Hysterectomy or Not – Angela’s Endometriosis Update

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Well the time has come and I will be undergoing my second surgery for Endometriosis and PID damage February 28th – a hysterectomy.

My health has been alright, all things considering. My husband and I haven’t been intimate for a while as it’s extremely painful to have sex and the medication I am currently on (Cymbalta) has lowered my sex drive almost to nothing. If we do have sex it takes extremely long to orgasm and sometimes I just can’t at all. That is very frustrating.

I haven’t had too much pain lately in my pelvic area and that is making me nervous.  It makes me think that I should hold off on the surgery. However my bladder and bowels are bad and I need that looked at for sure. I feel a lot of scar tissue up near my liver and diaphragm where the endometriosis was before, so I am pretty sure the scar tissue is just all over the place.

The surgeon is making me extremely nervous. Her last words to me were “I am going to take your tubes and your left ovary, if there are complications I will open you up and take it all out.”  When she said that, I just sat there. I couldn’t get any words out. I have asked for a hysterectomy so many times before, but have been refused. Now I am not prepared if she does one. I am more confused than ever.

I have researched hysterectomies and endometriosis for five years. I told myself that when I turned 35, if my endometriosis and all of the other issues were still here, I would have a hysterectomy. Well, I am 36 in June and no matter how much I have researched having a hysterectomy, I am still on the fence. Should I have a hysterectomy or not? There are so many complications and I wonder if a majority of my endometriosis is on my bladder and bowels what good would the hysterectomy do?

I had high grade cells removed from my cervix last year. Were these endometriosis lesions? Has anyone ever heard of this?  All in all, I want my uterus and cervix out. I am not planning on having another baby and at this point it is safe to say I am infertile due to the shape of my uterus and the damage done to my tubes from PID.

I get depressed thinking about how long it will be for me to go into menopause naturally and what if that doesn’t even help then? Yes, at 36 I want to go into menopause. I want the pain to stop.

This disease is terrible. I wonder what would have happened if they caught it when I first started to have symptoms. Would I have this many complications? Would I have the excessive damage of the deep infiltrating endometriosis that they removed with my last surgery? Would I have the nerve damage that I have now? Would my bowels and bladder be in better condition? There are so many questions, but I will never have the answers to them.

I think that if my bowel and bladder symptoms were not as bad, I wouldn’t be in so much pain. I wonder if the excision surgery removed all the endo and if the pain I have is from endometriosis or something else. I will soon find out. I think there is huge damage from the PID along with massive scar tissue that has obstructed or intertwined with my bowels, ureter and bladder. As for now, I can only sit and wait to see what happens. I go for my pre-op on February 20th so I can ask more questions then.

What do you guys think? What would you do if you were in my shoes? Hysterectomy or not?

 

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64 Comments

  1. I was diagnosed with endo when I was 22. Initially I was put on Lupron but by the time I went in for the third dose my doctor told me I couldn’t be on it anymore. When I would get the shot, by the time I was driving home, my body would start to ache and by nightfall I would be huddled on the bathroom floor for the night in what I can only describe as being similar to a horrible case of the flu. After the initial 24 hours, I was functional but had no desire to eat, and what I forced myself to eat would come back up. The first month I lost over 20 pounds and I was not overweight. After that I was just put on birth control after another fail of them trying the depo shot every 30 days instead of the typical 90. I went years of being in pain before my regular OB sent me to a specialist 2 years ago (I was 29) who did an ultrasound and saw all kinds of damage and immediately set me up to reconstruct everything in my lower abdominal area and remove as much of the endo as he could. He did a good job but it’s been 2 years now and the pain is returning. He thinks I have a 50% chance of having kids only if I do IVF and do it within 6 months of a clean up surgery. I don’t have the money for that and getting a loan for that to only have a 50% chance is not promising for me. I have no problem adopting one day anyways.i want to be done with it all but a hysterectomy terrifies me..the hormonal change is my biggest concern..when I had stopped taking birth control 3 months prior to the last surgery,my scalp was constantly oily and broken out with acne (I would just cry when I brushed my hair because it hurt), my skin was oily everywhere else, I felt disgusting 10 minutes after getting out of the shower, I got horribly depressed and just felt terrible. My mom is trying to talk me into doing it this summer and while I’m so ready for it to be gone, I’m on the verge of tears talking about it..I just don’t know what to do.

    1. I want to tell you a couple of things.

      1) and hysterectomy will not cure Endo
      2) I am two years post up radical hyster and I can tell you first hand this has been the most craziest ride I have been on in my life and I don’t say that as something that is fun because it has been like living in the fiery pits of hell. It’s not okay to have everything taken out at a young age I’m 38 and that is still too young.
      3) I don’t care who is telling you to have on. It is YOUR BODY you make those choices no one else.
      4) please do your research and don’t go Down this road.

      1. Hi Angie,

        Don’t do it, please don’t have a hysterectomy. Or get your ovaries out. You will suffer far more in the long run. And die sooner from an estrogen deficiency. Angelia is right, it is a life of hell and suffering FOREVER. The suffering is far worse, than the pain of endometriosis. Woman who tell you they are ok, are lying big time. You are far better off doing an alternative medicine such as balancing your hormones. Pain killers, anything but this surgery. To have this surgery is life threatening. It is not the answer. The answer is to live with the endo, and use the hormone therapy to help it. I REGRET the day I had mine done. You will suffer MORE than you can imagine. And to know that you have a LIFETIME of being on HRT FORVER. With no choice – EVER. LOVE your body, accept the endo. Work with your body. Believe me an estrogen deficiency is FAR greater health risk than keeping your organs. Let me change your perspective; imagine your husband going in to get his testicles removed and his penis tip cut shorter…THAT is a hysterectomy to a man. Just because our organs developed in the womb into a woman and our organs become internalized does NOT make us any different. The eternal suffering is awful. You can never go back, and it is FOREVER until you die. I would take the pain of endo ANY DAY compared to this useless surgery. If it is not life threatening; DO NOT DO IT.

