Vestibulodynia and ME/CFS

[fireflymd]

I noticed painful intercourse beginning during the same year I noted my fatigue worsening.

I had post-exertional fatigue for years, and then started noticing days when I was unable to go out shopping, etc. due to fatigue. The year the fatigue began to worsen was the same year I started to notice intercourse becoming painful.

I saw a specialty gynecologist who diagnosed vestibulodynia. BIHRT did not help, and topical estrogen was not effective.

I have read this diagnosis can be related to "fibromyalgia", as well as mast cell issues, low NK cell activity, which also seem related to ME/CFS.

Has anyone else experienced anything similar? I feel this is no "coincidence" that this condition began when my overall health started to really decline.

 

[fireflymd]

Well, I did some research last night (via Google Scholar) and apparently there are elevated cytokines/inflammatory markers with vestibulodynia, and an association with fibromyalgia/autoimmune phenomena. So this kind of makes sense because we know there are elevated cytokines and inflammatory markers with ME/CFS.

I have noted since feeling a bit better that I have much less severe back and neck pain upon awakening in the morning.

So the association is there, just wondering if anyone else noted this problem as well.

 

[Mrs Sowester]

Yes, not me personally, but it has happened to a friend. It started in her first year of ME, she has to be very careful about washing powders and soap. If she gets thrush she has to take the tablets rather than use creams. She had a very miserable few months.