Advice

Hi to you all, I've been reading some of your posts and my heart goes out to you all but I'm hoping you might be able to help me with some advice. I have been diagnosed with sever endo which has also grown into my bowl and on my stomach. I'm planned to have surgery after 3 months of menopause injections to have it removed and possibly the part of my bowl its grown in. First question am I likely to really suffer with the injections such as hot flushes mood swings that sort of thing? I was just wondering if anybody else had experience of that? My second question is am I just prolonging things by not having a full hysterectomy? I'm worried that even going through all this I will just end up there in the end. Any advice is greatly received. Thank you.

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  • Hi, it's a mind field isn't it trying to decide what to do for the best for now and for the future. I guess it's good to be as educated as you can be about treatment options and then decide what fits best with your life.

    I have had surgery and injections, I don't want to go down the hysterectomy route myself right now but it's been offered to me as a treatment option on various occasions.

    I had a burst ovarian cyst that went septic and had emergency surgery last week, the surgeons asked me to give consent to do what they needed to save my life after seeing the cat scan. I told them no hysterectomy and not to remove my right ovary. They drained the blood treated the septic stuff and I'm having the injection for 6 months and then another cat scan. But they didn't remove any organs.

    Other people might have made a different choice from me. Don't forget you can lead and guide your treatment and work with the professionals rather than just doing what they tell ya Hun. I hope that helps!? Good luck.

  • I've had the injections twice, once with HRT add back (livial) and once without. If you're having them without then yes, you are likely to have hot flushes and some other side effects, but TBH I didn't find it unmanageable and it was better than the bleeding and pain. It helps to go in to it with a positive mindset if you can.

    I've also had a hysterectomy and had endometriosis shaved off my bowel. First off, the hysterectomy part (removal of uterus) will only help if you have adenomyosis. I also had my ovaries and tubes removed (this is a BSO) as evidence shows that having your ovaries removed with the hyst reduces the chance of the disease returning. However, this puts you instantly into an irreversible surgical menopause which has long term detrimental impact on your health. There were various reasons why I had the hysterectomy - I already had children and definitely didn't want more (husband had already had a vasectomy, and the endo had damaged my fallopian tubes, so I was most likely infertile and even if I had wanted more children, the realistic chance of getting pregnant was very small). I had adenomyosis. I had extensive bowel disease, and rectovaginal endometriosis, and my consultant advised that if I just had this excised, the scarring would stick my uterus and bowel back together making a hysterectomy inadvisable if I needed one at a later date because of the risk of permanent damage to the bowel if it was operated on again. None of the drug treatments had worked, and I had experienced pain and bleeding on absolutely everything. I had reached a point where I could just about manage to take my kids to school and that was it. The bleeding was so heavy I frequently had accidents, I was struggling to cope with the level of pain I was experiencing and it was making me frightened and anxious, and my consultant basically said the only reason not to have it would be if I wanted more children. I think if you're ready you know because you're sure. However, I would not have considered it if I hadn't been absolutely at the end of my ability to cope because it is a horrible surgery and although being menopausal at 39 is better than the state I was in beforehand, it's still hard.

    Hope this helps. x.

  • It's very 50/50 with the side effects of the injections. I've just had my third and I feel amazing. It's changed my life. No pain. Hormones are back to normal. Life is amazing. And the bonus is I haven't had any hot flushes yet or mood swings.

    I also take hrt which I highly

    Recommend as I do sometimes feel different when I have forgotten to take it.

    Depending on how old you are I believe it's hard to get them to let you have a hysterectomy. I've been asking for one but I'm

    26 and they flat out say no....

    I'm interested to see what my options are after the injection being so successful.

    Good luck with them if you decide to have them.

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