February 2025
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Elective Surgery

My pain continues to get worse and every thing we are trying to do to improve it is only helping in so far as my completely sedentary lifestyle is tolerable – not pain free, but tolerable. As long as I don’t sit or stand too much, I can function. But I can’t eat out, or go to concerts. I can’t drive. I can only work because my job is letting me work from a recliner and my income is enough to let me take Lyfts to work (which is making finances very tight).

Because I have a history of endometriosis and the pain I’m experiencing is like cramping, I’m considering having yet another surgery. The trouble is, we have no idea what they will find. Endometriosis can’t be seen in any kind of scan. I’ve had one surgery where they didn’t find any.

My pain is so hard to manage that my recovery time is predicted to be very long. In the past I needed far less medication to keep me going. This is due to an overstimulated nervous system according to my pain specialist. So we are worried about post surgery pain management, but she says it’s doable.

But there is hope, or otherwise I wouldn’t be considering this. There are doctors who think they have a new understanding of endometriosis. They remove tissues that didn’t used to be considered endometriosis. They use a technique called excision surgery. They see a strong correlation between adenomyosis and endometriosis and pelvic pain.

I am now visiting with each of the surgeons in my area that does this. I’m lucky that there are 3 to choose from. The first suggested a hysterectomy, and had a really cogent reason for suggesting it. (Please please, no hysterectomy stories or opinions. I’ve spent hours researching this and reading all the opinions out there.)

If this surgery works, it could be my last one. I might recover and live a life I never knew was possible. I might be able to leave chemically induced menopause behind. I might be active and healthy.

But there are many risks. And not everyone is convinced this will work. I keep being cautioned that it might not. So far only one doctor is convinced I’ll be better off and she’s the surgeon that suggested this approach.

I’m, as usual, frustrated that there is no way to know if there is anything to find. I’m frustrated that this disease is only diagnosed by surgery. But that’s where I’m at.

So two months of interviewing doctors (due to their schedules), and then I’ll schedule the surgery. Interviewing surgeons is a new experience for me, but it’s important for a rare surgery to choose your surgeon carefully.

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