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6 years, still in pain 6 years, still in pain

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Unread 10-31-2020, 07:40 AM
6 years, still in pain

My original surgery was June 2014. I had 3 more emergency surgeries after due to vaginal cuff being torn. The last one was Oct 2014 and my wound had opened, my colon was attached to my wound and I had free air in my abdominal cavity. It took me 9 months to recover from that. I had infections, including CDIFF for months following the surgeries.

I have had intermittent abdominal and pelvic pain since then. This flare up I’m going through now has been 5 weeks and no DR can tell me why I am in pain. It feels like my organs are so heavy in pelvis. I went to the ER on Wednesday because it got so bad I couldn’t walk. They found nothing. Went to see my gyno yesterday and she has no answers for my pain other than scar tissue maybe from all the surgeries. She advised me to see a GI dr.

Anyone still have significant pain years after surgery? I feel like drs don’t take me seriously and it’s getting very overwhelming.
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Unread 11-30-2020, 01:06 PM
Re: 6 years, still in pain

I am so sorry that you are going through this. I, too, had complications from my hysterectomy and CDIFF afterwards. I wouldn't wish CDIFF on my worst enemy!

I have been in the same boat, ongoing pain with no firm diagnosis. My docs seem to lean towards either adhesions (scar tissue) or nerve damage, but neither one is really provable without surgery...and I am sure not signing up for that! My suggestion is to see a pain doctor; I am convinced that mine saved my sanity.

After 9 years on meds, I have now been off all pain meds for over a year (not all solutions work indefinitely). But while the meds were working for me, they did give me a quality of life that I could not otherwise have achieved. I do still have pain, but it is no worse than it ended up being with the meds. I have also found a heating pad and physical therapy to be helpful.

I hope you find some solutions out there. Don't give up! You deserve a decent quality of life.
Unread 12-31-2020, 08:16 PM
Re: 6 years, still in pain

hi. I just started pelvic floor physical therapy and I am shocked at how much it is helping my pain. I literally feel like my organs hurt sometimes. At first, I thought it was scar tissue or UTIs. Turns out some of my issues are b/c of me clenching my pelvic floor muscles too much and they have huge knots in the muscle. I felt some relief after first visit and I hope it continues.
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Unread 01-13-2021, 11:47 AM
Re: 6 years, still in pain

I, too, am in PT (for the 2nd time bec 1st time they were doing opposite of what i needed!) because knots in the muscles. Prior to this, I have had so many procedures done which either didn't work or didn't work for long. Latest was bladder instillation which made me 100x worse followed by Amitriptyline (same result, worse than previous feeling of pain). They kept thinking UTIs too.
I hope you can all find relief and get back to being healthy as soon as possible. I am so grateful for this site! Thank you.
Unread 03-02-2021, 10:36 PM
Re: 6 years, still in pain

That is just too much suffering! Sorry you endured such long term problems. This may sound strange, but have you had your back/spine checked. I had a horrible feeling of fullness and upper abdomen was painful to even touch after hyst in 2001-trouble breathing, too. In 2013 a nurse friend told me i had a paralyzed diaphragm. A chiropractor pulled on the spinal nerves and that caused me breathe so much better, and pain was reduced significantly...I met a young woman 2 years ago who had exactly the same problem...after having a hyst....Just a thought. I pray you get pain free!

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