Ik these doctors will find out the problem soon. Thx 4 letting me vent my story

    1. Ree-Ree, we’re listening. Nerve damage post hysterectomy is common. We have an article on that in the hysterectomy section. Many other women experience it. There are physical therapists who specialize in women’s health, one of whom writes for us, Leslie Wakefield. You might consider reaching out to her and finding resources in your area. Might I also suggest you share your story in a blog post here, so that other women can learn from your experience and perhaps share additional insight with you to help you recover. Finally, I am really interested in your comment that you had no endo symptoms during the pregnancy and until 2 months postpartum. That is fascinating. It clearly suggests a hormonal pattern but the hormones of pregnancy and those postpartum are distinctly different.

  6. I am an unconsented hysterectomy victim as of 2 years ago. I want women to understand that keeping your ovaries, tubes, and cervix does not mean that you won’t have any of the problems you would have with a total hysterectomy. My doctors told me to trust them and they pretty much blackmailed me during my pregnancy because I had placenta previa and they claimed my placenta was growing into my uterus (it wasn’t). I specifically told them no to removing any of my female organs during my cesarean and they said I had to put it in the consent form “as emergency only if my life is in danger”. During my cesarean I was supposed to be awake the entire time and could give consent once I knew what was happening. I was knocked out completely without my consent. They stole my uterus. I was suicidal for weeks after, and had problems bonding with my new daughter. They left my tubes, cervix, and ovaries. Not that it matters. I had a sex drive for about 6 months while breastfeeding, so I thought my sex drive wasn’t affected. Well after my milk dried, my clitoris and ovaries atrophied and no longer work. I have joint pain I didn’t know had anything to do with this. No sex drive, my hair fallen out in clumps, brain foggy, and I feel like killing myself all the time. I knew hysterectomy was castration beforehand, that’s why I told them not to do it! I hate the people who did this to me, and I feel so depressed about what I will have to go through to be able to have a second child. That is, if I find a new partner, because I’m getting divorced now thanks to all of this and what I’ve gone through. If a woman has the choice, I would say look into other options and do not get on the operating table at all!! I had to choice because I had to get my baby out and my placenta was blocking my cervix, but I would have never in my life gotten on a table just to “let them take a look”. These doctors are sick and they have no conscious. Also please note that it was all men who did this to me.

  7. Robin,
    I just got done reading your story. First let me thank you and the rest of the ladies for sharing their stories. I also had a hysterectomy in March 2016. I was faced with the news on a Monday and immediate surgery on Wednesday of the same week. Absolutely no time to think about what was before me. I remember looking at my husband before surgery and crying. You see I was blessed with one child ( my life- I never knew what real love was until I had my baby), my son was one day shy of being a month early ? I was told due to me being high risk I could probably never have another child. I know now that this is true, I’m unable to ever give birth again. I also know that since my hystertomy my blood count has not increased as I just had to have a blood transfusion. I still feel low of energy and my thinking is not always clear. I feel like my body is coming apart. I just found out my thyroid is low and not functioning so they have put me on thyroid medication but no really sure it’s doing anything. I do wish I could go back in time and refuse the hystertomy.

    1. Karen, I’m sorry that you’ve had a hysterectomy and, like me, were told it was urgent leaving you no time to research or understand the implications. Like Robin, I’ve also written a number of articles about hysterectomy for HormonesMatter (my author name is “WS”). You can find my articles by searching for “hysterectomy” in the search box in the upper right hand corner.

      The overuse and abuse of hysterectomy (as well as oophorectomy / ovary removal) has been ongoing for decades. We need to speak out to stop it in whatever ways we can. Two prominent organizations have Patient Safety arms and may be of help in exposing the overuse and harm of hysterectomy. ProPublica’s Patient Safety webpage can be found here – https://www.propublica.org/series/patient-safety. On the right hand side, you’ll see a link to “Share Your Story” and also contact information for the two patient safety journalists. They were doing a hysterectomy survey but I could not find the link. The other organization is Consumers Union, an arm of Consumer Reports. Here’s their Patient Safety webpage – ttp://safepatientproject.org/. Click on the “Share Your Story” on the top banner to relay your experience with being rushed into this surgery and not being given the necessary information about treatment options or the consequences of the surgery. I personally completed the “doctor accountability” form and the “medical errors” form even though my doctor purposely removed my organs unnecessarily (wouldn’t call that an error!).

