Hi, new to this so bit nervous! OK I have suffered with endo for many years and I have recently been offered a hysterectomy. I'm 35 and

can't have kids due to this charming condition. I've done the research and seen the pros and cons but I have endo in my bowel as well so I really don't know what to do. Obviously a hysterectomy is a massive procedure to go through and I can't find any evidence anywhere that suggests that this would work for me especially as I have it in my bowel as well! Can anyone help?

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  • I can't offer any help at the moment, sorry, but im kind of asking the same questions - I've just been diagnosed and offered hysterectomy inc ovaries, I have app to see surgeon in two weeks, but I'm not sure where to turn for advice either, I'm 41 so am worried about removal of ovaries and the hrt thing as it just seems hysterectomy etc and hrt for endo kind contradicts itself xxx

  • Yes the whole thing contradicts itself! Its very confusing! One consultant told me that the only real cure is to get pregnant, we have tried IVF once but it didn't work and he wanted me to try again. At the time you were only allowed one try on the NHS but now its two, so one guy wanted me to try again, while another consultant told me that the only way to ease the symptoms was to have a hysterectomy! I'm getting nowhere with health professionals, just want some honest feedback so my husband and I can make some informed choices. Thanks for your response Worth hopefully someone on here can help us!

  • As far as I know, getting pregnant will stop your pain because of the hormones produced during that time (no oestrogen I believe), then, once your baby is born, and things settle, your body goes back to producing oestrogen, then, unfortunately the Endo pain can return and Endo flourish. Also, a hysterectomy is not a guarantee of getting rid of Endo. I realise this isn't very factual information but would suggest you do some research on these matters so you can be fully informed before making any decisions.

    Good luck xxx

  • Hi all,

    I have been told this is the past as well, at the time I was very young and refused. I have severe endo and Its also in my bowel. I have adopted, as a birth child wasnot an option, best thing I've ever done! :)

    Have you tried all the other treatments? I had a laprascopy and then Prostap and afterwards was well for many years, then had a second lap, Prostap, a mirena coil and Noristerone, and was well for a couple of years, now waiting for womb ablation while having a Mirena coil and Noristeone. It is a much less serious operation than hyst but would mean the end of any hope of children.

    Good luck I hope you all find a Treatment that works for you. X x

  • The women who have had the Mirena coil (iud) did it kill all pain for you ?

  • pretty much yes.

  • I have had the mirena, it was taken out the other day during lap, it was in for 18 months, and it was only the last three i can really say it settled, it didn't help with pain at all really but it reduced flow quite dramatically which enabled me to go out and stuff, but I lightly bled almost every day and then heavier on period which was not regular at all. I had ablation done the other day too so hoping that keeps bleeding at bay. Surgeon did mention injection for false menopause but I don't see the point of that if I can't have it for very long, and to be honest I'm not keen on any hormone stuff, as I suffer side effects usually. I need to find out if there is any endo specialist in my hosp, or area I suppose as I think the surgeon I had was not a specialist. Xx

  • Hi Jinka :)

    You've kind of answered your own question.....if you have endo on your bowel, how is having your womb and ovaries removed going to help?

    Hysterectomy is not a cure for endometriosis under any circumstances (and incidentally, pregnancy isn't a cure either, it just 'calms things down' for nine months). If the main symptom is heavy bleeding, then of course removing the womb will stop that. I think the gynaes' idea is that if monthly bleeding is stopped, the endo will stop....but the endo will just feed from the HRT you will have to have instead.

    Some ladies are lucky and find that hysterectomy helps them, but lucky is the operative word. You are so young too; who's to say that there won't be a massive leap forward in endo research in the next five years? Once your womb has gone, it's gone..

    It's a very personal decision at the end of the day but any gynae who is telling you that it will be the answer to your prayers is at best naive and at worst disingenuous.

    Good luck in making that decision

    C xxx

  • There is no cure for endo, you can have it scraped away, but the surgeon needs to remove it properly or it will just grow back. I've had a hyster, overies removed etc I'm 46 and I still have it. It can shrink whilst pregnant & having injections etc but as soon as you stop having them the endo kicks off again. I've been on HRT which eased it but I had to come off in January I'm going through the change and I still get it. Back to Gyne soon hopefully to be referred and have it all removed. A hysterectomy can ease it but is often not a cure. I hope this helps ladies xx

  • Hi - I has severe stage 4 endo and was told by my first consultant that a hysterectomy was my best hope. I did research and found out that it probably was not going to be. A hysterectomy would have eased my pain if I had adenomyosis (endo actually inthe uterine muscle). Unfortunately a doctor cannot be certain but can only suspect as this is not confirmed until after the hysterectomy and a biopsy performed.