        1. I had a radical hysterectomy which excision. My pelvic lining was removed as well as both of my ovaries. He removed a large portion of my vagina in order to get all of the rectovaginal Endo that was not removed the first time. I am 2 yrs post hyster with no HRT and yes it was brutal but I am currently on no medication other than sleep meds and I have my life back. I don’t regret it because for the first time in my life I feel normal mentally and physically minus the fibromyalgia but I have had that since I was 17. It’s not for everyone and I would never promote hysterectomies for Endo but for me I am happy with the choice I made and I feel so much better 🙂

          1. Hi Angela! My name is Angela also. I had a hysterectomy on July 28 2016 . Dr. Took everything except one ovary. I stressed to him I had to keep one ovary. So when he went in to do surgery the right ovary was bad with endo. Left ovary Good thank God! I’m very emotional. Today I started to feel back pain? I’m not sure what is causing it. I’ve been reading up on prolapse. And back pain after a hysterectomy. I’m very unsettled right now. Worried that I just substituted one problem for another. I only lived with endo for 3 yrs. I ate healthy which kept the pain away and once I ate something with wheat or dairy it came back. I was pain free for several months. I wish now that I would of just dealt with the endo pain and not of had the surgery. The pain was horrific though!! I made me very sick! All my pain was on my right side. Thigh , pelvic and abdominal area. I would not say to anyone to not to have the surgery, but to just do a lot of research before considering it. Drs. Don’t and want tell you everything. I’m glad you feel better and you have your life back!!! Like you said a hysterectomy isn’t for everyone.

            1. It’s one of those things where no one can say it’s the right or wrong thing to do. Everyone has their reasons why and I agree nothing but your own research and really taking the time to think if this option would help you or make you worse. For me I researched for 5 yrs and i told myself at 30 that if I am still struggling at 35 I am going to do this. Even with all that time to research and feeling confident in the choice I making for me I was still panicking on the operating table thinking what the hell am I doing.

              I had multiple issues beyond Endo as well so for the choice and side effects were something that I was willing to risk. The first two years were not good and no there is not a lot of information out there about surgical menopause just menopause itself and its completely different.

              I do get lower back pain but I have always had it. Just made it worse I suppose due to lack of estrogen as I have no ovaries and I’m not on HRT.

              Prolapse is possible but it takes like a good year to full recovery internally so I would still give it time because you only had it recently.

              Feel free to add me to Twitter if you are on there. Sometimes being able to talk to someone during this time helps 🙂 my handle is @endendoforever 🙂

          2. Did you gain weight after your hysterectomy? It’s been suggested to me by my doctor, but I have a fear of gaining after the procedure. I know everyone is different, but I am just curious what others experiences have been.

            1. I would say yes but not a lot. I would say that that I was around 150 before surgery and now I am 157lbs and I have stayed consistently at that weight. I have not tried to lose weight either nor have I done anything different in what I do and I drink wine which I am sure led more to the weight gain than the hyster itself. \

  2. I had a hysterectomy at age 27 which was 35 years ago. I had PID and endo. I’ve been on HRT for all that time. My daughter who is 38 was diagnosed, after extreme pain, to have ‘deep endometriosis’ – I pray she chooses the hysterectomy and gets on with her life.

    That surgery saved me much pain – and with low dose HRT and testosterone – I barely know I had it.

    1. Hi, did you have a complete hysterectomy ? And if so, did you have any complications afterwards? Back pain, prolaspe?

      1. Yes I have a complete hyster with everything taken out. No prolapse over here but I’m only 2 yrs post op do anything can happen like that as it weakens your pelvic floor.

  3. Much like you I am years and years of no answers. Yesterday a doctor mentioned ademiosis (sp) he said problem is not endometriosis it goes beyond that into uterine wall. You cannot stop the constant pain without taking the lining of uterus out. Best info. I’ve heard. I’ve been told hysterectomy for years but this is first time I’ve been given a good reason. He also said keep your ovaries unless you have medical reason to take out because they produce hormones for you. Such a great visit for fist time in 8 years for me. The only honest doctor I think I have ever seen. I have walked in your shoes with frustration for 8 years!

    1. Sha I am very happy that someone has given you some sort of solution. Please do keep your ovaries as surgical menopause is not fun at all.

      1. If you leave the ovaries in, you have the chance of endo coming back..Endo is being fed by estrogen, which are produced by Ovaries. I had radical hysterectomy done after 2 prior surgeries to remove ovarien cysts and uterus cysts causes by endo. Yes, surgical menopause sucks. I rather would have gone into normal menopause as age 50. I was 43 when I had radical hysterectomy and both overies removed. But, the pain stopped. Endo is a progressive disease. It doesn’t get better, it just gets worse! Something my first Geno Dr didn’t tell me! I wish he would have and I would have done the surgery a lot sooner…

    2. I also have adenomyosis and endometriosis. I had an ablation to remove the lining of my uterus two years ago. It stopped my heavy periods, but did nothing for the pain.

