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I initially posted on the post-op board, but a couple of the women suggested I post here.
I'm hoping some of you can share with me what you've done or would do in my situation. I'm 3 months post-op. My surgery was a TAH/RSO (LSO in 95) - vert. incision. They stripped the entire pelvic peritoneum, bladder peritoneum, resected bladder, cut endo off my small and large bowel (and stitched colon back together), did an appendectomy, and a bunch of other stuff. I was in chronic pain for over 2 years before this surgery, my 7th in 7 years.
After the surgical pain started to subside from my TAH, my pain o decreased overall and we decreased the dose of pain meds (I've been on opiods for pain mgmt for a couple of years). We've made great progress and I'm now on about 2/5 the pain meds I was on before surgery. The problem is that we can't titrate down anymore because my pain is too intense. Some of the pain is slightly similar to my pre-surg pain, but most of it is in different locations and feels somewhat different. I get a strong, often burning sensation in the lower left and lower right (sort of runs in a vertical arc). I also have strong midline pain when my bladder is full and severe pain shortly before bowel movements.
I had really hoped for more. I'm not sure the pain is endo pain, although the burning feeling makes me suspicious. (I've followed my dr's orders exactly and taken no HRT yet - waiting to get to the 6 mo. point.) Could this be scar tissue? endo? something else? What would you do? Would you call your surgeon? The doctor who did my surgery was a specialist (does surgery only, not general gyn). I'm sort of between gyns for ongoing care at the moment, as I ended up at a different place for my hyst and know I don't want to go back to my old gyn. Any ideas? Should I just give it time? Should I just accept the pain and be satisfied with what improvement I got? Do you think the surgeon would want to know or could offer anything useful given that he did the surgery?
I really would appreciate your input. I don't know what to do, and I'm afraid about what's going on and what it might mean.
Sorry for rambling. Please share your thoughts. I look forward to hearing them!
((((Anne))))) You sure have been through the ringer for the past few years I'm so sorry having this surgery didn't put an end to it.
You did have a lot of work done during your hyst and the pain you're dealing with right now could be from the healing that is, most likely, still going on. Or it could be something else: only a doctor would have the knowledge to evaluate it all and make the right diagnosis. Even then, with all of the issues you've been dealing with, it might be a question of going through a process of elimination.
Regardless of what you've had done, there is still no reason to just accept the pain: you are entitled to 1) determining what is causing the pain; 2) if possible, removing the cause of the pain; and 3) if removing the pain is not possible, you're at least entitled to pain management.
So, yes, I would call your doctor. Since it seems that the only one you're still dealing with is your surgeon, that's who I'd contact. Or, if that is a possibility, go to a GP who would then be able to refer you to the right specialist.
Bless your heart. If you are at 3 months, and still in significant pain, that cannot be controlled by motrin, I would certainly call the dr. or your g.p. for a referral, or whomever it takes to get medical treatment. You've had a lot of surgery, there are many possibilities for the pain. Adhesions are my guess, but by all means, seek treatment. Never sufffer needlessly. Good luck
Thanks for the support. I went in and saw one of my former gyns today (not my surgeon) - he told me it can take up to one year to fully leave behind the pain from the surgery. And, he also told me that, given I was in chronic daily pain for so long, it's likely I have some neuropathic pain that also might be posing a problem. In short, my nerve circuits are so programmed for pain, they haven't yet realized the painful stimuli are gone. I work with a pain clinic, so I'll check with them, too. But, my gyn said neurontin might help me, but that he didn't want to put me on it until after I started and adjusted to HRT, which will be at least 2 1/2 to 3 months from now (still in the post-surgery hormone free period for my surgery). I'm doing okay on my oxycontin, so I guess I'll just have to hold on and stay on a higher dose for now. Thanks again for your support!