Stage 3-4 Endo, Anyone the same?

Hi,

im new here as came across this whilst browsing online for some sort of support group for endo. So nice to meet you all..

I've been told by my GP that I might have endo last year, and had my first laparoscopy in April this year to confirm it. Unfortunately my Gyne couldnt remove the endo tissues as they found out i have a more severe case of it, and he said it was out of his hands to remove them, and will need a bigger operation if i want to remove it.

I've been given the mini pill after the keyhole surgery, to see if it would help my pains, and so far it seems to work. (I was on the combined pill before surgery for around 5 years, which did not help with the pains or symptoms at all) I've been on the mini pill for just under 2 months now, and i've not had any bad pains like i had before, but still got problems with having to go to the toilet frequently to pass stools... However this i can manage as its not painful bowel movements like it was before.

I just want to ask has anyone else had a similar experience? Like being on the mini pill helped them with the condition? What if i want to start trying for a baby? When should i stop taking the mini pill? (doc has confirmed that the condition i have is going to be hard for me to conceive naturally). Also is there any side effects to taking the mini pill for a long period?

Thanks

4 Replies

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  • Hi I am sorry you find yourself in this situation, it sounds a bit like the doc have just left you to manage alone! I would advise you to find a bsge centre in your area and ask for your gp to refer you there. The endo you have will not go away on its own and yes the pill may help you ad even stop further growth but you need to deal with what is there already. Having said that it is good the gyne didn't do anything he didn't feel capable of! Please see a bsge approves specialist and get a plan in place for dealing with this endo. That way when you are ready to have a baby your body will hopefully also be ready. And it should hopefully help with the pain too.

    Good luck.

  • Thank you for your reply :)

    Atm I don't have painful bowel movements anymore but still go toilet quite frequent, minus the pain. I believe the mini pill helps which is great, but worried that as soon as I stop taking it, it will all come back with a vengeance. Esp when I want to try for a baby, I'm not sure what other steps I can take... that's what the doctor said anyways, to be on the pill till I want a baby...

  • A BSGE centre will be able to remove the endo that the general gyni could not get to and so will put you in a better position for when you are ready to try to conceive. I have stage 4 and had 3 operations with general gyni until they said the same to me nothing further we can do for you just try to have a baby and hope for the best (not exaggerating that was there medical advice) I went back to my GP and asked to be sent to a different specialist and I had read on here about BSGE centres. I was referred and had a further two laps the endo was everywhere bladder bowel diaphragm etc but they got rid of it! I wish I hadn't wasted time with the general gyni now knowing what I do I wish I had asked to be refereed earlier. I know I will need to keep an eye on it and stay on the coil/take the pill to stop it coming back but I could have literally saved myself years of pain if I had just gone to a specialist in the first place. At the very least I feel you should see a nother specialist for a second opinion.

  • Ok, thank you so much for your tips! Sorry to hear that you have stage 4 endo too, I am the same with my bowel ovaries and womb all stuck together, and the lap I had was pretty much useless cos they couldn't remove anything apart from obliviate the pouch of Douglas.

    I will ask my doc to be referred to another gyn to be seen. And will update if I have any news.

    Thanks!

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