  4. Seeing all these posts from last year and getting all of this valuable information is such a gift. I will be so much more inquisitive with my doctors now. I was diagnosed 3 weeks ago with Endo. I am getting an abdominal endoscopy 9/15/14 to explore the pain that cripples me. It came on like a tidal wave…I called 911 ran outside and had a cop yelling at me to stop moving around. I could not stop;I was running in circles until I took extra pain meds I already take for 9 fused discs in my back. I am “used” to pain and almost feel that I was built to deal with it UNTIL THAT MORNING MY PERIOD STARTED. I am 44! I have 4 boys and a grandson…I believe a C-section may have gradually spread the cells. I did have a cyst the size of a grapefruit on my left ovary that finally burst…so who knows. I have a severely prolapsed uterus from giving birth 4 times. I was blessed and I know many women here could not have a child. I am left without words when I read they could not…just tears. I am just so new to all of this and so grateful to all of you for letting me know YOU KNOW THIS PAIN! Thank you all so much for taking the time to reach back to other women who need each other. I see now this will be a journey and will not go away overnight. I will most certainly continue to share my “events” and try to learn so I can be of help in the future too. Hugs <3

  5. I had a hysterectomy (ovaries left) in 2005. Best decision of my life. I was well again for the first time in 13yrs. My kids had their mother back, my husband had his wife again. The firsts few months of no pain was extremely strange to comprehend that this was my new life, this is how I should have been living. Unfortunately 5 yrs post hysterectomy I started cramping again and feeling unwell thankfully I saw a naturopath who suggested chaste tree extract and Krill Oil supplements. Now (7yrs post) the cramping is mild and manageable. Roll on menopause I say. At 37 I’m happy for the next chapter to start as soon as possible.

  6. Angela,
    I just wanted to mention that once I got my thyroid levels (Free T3 and Free T4 to OPTIMAL and for me that meant the top of the range), had NO more trouble with candida infections. And mine were in my digestive system as well as some vaginal ones. I feel pretty sure that there is a connection between low thyroid levels and recurring yeast infections!

  7. Hi.

    Thank you for writing this.

    I am a 34 year old female that was diagnosed with endometriosis 22 months ago but have been dealing with it for twenty years. It has been a very long road and battle. After five surgeries, losing my job, not being able to work because of the pain, from passing out and episodes of severe tremors at times ( I believe due to the Lupron) I have decided to claim my life back.

    My will and my determination is stronger than any pain I feel.

    I decided not to get the hysterectomy and it has made people angry with me but it is my body. People have told me I do not want to get better or feel better, that I must enjoy being sick.

    I do not enjoy this one bit.

    I will not ever have a child, I do not have any children now, my ovaries are too damaged for me to do so. I have finally come to peace with that. Took me awhile but I have.

    Having a hysterectomy is a very personal and private choice.

    Thank you.

    I have never been able to explain to anyone why getting one does not feel right. That the feeling of “What if it is for nothing?” is stronger than the research of it working.

    Reality is not so much fear of it not working but my gut telling me that it is not the right choice. Always go with your gut feeling.

    So, thank you.

    Thank you for “getting it” and thank you for writing about it and letting me feel not so alone in my decision.

    This too shall pass, sister, this too shall pass.

    1. Being a sufferer myself since 16; with andeomysisois. Please do not get this surgery my dear. The suffering you will experience post hysterectomy/ovary removal is far worse. DON’T Trust your gut, trust the facts. We only learn from experience; which is a shame. It’s only when it happens to us do we go; oh why did I do that. I know endo is painful; but the surgery is FAR worse. You think you can’t function now; try not having any organs. Hormones DO matter, get those in order first. Love your womanhood; no matter how painful.

  8. My hysterectomy is this Monday (sept 16). Mine is medically necessary. My uterus is folded over (prolapsed) and has caused severe retention. It is even difficult to get a catheter up to pee. I am 45, already in pre-menopause, with severe end stage IC. I’m not doing the surgery to cure my IC. My ovaries, tubes and cervix are all being removed due to endometriosis. When my surgery is done, I will be going on hormones. If your having a hard time achieving orgasm, have your testosterone level checked. All the porn and vibrators in the world won’t save you if your testosterone level is low. They can give you a cream for that.

    1. GOOD LUCK; I truly wish you the best. It’s an awful fate Sariah. Why are you taking out your ovaries too? Please don’t. I don’t think it is the answer for endo. It is proven that it does NOT cure endo. You will suffer more greatly on a lifetime of HRT. There is no gurantee on HRT either. Having no cervix and ovaries is far more worse than living with endo. Can they just remove the endo only? Please preserve your organs. Please, do you have cancer? Otherwise don’t do it. Being in surgical menopause IS NOT menopause. It is the removal of our gonads; permantly. What if you were not able to get HRT? I have often thought of that myself, I know how awful it is to suffer without HRT.

      1. You are thinking of things in a way that is too black and white. Statistically, approx. 80-85% of women do get relief from their symptoms from removal of the ovaries. This is an estrogen dependent disease, and without ovaries, the majority of estrogen is removed. Estrogen is also made in body fat, so some women will see their endo return b/c of that. However, given that the majority are free of pain, and my obgyn said that the hot flashes should subside within a year, it may be a valid choice for some. What is known is that endometriosis is likely to return within 5 years of laparoscopy if the ovaries are not removed. The estrogen will stimulate the return of the disease. Often even with hormonal treatment. With these odds it is no wonder that many would choose to take the chance at relief. You should understand that this course of action is usually chosen after all other options have been tried. I myself have tried at least 5 kinds of birth control, laparoscopy, progesterone IUD, Lupron injections, megace, medroxyprogesterone, spironolactone. I have visited expert doctors in multiple states. I get very sick on the birth control I think b/c I am sensitive to the estradiol. IUD was ridiculously painful. I am also diabetic and megace made my sugars extremely high. Lupron does too. I have to take more progesterone which means higher sugars. Sometimes people have to choose the best of the bad choices. Everyone is different. You can only speak with authority about your own experiences. The problem I have, is that though you want to help, it seems like you think it is the same for everyone. Everyone’s situation is personal and people have to choose what is right for themselves and they can live with.

