This is both a rant and a question, so I apologise in advance.
I am 22 and have been diagnosed with endo for just over two years, suffered with it for three. First diagnostic lap was around this time two years ago, and they didn't remove anything claiming it was too risky. Cue zoladex, no HRT. Total failure. I then went on several different types of progesterone only pill, eliminated all soy from my diet and tried every painkiller under the sun, still in daily agony. I fought, even seeking a very expensive private second opinion, and got my third surgery, endometrial excision by a specialist and agreed to have the coil fitted.
Now I was initially told post surgery I got the all clear and they got everything, excising the most active patch and but I g it for good measure, and cauterising the rest off. However the next morning I saw his understudy person and she said I had endometriosis on my bowel and bladder and may need further surgery with a gynae and bowel specialist and there's a risk of a temporary stoma bag. Understandably I was distraught. However upon attending my next gynae appointment there was no record of what my surgeons understudy had told me in the notes nor in the photos taken via laparoscopy. Has anyone ever had this and what the feck do I do? It's been fourish months since I have had my coil fitted. I had a two month super light period coming off the pill and now spot almost daily. My pain has slowly been increasing, which is torture after being almost pain free for a couple of months. Is this because some pieces were left and othe burn off which means they can regrow? I just don't know what to do, I was told try the coil for six months which is fine, but what options do I have after that has failed? I don't want an oophorectomy, I don't know if I'll get another surgery and even the heavy duty hormone treatments failed. What can I do and where can I go with this?