      Thank you for having the courage to post here. Best of luck to you in moving forward!

  8. Hello Robin,
    Thank you for this post. I could not believe what I read, your story sounds exactly like the life I am dealing with now. I had a total hysterectomy in 2014 because of a fibroid tumor that grew to 24cm and had me bleeding to death, to the point where I had acute anemia and had to get regular transplants.

    Ever since the surgery, I feel almost like a zombie, feelings are gone.The feeling of arousal is gone, my emotions are all over the place , I am always tired and don’t really feel like doing much. Since 2014 I married my husband and he noticed the dramatic change in me and does not seem to understand what I am going through. He makes comments that are insensitive because he doesn’t know how to handle it. We’ve only been married a year and I am thinking divorce might be the option, he certainly doesn’t want to live like this and neither do I. I wish I knew what the better options were.

  9. Robin, I would like to talk to you how my full hysterectomy (due to having cervical & ovarian cancer stage 3) ruined my life & how I dont even want to be around anymore. I don’t feel like a woman at all, my sex drive is completely gone or even if I try to have intercourse it hurts like hell, & don’t feel anything at all. (none of the hormone pills ever helped) my relationship with my husband isn’t that great. I am moody, I can’t sleep most of the time so I am tired all the time. Ive gain so much weight which I can’t seem to loose… I am always crying & my husband tells me he understand, which he doesn’t at all.

    My dr’s tells me its all in my head that everything should be normal. I told him, what is NORMAL which I am no longer the same person before the dam surgery.. I just don’t know what to do anymore

  10. I hope you get 100 million plus for your settlement. What they did to you without your consent is unconscionable. they need to be made and example out of. If they are saying it was an act of God, they must think they are God.

  11. I had a complete Hysterectomy 3 years ago due to a large fibroid. Hot flashes were hell for the first year now they are much better. I am more tired than I was prior to surgery. Other than that I am doing pretty good.

    1. Hi..I had a complete with the exception of the tip of the cervix 4 months ago..with the incision in my belly…my question..my belly is bloated and feels like I have a rope in it and weight gain…I exercise do hot yoga…and I’m still gaining..not happy..feel fine except that…what about you?

      Thanks,
      Kelly

  12. Even the removal of one ovary can change a persons life forever. In 2013 I had an ovary removed due to a cyst encasing it and the possibility of it being cancerous. Since then my left has not been mine. It threw me into early peri meno (I am now 46 ) but the lack of sex drive and hair loss thyroid issues ect from just the loss of one little ovary that drs promised the other would pick up slack for it loss HAS STOLEN MY HAPPINESS! I don’t know how to go on my life isn’t mine I stress constantly and cant seem to control it. I don’t feel sexy have no drs that can even begin to help fix even some of me. I’m lost alone and depressed. yes with only one ovary was removed and this can happen

    1. I was 30 and had a total hysterectomy. I don’t fewl like a woman any longer. No sexual desire
      I don’t even want my husband to touch me. I hate my life since my surgery

  13. I commend your bravery for speaking out. The true ramifications of female castration/sex organ removal is usually a taboo subject. xoxo

  14. Hysterectomy and removal of ovaries are actually two different operations. It is unfortunate that they are rolled into one, as the impact of losing the ovaries, I would imagine is much greater than losing just the uterus and fallopian tubes (devastating for childless women though)but the lay person generally doesn’t understand the difference and the impact of not having any ovaries – and it seems the majority of doctors/surgeons don’t either.

  15. Thanks for this site/post. Fight to keep organs God put in your body! Please! I was 29 years old and had partial hysterectomy and my doctor lied and removed 1 ovary without consent. At 24 years my thyroid was removed said 99.9% sure was cancer, it turned out to be benign. With no thyroid and 1 ovary down, my life has been a nightmare. Brain function, memory, speech, energy and overall health gone over night. I too have lost corporate job and other quality of life benefits. At 33 years I had to have 2nd hysterectomy because dr left part of my uterus which grew fibroid, my ureter, bladder and bowel were stuck together with adhesions and endometriosis. I am now 35 facing a third surgery on Monday to remove my right ovary and “unstick” my organs again. After 8 female related surgeries, I’ve finally wised up and I am NOT allowing removal of my ovary. I told the doctor to scrape off the disease and leave it. I’ve finally learned HORMONES MATTER!

