Endo returned with vengence- can I request hysterectomy?

I had endometriosis aged 18 and had surgery, lazer excision, followed by 6 months of Zoladex injections. I have since had my two children and now aged 25 find that my symptoms have come back with vengence. I am due to see a consultant next month and am hoping to ask for a hysterectomy as I have had my children, do not want anymore, I also do not want to have to suffer like this for the rest of my days. I want quality of life, a career and to be able to just enjoy myself which I really cannot do now.

I currently get severe pain when ovulating, causes diarrhea and vomiting, then I bleed a few days before my period, then have my period which is very heavy and lasts at least a week. Also very painful. I am in pain for at least 2 weeks every month to the extent I can be bedridden at times. Sex is painful and so is toileting.

Over time my symptoms are getting worse. I currently am prescribed tramadol, diclofenac and tranexamic acid all of which help slightly.

I would really like a full hysterectomy as then I can hopefully draw a line under it and move on in my life.

I am just wondering really what my chances are of getting the hysterectomy really? Any help or advice would be great as I have already lived with endo for about 8 years now and am not prepared to carry on!



7 Replies

  • Have you considered Microwave Endometrial Ablation to remove or cook the lining of the uterus so it bleeds far less, in some ladies it stops periods all together. A far less invasive way of stopping periods than having your womb took out.

    The difficulty is that hving your womb out, leaving the ovaries in doesn't do anything for the endo else where inside you. It still feeds of the oestrogen from the ovaries and other oestrogen sources. If you have the ovaries took out too then you are left on HRT for many years which also feeds the endo.

    A hysterectomy will not resove toiletting problems or painful sex either. nor will it resolve endo pains. So the only benefit is to stop the actual uterine period bleeds and pains, and it can make pains worse because it encourages more adhesions to grow among other nasty side effects of surgery.


    an MEA would be worth considering as far as stopping periods is concerned, but you didn't mention the mirena coil and personally I found that when it stopped my monthlies it made a HUGE difference to my quality of life it really did. A massive reduction in pain levels and hassle, inconvenience and worry.

    It can last up to 5 years of relief for each coil. Meanwhile allowing your ovaries to still be protecting your bones and heart and improving your long term health prospects.

    My gynae advised that he would never un-necessarily do a complete hysterectomy before age 50 if it could be avoided at all. I was already over 40 at that time and knew I couldn't have kids and had had enough and was pushing for a hysterectomy too having suffered for almost 30 years before endo was fnally diagnosed and attacked. That's a heck of a lot longer than 8 years which will have included time off for two pregnancies. So you can imagine my relief to find that the mirena stopped my living hell when it did. Sadly mine ran out rather sooner than 5 years and I am now awaiting surgery to install its replacement, due to deformities down below mine have to be put in under general anaesthetic, but I am still willing to go through that because of the drastic improvements it did make.

    I don't think they will even consider you for a hysterectomy just yet.

    Is there some reason you are not on BC pills, implants or mirena for your monthly hell?

    Even norethisterone taken every day can help but it's big commitment to remember to take them so regularly to kid your body in to thinking it's pregnant.

  • I cannot tolerate hormones, I have had many different combined pills, mini pills, both types of coil both which made my bleeding worse, I have had the injection, the patch and according to my GP am out of options. I am considering getting sterilised if they decide not to take any action as then they will realise im not just whinging.

    When I had my laparoscopy and diagnosis the consultant did say that most of it was around my bowel area. Apparently I had it quite bad.

    I dont really know what other options I have really, I guess Ill just have to ask my consultant. But hormones and me dont mix - they make me very depressed and snappy and that isnt fair on my family or me.

    I did try another mirena coil recently but again it wasnt suitable for me and my body rejected it.

    Does MEA stop periods forever? Does it stop fertility? Its not something I have researched as my GP is thinking along the same lines as me and more towards a hysterectomy.

