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Monday, November 7, 2016

Surgery #2 - maybe this one will do the trick? #Endometriosis #pelvicpain

So... I'm back on the couch.
I had a hysterectomy along endometriosis excision surgery in December 2015. Recovery didn't go quite like I wanted. I did get immediate relief from some symptoms, but I was also in pain.

I tried pelvic floor physical therapy. I didn't notice any improvement in my pain. I learned that I don't have constantly tight muscles. I am capable of relaxing and tensing. I learned my core strength could be better. She worked on breaking up scar tissue from the surgery. Two sessions a month for six months, and I didn't notice any improvement.

Physical therapy was incredibly triggering. I felt low and sad and discouraged - partially because I was still in pain, partially because I kept being reminded of all the hell I'd been through. I started having nightmares and sleepless nights again. I felt anxious and unsafe. I felt despair like I hadn't felt in a long time.

I was still doing things I love - some fishing, spending time with Todd's kids and grandkids, spending time with my siblings and my niece and nephew, spending time outside with the horses, going camping and on other adventures with Todd, but still... it's hard to enjoy life when you're in constant pain.

I tried injections - steroid injections into the vaginal wall near my bladder where all my pain was coming from. Twice. It was painful and upsetting, and it didn't help.

When nothing else worked, the surgeon decided to go back and do another laproscopic surgery.
Four small incisions. An abdomen full of carbon dioxide (so they can look around inside). He found a lot of scar tissue. Adhesions that had fused my bowels to the vaginal wall and bladder. He told Todd he was positive he had found the source of my pain.

That was last week. (It will be a week tomorrow.)
I'm still in pain. Incisions hurt and inside hurts and I'm tired and just want to sleep, but I'm also SO SICK of being on the couch.

Sitting on the couch has given me a chance to think and read and now write.
Consider this my quick update that is boring to read... but if you're dealing with endo or adhesions, here's my advice:

Check out the Center for Endometriosis Care online. Find a doctor that specializes in endometriosis. My doctor was Jeff Arrington in Ogden, Utah. Since I'm in Utah, it was very convenient to have him only a few hours away.
Check out Nancy's Endometriosis Nook on Facebook. They have spent a lot of time researching and vetting doctors who are compassionate and knowledgeable.
Don't give up. Don't stop fighting for your own care. It's taken me years to get a diagnosis, and then another two years to get the two different surgeries.

I'm not pain free yet, but I hope to be very VERY soon.

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