  16. I had a hysterectomy at the age of 29. (I will be 41 this month) I have not been right since. I used bioidentical hormones until this May. I decided to quit taking them. Being on them for almost 12 yrs is long enough. I don’t have mood swings but I am having hot flashes. They are not bad enough for me to go back on them. Since having the surgery, I have problems sleeping, I have fatigue, brain fog, memory problems, problems with concentration, my face is aging faster, I have sunken in eyes and muscle weakness. I used to be pretty strong. Oh, not to mention my sex drive is basically non existent. Is there anything that can treat these symptoms? Preferably something natural. I’m way too young to be feeling this way and having these problems.

  17. Hi, I am having a total hysterectomy on June 5th 2015 I was just reading some women’s experience on it and came across yours. I am so very sorry this happen to you,I am very scared and anxious at the same time.I just hope and pray everything goes as planned.

  18. The same thing happened to me in a British hospital in May this year. I wasn’t given informed consent and they took everything . I have constant flashes and feel horrific ,going from a happy energetic wife and mum to a empty shell. My body feels toxic and feel my life has been ruined. why is this allowed to happen .If I would of been told one thing about surgical menopause I would of ran for the door ! Why is this happening? How many more women will this happen to. I worry about the future and can’t imagine feeling like this everyday for the rest of my life. It’s not fair on my family .All they see is a miserable ,anxious women who just feels so angry .

  19. Hi Carol, I am so sorry for what you’re going through. You are definitely not alone. I’ve heard from many women over the years and listened as they’ve shared with me how much hysterectomy has adversely impacted their lives and my heart just aches for each and every one.

    You mentioned that your doctor (OBGYN) dismisses your issues now and that is common. It’s wrong, but common. Gynecologists are well aware of the many hysterectomy consequences women endure. Back pain is a very common complaint for women post-hysterectomy. Recent X-rays show degeneration of both my spine and tailbone, so I ended up getting spinal injections a few weeks ago. I got to the point where I could barely walk and the pain was just more than I could bear. The injections helped some…

    Like you, my feet bothered me early on too and they still do. What most women don’t know is that their hormones (especially estrogens) help create fat pads on the bottom of their feet. Once we lose our hormones, we lose our padding and we’re quite literally walking on skin and bones. So, this is a big problem since we use our feet to function on a daily basis and for nearly all that we do.

    Sadly, most of the problems you’re dealing with (including hear breakage, dry skin, insomnia, night sweats, anxiety, mood swings, mental fog, weight gain, etc. are all known side effects (consequences) of hysterectomy. Women are routinely not informed about what life will be like post-hysterectomy and that’s wrong. That’s wrong on every level. I doubt many women would sign up for surgery if they truly knew… And let me say that you have every right to be upset that you were not told about the many changes your body would go through. Every. Right.

    Please try not to be mad at yourself though for not getting check-ups or exams when you didn’t have insurance. Anger of any kind takes energy and you need all the energy you can muster just to survive what’s happening to you/your body now. Hormone replacement therapy (HRT) does not replace the hormones our ovaries produced, but it can help restore estrogen, testosterone and progesterone levels to some extent. I’ve been getting hormone implants or pellets for six years now. I don’t feel even remotely Ok or like my former self and suspect I never will.

    However, I’m hoping that HRT will help stave off heart disease, osteoporosis, dementia, etc. Only time will tell… A good diet and exercise routine become even more critical after hysterectomy. Honestly, I feel like I’m in the fight of my life every day and the truth is that I really am. You are too. I’m glad you found my website and the Hormones Matter site. There’s a ton of excellent research on Hormones Matter. There’s also a hysterectomy survey if you’d like to take it. I hope you do!

    Thank you for taking time to read my story and comment. Feel free to comment here and/or write to me through my website. Please hang in there and take good care of yourself. And remember… You are not alone.

    1. Robin,

      Can you please tell me where you get the hormone pellets. That is why I have come back to the US. The gyno I had will not be giving me pellets under the skin. Can you please advise.

