Hello there!
I am making a plea to anyone who has both EDS and endometriosis if they can shed any light on what treatment options there may be...
I have EDS hypermobility type diagnosed 2 years ago, it was picked up on by my gynaecologist who couldn't attribute all my symptoms to my endometriosis and sent me of to see the rheumatologist who confirmed hypermobility.
At first I tried cerazette which is a progesterone based pill and my body seemed to go into shut down and did not enjoy it at all! I have been told by rheumatology to avoid progesterone pills and the mirena coil. I also had a laparoscopy last year which removed some endometriosis and seemed to help.
However last week I was taken into hospital with gynae problems and it now seems my endo has spread to bowel and stomach I am at a loss to know what to do!
Any help or just to know of someone else who has been diagnosed with both would be very comforting.
Ta
Fay
Hello fay...am v much feeling for you...you've been & are going through a lot!
I wish I could be properly helpful, but all I can really do is say: yes! I've been diagnosed with both too:
Yes, I'm globally hypermobility of the ED type. Perhaps you know this assoc already, but if not...here is a helpful link with good archives of info & a forum:
Hypermobility Syndromes Association
hypermobility.org/
The HMSA website provides help and advice across the spectrum of problems ... The Hypermobility Syndromes Association (HMSA)is a UK charity but we are ...
I also have endometriosis, and infant onset systemic lupus, plus a chronic immunodeficiency which predisposes me to infection and is currently being investigated by immunology at the leading UK university hospital where I attend the lupus & Vasculitis clinic.
I'm 61 now, and have mainly coped with my version of endo through prescription mefenamic acid & full on lifestyle management...but a lifetime of persistent recurring UT+Kidney infections has led to complications, so am now about to undergo NHS cystoscopy & dilation with biopsy under general anaesthetic...I suspect my urinary tract & lower GI may well have been affected by endo all these years too. But I've coped and mainly avoided clinical treatment, aside from gastroscopies, colonoscopies & proton pump inhibitors etc
Anyway, I'm glad you posted & I'll be following your replies with interest
Am wishing you all the very best
XO
PS the HealhUnlocked Endometriosis forum here has been v helpful to me