Hysterectomy

Hi does anyone no if having this done and taking ovaries and womb away, if the endrometriosis comes back, I'm on the waiting list said yes to it but no having second thoughts as my bowel is stuck to my womb as well, so a slight chance I could have a bag. I've got stage 4 endrometriosis and have been on decaptyl injections for some time which works great, but cannot stay on it anymore due to its side affects which makes your bones weak. With the injection I'm suffering a little with pain but once I stop and don't have the surgery what can they give me to stop it. I really don't no now what to do as when I used to have periods I was in agony, and thinking off being in pain again with both is making me think its the best thing to do, I'm dissabled with stage three disc disease as well so my back could get worse when on operation table. Anyone advise would be great natalie

21 Replies

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  • Hi Natalie,

    I was in the same boat as you, and I cancelled the hysterectomy, as it IS NOT A CURE for endo.

    Have you looked at endometrial ablation? They take away the lining of the uterus not the uterus itself. It helped me immensely and is very very minor surgery...

    Hope this helps..

    Nicky

  • Wow that's sounds interesting many thanks I will contact my doctor and ask her about this, but I no she thinks hysterectomy will be the best thing for me, but like you I'm thinking no if it dosent get rid off it what's the point in doing it. Many thanks nicky will try and update you.

  • I had hysterectomy last yr aged 28 n have been in pain with endo f last 3 mnths so no it doesn't always work.

  • No worries Natalie, if your problems are mostly period pain related then it should help a lot. You are only knocked out for about 5 minutes, so the prospective damage to your back should be minimal. As you said the decapeptyl has helped, it seems to imply that the problems you are having aren't related to the adhesions, but to the endo itself.

    Ablation totally stopped my periods and the crippling pain for 3 weeks of the month, but unfortunately hasn't touched the pain that is coming from adhesions.. off to the consultant again!

    Good luck,

    nicky

  • Hi Natalie..

    I had a TAH BSO in April, last year. I was 43. I'd already had a previous Cyst and ovary removed in Dec 2010. Like you I was having Decapeptyl jabs...my Gynae recommended a Hyst and as I was in such pain I saw it as my only option. For me the fatigue that went with Endo was absolutely overwhelming, just awful. My bowel was stuck to the uterus too; severe endometriosis, pelvis was stuck ...

    Anyhow fast forward to now...sadly I'm in the same position as I was before my op...I had about 4 months where I felt Amazing, such a great feeling but now I'm sat on sofa feeling absolutely shattered and in pain.

    I don't think there is an answer to Endo; you take what's on offer at the time to try and make life a little more bearable...

    Good Luck...Deb xx

  • I know lots of ladies that have had their endo return after a hyst - in some people, it's the HRT that triggers it, but in others they don't know the reason. It's much more difficult to treat after a hyst and your likely to get very severe adhesions that make your pain so much worse. Please think very carefully before going down this route. I knew one lady that was quite bad before the hyst but ended up almost permanently hospitalised afterwards and they couldn't do anything to help her.

    Don't stay on decapeptyl too long - I stayed on zoladex for two years and even though I came off it 3 years ago, I still have no libido, hot flushes etc and I don't know why. I would recommend either going on the pill back to back so you have no bleeds which should stop the endo spreading and maintain the results of the dec. after a good break, you could go back on the dec. again for a 6 month course.

    If you haven't already you should get a referral to a pain specialist who specialises in chronic pelvic pain to make sure they are doing the best they can go deal with your pain.

    Don't give up hope. There are still things you can try - my pain spec in London put me on a pain management course, sent me for homeopathy and accupuncture, ran tests and tried lots of meds. You're not at the end of the road yet and you shouldn't be thinking about a hyst until there are no options. Even then I wouldn't do it:

    Have you had excision surgery by a recognised endo specialist? This could be a huge help to you, although the dec may have shrunk all the endo down and made it difficult to visualise or remove.

    Big hugs

    X

  • Hi there,

    i'm 27 and booked in for a hysterectomy, was supposed to happen last week but it had to be postponed. i have had endo since a young age, been diagnosed stage 4 with bowel issues, obliteration of pouch of douglas and now a severe prolapsed bladder due to cramping and problems from labour. I suffer terribly with bowel issues and the shame of my last pelvic exam will never leave me. thankfully i have had my children and want no more so fertility worries are not an issue. I had been reccomended to have the ablation but as this won't help with bladder or bowel issues its no longer an option. so my doc has decided to go in all guns blazing, do a hysterectomy, clear all endo by excision (greatly reduces chance of return but only if they are very thorough), do a tvt repair on my bladder, and a repair on my bowel. I know a woman who had opted for the ablation and it was a great success but likewise i know a few who ended up getting hysterectomy anyway as it only treats inside the uterus which as we all know is not really where the pain arises, if the adhesion's etc are left in they will still cause pain. To solve issue of HRT causing problems in future my doc has suggested leaving in ovaries but again being very thorough at removing all traces of endo on them (my tubes have prev been unblocked twice from endo).