      Thank you,
      Jacqueline

  20. Hello Robin so nice to meet you but sad on how we are meeting. Like you I had a full hysterectomy back in 2012. I had gone into the hospital to have my appendix removed only to find out that I had endometriosis and gulf sized cysts on both of my ovaries. I was told that I needed to have a hysterectomy ASAP! Knowing that removing my ovaries would throw me into menopause I tried to hang onto one of them. Sadly two months after my surgery I had to go back in and have the other ovary removed. From that point on I experienced lower back pain to the point that I could not stand or walk. Later I found out that I had a herniated disc in my lower back. After that I started to have problems with my feet and found out I had plantar fasciitis and will need to always have shoes on. I suffered from pain in my neck, arms, back and hip area. Found out that the pain was labeled fibromyalgia. I started with the night sweets shortly after my hysterectomy and have been taking estradiol which helped with the night sweets only. I am moody, I can’t sleep so I am tired all the time. I gain WEIGHT which I can’t seem to loose. My hair started breaking weak and dull. My skin changed to DRY. There are days I just feel like crying for no reason or I panic or worry about things. I don’t have an attention span. I forget things all the time and find it hard to have a conversation with someone without forgetting what something is called. My OBGYN just seems to dismiss me or acts like things will get better but after two years I don’t think so. My family doctor tries to understand and has offered anti depression meds which I don’t want to take. I have talked to other women who have had hysterectomies but they still had their ovaries and were happy to not have periods anymore. Those women didn’t seem to share the problems I have had. I have tried searching for information and others out there who may be going through the same things as me and it’s been hard to find. The only thing I have found other then your blog is an organization called Her’s Foundation. I have had to do my own research and have read up on bioidentical hormones. Unlike you I had to have my surgery, but it could have been prevented had I been having check ups by my OBGYN. My husband had lost his job and along with that went our health insurance. In the five years that we were without health insurance I had only seen my family doctor. I just didn’t want to go to a clinic to have a pap test done. What I am upset about is not being informed on all the changes my body and my life would go through. I do think after talking and reading about hysterectomies that way to many are done in this country and it needs to stop! I feel that doctors push for them to be done because it is a quick fix for many problems. Removing a females organs is wrong and should only be done in a life or death situations. I was unaware I had endometriosis and was told by my OB that I most likely had it since a young girl. I also found that checking for endometriosis is not part of the regular check ups with your OBGYN. I didn’t have pain like most do who have endometriosis and my periods always came every thirty days. It wasn’t until the pain came from my appendix that I was made aware. I am mad at myself for not going to a woman’s clinic in that five years to have a check ups. I believe I could have avoided having a hysterectomy. I’m just upset that I didn’t know all that would change in my life after the surgery. If I had the doctors walked me through what may happen I would have been prepared and wouldn’t feel alone. Thank you for starting this blog I’m sure as more women find you on Facebook or your blog you will hear from many more. It’s a comfort to know I am not alone and there is a place to vent and share things with. Carol

    1. Carol: I just found this site two days ago and can’t get enough. I read your post just now and wanted to reply. I wonder how you are as a year has passed since you posted. When you said” I am mad at myself” it just made me cry as I have said those same exact words. I feel responsible for having done this to myself and thought I was educated and had done my homework. I wish I woud have found sites like this one before hand. My husband tries to assure me that I trusted and believed someone who said they would help, but in my heart I know it is all on me. To know all these woman are out there suffering yet I never came across a one. We all live in our own little **** and will forever suffer because of knife happy doctors. My doctor turned into an arrogant man who humiliated me in front of friends and family on multiple occasions. I am sorry you and all of these women suffer. Just wanted you to know I understand , truly understand.

    2. This week my OBGYN tried to convince me that I needed a total hysterectomy due to the fact that I have a 9 cm by 3 cm uterine fibroid. She says that it is pushing on the bladder and the rectum mainly the rectum causing my cervix to be tilted. I have so many anxious feelings about having a hysterectomy. she suggested that I get a genetic test due to the high cancer in my family And kept pushing about wanting to remove my ovaries.. I just read the report on my patient portal and it stated that I supposedly agreed to having my ovaries removed if the brac test tested positive I DID NO such thing. I made it very clear to her I wanted to keep my ovaries. as I read all of your testimonials it makes me want to research more my other options, that a total hysterectomy may not be the best option for me right now. Thank you for all of your information ladies

  21. Glad you found this site Sandra, but very sorry for the reason you found it. I can only imagine how you must have felt waking up in the maternity ward. Of course you would have wanted your door closed. OMG!

