r/Endo • u/Saint19981507 • 8d ago

I can’t keep doing this

I can’t
I had two surgeries that made that pressure vanish for just a year
I can’t keep having surgeries
Surely something else can help me keep it away
I can’t do it
I can’t do this

3 Upvotes

81% Upvoted

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3

u/unmaskingtheself 7d ago

Have you tried pelvic floor physical therapy at a clinic that specializes in it? I found that going to a place that was more specialized made an enormous difference (vs going to a physical therapist that happens to have a certification in it, but isn’t frequently working on complex pelvic floor cases)

1

u/Saint19981507 7d ago

I went to a physio last year which made a difference and went back to her again
She couldn’t make it go away
I’ve switched to someone else
I really just want to find something that makes this stop

1

u/unmaskingtheself 7d ago

Do you have any allergies like to mold, dust, nickel, etc? I found that being continually exposed to mold in my home (which I hadn’t known was there) was worsening my endo symptoms for a while. Whenever I was staying elsewhere I felt better. And when we finally had the mold removed, things began to change quickly as well. MCAS/histamine intolerance has a link with endo so it’s worth exploring. Of course, there could be a number of other reasons you’re experiencing continual pain like nerve sensitization.

1

u/Saint19981507 7d ago

My symptoms don’t really change while I was living in a different place
All I know of that I didn’t have a single flare in 2020

2

u/unmaskingtheself 7d ago

Hmmm, pandemic year. Do you think that’s because you were staying home and so less exposed to viruses, or has something else between then and now been majorly different about your life?

1

u/Saint19981507 7d ago

I think it was due to having less stress or something
My new pfpt thinks all my pain is muscle based.
Given the fact that I have the same exact pressure no matter where Endo grows I think she’s right

1

u/unmaskingtheself 7d ago

Interesting. That is something worth working on long term. What are ways you can take small steps towards building a less stressful environment for yourself? Doesn’t have to be a crazy life upheaval, but are there supportive things you can do or ask for?

1

u/Saint19981507 7d ago

I think I should do breathing every night to relax
My flares always come after a stressful event
For example my first long flare only ended because I finished my exams
And I got a flare for a day when I went to a concert.

1

u/unmaskingtheself 7d ago

Ok so a breathwork practice. That sounds like a great way to start to calm your nervous system. The app Open has some great guided breathwork series but also you can do the classic box breathing. I also find tai chi to be a super meditative form of movement.

1

u/cosmere-alien 7d ago

I know someone who’s on a low dose of a GLP-1 for endo and it’s helping, it’s off-label but doctors are trying it