    |The only way to put your mind at ease i have found is to sit and ask question after question, what happens in this senario, is this a better option than this, what can we do about this problem? once i done that my consultant really sat up and listened and had a proper conversation with me about my situation and all the options. it completely put my mind at ease and let me make an informed decision. i only got this after requesting another appointment from my consultant's secretary and explained to her how i was feeling and how i needed more info for such a large decision and she was so sympathetic and got me an appointment for two weeks later. (getting the PA on your side is always handy for appointment progress checks etc lol!)

    sorry for the long post, just really wanted you to know you are not alone and although we hear a lot of hysterectomy not being a success i believe with the right approach it can be and likewise the ablation can have the same recurrence issues and then its been an extra op for no reason. only you can decide what best for you after asking all the questions and gathering as much info as poss.

    good luck x

  • I'm sorry you have to have such a serious operation at such a young age - that must have been an incredibly difficult decision. I think the biggest difficulty at this age, especially as you've already had your family, is the fact that either keeping your ovaries or taking HRT makes it much more likely that the endo will continue to cause problems - even if the surgeon is careful to remove all visible endo it can grow beneath the surface, within muscles and so on, especially if your disease is severe. It's great news that they're doing excision rather than diathermy etc as that should remove more of the disease.

    My concern about hysterectomies where the ovaries are left behind is that, since the endo is outside the womb, the only thing it will stop is heavy periods, and this can be managed in other ways. If you have adenomyosis then it's more understandable, but the high chance of adhesions with such major surgery could cause more pain that is almost totally untreatable.

    The only thing I would say is - have you had excision surgery followed by something like zoladex? If so, did that help? If your ovaries are retained, I suppose you could still have courses of zoladex every so often if your symptoms return which wouldn't be possible if they were removed and you were on HRT. Then again, if this is the plan, then maybe thorough excision surgery with regular courses of zoladex is a less risky option for you. At least then the excision surgery can be repeated when needed - once the uterus has been removed, the adhesions can be very severe and make excision sugery very difficult.

    I'm sorry, I'm not trying to make you question your decision - I know that in extreme cases there are no easy or risk-free options. I just wonder whether this is completely in your best interests - its great that you've got such a good relationship with your surgeon and can have a frank discussion with him. However, I would still do as much of your own research as possible and speak to as many people as you can who have had the surgery, preferably at least 3 or 4 years earlier.

    I really hope that you get some relief from this awful disease and that whatever happens it improves things for you - I really sympathise with the feeling that you have no options left (I suppose I'm fortunate in that a hyst wouldn't help me anyway so I don't need to make that decision but I have run out of treatment options now). You deserve to be pain free and I will cross everything that it works out well for you.

    Xx

  • Hi thanks for commenting on this for me, I've made my decision now as I have spoken to two offer people who have had this procedure done and they say its the best thing they've ever done, as I'm having everything taken away there's no where for it too grow again, but my issue still is the bowel but apparently I've got three surgeons operating on me for this procedure and I can speak to them before hand and let them no off my worries, and if I'm not happy with there suggestion I can cancel. So I'm ok with this now and been told to stop reading other people's thoughts as people are different than others. But I really am happy you gave me your opionin, I hope everything works out for you and me many thanks again. Plus they wouldn't want to do two operations so I think this one will be.ok

  • I'm glad that you've made your decision and I genuinely hope it's the right thing for you.

    There was just one thing I wanted to point out - having a hysterectomy doesn't mean that there's nowhere left for endo to grow. Although you can get endo on the surface and ligaments of the womb and the ovaries, there are many other areas where endo grows: pouch of Douglas, abdominal wall, bladder, ureter, bowel etc.

    That doesn't necessarily mean it will return but I would hate to think you're going into the op thinking there's no chance of it returning because there's nowhere it can grow.

    If your surgeon is incredibly thorough in removing the endo, removing your ovaries thoroughly (I've heard about some women where some ovarian tissue has been left behind and this has been enough to trigger endo growth) and you avoid HRT if at all possible, hopefully you will be okay but there are no guarantees. I would speak to your consultant about what happens if the endo does return after the surgery, and make sure he is going to remove as much endo as he can.