        1. I’m not sure if this is directed at me but I have never told anyone to do anything and have only shared my own story. Is this directed at someone else if not I’m confused

  9. Thank you.

    I have since been in touch with Dr. Sinervo. He has agreed to take on my case and fight OHIP for me to have surgery in the US. So I am crossing my fingers.

    He feels a hysterectomy is my best option and has agreed to do it considering the last two surgeons left endo behind on the bladder and bowels after telling me they got it all. Lies lies and more lies. He feels its possible I have adeno as well which would correlate with some of my off symptoms

    He also said he could tell I had IC as well and will do a hydro distension to calm the bladder down.

    He was amazing and reassuring to talk to. I know a hyster wont cure me and I get that and I am the first to say this to other people with Endo, however each case is different and I had undiagnosed endo for 14 yrs the damage is done and I have a lot of issues with my cervix with on going high grade cells. I want it all gone.

    My only worry is my hormones. At this point I am on the BCP and it has helped level them out because for some reason my hormones just go mad on me without out. I mean its scary and so are the side effects of NOT being on it.

    If anything I am prepared for the hyster just not the hormone aftermath, because of my past it scares me to death.

    1. I have the same problem you have Angela high degree cells are cause by hpv human papilloma virus.I got a surgery for that and I am ok.but my endo is 4 stage and I lost two organs already now I have a cyst in the area of the surgery that remove my right ovary so dr can take it out or do a total hysto I am scared don’t know what to do.

    2. Hi Angela,
      Wow I feel your pain, I know what you are going through. Angie, I ask you to reconsider any other therapy than taking out your uterus and ovaries. The reason we have this disease is because we have a hormone imbalance. You will feel better in menopause; is there anything else that can you can do. How does he know you have IC? All gynos are amazing and reassuring. That is their job. FROM experience hysterectomy is FOREVER and NOT the answer for endo or ando. And having the hysterectomy does not cure your endo at all. What about just having the lining taken out?

  10. Just my 2 cents again…..my hsyerectomy was a breeze. Surgical menopause was surprisingly tolerable with 1 mg Estradiol. Unfortunately the Endo comes back if u take hormones, but after a final scrape (I had about 5 pain free years) I should be about out of Menopause and can start to come off the Estrodial, ending this wretched business once and for all. But you’ve GOT to LOVE YOUR DOCTOR! My heart sank reading how nervous you were. I will keep reading and hoping you’ve found releif.

    1. See; endo comes back; it is a hormone imbalance right from the start. Sorry for a younger woman surgical menopause is not tolerable. Younger woman suffer greatly especially under 40’s. And actually need higher doses of estrogen to keep functioning. Then those already in menopause; might do better. We are so uneducated about all of this. As the developer of this website says; surgical menopause IS not the same as natural menopause. Right now all that is speaking to you is the pain of the endo; not the common sense of having your organs removed – permantly. Find any other way than taking out your organs. You will be on HRT for life; and there is no gurantee it will be effective for you.

  11. This is why I was never comfortable with the choice. 50/50 and I just had a feeling that I would not be the same even after menopause. I know it won’t stop the growths, I know I would probably always be in pain but I know why people want it ripped right out.

  12. This will be a pretty short comment. A hysterectomy won’t cure you. Menopause will not cure you. I’m 23 years old and I have already experienced both. I still have horrible pain, I still have trouble with my bowels, I still have horrible bladder pain. 8 surgeries and countless drugs and “cures” later and my life is just as miserable as before. I really hope you have a doctor who knows what they are doing and I wish you the best. But I wish someone had told me at 21 that a hysterectomy wouldn’t fix me.

    1. OMG Cyndi this is a crime; my god 23. 23 years old. I know your suffering all too well.
      23…how do you cope? I can’t at 38. Do you work? Angie Cyndi is 100% right. Cyndi you probaly have more problems now; post surgery with all your organs; not due to any endo; but because having no uterus actually takes away the structure of holding all our bits together. Serious do you work?

  13. The day is almost here for you. I had a hysterectomy in 1983, and afterwards I felt the best I have felt in my life. They took everything, and I demanded estrogen afterwards and was on it for 20 years. I rejected the combination drug prempro, since it has been implicated in heart disease. But estrogen on it’s own is wonderful – I never wanted progesterone since the progesterone part of my cycle gave me migraines, rampant emotions, and uncontrolled asthma. After the surgery, and with estrogen, i never had another migraine, asthma went into remission, and I felt great. My doctor urged me to go off the estrogen as I reached 60, but I’m sorry I agreed to that. Still feel great. Practice kegel exercises to avoid urinary drippage and take with a gynocological urologist to get PT for exercises to strengthen the pelvic floor. I am 71 and have as much energy as ever. Good luck to you, but talk with your doctor prior to the surgery. It’s better to be prepared, and I would feel awful going into the surgical theater with “ifs” and ” on the one hand this and the other hand that”. You deserve to be served emotionally and physically with the best your surgeon has to offer, and if you suspect bias one way or the other, put your clothes on and get the heck out of there. It’s YOUR dime and your body. Get a second opinion. It is NOT too late.

  14. Thank you all for your responses I really didn’t expect to get this many and it is an important thing to talk about and learn more about. I have done tons of research and it still leaves me with the 50/50 mind frame.

    I have so many issues going on and I have no answers that I get really frustrated all the time.

    I think I will wait to get the hyster for now until after my surgery to find out if it alleviates the issues I am having but I surely doubt it.

    My rectum, vagina, bowels, bladder, diaphram, uterus and ureters are all effected. I am tired, so tired of having to go back and forth to so many doctors to make sure its not this or that when I know damn well what it is. It is mentally draining and I just want it all gone.