    I was engaged and hoping to try for another baby at the time of my unconsented hysterectomy/ovary removal. I never did marry due to all of the trauma I suffered and continue to suffer. I don’t resemble (in any way) the woman I was before surgery. It breaks my heart to think of you being married such a brief time when you were so permanently ‘altered’. This must have been such a shock to you and your husband. I hope and pray you both survive what’s happened and somehow your marriage survives too.

    The loss of my sexuality was my first most obvious and devastating loss. Seven years later, I can tell you that losing my sexuality was only the beginning of so many other losses. Really, I should stop saying that I ‘lost’ my sexuality. I didn’t ‘lose’ it. It was ‘taken’ (stolen in my case). And there is a distinct difference…

    Gynecologists are well aware of what they’re doing to our sexuality. They just don’t tell us. If we thought of our reproductive organs as our ‘sex’ organs, we would expect profound changes to our sexuality. Men clearly understand that their reproductive organs are also their sex organs. No man would ever willingly give up his sex organs except to save his very life.

    So, I think the first step toward stopping unnecessary hysterectomies and castrations might be in educating young girls to think of their reproductive organs as ‘sex’ organs. Only then, will they understand that there will never be a time in life when they won’t need them. I don’t believe women would so easily give up their SEX organs…

    Thank you for speaking out about your experience. If more women would do that, maybe we could help prevent other women from suffering our same fate. Please share this site with others. Feel free to contact me personally through my website (see link for my site at the end of my post) if you have questions or want to talk or even just vent. And again, thank you for sharing your very sad experience here.

    1. Robin thank you so much for showing me i’m not alone. I had my ovaries removed a year ago when I was 47 due to large cysts on both. I also had stage 4 endo and really got blind sided 3 weeks after surgery when I was told the cyst on my right ovary burst during removal and had cancer cells so a week later I started 6 rounds of chemo that resulted in total hair loss.i can’t take hrt because my cancer is hormone driven. I can’t talk to my family or friends because they think I should be happy its over with. I am so lost I feel like a part of me died and after telling my Doctors I am depressed they have been of little help and I feel like they have closed the door on me to move on to new patients.I feel so guilty for being so unhappy when I know I should be grateful I,m cancer free for now.I slap on a smile for my friends and my family but I traded my quality of life for quantity.At least by sharing your story I don’t feel completely alone a year after my hysterectomy.

      1. HI Dana,
        I had a full hysterectomy, bowel resection , appendectomy and
        Omentum removal in March 2014 five and a half hours surgery in total. I had ovarian cancer stage 3c. I was 58 and it was necessary to save my life. We had not long moved and had been caring at home and in the nursing home for my dying Mum. This was followed by five and a half months on chemo a total of 16 sessions. My Mum died three weeks into my chemo , my sister who lives 15 minutes from me has disowned me as have most of our friends and such horrible things were said to me during all this. Today my husband is having a MRI of his prostate as they have found a nodule and are suspicious it is cancer.

        I have read all the messages and thank Robyn and each and everyone of you for telling your story as it makes us all realize that we are not alone and the way we feel is just so real.

        I feel so empty inside after all this and sex is really difficult because orgasm used to be so great but now when we do I think where did it go. I am very effected by this and feel depressed and cry. I keep on trying for my husband as I love him just so much. We have been together 41 years. IF they find he has prostate cancer and it needs an op or rqdium etc that will just end it all. People say I should be grateful to,be alive and I am but it has come at a huge price. I do not feel feminine anymore sort of like an IT, have some weakness in legs and so tired still from surgery and chemo, miss Mum like crazy,
        Have worsened asthma and fear the recurrence of the cancer. It is like living in a bad dream each day. I still try to do things but life just does not have the same enjoyment anymore.

