Pain after a year post op

Hi everyone,

In Jan 2009 I had a TAH and then due to runaway ovarian cysts and continuing pain from endo that I'd battled with everything under the sun had me back in the OR in May 2009 for an OOF...followed by emergency surgery for a bowel obstruction...followed by surgery to remove dead tissue from an open incision not healing and becoming massively infected in July 2009...followed by another bowel obstruction surgery in Feb 2010...

Anyway, I'm on Vivelle Dot estrogen only HRT but I'm learning that endo can keep living on when you take estrogen. I'm 39, experiencing breast pain (had a check up and all is well but it's probably the estrogen causing that, although it just started up about a month ago after a year of HRT). I don't need Progesterone (can't take it anyway due to stroke-like migraines) since I have no uterus and no ANYTHING related to female reproductive organs. I've also had my appendix removed.

So...after all that background...I'm sad to say that I'm still having pelvic pain. I've had check ups and "nothing is wrong." But I have pain nearly every day all day -- I've given up on all pain killers. Advil and the whole NSAid family gives me gastric bleeding thanks to YEARS of taking them during my periods. And narcotics? No thanks. Too many years of those during the worse part of my period got me labeled as a "drug seeker" -- I was actually a pain RELIEF seeker and only wanted the medicine for the worst 2-3 days of the month.

I have pain after intercourse. I have pain if my bladder gets slightly full (ab pain, not UTI pain) but nothing is wrong there either after several tests. I have no signs of anything else wrong with my bowel -- the last surgeon did an exploratory to see if there were other adhesions.

So...wow. Go figure. After having pain since my period started at 13...to STILL have pain after all the surgery, all the recovery periods...what can be done? I've tried the "acceptance" route but some days the pain is just so depressing, all I can do is curl up. Yes, I'm on antidepressants and have been on them for years.

So what now? Anyone relate to this? I hate that my husband and I have sex MAYBE once a month. As expected, knowing that I'm going to have increased pain after intercourse doesn't exactly have me looking forward to it even though it hurts me that what had been a fairly healthy sex life a year and a half ago even though I had pain then too...I have just lost ALL interest.

I HATE no being able to expect to have more than a day or two of feeling ok pain wise to having terrible pain that keeps me home for days for no reason that anyone can come up with. And since I've had EVERYTHING removed...I'm now starting to look like a lunatic (starting...as if I didn't get labeled that before the surgeries).

I have a therapist, I have a psychiatrist...I have the mental health support. But I'm losing the battle on this. Yes, I read the chronic pain article in this month's newsletter but it's a bit hard to just "accept" when so much has been lost for me for so long. I have a PhD yet I can't handle a partial week's work...and now that my husband just got laid off...we're in trouble without my being able to hold down a job.

So, yes, I am depressed. I want this pain to stop. But what can be done? "Accepting" pain is a great theory but in practice...

Sigh.

vrgrrl,

I am so sorry you still dealing with so much.

I had my lavh/bso due to stage IV endo. Just curious, was your an endometriosis specialist? It might be worth seeking one out since you are still having so many issues. Endo is a very tricky and unrelenting disease.

I truly hope you will continue to seek answers and not suffer. Please let us know what you find out.

Hi,

Thanks for your reply! Yes, my doc was an endo specialist but I can't afford to see him or any other specialist, as I am currently without insurance since I can't work and my husband is out of work thanks to budget cut backs at the University he was an assistant professor at. So...neither of us have insurance at the moment...just to add more drama to the story.

Oh grrrl. This is so difficult to deal with, I wouldn't wish it on anybody, ever. It's almost a year and a half for me and I still have pain. And discharge. No one knows exactly why. It's been the most difficult time of my life, for sure. I finally went to a well-known cancer center, thinking maybe they had seen cases like mine and would have some answers or suggestions. I had radiation as well, so that seems to have played a big part in my pain. The doctors tested me thoroughly and then told me it's unfortunate but some women just get chronic pain after radiation. I would imagine the same is true for hyst. only.

But my hope for you is that you won't give up. Yes, there is some accepting that must be done; we can't live in burning resentment and self-pity all the time. After I got home from the cancer center I felt my usual painy self, but about a month later, the pain began to subside. It went from severe to moderate to not very much at all. I had several weeks where I could be much more active; I even went to a music thing and danced....twice. lol it WAS a big deal.

I had a wonderful pain teacher who taught that you have to keep moving between acceptance and denial....because if you get stuck in either it's not good. If all you do is accept then you may not fight to get if fixed, and if you live in denial, you'll overdo it and also not get it fixed. So keep moving between the two. There are lots of times when I have to relax and use acceptance as a coping mechanism. Other times I'm all over research and doctors and all of it.

After all the joy of the past few weeks, yesterday I had a bit of a relapse; back to fairly severe pain. But I think it's not going to last as long; I've been through this many times. I've gone from having to spend so much time in bed to being able to mow the grass and do five things a day instead of just two. I have to accept these "two steps forward, one step back" times.

Oh and by the way, I take pain meds when I need them. I don't care what anyone (except my doctor) says, I know I'm not using them except for what they're intended for, and I feel no guilt. I take them as prescribed, exactly. I too have had my upper stomach blow out from nsaids. No more. If the medication helps me to function and to be in less agony, I will take it. If, God forbid, if I did develop some kind of addiction, I would deal with it then. But so far, nothing like that has happened.

I know of at least one hyster sister who did get help with more endo plus scar tissue, and her pelvic pain resolved. Maybe at this point since neither you nor your husband are working you could qualify for some kind of help. In my town the hospital has an indigency program you can apply for, which helps people get treatment.

You've had a lot of surgeries. Maybe your body needs a lot of time to recover from all that trauma. Hold on to the hope that it will recover, though, and hopefully you'll find a way to see the right specialist. I'll be thinking of you and hoping for several miracles! Please let us how you're doing (and/or feel free to pm me).