3 operations last one very invasive bowel surgery. Now after 8 months pain is back YET AGAIN. I've

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So I was diagnosed with endo for 4yrs ago (finally).... I've had 3 operations, last one was end of jan this yr. Had very bad endo of the bowel and my bowel had attached it's self to the surrounding wall, totally changing the shape of my bowel so going to the loo was like i can only describe as GIVING BIRTH !!!! Such pain. I had a wonderful surgical team and luckily came out stoma free (i had a high risk of having a stoma bag as my bowel was so messed up) my recovery was quick and the nurse couldn't believe how mobile i was after a week she said i had one of the most invasive procedures done. I was pain free for roughly 4 month's..... lovely i thought, i'm finally cured i thought ......... then i began to get slight pain again, possibly scarring? So was put on the pill...... but each month seems to be getting worse and getting pains when not on my cycle again.

It surely couldn't have grown back so god dam quickly. I'm not sure i can go through with another op......Im so scared and I'm becoming depressed again with it all ive had enough. Has anybody else had endo of the bowel and had anything similar.

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  • Posted

    Hi. I had extensive endo that fused ovaries, bowel,bladder and womb together and I was advised to have womb and ovaries out to stop its growth from having estrogen. Whole set of menopause probs as still young but no endo pain. There must be a reason why not saying same or your endo more invasive than mine. It hadn't perforated bowel yet. Have you been offered inplant like zoladex to temporarily halt estrogen to see if it helps? I wish you all the best as I remember the pain all so well. Exactly like giving birth at times!!
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    • Posted

      Hiya. I've honestly not gone back to the doc's yet. I must. I've been put on the NORIDAY pill which they say is the best form to control it?. I was asked a few yrs ago if i was planning on anymore children because a hysterectomy could be an option (later on) . I am now 33 and defo no plans of more kiddies . So maybe this would be an option. I can't go through pains like this again. X
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    • Posted

      It could well be your age that stops them as it's the ovary removal that does the job and they won't do normally til late 30s at very earliest due to necessity of estrogen for health though I have spoken to people on here who were your age when done so someone maybe able to advise you better. I'm older (40) and kids teenagers. I've not heard of noriday pill. Keeping fingers crossed that it does help you
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    • Posted

      I know i think it's my age...... but with my background maybe they would consider??? Im at the end of of teather and quite honestly would do anything to have a normal life. Endometriosis is a crippling disease and unless you've been through it people don't get it!!!! X

      Thank you for your comments x

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    • Posted

      You're welcome. I have to admit that although it comes with different problems it's lovely with no pain or periods. Hopefully you have good consultant but don't be afraid to ask for a specialist. I was really lucky as surgeon was endo specialist for uj
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  • Posted

    The way you said it's like giving birth (wow) I have said to my husband a multiple times its like contractions but then thought am I just over exaggerating. Nice to know I'm not on my own with it all.

    At the beginning of my journey with first op in 3 weeks.

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    • Posted

      Definitely not alone although it makes you feel like you're the only one going through it!!!! Without being too graphic (lol) it was to a point i had to sit there and pant . The pain was so intense i sometimes couldn't breath. I can't go there again.......

      Good luck with your op..... is it bowel surgery your having or are they investigating?

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    • Posted

      I feel for you :-(

      Mainly investigating as they are unsure what to expect and where but they said they will remove as much endo as possible. I also have a blocked tube that they may remove.

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