        I still try to remain positive and play the glad game each day , that is trying to find one thing to be glad about each day and stay away from negative people.

        Anyone who says that hysterectomy is nothing is just lying as they are our sex organs and what makes us feminine not just for babies.

        The problem liez in the fact that is just not talked about enough and we all lack support after all we all have feelings but I think that the medical profession is so wound up in saving lives and whilst I am just so grateful I think they severley lack the a bilility to then help us girls get it all together again. It is very biased and sexist as when men have erection issues oh it is bad and there is lots of help . Our issues are really just taboo as if we do not matter.

        I grieve and mourn the losses I have and life has just changed so much. This is the new normal for me and I just struggle. Blessings to everyone , take care and know that you are not alone

        1. Gai, as I read your story, tears are flowing. I feel your pain and loss. I just had a hysterectomy and I also was NOT informed of all the side effects I am experiencing. I explained to the female surgeon that I am in constant pain and she just prescribe something to the equivalent of a Tylenol!!! I kept explaining at each visit that my spine hurts terribly, my right hip and entire leg swells up and hurts, my pelvic area hurts like if I am having bad cramps, and know my right arm and both hands are going numb. I wake up 7/8 times at night, I feel sad, lost, angry, and cry over anything and everything. My family believes there was no other option, like the doctors explained. I had several fybroids outside and inside my uterus, endometriosis and cysts on each ovary. They all grew since I first became aware of it, five years ago. But not one of the several doctors and hospitals ever informed me of anything else but a total hysterectomy. Oh, the surgeon smiled after the surgery that she had left my cervix and colon that she said had to be castrated also. wow, I was supposed to jump for joy. I was MAD as HELL and insulted every physician that came by to explain lies!!!! It’s been almost three months, I too have been searching for women who have the courage to share their stories and today I found it!!! My heart goes out to YOU and to every woman whose lived this nightmare!!! I have a daughter and want to PROTECT her from ever being a victim to this ugliness. I went to a clinic at the surgeons request, so that they can run test on me to find the cause of my chronic and daily pain that has prevented me from doing the most simple things at home like mopping, moving furniture to clean up, washing clothes at the laundromat, taking a walk with my daughter( one mile), and my sexual desire is non existent!!!! I cannot talk to anyone but my niece who also went through this nightmare and a sister who loves me dearly. I am worried for my heart, and my bones hurt so much. Everyday, I wake up, attempt to stretch in a standing position, then bending, and it feels like if I am an 80 year old woman. I love dancing, walking, socializing and want to find employment, but I CANNOT due to constant pain and my back hurting so much. God, what do we ALL do to find a way to improve our lives and prevent other women and future generations from this atrocity? I cannot stop from weeping, I feel the collective PAIN. But, I am SO HAPPY TO HAVE FOUND THIS PAGE AND SO MANY WONDERFUL AND COURAGEOUS WOMEN WHO DECIDED TO SPEAK OUT!!!! GOD BLESS US ALL, LET’S CREATE AN ARMY OF WARRIORS AGAINST FEMALE BRUTALITY…..

  22. I, too, found this site in the wee hours, unable to sleep. I’m now 5.5 mths post-surgery, and would give absolutely anything to go back and make a different choice. I’m 35, and finally got married 1.5 yrs ago. While trying to get pregnant and experiencing infertility, I discovered that I had 2 large ovarian cysts growing, along with complicated Stage 4 endo. I had one emergency lap surgery that only drained them last Feb, then another lap surgery in June that removed them since they’d grown back. I lost my job b/c of the endo and its complications, and the fertility dr I saw said I should try Lupron for a few mths to cure the endo. The injections would’ve cost quite a bit, particularly since I still wasn’t employed, but the temp menopause and other side effects scared the hell out of me. If I’d only known! Cut to Nov, and I’m going in for the total abdominal hyst and ovarian removal, because I just couldn’t take the pain anymore, and was tired of being on a ridiculous high dosage of morphine. The surgery went well, so I was told, and even better was waking up in the maternity ward. Yep, there I was dealing with losing everything that made me a woman and knowing I would never be able to have a child, and I get to listen to all the newborns and see new families walking around. I had one awesome nurse the first night, but the rest couldn’t seem to understand why I’d want the door closed so I wouldn’t have to listen to the happy people. Nearly half a year later, and I’m struggling with severe depression, still unemployed, getting close to sling my house and my marriage, and still in pain and now terrified of how my body may be changing. My dr doesn’t understand, and I don’t have anyone to talk to. I can barely sleep and when I do I have nightmares, and I’m not even sure why I’m still here, as I feel like I have nothing to give to anyone. I wish to god I’d never had this surgery, and I can only hope that other women will find your site in time so they can research their options and make an informed choice.