    I had excision surgery in 2007 that was amazing. My surgeon is one of the best just like Dr. Redwine his name is Dr. Leyland and he is in Hamilton Ontario now. He does refuse to operate on me because of how deeply implanted the Endo was and the nerve damage it caused. This time I am not sure I am still waiting on a call from my surgeon as I need to ask her these questions again as I was left hanging the last appointment and uneasy. She also thinks it could be PFD and IC that are causing my issues but my cysto came up negative but I have all the symptoms for it.

    The problem I had on my last surgery is I had prior bowel surgery/resection and an appendectomy at the same time and for some reason that same side keeps fusing together as well as the the left ovary and uterus. I also had high grade lesions on my cervix and I guess for me I am just done with everything in general. I also think I have Adeno as well and I was told the only way to completely confirm that is through hyster and testing of the uterus after it was taken out.

    Will the hyster cure me? I really doubt it, in my case.

    I don’t have sex anyways because it hurts way too much. I would rather have a lack of sex drive than the pain of having sex.

    My body just seems to reject itself for some reason. It doesnt matter what it is there is always something like, yeast infections, vaginal and perineum cuts, nasal cysts and cuts (which could be from the pill and other meds they have me on) Bleeding after sex, painful sex, painful bowel movements, painful urination. This just has to do with the endo and adhesion too not the various other co-morbid diseases going on as well.

    How does one cope? How does one make this decision?

    I feel that when someone comes to the end of their rope and they are depressed it can surely lead to suicidal thoughts like it has for me and I would rather try the hyster than to live another day like this even if it didnt work because at least I ruled that out.

    I am aware of all of the side effects and it scares me a lot but I also cant continue another 25yrs like this, I just cant.

    I am not having anymore children, I have tried everything except the PFD therapy in which I will look into and I will have this surgery in two weeks to remove the tubes and left ovary. Depending on the outcome is where I will go with the Hyster.

    I thank you all for your kind suggestions, thoughts and information. I am apart of many sites and have been for the last 10 yrs such as hystersisters, Medhelp, various Facebook ones and Twitter. I research I swear 24/7 until I go batty trying to make this decision. I am just not at peace with it just yet and I need to feel that to make this big decision.

    1. OMG, i feel so bad for all your problems. I have I.C. also endometriosis and so tired of going from doctor to doctor also for 25 yrs. Holy shit don’t know how i survived all this pain alone. Just got done with a 5th surgery after my entire intestines, rectum, bladder all were inflammed. Doc scarred me and said it cld b endo, cancer, or i might need a bowel resection. This sent me to the cancer center and begged them to remove my only ovary left from a hysterectomy I begged for 23 yrs ago. Well, they found nothing and there went my good ovary. Oh well too much pain to cry anymore. I get home from surgery and get this horrible pain in my rectum 4 days later, feels like a golf ball, then I develop a herpes outbreak around the inner buttocks. I can hardly sit or walk and i’m trying to recuperate from surgery. Ive had herpes since i was 17. I ran to the infectious disease specialist and he said all the inflammation i experienced could have been caused by the herpes. Also, i have been diagnosed with P.F.D. you can believe this causes lots of nerve pain, so does the herpes. with resides in the sacral nerves.I wish i would have just waited instead of jumping into surgery thinking it was endo again. If you know it is you gotta do what you gotta do. I also have I.C. and at times have a really hard time emptying my bowels as well as my bladder. That is why i think it is really important to find a physical therapist that treats this disorder. I haven’t yet but am getting ready to do it. I am also taking 50 mg of natural progesterone to keep my hormones active. I would like to take some estriol which i was doing prior to my surgery and that it why the doctor thought it was a recurrence of endo, because i was taking estriol but it wasn’t. I think between the herpes and the P.F.D. my inflammation was provoked. Sometimes its so hard to know what causes what. I will exhaust all options. Good thing is i really have no pain, just constipation and the need to urinate alot. Still working on a cause for chronic constipation. Those of us with I.C. are restricted to acid but yet our stomachs need acid to break down protein. Hydrochloric acid is a supplement I will be taking to see if it relieves this problem which is chronic. It takes a long time and a lot of money to figure all this out sometimes. I feel for all of you as I have felt suicidal at times with all the pain i’ve been through. God bless all of you.

    2. Angela,
      The hysterectomy will not cure you. Nither will getting your ovaries (please be clear of their function – your female gonads) removed. You will have no sex life AFTER the surgery. At least you have one now. I would suggest other alternatives; keep going in to get the surgeries done does not help either with endo either. JUST don’t do it. Remember a lifetime of HRT WITHOUT your organs or their VALUABLE functions. Your ovaries have over 300 different functions in your body; they are VITAL. You might as well take a medication for life AND have then option to STOP that medication when you choose, instead of being subjected to a LIFETIME of having no choice BUT to take it. The 50 choice is to preserve your organs. The effects of surgical menopause (removal of our gonads) are horrendous. It does not cure endo. Remove the endo; but not the organs. Remember you’re on some type of medication to control the endo right for life; at least give yourself the option to STOP and go back. Lupron does help; look into that for a while. Hystersisters are NOT the answer either. Imagine a hysterectomy as the “death” of your organs. They never come back ever. This site is wonderful; she speaks the TRUTH. About all the adverse effects of hysterectomy and ovary removal. Do not listen to your grandmother, that generation is wrong. Its a tough call; because either way we suffer. BUT which suffering do you want? I’d take the endo. Better than this suffering. Almost in the end too like in my case there never is any endo.

