Do I have endo removed or not?

This year I discovered I had stage 4 Endometriosis. I had 2 chocolate cysts removed and was referred to a specialist. I have also discovered that my bowel is stuck to my womb and ovaries, and have an obliterated pouch of douglas. After having 2 consultations, I still feel confused about what is next. I am in a good position to have an operation as I can have paid time off work, but is this the right thing to do?

The doctor said I should consider 3 things: Pain, fertility and bowel. At the moment I have had 6 months of prostap injections and no significant pain, unlike before I had my op and injections. I don't feel I have true symptoms to go off. Secondly I am not planning on having children for a couple of years, so what's the rush? I just feel that I don't want to leave it there to get worse, but the risks of surgery are serious too. Has anyone been in this situation? How do you decide? There are so many pros and cons to every choice. I'm feeling so lost and confused.

4 Replies

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  • Address it. I've had 2 choc cysts removed and 1 benign cysts. The longer you leave it the worse it will get. It can cause infertility (everyone is different). I'm currently waiting for a date for the bigger op. I have nodules 1inch in diam on my vagina wall, bowels, under the womb, ovaries, tilted uterus and the bowel is stuck to the womb. I might need a stoma if they can't close the bowel after removing the nodules. I have been told they're not cancer though which is good.

    I'm 35 and hoping madly that I can have a family, but the Endo needs to be addressed. The pain will get worse and it'll become even more of a struggle to live with but you know us girls... We soldier on!

  • Hi, I would give you the same advise as ked79, address it sooner rather than later. I know that having such a big op can be really scary and you might be reluctant to consider it now, specially if you are not having symtoms and have no plans right now of trying for a family but endo it is not going to go away on its on and while at the moment you are pain free, prostap is not a long term treatment and other options might help you with the symptoms, but your endo will still be there when you decide to try for a family.

    In my case, I was symptom free and didn't even know I had endo until I came off the pill a year ago to try for a baby, in the space of 12 months I went from nothing to having to take strong painkillers every day and still being in a huge amount of pain. I had surgery 3 weeks ago, 2 large chocolate cysts removed, plus large nodule of my bowel, obliterated pouch of douglas, deep nodules on my abdominal wall, basically most of my pelvic cavity was covered with endo. After the operation the consultant said that there was no way all that happened in a year so while I was on the pill and symptom free, endo was silently getting worse and worse. The operation has been quite successful removing the endo but my chances of having a baby naturally are not great so the doctor advise me to go straight to IVF.

    I do not want to scare you with all this and we are all different so you might have a completely different experience than me. I just want you to be aware that being symtom free does not necessarily mean that your endo is not active and that is not causing damage inside you.

    best of luck with any decision you chose to take x

  • Thank you so much for your replies. I think with all the information I received at my consultation just overwhelmed me, there is so much to think about. After discussing it with my family I have decided to go for the op. I completely agree that it needs to be acted on now, not later. I'm 22 and in the last year of knowing I have had endo it feels like its been holding me back. I know I shouldn't have high expectations of the op but theres that chance it will get better and pain with improve and thats a good enough reason for me!

    Do you feel better after having the endo removed?

    xx

  • Hi EMB, I do feel better, even just days after the lap I was already taking less pain relief than before, even if I just had surgery! I haven't had my period yet but I was having pain daily before the op so there is definetely and improvement. And while it hasn't been nice, the recovery was better than I expected, at the moment I feel quite well, and able to do most things, I still get tired quickly and have some pain if I over do it, but I managed to go to my company Christmas do yesterday and even if I was home early I enjoyed being out and did not struggle at all!

    I think your chances of getting improvement in your symptoms after the op are good ( I think around 80%) the only question mark is how long they will last but I am hopeful and glad I did it. Hope it all goes well for you

    X

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