  23. Mindy, I woke up around 4 am (couldn’t sleep as usual since hysterectomy) and I happened to see your comment. Sadly, what you say about your sexuality post-hysterectomy is all too common. I knew from the moment I woke up in recovery that my sexuality was gone. There is really no way to talk about such a profound change…

    I think most women (me included) just don’t realize how much our sexuality is tied to our female organs. We are taught from a young age to think of our female organs as ‘reproductive’ organs and not necessarily ‘sex’ organs. So, we have the idea that we don’t really need those organs if we’re not reproducing. Nothing could be further from the truth. But, we don’t know this until it is too late – until we’ve lost our female organs.

    Hysterectomy is very often only the beginning of many losses. I hear from women almost daily through my website and most of them talk about loss of sexuality and problems in their marriage/sexual relationships. Many say they are no longer able to work the way they were before hysterectomy if at all and so they end up losing their home, etc. Health problems begin to stack up as the years go by too. There really is no end to the trauma…

    You mentioned issues with your spine and this is common as well. I’m dealing with nerve damage which is causing an enormous amount of pain in my lower back, pelvic area, left leg and foot. Walking and even doing daily tasks is now a challenge for me. Hysterectomy is linked to nerve damage and changes in the anatomy, but doctors don’t tell women about this. Doctors don’t tell women about a lot of things…

    Thank you for sharing your experience. I agree with you when you say life post-hysterectomy is frightening and devastating. And like you, it all seems unreal to me too – even nearly eight years later.

  24. I found this blog late this evening while sitting here in a funk. I was married and waited too long to have children for a number of complicated reasons. Then at 37 my uterus began to grow fibroids that kept getting bigger and bigger, despite trying lupron depot therapy shots. I looked like a 14 week pregnancy and the fibroids were pressing on my organs so I was runing to the bathroom every 5 minutes at times and I was in pain and bleeding heavily most of the month. I finally gave in after consulting with a surgeon and decided (after 3 years of this) it was time to have the surgery. I had waited to long even the doctor was shocked at how big the fibroids reallyi were. Myomectomy was not an option at that point because most of the uterus was involved, so I had the surgery. My husband had announced to me before I had the surgery that he wanted out. He waited until I had it and was recovering and back on my feet when he filed for divorce. He turned on me and accused me of cheating on him and funneling money to my parents==all of which was totallyi and completely untrue. Even if I had had the energy or inclination, I did not cheat on him, it was all so absurd. He and his whole family abandoned me and I lost my house and a lot of other things. I ended up having a 3 level neck fusion a few years later as my spine had begun to deteriorate. I have been fighting weight ever since. I am in my late 50’s now and so alone. I am afraid to try a relationship because my sex drive is so diminished and I think the lack of hormones and the feminine chemistry being absent is a turnoff to a man. So very hard this is, so frightening and devastating. I am like in a daze most of the time, it is all so unreal.

  25. Patricia, Thank you for sharing your experience post-hysterectomy. Your comment is absolutely heartbreaking… Obviously, I understand and feel your pain deeply. I’m happy you found the Hormones Matter website and articles and hope you’ll complete the hysterectomy survey.

    Women must speak out about this issue. I’m convinced that we will only see the hysterectomy rate reduced when women reach out to other women and share what post-hysterectomy life is really like. Everything changes. Hormones truly do matter and they can’t be replaced. Not really. Pelvic support and strength is lost forever too.

    Hysterectomy is a game-changer (and by that I mean life-changer) for sure and one that’s too often unnecessary. It’s truly an experience only another woman who has lost her female organs (especially when unnecessary and/or without consent) can grasp. As WS said in her comment, my life as I knew it ended the day I underwent hysterectomy.

