I'm currently seeing the Pain Management Clinic in Poole who told me about this site (already on the endometriosis forum) so thought I'd join up here too. Great (sort of) to see so many people exchanging information, ideas and rants. I've had endo since I was a teenager and now at 42 have become increasingly despondent over the lack of real effective (and long-term) treatment. Mostly I have had surgeries to laser away the endo, hormonal treatment, etc. and despite removing my uterus and ovaries over ten years ago, I am still in pain - although to be fair I did have about five years of NO PAIN whatsoever which was brilliant.
Similar story for me. Hysterectomy and ovaries removed at age 30 due to endometriosis. 10 years of no pain before prolapse surgery damaged my pudendal nerve. So good to share stories and tips on here.
Welcome to the group 😊. Your story sounds like many on here as Suzanne has already said so hopefully you will get lots of useful information and support (as well as your physios). I too have endo, alongside adenomyosis and IC.
What's the physio for if you don't mind me asking? I have physio for an over tight pelvic floor. Is that what you're having it for
Didn't think I mentioned physio although we've just completed some pelvic strengthening (by 'tucking' the pelvis in) and breathing exercises. I've had other physio for my sciatica but all in all I've been in too much discomfort to do that much!!
I have to admit women's physio was initially painful for the first few sessions but became a lot easier as the sessions went on. She also worked on a tight band of muscle in my pelvis that felt as though my ovary was being held down. The difference was amazing. I'm going back in a few weeks after having a brief break due to tests, appts etc so will get the pelvic floor muscles retested again
I'm trying to get into a hydrotherapy programme but it's not cheap (and the NHS waiting list is ENORMOUS)! I'm hoping it does improve as I'm really sore!
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Any experience of having pulsed radio frequency nerve destruction on the pudendal nerve?
Struggling to manage pain (new network member)
New Member with Upcoming Nerve Block
Argh - what on earth is wrong with me?