  15. Hi Angela my fellow Endo Sister,
    First I have to ask a few questions which are just for your consideration to learn a bit more before the surgery. If you have a Facebook account have you added the Endometriosis Research Center page as well as Nancy’s Nook Endometriosis research and education? These have been extremely important in my life. I will give you a small piece of my more up to date background as I am 26 and had a hysterectomy last year in March at the Center for Endometriosis Care in Atlanta, GA with Dr. Ken Sinervo. They offer a free records review.
    My second question is are you having excision surgery done, where the disease is actually cut out or are you not with an actual specialist who is cauterizing and simply doing a hysterectomy? I chose to have the hyst because I told him if he saw Adenomyosis at all to just take it because I was literally dieing, down to 105lbs and I am 5’7. As he suspected I did have Adeno which is simply Endo in the lining (muscle) of the uterus. There are treatments if you want to try and conceive on your own or just don’t want to lose your uterus, but for me I have a beautiful baby girl God blessed me with and I was unable to even take care of her so I chose to give that up, which I do not regret at all. We left in my left ovary, right ovary & tube plus appendix had already been removed, but kept it for hormone purposes. I can’t say it enough how important excision is and how much better the results are rather than cauterization or burning the tissue. Endo grows into our organs, so burning the top does not kill the entire disease, cutting it out removes it all together and it takes someone like Dr. David Redwine, Dr. Robert Albee, Dr. John F Dulemba, Dr. Cindy Mosbrucker, all from different areas around the country. Many women, including myself, have to save up to travel to a specialist with no insurance or insurance that does not cover a true specialist for Endometriosis. If you are with a regular ob/gyn who is only allotted an hour or 90 minutes for surgery I suggest finding a different one quickly. Specialists know that it can take up to 4 or 5 hours for many Endo excisions. They look in areas a normal practicing ob/gyn would not to prevent further surgery. That’s not to say your PID won’t still give you problems. I have PFD, Pelvic Floor Dysfunction with chronic inflammation, a pelvic floor physical therapist can do some amazing things to help as well as many all natural medicines that have no side effects and you don’t have to pay a doctor to be able to get it. I am on facebook if you would like to chat more and I have many resources you could use, but he groups I mentioned are extremely important and members of the ERC run them voluntarily and many of the doctors I mentioned are also on the page, anyone not in the group cannot see what you post so it is very blunt and we are open about issues you would think you could never discuss. These people saved my life through a virtual world and I have only met one of them. Take in all factors before doing it, I thought about it for probably 2 years before I finally had to just kind of give in to my body, and it was more than worth it for me, but I had a true specialist with amazing skill, cantor, and just down to earth goodness, Dr. Sinervo, the doctor and having excision are the most important things though. Good luck and prayers from a fellow Endo Sister.

    Casey Henderson

  16. I had three surgeries prior to my hysterectomy. If you have second thoughts give it more time. For me, the hysterectomy was the best thing I ever did. I never wanted children and had struggled with stage 4 endo that had attacked my spine, bowels, bladder and everything else. The doc ended up taking everything and I thank god every day that I finally have a life without pain. My only recommendation to other women is that you make sure it’s the right decision for you and that you are ready. They can’t put the organs back in you. ;). Good luck!

  17. I saw someone note about still bleeding post hysterectomy. My uterus & cervix were also fused to my rectum. I initially wanted to be able to keep my cervix in tact. But he warned me that I could still bleed if I kept my cervix. There are many additional health risks to losing your ovaries at an early age like osteoporosis and your heart health. I am so glad I kept mine and I am turning 45 next month. I have stayed on a low dose bcp non-stop to just help minimize the ovarian cysts and level my hormones out. While I am thrilled that my uterus is gone please don’t consider it an all or nothing situation. We all want to believe desperately that it will be the final magic cure all but everything brings its own set of issues. I will be praying for you that you get the best possible outcome.

  18. The strength to endure and navigate the medical system with endo or really, most women’s reproductive health conditions is immense. I had ablation which caused scare tissue to block blood flow to my left ovary (imagine the pain of a heart attack in your ovary), had to have a hysterectomy 2 years ago. One surgery often begets another, but so often there are no other options. Help us, help women everywhere.

    To continue our mission to break the silence, bring more research and data to women’s healthcare and improve women’s health, if any of you would like to tell your health stories, we’d be happy to post. Contact us at: info@hormonesmatter.com

  19. Don’t do it… I had a radical hysterectomy at 35 and it swaps one set of problems for another. Surgical menapose is evil.

    It took 7yrs for my diagnosis for endo and I could hardly walk due to pain. They told me my insides where a mess and organs pulled out of place and stuck together and a hysterectomy was the only choice. And to ensure the endo didn’t grow back I’d couldn’t have hrt for 12mths.

    The op wasn’t straight forward due to the damage and it took 6weeks to work up to spending 5mins on my feet.

    Woman take yrs to reach menapose, but this through a you in to a hormonal and physical nightmare. Tears, confusion, upset, steaming, depression, hot sweets, sleepless nights, embarrassing hot flushes, and add insult to injury rapid ageing, flaky skin and servere fatigue.

    6 weeks later I started with more pain, 4weeks after this more surgery to find a rapid growth of endo, within 5weeks of this endo surgery more pain and a few weeks later more surgery as my bladder was riddled. Then another 3ops to the top of my vagina as the scar contained endo, shortening it every time.

    I eventually found a surgeon who cried when he heard what I’d gone through and said a hysterectomy for a woman at 35 is barbaric and our hormones are paramount to future health.

    He said its like removing your thumb cause it has a sore. You treat the sore, not cut it off.

    He performed a radical excision which was terribly painful. Which basically skins your pelvic area, removing all tissue good and bad right back to the bare minimum. It worked! I’ve never had endo return in that area. But unfortunately I’ve had further local excisions as the endo has grown right up under my ribs both sides.
    Unfortunately he can’t operate any further up as its not his area of expertise. But I’ve never had any regrowth in those areas.

    They said estrogen feeds endo, but blood test after blood test shows I don’t have any.