  26. Hello, I have been looking for a site such as this where women have a voice and are suffering due to hysterectomy. I am 42 years old, I had a total hysterectomy at age 29. 6 years ago I had a thyroidectomy. I have not been the same since. I NEVER feel good, I cannot keep a job due to stomach issues, migraines, etc… sometimes I really just would rather be dead. Doctors do not take me seriously, my husband thinks I do not want him anymore because of lack of sexual desire. I have never found anyone else who can even begin to understand my daily struggle. I was not informed what a living hell I would endure for the remainder of my life without my reproductive organs.I have tried EVERYTHING. Since my thyroid was removed, I feel like my life will never be the same.

    1. Patricia,
      I am so sorry for the suffering. It’s an all-too-common experience that you speak of. Unfortunately, it doesn’t appear common b/c many women don’t speak up or speak out and there is very little research on the topic. I encourage you to take a our hysterectomy survey http://www.hormonesmatter.com/hysterectomy-survey/, so that your experiences can be counted. If you are interested in sharing your story, we accept personal health stories as a way to promote awareness. Follow the ‘write for us’ link on the right side column of the blog for details.

  27. Ari, Thank you for reading my story. I did file a law suit in 2008. I could write a book about what I’ve been through trying to pursue legal remedy for what happened to me. My case is still on-going, so I can’t say too much about it at this time. However, the fact that I did not sign the consent made filing a lawsuit at least ‘possible’. When there is no consent for surgery, it’s considered ‘assault and battery’.

    My former doctor admitted that he purposely had me sedated before he arrived for surgery so he could purposely obtain consent from my mother. Of course, my mother had no legal right to sign my consent or even see it for that matter – not according to HIPAA privacy laws. The O.R. nurse who obtained my mother’s signature after I was knocked out with Versed admitted she knew that it was an illegal consent since my mother did not have power of attorney and there was no emergent situation.

    Despite this testimony, both the doctor, his group and the hospital have been fighting me tooth and nail. They’ve stated that it’s my own fault I’m harmed (if I’m harmed). And, they’ve stated that if it’s not my fault, it is an act of God for which they cannot be held accountable.

    1. Why was your former doctor so intent on giving you a hysto though? I mean to the extent of getting sedation for you, and getting your mother to illegally sign consent?

  28. Do you have any legal recourse in this situation, considering that you did not sign the consent forms? When confronted with the situation, how did your doctor and nursing staff respond?

  29. Thank you for reading my story and for sharing your own experience with hysterectomy here. I too am dealing with changes to my anatomy that are shocking. This is something I never expected and it’s something most doctors don’t talk about.

    When a friend of mine took her life after an unnecessary hysterectomy ruined her health, marriage and career, I decided to speak out and speak out loudly about unnecessary hysterectomy.

    The damage done to women physically, mentally and sexually via hysterectomy can be tremendous. At the very least, women deserve to know about the possible risks to their health before agreeing to removal of their hormone-producing female organs.

    Hormones Matter is dedicated to informing women of all issues that impact their health – including hysterectomy. Please consider taking their hysterectomy survey here http://www.hormonesmatter.com/hysterectomy-survey/

  30. Robin,
    I’m sorry that you too were a victim of the overuse and abuse of hysterectomy, a surgery that causes lifelong damage. My downfall was trusting my gynecologist of 20 years, not realizing that he lied and unnecessarily instilled fear to get me into the operating room. All he should have done was remove a complex ovarian cyst that was shown to be benign on frozen section. Instead he and two gynecology residents proceeded to remove my healthy female organs (ovaries, tubes, uterus, cervix). My life as I knew it ended that day.

    The hormonal fall-out has been devastating enough. But the changes to my anatomy and skeletal structure have also wreaked havoc. My bowels and bladder don’t work properly. My spine has compressed and my rib cage is now sitting on my hip bones. The effects on my once beautiful, intact figure are distressing enough but the back, hip, and rib cage pain are even more devastating especially knowing that they’ll likely worsen over time.

    The adverse consequences of hysterectomy and/or ovary removal are well documented in medical literature. And ACOG has said that 76% of hysterectomies don’t meet their criteria yet they aren’t doing anything about it. And with the need to recoup the cost of the robots, the financial incentives to do hysterectomies continue.

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