Hysterectomy or not

Hi I'm looking some advice. I had stage 2 endo removed from bladder, pelvis, ovaries, womb and deep within ligaments. I also have bladder ect separated. At this time I had a merina coil fitted. This was in November last year. Since then I have felt exhausted, sore still in real pain and have bled almost everyday. I'm going to see my consultant in a couple of weeks and need to decide if I want a hysterectomy. I don't want anymore kids but just terrified. Really don't know if it will be worth it. Would be keen to hear any similar stories x

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  • I am due to have a hysterectomy with BSO and excision of endometriosis in just under 3 weeks. It's been a long, hard journey to make the decision but I am at the point where I don't really have any choice as none of the drug treatments have worked. I was diagnosed in january last year and since then I've had a mirena, decapeptyl, norethisterone, cerazette and I'm now on prostap. I was referred from general gynae on to a bsge centre and both consultants recommended the surgery.

    First thing I would say is that hysterectomy on it's own is not a solution for endometriosis and you need to be really clear about what is being suggested and why. Removing your uterus will only help if you have adenomyosis. If you don't, even without your uterus, the endo tissue will continue to cycle and bleed due to the influence of your ovaries and you will still have pain even though you're not having periods. Removal of ovaries helps to reduce the reoccurence of pain (and you are less likely to need further surgeries) but it causes other problems (instant surgical menopause, heart disease, osteoporosis) and it should be a last resort.

    With regards to my own disease, the hysterectomy has been recommended because my disease is sadly now just that severe. I have a large rectovaginal nodule (over 3cm) which has caused an obliterated pouch of douglas and glued my uterus and bowel together. My consultant has said that although it would be possible to just excise the endometriosis tissue, this would not be enough to reduce my pain as I also have adenomyosis, endometriomas and a hydrosalpinx in the right fallopian tube. So basically if they just excise the endo tissue, they will still be leaving a considerable amount of disease behind. When they cut out the rectovaginal lesion, the raw tissue left on the bowel and back of the uterus will mean that they will stick back together as they heal. If my uterus and ovaries were to be left in, it is very likely that the endo would just grow back and if I was unable to manage the adenomyosis with drug treatments and then needed a hysterectomy, I wouldn't be able to have one because cutting the uterus off the bowel for a second time would risk permanent damage to the bowel.

    It is a very personal and difficult decision and it is worth getting a second opinion before you go ahead.

  • Thanks for taking thr time to reply. Sounds like you have had a hard time too. I like you do not and still do not want to the rush into any big decisions. I should have said my consultant also confirmed adenomysis and advised that for endo he would only ever perform a full hysterectomy including ovaries ect.

    I'm in the v fortunate position of having private medical insurance through work so I see a specialist endo surgeo/consultant who is fantastic. I saw him a few months ago and he agreed I should take time to think about things. I have spoken with him since and he agrees the marina is not working so needs to come out. I'm still just very confused as to what step to take next.

    Good luck with your hysterectomy xx

  • Is this a consultant on the bsge list? My consultant said at this stage the only reason not to have the surgery would be if I wanted more children, which I don't. After that it was just a case of me being ready to make the decision. Still not sure I'm 100% ready for it but I don't have anything to gain by delaying it.

  • I totally agree no more kids in this house. But just feels like a massive decision and to be out of action with kids, job and house to run. I'm sure your making the right decision and we'll done in having the courage. Keep in touch and let me know how you get on. Good luck xx

  • Hi. I had a hysterectomy and ovaries out 2 years ago but still in pain as I didn't know enough about endo and it wasn't excised at the time. I did have adenomyosis so it helped that obviously but wish I'd learnt more and been at bsge clinic. I am now and on list for excision but it's been a long battle.

    Head over to hysterectomy associations website as loads of useful hints and tips and advice from ladies thinking about the op or just had it.

    Good luck

  • Thanks Marcia. I already had as much excised as he can. I'll def have a look at the other website as I really feel I don't know enough x

  • I was diagnosed with endometriosis when I was 17, I have been I hospital more times than I had been at home even when I had my son. I was told I would never have children and sadly I lost my sons twin due to it, I nearly lost my son 3 times and he stoped growing and was born dead at 34weeks but the managed to get him breathing after 7mins. I have lost jobs and have a prescription for morphone due to my pain! Last year my only options were to have a historectomy or have zopocole injections that put me into temp menopause, I had the first injection and would never touch the other or have the historectomy! It mite seem like it's the solution but it will have its own problems and pain to go with it! I was willing to give up having another child to get rid of the pain but I'm glad I didn't! It's a long and hard road an I've tried everything for 10years but eather way you will have pain and side affects! It's not as simple as remove everything and it will stop. Only you know which pain and side effects you can deal with. Really hope you get better and life gets easier xx

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