Very frustrated and at a loss

[happyg82]

Hi,

I have been diagnosed with endometriosis and PCOS, I had the coil fitted last July, but it wasn't working for me, so in December I saw my gyne consultant and he strongly advised that I have prostrap injections, I was not keen on having them,but he talked me into having them. In Jan I started a 3 month course of the injections. At first I didnt find they helped much, I was still in pain and bleeding. About 2 months in my periods stopped, with a few random days spotting here and there, but I was still in pain. My GP prescribed dihydrocodine as my regular co-coda mol wasn't enough. I finished the course of injections in March and now feel the pain is getting worse. My GP reckoned it was just my ovaries 'reawakening' so I was put back on tramadol and given zopiclone to help me sleep.

Saw my consultant on Wednesday and after a brief 2 min rundown of the past 6 months from me (he answered his personal mobile mid way through me talking), he decided that my pain can't be hormonal as the prostrap would have stopped the pain, in his words. He said it is probably muscular or nerve pain. Which I don't understand as he done my laparoscopy and found the endometriosis.

I now have to wait until August to be seen by the pain management team. I also have to go to a big occupational health appointment at work next month, to see if I can basically still do my job.

What's other people's experience with prostrap? I just feel that the consultant has 'fobbed' off again. There was no mention of pain management in my last consultation. Feel like I am taking 1 step forward and 10 backwards. Thankfully I have an amazing fiancée who is very supportive. She is an absolute star and my rock.

Has anyone else been told the pain is nerve or muscular?

I am seeing my GP on Monday and I am going to ask for a second opinion.

Apologies for once again writing war and peace. Just writing it all has helped ease some of the frustration.

Sarah

[happyg82]

I had a laproscopy last March and it was found and treated then.

[happyg82]

Lindle,

Thank you so much for replying to my post. You have massively reassured me that I am not going crazy and that this new treatment plan clearly not right for me.

The endo was found when I had my lap last march and was burned away. The more I have read from your page, the more I realise what I don't actually know about my own condition. I have never actually been told what stage endo I have.

I am going to sit and read a lot this weekend and go to my GP on Monday armed with a list of questions and demand a second opinion from the correct specialist.

Thank you again

Sarah

[applebird]

Hi,

I think 3 months is a pretty short course of injections. I was on 4 the first time, 6 the second. My pain/bleeding didn't go away completely either so you aren't going mad! Agree with Lindle above that nerve damage/adhesions can cause a lot of pain - her advice is ace. The only other thing is I have concurrent adenomyosis which may have been causing some pain for me through prostap so I'd read up on that too especially if you have leg pain. I've definitely found my treatment to be better since having an endo specialist.

I hope you get sorted and the oc goes okay x