Chronic inflammation not endo

Hi! I new here but am struggling to deal with the new diagnosis and needed somewhere to rant and people to talk to, hope that's okay!

I apparently ot diagnosed with endo last year (I've had gynae ops since I was 9 as had ovary removed due to cyst) but found an endo specialist as my gynae wast taking anything I said seriously (I'm 23) and kept telling me to take provera to help the pain and that it would help with the pain eventually I just had to give it time. When you're in constant pain waiting for months isn't what you want to hear! Anyway me and my mum did our research and found a specialist who does this pioneering surgery to remove all endo. He did a diagnostic op were he took 3 biopsies to analys which came back at inflammation rather endo, which he has Said there is no treatment for. He has said he be happy to do another laparoscopy in 18 months as the inflammation could turn into endo. I was wondering if anyone else has been diagnosed with this and what has helped them? I'm stuck in bed with the pain most days and have had to stop my nursing degree as I was missing too much so am pretty low at the moment.

Sorry for rambling on x

5 Replies

  • Hi, I'm sorry sorry I don't really have anything to say other than I'm so sorry for all your pain. It's awful and frustrating to battle with all this. All I will say is stay strong, and remember how brave you are. X

  • I imagine anti inflammotries might help if it's inflamation but there is only so much of these one can take too. Inflamation is a big part of Endo as in raised CA125 which is a measure of inflamation seen in both Endo and ovarian cancer. Hope this helps.

  • Hi, I had raised CA125 of 90 when I had an endometrial mass 10 years ago and have just had another test which came back as in the normal range - 24. They say this is normal but as I had a total hysterectomy 8 years ago I wonder, I no longer have a womb, tubes or ovaries so cannot have PID, fibroids etc and thought perhaps the result would have been in single figures because of this. I have discomfort and heaviness in my left side which I fear could be endo related.

  • Much more likely it is a build up of adhesions or scar tissue Which could either have been triggered by endo (old or current) but is more likely to be the by-product of the surgery scars to remove everything. In some people it can become necessary to have surgery to cut back adhesions- but quite honestly each surgey just encourages more of the wretched adhesions to form so this is not a solution - just a temporary fix.

    If any endo was left behnd, and you are taking HRT then that is enough in the way of hormones to keep that endo active....and it will cause irritations when it bleeds and those irritations on other tissue that the blood lands on can develop adhesions to protect itself from further damage in the future.

    It can get painful- if it does and it gets beyond the help of regular pain killers then it is worth considering requesting your GP refer you to the hosp for a discussion on what youwant to have done to the adhesions, but on the whole there is nothing much can be done except put up with it.

    It may be that a specilist exercises program may help gently stretch the adhesions so they are not sticking things quite so tightly together and there are various homeopathic ideas for tackling adhesions. I haven't really looked in to any of them enough to comment on how effective they may be, but it is a common issue for anyone male or female to be plagued with post op adhesion issues in the tummy region specifically.

    If you do think it is the endo- then a quick trial of stopping HRT for a few weeks to see if that eases off the pains will be a good indicator as to whether the endo is active from taking HRT in which case surgery to remove the last active bits of endo might be worth considering. It is certainly not a good idea to stay off HRT when you have lost both ovaris, but a trial run shouldn't do your body any long term harm.

  • By endo is that endometriosis? ?? Because I don't know what is meant?

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