Very frustrated and at a loss


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.


5 Replies

  • Hi - before addressing the prostap can you advise how your endo was diagnosed and was anything done surgically or just hormone meds?

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

  • Hi - it all depends on what is meant by 'treated'. This consultant sounds pretty uninterested and is likely to be a general obstetrician and not a specialist in endo. It is very common for endo to be either missed altogetrher in some places or treated by ablation which burns the surface but will only 'remove' the mildest of endo. This is the start of your journey and as you are still in pain you will need thorough treatment by an endo specialist. It really saddens me how so many consultants are still doing this - a diagnostic lap, what has probably been inadequate treatment, putting you on these jabs then washing their hands of you and condemning you to a life on pain killers as the disease progresses. The reason they give prostap is that it depletes your system of oestrogen so the theory is that if your pain goes away it proves it is endo because endo is fed by oestrogen. But endo involves much more that inflammatory implants. There will usually be adhesions and these can build to the point that they stick structures together and pull which can cause severe pain. Endo can grow over nerves that can cause severe pain. This pain can be felt all the time not just with periods and can't be helped by prostap as it is not caused by oestrogen.

    It is long enough since your lap to know that this isn't healing pain and I suggest you ask for a referral to a specialist centre. Click on my name and have a look at my first post on endo and the one on Pouch of Douglas endo to see what you identify with, and the one on finding a specialist. Click all the links at the bottom as to your rights if you live in England. Learn as much as you can about endo so that you can now take charge of your treatment path. x

  • 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 :)

  • 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

You may also like...