Advice needed - I have both endometriosis and polycystic ovary syndrome

Hello Ladies

I was diagnosed with endo from a laparoscopy in 2010, it took me 3 years or so to finally get a laparoscopy, I had been having pain which was becoming unbearable and affecting my job. It wasnt until I ended up in A+E they a doctor tried to touch my abdomen - which was so painful (my pain has always been on the left side) and i described my symptoms thats when he mentioned endo which I never had heard of before.

Both before and after my diagnosis doctors kept saying that the pill stops the growth and I need to go on it- that was my only option that I was given. Since then I have tried various pills but seem to get awful side affects - I was put on the dianatte for 2 years which worked wonders for my acne (pcos) yet I was so depressive and didnt even know it half the time, I was advised to come of it after 2 years and try another then return to the dianette - which I tried, When I came off the dianette I was like a different person - I felt OK to go out and socialise where as before I would have sat at home crying at the thought - my boyfriend urged me not to go back on the dianette - I tried others including cerazette - this made me vomit during the night, so this I had to stop. I spoke to my GP who said to go back on the dianette - stupidly I did but I didnt last long on it - I was bleeding much more than normal and more frequently, I had one of the worst migraines of my life and constantly felt tearful and didnt want to put myself or my bf through this again, so I stopped it.

That was in Sept 2013 and since then I have been advised to have the mirena fitted - however I have read so many horror stories and the fact that my side affects were bad from the pill - im very skeptical.

Since not being on the pill at all - the pain is starting to come back and I dont want to have sex as this causes the most pain now :-(

My Gp advised against the depo injection as this can cause weight gain and due to pcos and my insulin levels - I need to get my weight dowm which I have been working at this past year.

I paid to see a private consultant on Friday who advised me that I should have a MRI, blood tests, oestrogen patch to help my acne (which makes me sad everytime I look in the mirror), mirena fitted during a laparoscopy procedure and investigate the left side further as thats where the pain is. He said if this fails to try the reversible hysterectomy using injections....

I am 26 years old and do not plan to have children but am so worried about all this I dont know where to turn, he quoted me £6000 initally and I cannot afford even the scan which is £800 - however my gp has never offered me this on the nhs and I feel I always hit a barrier. He didnt explain exactly what might show up if anything on the MRI. If I sit back and do nothing I dont want the pain to come back worse and I worry that it might grow or spread?

If anybody would have any advice I would love to hear from you xx

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5 Replies

  • Im on microgynon 30 and have Tried many different pills and also have had the implant. They thought that was causing the pain so they removed it. I had an ovarian cyst and a few months later it disappeared although I don't believe it to have been nothing i then kept fighting and then ended up finally getting the op to see if I had endo which I did on my uterosacral ligaments. The pain was lower abdo but the worst was on the left side my doctor alway pushed to hard while touching and I use to burst into tears because of the pain. I had my op two weeks ago and I'm still in so much pain. I'm still taking micigynon 30. I hope it gets sorted for you xx

  • Thank you for reading through my essay and replying :-). I had also tried microgynon but was told it wasnt helping pcos - to do with the hormones I think. Did you have your endo treated when you had your laparoscopy? xx

  • R u on a strict endo diet? X

  • No not a strict Endo diet - I am doing slimming world and low GI for my poly cystic ovaries- what is the Endo diet? X

  • I have pcos also and my gp put me on Yasmin. It didn't help with my pain much but helped regarding irregular bleeding. I had my first gynae appointment and she was not helpful at all she actually said that the pain was down to me having pcos and what did I expect. The second visit some 3 months later saw a very helpful lady. She told me to stop the pill and put me on prostap injections. I couldn't go for the laparoscopy at that time due to my hubbys treatment for his cancer as the chemotherapy was really affecting him. I explained this to her and hence why we went for injections as I am his full time carer. Had to back in 3 months again and saw yet another lady we told me to stop with the injections and consider the mirena. Come back in 3 months. This time I saw yet another lady who because my hubbys treatment has been changed and his health is a bit better than before decided its time for a look and treat if endo found and also fit mirena. The first pill I was put on was the migrogynon 30 and it made everything worse for me. Each of us are different and the only way to know for sure is try hun. I wish you the best of luck x

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