    I feel for every woman suffering. I know Im 'young' and I was very lucky to get a fast diagnosis but equally I am determined to take control of my life and future

  • Hi

    As has been said, hysterectomy will only work for endometriosis if the disease is confined to your womb and ovaries. As yours is mostly around your bowel area, and your consultant said that it's bad hysterectomy will not work. Obviously you won't have the womb pain and bleeding, so it will be one less symptom, but you could be storing up a huge set of new problems.

    Also, because you are so young, you would have to have HRT; this doesn't sound as if it's an option if you cannot tolerate hormone treatment.

    I saw my gynae last week and she was gobsmacked that hysterectomy is even considered as a treatment for endo. Even if you see the best endo consultant in the world and he/she excises every little bit of it from the root and leaves you with a lovely clean pelvis, the chances of it not coming back, particularly when it's been widespread like yours, are small. And all of that is before you get into the associated risks of surgery and the problems that could leave you with, particularly if there is bowel involvement.

    I completely understand the need to do something, anything to try and take charge of this disease. But the simple fact is that there is no cure, just different ways of dealing with and managing the symptoms, and that's what you need to be discussing with your consultant.

    C x

  • i think u have a good chance of a hysterectomy if u want one.You do have the right to say.I have suffered since age 15,offically diagonozed by lap aged 26 had all the treatments.Pills,coils etc ending in 7month of deceptyl then hysterectomy in nov last year aged 35 no children.By this point i couldn,t walk,was bleeding from bowel and bladder,passing undigested food and the pain was so horrific i wanted to die.I was severly underwieght and suicidal mainly due to no life.I am now just beginning to regain abit of life and myself.It has been so so very hard and i have had alot of councilling but maybe just maybe i think it will be worth it.Of course it has been hard but i am now looking forward to my first ever holiday in september with my husband when i have a good chance of being comfatable ,happy and looking good on the photos.I would say don,t do it lightly do lots of research on your surgeons then see how u feel.xxxxGood luck love.

  • I'm 28 and on Monday i go in for a lap, excision of endo, hysterectomy and pelvic floor repair! I'm only agreeing to this as i've had this horrible disease take over too much too long and suffer dreadfully every month, or less or more depending on AF's mood!! the pill, implants etc all were a disaster. Cant bear passing any more clots and the damage the cramping has done to my pelvic floor now needs repaired as a result. I have tried the mirena coil - twice- and both times it came out with the cramping. In the past few cycles my back pain has been so bad during ovulation that i cannot walk for a day or two I too cannot take hormonal treatments, the mood and in some cases depression they gave me when they didnt offer relief or work was ridiculous. im keeping my ovaries but only on the understanding they do total sweep and are very thorough which i believe he will be, he's the specialist in my area. Some people on here can be quick to raise the point it doenst treat endo and they are right . Im aware hysterectomy doesnt directly treat endo but with the right approach i will have a better chance at getting rid of it at same time as getting periods issues dealt with and hysterectomy isnt the only procedure im getting done for that reason. I'm thankful to have had my family and plan on looking into fostering if we feel the need in the future. This was always a plan of mine when i was told the extent of my problems at 17 and was aware i may never have children.

    you know your body and the effects your living with, make your voice heard by doctors and talk through all options. Find a consultant you trust and who listens, this make a big difference in how confident you are in your treatment plan. Everyones case,problem areas etc is different and only you and your doc can make the best decision for your treatment.

    Good luck x

  • If you do attempt to ask for a possible hysterectomy, make sure you get referred to a endo adhesion specialist gyne. If your bowel is heavily involved and they do agree to do a hysterectomy there is a fair chance a bowel surgeon may be present too to perform a bowel ressection. Of course every case is different for each woman.

  • hi I am going in tomorrow for total hysterectomy cervix going the lot and im only 28 so I would keep perservering if it is what u really want bearing in mind that it is not guaranteed to ease the pain. I had no joy with prostap zoladex etc still bled n was still in pain so no guarantee that this will work but just stopping the bleeding will be a great help for me as I bleed at least 21 days a mnth and it is leaving me so tired and exhausted as it is making me anaemic. good luck and make sure u have tried everything possible and researched it properly.

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