    All the best with the op, I hope you have a speedy recovery

    X

  • THANKYOU for all your comments but I no now that I'm going to have this done, and yes there are risks but so is life, many thanks for your imput but I'm happy now as have had positive answers to my hysterectomy and feel happy to go through with it, many thanks

  • I do hope things work out for you and you have a lovely, healthy and pain free life :)

    Jo xxx

  • Hi Natalie73, have you had this done yet? I'm due to have it done in July and would love to know how your op went and your recovery and also if you have had any further issues sine having it done. Thank you

  • All i can tell you is that i am 7 week post op from TAH,I kept my ovaries due to me being 35.I had endo on the nerves to my back my bowel and bladder i also had adnemyosis and fibroids so was in alot of pain and couldn,t lead anywhere near a normal life.I had multiple laps and all the treatments ending in deceptyl for 7months.It was such a hard decesion as i have no children.As for it coming back i try not to worry,i look to my family history,my mother had this done at 40 and her endo never came back so i am hoping that will be me too.Hope this helps.

  • If you have adenomyosis then I think a hysterectomy is more justified in a lot of cases as its very difficult to treat effectively. With the addition of fibroids, it sounds like your womb was causing you a lot of trouble so I can understand you taking that decision - I worry more about cases where the womb itself isn't really causing any issues other than heavy periods and there's no clear reason why the womb is being removed when it's not the real problem. I only worry because I know lots of ladies from another endo group that have ended up in a far worse state after a hyst and excision, even with the removal of ovaries, and lots of gynaes either don't fully understand the risk of the endo returning, or don't fully explain it to the patient (I can't count the number of doctors who have told me that either a baby or a hyst is a cure!).

    It must have been a very difficult decision to make if you still wanted children but I hope it turns out to be the right thing for you, and that you get a huge improvement in your quality of life. Make sure you're taking it very easy now to prevent adhesions as much as possible and stay positive. All I would say is that, if you do get any symptoms, make sure you see the gynae straight away so that they can try to deal with it urgently - I believe you can still have zoladex etc as you still have your ovaries so that's always an option.

    Take care of yourself

    X

  • Hi I am on the waiting list for this operation, I have fibroid cyst on ovaries, blocked tubes and can never have children due to myself and husband suffering complications, I've always wanted children but were happy as we're are, he dosent want to adopt, plus I have three level disc disease and wouldn't be able to pick a child up as I can't lift a bag off potatoes, I also have irritable bowl syndrome, yes I understand all what your saying and do really appreciate your comments, my gyno has explained it all to me but if I get there and want to ask them questions believe me I will, as my bowel is stuck to my womb and I'm in so much pain, I'm on ten different types of medicine for all problems, zomorph I take 170 mg a day and 1200 gabapentin so if it helps me cut down on medication will be another bonus, but as I said THANKYOU you all so much for your imput, hope you all get sorted too one day, if I do go through with it I will let you all no the outcome love from Natalie x

  • Natalie - good luck with your operation, I am 12 weeks post op from a Hysterectomy with stage 4 Endometriosis also, like you I battled for many years but nothing worked. I'm sure that you know that the operation isn't a cure but it is the next step to find a way to manage this awful disease. Endometriosis is very unique in that it affects everyone differently so as you say you have made up your own mind so good for you, I cannot stress enough however the importance of healthy eating if you aren't doing so already:) dairy/gluten/meat/sugar are all thought to increase the growth of endometriosis, reduce or eliminate those along with processed foods and increase fibre, fruit and vegetables- good luck! For friendly chat with other endo sufferers join twitter and search under #endosisters :) x

  • Many thanks for leaving these comments very much appreciated x

  • It didn't work for me. 6 months later the pain returned and its taken nearly 2 years to be diagnosed again just like at the start. Now i am going in for another surgery and i still don't work. ;-:-( Hope it all goes well for you xx

  • Hello

    I'm six day post surgery - full hysterectomy and I was told there was 80% chance of coming out of surgery with a bag. I came out of surgery with NO bag. My bowel and bladder went back into place with problem. So much so the surgery was back in my room to see my husband before the second part of the football match last Thursday. I have exceeded my consultants and nurses expectations of my recover so far. I do have a lot of wind, which they say that's normal.

    Hope this helps, if you want to pm me your more than welcome.

    M

  • I had total Hysterectomy and Bilateral oophorectomy about 12 years ago...the endo was all over the place......I am having some problems now (not sure if they are endo related or not, currently being investigated) but by and large having the hysterectomy was the best thing I did as it gave me a life back and with very little problems for at least 10 years.

    My daughter is now awaiting her umpteenth Laparoscopy and has all the decisions many of you are now facing to make but each of us has to take all information available on board and make our own mind up which avenue to take.

    I am doubly blessed in managing to have children myself and then two grandchildren following my daughters previous Laparoscopies and endo removal.

    Good luck to all you lovely ladies out there whatever your decisions are, life is always a gamble and none of us know what tomorrow will bring, 'one day at a time' !

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