    It’s now 7yrs on I’m now on a low dose of hrt estrogel as I’ve been so tired and struggling with out hormones.

    And also trying different hrt is evil too, hormone hell until you find one which you can tolerate.

    I was diagnosed with endo, pid, fibroids and polysistic overies, but I’d rather of dealt with those than have had my hysterectomy.

    Please think twice about this as you are very young. Ask about a radical excision and if they don’t know find a surgeon who does. The hysterectomy should only be the very last resort.

    This is my surgeon and he has great questions for you to ask your consultant to ensure you get the correct care. http://www.endometriosis-consultant.co.uk/

    Good luck xxx

    1. Yep I agree with Angel 2000%; this is a worse horror story. What does it say to you when we have all suffered GREAT PAIN with endo, ando, fibroids and the such, and we Would RATHER take that then this life altering surgery. ALOT! Do not do it. You will suffer a worse fate – and you can’t go back – EVER. Remember it is the “death” of your organs.

      1. Remember endo and ando don’t kill you. BUT having your ovaries removed will kill you sooner with higher risks such as stroke and heart disease. As well as impaired brain functioning. Short term memory loss is awful.

        1. Thank you so much for your concern. I am 100% well aware of my choice/risks and I am happy with the outcome for me. The damage to my kidney’s, bladder and bowels alone from Endo have caused irreversible damage so I am sure right now the greatest risk is having my organs shut down like my kidneys or a bowel obstruction. My concerns for heart disease and stroke are on my mind but if I had to sit there everyday and worry what good is that? I have not had quality of life since I was 7 yrs old due to multiple bowel issues/surgery etc so I can only tell you that you trying to attempt to scare me or warn me of what I already know will not change what I have done or how amazing I feel. It may not have been life or death to some but it was for me, mentally and if it continued I am sure kidney failure..

  20. I had my first ovary removed at age 18 due to a malignant tumor. My follow-up surgeries resulted in the removal and biopsy of many chocolate cysts all throughout my pelvis…not given a diagnosis of endometriosis until I was 23. I spent 3.5 years on Lupron until my insurance would no longer cover it. After surgery #7, I decided to have a hysterectomy. My dr. initially wanted to leave my left ovary in, but it was so damaged from endo and scar tissue that I knew leaving it in was a bad idea. Not only that, but the major blood supply to that ovary would be gone with the removal of the uterus. I also have interstitial cystitis and vaginismus. Sex, and even arousal, has always been painful. I spent 4 years completely celibate because of the pain and the lack of sex drive caused by the Lupron. (Also, the Lupron and add-back therapy caused gall stones, so I had my gall bladder removed too.) So, pelvic surgery #8 was a complete hysterectomy at the age of 31. I never had any children. I found out afterwards that my uterus was affected by pretty severe adenomyosis. I can tell you that, although I still mourn my fertility, I have never felt better! Sex is rarely painful, pelvic exams are virtually pain free (who knew that was even possible?!), and I’ve gone from taking 3 medicines and a supplement daily for interstitial cystitis to only taking 1 medicine a day for it. I avoided taking estrogen for the first 8 months, but I used a natural progesterone cream. Now that I’m on prempro, I feel pretty good most of the time. I don’t regret having the hysterectomy, not even a little bit. I know you have to sort through what’s best for you, but I’m SO glad that I had it all taken out. My quality of life has improved drastically.

  21. I don’t think there is a right or wrong choice. There is no perfect treatment and there are no guarantees with this disease. What works for one may not work for another. The only thing you can do us arm yourself with as much knowledge and information as you can find. Ask questions. I opted for a Total Laparoscopic Hysterectomy, scheduled for 2/28 as well. I was just recently diagnosed and decided to just get it over with. I don’t want to go thru several laparoscopies before finally having a hyster. Join the website Hystersisters.com if you haven’t already. Amazing source of support and information. Once you’ve made your decision, be confident and go with it.

    Good luck to you!

    1. There is a right choice; DON’T do it. I have come to learn that NO doctor has the answers OR the god given right to remove another human beings organs; all in the name of science. Now believe me medical science has its place; perfect for an accident or saving a life. But not for this. Now with research I have found that the eastern and Asian diets especially and lifestyles do not suffer from such “western” diseases. They barely suffer from menopause symptoms because they have eat estrogen based foods. Science has got way out of hand; so has commercialized western foods; which cause more disease than we can imagine. Again science has it’s place in life. It can be life saving and is. Thank goodness for antibiotics or antivirals. Also our “blood type” holds the answer as well. At a cellular level our cells hold the keys to our health. Also, estrogen IS the eternal fountain of youth for a woman. NO creme or beauty product will ever replace this – ever.
      Our fountains of youth are INSIDE of us – a powerful and delicate eco-system that has been awfully imbalanced by taking a “pill” to cure all.

  22. I had painful periods, burning throughout my entire abdomen for 2 days a month i was incapacitated as well as short cycles, had brief relief after lapro to remove leisions and then had a surprise pregnancy.Then back to suffering. My obgyn did not want to do a hysterectomy and wanted me to try the mirena iud, I got that 16 months ago, after 3 mo i stopped bleeding all together, no cramps, no burning and pain at all anymore. I dont think its a widely used endo treatment but it has been my miracle, and sex is very enjoyable now too! Just a thought for anyone it may be an option for.

  23. Hey there,
    I wish you the best of luck. I had a hysterectomy last year due to my endometriosis. It had gotten unbearable and after exhausting all other medical and alternative options i decided to get a hysterectomy. Im 33 and never wanted children (not that i could likely carry a child anyway). Due to the severity of the endo she was not able to do the surgery laproscopically. I have quite the scar. While i thought life would be so much better post op, it wasnt as perfect as i thought. I have a lot of bowel involvement and my cervix and rectum are fused together from the endo. I still have my ovaries and i still get my period every month despite not having a uterus! Ive been trying a new medication, Visanne, but im still bleeding monthly and having pain :(.