    Like you, I had queried the logic of a hysterectomy solving my endo if I had it extensively elsewhere. What is the point in removing your own natural hormones on the basis that stopping estrogen will stop endo - particularly if you are going to need HRT! Plus estrogen is made and stored by the fat cells in the body so the larger you are, the more estrogen you are likely to produce (so I understand) plus we get it from food sources and from plastics a pthlates in packaging etc. The more forward thinking now is that lots of female problems (fybroids, migrane headaches, post-natal depression, endo, female cancers are contributed to by not necessarily high estrogen but by estrogen dominance. This is where there is relatively low levels of progesterone compared to estrogen - so you could have low estrogen but if progesterone was low, you coud still have estrogen dominance that over time encourages many of these things. It all made sense to me as I had a certvical erosion when I was young, I had a pituitary prolactimona (hormone related brain tumour) and then finally severe endo. All of which were indicated by low progesterone rather than needing estrogen.

    Apparently we have progesterone receptors throughout our bodies and they are strongest in different places in different people, hence this hormone imbalance created different symptoms in different people but all with the same cause. I am not a medical person so I have no idea whether this is the case but it made perfect sense to me and explained my own journey.

    I did not go down the hysterectomy rand HRT route but found a different consultant who offered to remove my endo rather than remove organs. I had total radical excision surgery. That was over 2 years ago and I have been absolutely endo pain free and functioning normally since. My surgeon had said he thought i probably did have adenomyosis as well as a bulky womb was indicated but I decided to have the radical excision first and then go back again for a hysterectomy if I found that I was still in pain after removal of the rest of the endo.

    I also had it on my bowel which was completely out of place, hence the 'IBS' symptoms. But I had this shaved off rather than undergo a bowel re-section. My surgeon said that a bowel resection was only necessary when it had actually penetrated the bowel wall. He said in his extensive experience, this was a fairly rare occurrence and was generally on the outside of the bowel sticking everything together.

    If you do need a hysterectomy for adenomyosis, there is no need to lose your ovaries at the same time unless something nasty like cancer is indicated. An endo surgeon should be able to save them for you and remove the endo. The remaining endo elsewhere should be excised otherwise you will still have endo which could be aggrevated by HRT, particularly if estrogen. There are 3 types of estrogen and I think it is only one that is implicated so I would imagine that HRT excludes this aspect of estrogen. I don't know.

    If yo are not immediately comfortable with the systerectomy route, take your time and ask for a referred to an endo surgeon consultant for a second opinion.

    My surgeon has unfortunately gone private now but there are other centres for excellent for endo.

    I felt like you did, quite traumatised with the choices I was being given but I did feel at peace with having the endo removed rather than anything else and I did not want to take hormonal drugs as I tend to react badly to drugs and such like.

    All very best wishes to you.

  • Big thank you to everyone for the response. The only treatment that has worked for me so far has been the Pro strap injections but I was only given them for 6 months. I was pain free for 8 months ( including 2 months after the injections stopped) and then I was straight back to square one. I'm waiting for another Lap, which should be in the next few months and thankfully the consultant who suggested the hysterectomy has discharged me to an Endo specialist in a different hospital. Was the total radical excision offered or did you have to ask for it? That sounds by far the better option.

    Many thanks xx

  • Hi - I had to ask to be referred to the specialist who undertook it. I had selected him because I knew he had pioneered this type of surgery. When I asked my first gynae to refer me, she still wanted to refer me to one of her pally cronies at the local hospital saying it would save me having to travel. When I looked him up, whilst he was a keyhole surgeon, it was not particularly endo that he specialised in. My GP referred me in the end at my request. That is good news that you are being referred to an endo specialist.

    Let us know how you get on. All very best wishes x x

  • So true, Hysterectomy isn't the answer and neither are many of the traditional methods I have endured.

    Has anyone looked into nutritional therapy to get your endo under control?

    I suffered excruciating pain since my periods first started and was misdiagnosed for tears, then at 19 told to have a baby to get rid of the problem!!! After years of hormone treatment, injections, surgery and eating pain-killers like candy, I was introduced to nutritional therapy and now I have beaten the pain. It took a few months, but the first period was less painful, the second even less and by the third no pain! Now when my period arrives (usually without me knowing it) I laugh out loud each time because it is so different from what I endured for years.

    Everybody is different and it may not be the answer for you, but it's worth checking out. It is so amazing to be pain-free and not having to mess with my hormones any more.

    Happy to share what I have learned in the hopes it helps you beat the pain like I did.

  • Thanks for all the responses everyone! I really wish that no one had to suffer from this horrible condition, but I'm grateful that there are so many people who do have it that are willing to share advice and support others! Many thanks xx

  • Hi,

    All the best with your decision.

    I would advise you to be sure about the infertility diagnosis before you make a choice though. I was told for many years, by many specialists, that I was infertile and should 'just have a hysterectomy'. It turned out that yes, I will have fertility issues due to a completely fused fallopian tube and extensive scar tissue, but I am not yet classified as infertile because until I try to get pregnant, I just won't know and there is a still a chance. I was first told to remove my womb at age 23. In my opinion, it's really sad when specialists suggest taking someone's womb out before exploring other options, especially when they don't yet have children.

    I am not trying to give you false hope. You know your situation better than anyone could. Just hoping that my experience might be able to help.

    Wishing you the best x

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