    Im not discouraging you from getting a hysterectomy, just want to prep you that it may not be what you expect afterwards. I wish you all the best!!!

    1. What you would have needed to have had a lasting shot at relieving the pain, was an oophorectomy; removal of the ovaries. The ovaries make the majority of your estrogen, though some is also created by body fat. As I noted in a previous post, 80-85% of women remain endo free/pain free after this. As long as you have your ovaries, they will keep producing estrogen and within 5 years of surgery it returns in the majority of women who had surgery. I’m sorry to hear that you are having continued difficulties after such a difficult surgery. Of course at your young age it is not considered the best choice to have one’s ovaries out, but given that you have such infiltration in many other areas, perhaps it would be something to consider. Hopefully then you could allow the endo to shrink down in all areas and then after a year, consider hrt. However you choose to continue to deal with the situation, I wish you the best too.

  24. I never begged for a hysterectomy. I always expected to have children but I was dianosed with endo very late in life. I was almost 41 when I had my first surgery. My adenomyosis was so large that they thought it was a fibroid. So they cut it out of my uterus like a fibroid. I was diagnosed with stage 4 end then. My uterus was fused to my rectum. As time progressed after surgery my bleeding was so severe and so was the pain. I delayed my next surgery for as long as possible and finally did it July 12th of 2012. I demanded that my ovaries remain. My surgeon consulted with someone from the cleveland clinic who agreed with me. So I lost one tube, my uterus and cervix. It was a 7 hour surgery. While the loss of my uterus has caused me a lot of emotion grief, physically it stopped the debilitating bleeding and a huge burden has been lifted. For me it wasn’t just the endo. My uterus was a complete mess. I am really glad it is gone.

    1. Wow, I feel for you truly! I see in this case that you’re surgery was a god send. Man what woman go through.

      1. I would love to know what is the true cause of our uterus failing us? We are all perfect before puberty; is its diet, lifestyle, stress?

        1. They know that when they inject the chemical dioxin into rats that it makes them have endometriosis. There are genetics at play. There’s also your family history of exposure that can affect the dna. For example, my grandfather was a coalminer. That is a dirty business which may have affected his health and then can show up generations later. Saw that on a PBS scientific program. My father worked in the automotive industry, and was exposed to lots of industrial chemicals, which could have affected his dna and been passed on also. My mother interestingly never gets sick, and she worked as a nurse around lots of sick people for 40+ years. Never. I on the other hand, have always been sickly. Theoretically, my mother’s overactive protective immune system could have contributed to me not developing a strong immune system. That is just my own hypothesis. There is evidence to suggest that endometriosis has a lot in common with cancer. Cancer is about abnormal cell proliferation/growth and endometriosis is as well. Years ago I read an article in a medical journal in which a researcher stated that when there is a cure for cancer, there will be a cure for endo. Additionally, prostate cancer and endo are treated with one of the same drugs, Lupron. I think of prostate cancer as the male endo. This is a complex disease that not even researchers have figured out the cause of yet. Sadly, given that this isn’t a well known disease and isn’t well funded, we do not get the research done that other diseases get. Not to mention that it is a “woman’s problem”, and sadly many male doctor’s do not take it seriously for that reason. People seem to also be uncomfortable about the fact that it deal’s with a woman’s genitalia on top of that. I would love to know what is the underlying cause as well, but it will take a lot of money, energy, time and research to figure that out.

  25. Hi. I was told in 2010 two days before a lap that I would need a full hysterectomy. I didn’t do it. A year later, bad pelvic pain again. I researched the best doctors in the United States and choose to go to Atlanta Ga, to see doctor Thomas Lyons. He is very good. I only had my uterus taken out. In the past I’ve had lots and lots of scar tissue as well, all over! I’m still not sure if it was the right thing to do as now I have bladder and still pelvic pain. I’ve been told I have interstitial cystitis, so I’m working on that now. Since the partial hysterectomy, I have no sex drive and if I do have sex it’s still painful… I would say consult with a few doctors and see who you like the best… Good Luck!! Meredith

  26. Thank you guys you have both been very supportive and understanding. Its such a confusing decision to make but I am not sure if she will do it this surgery but I have a pre-op and I am going to tell her to take it all but we will see. I am just so tired of all of this. 23 yrs of living in this type of pain and all the complications and going to doctor to doctor to doctor has really killed me mentally. If I didnt see another doctor again in my life I would be happy!!!

  27. I had my hysterectomy at 36, 2.5yrs ago, after about 4/5 laparoscopies and the pesky thing returning every time even stronger.

    I made the decision at the time to leave my ovaries in as a) the endo was all over them and my right ovary is now embedded into my bowel, so the surgery to remove that would be particularly risky to my bowel and I just didn’t feel strong enough to face the risk of a colostomy after everything else, and b) I felt too young to go through the menopause.

    Suffice to say, here I am, 2.5yrs later, after a wonderful pain free period – back to ‘normal’ and the old horrendous pain is back with a vengeance. So I’m off to the docs next week to get back in the system

    I guess what in saying is that I’ve NEVER regretted the hysterectomy, and in truth, I wished I’d done it earlier as chances were I could never have had children anyway. Now I’m wishing I’d done the whole thing in one go, but you can only do what is right for YOU and what is right for you NOW

    I’m sure you know deep down why you need to do. Best of luck and I hope this sorts it for you. 😉

  28. Im right there with you. My hysterectomy is schedule for April 3rd. I begged for years to have it and now she said yes, wondering if it will help. Theres no chance of me having a baby but I still cant help but wonder what if. Ill be praying for you as you get ready for your surgery.

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