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Complete hysterectomy & BSO and still having pain Complete hysterectomy & BSO and still having pain

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Unread 05-20-2021, 03:15 PM
Complete hysterectomy & BSO and still having pain

I had 4 surgeries for stage 4 endo between 2015-2020. I have no ovaries, Fallopian tubes, uterus or cervix. I have a constant pressure and Achiness in my left pelvis, side of the bladder area to my pubis. I had a colonoscopy, a cystoscopy to check the bladder, an abdominal cyst with contrast and have had every blood and urine test imaginable. The pain intensifies when I have to go to the bathroom or have gas. And never goes away. My last surgery was last summer. The surgeon was happy to see I had relatively little scar tissue but removed a few adhesions. The past surgeries found: endometriosis on the ovaries, uterus, cervix, peritoneum, and I know they removed at least one tendon in the pelvic floor and found a skeletonized artery. Doctors have nothing for me. Any ideas?
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Unread 05-25-2021, 02:08 PM
Complete hysterectomy & BSO and still having pain

I had my surgery last may, i also had endo, very severe endo and she removed everything you had removed. She couldnt reach one spot of dime sized endo near my bowel but she said it shouldnt cause me any problems. I havent have any pain. My dorctor told me about IC which is a condition of the bladder. She says i have it but my bladder feels fine most of the time. I heard IC can be painful! Has your doctor ruled that out? Was there any endo spots left behind?
Unread 05-25-2021, 03:29 PM
Complete hysterectomy & BSO and still having pain

I had a cystoscopy last week. The urologist said he doesn’t think IC is the issue. My doctor says there’s no way for them to get all the endometriosis so of course it could come back. After he removed everything I went on hormones and the Endo came back because of it. So I went off hormones and basically went through menopause for the last two years. I really don’t want to have a laparoscopy again. I know that’s what he’s going to suggest again. A friend suggested maybe a nerve is the problem that was damaged or is being affected by scar tissue.
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Unread 05-25-2021, 06:35 PM
Complete hysterectomy & BSO and still having pain

I wonder how much endo was left behind and what was the reason that all of it could not be removed. Those are questions I would ask your surgeon. Was it too risky to remove it in certain areas? Its less likely for endo to grow back if ovaries are removed. After all of my endo was removed I felt a lot less pressure on my bladder. I am only 1 year post op so who knows what will happen with mine in the near future.
Unread 05-26-2021, 11:56 AM
Complete hysterectomy & BSO and still having pain

I feel you. I too had a total hysterectomy 12 years ago. Everything out...ovaries, uterus, cervix. I was hoping I would be done with the pain but every now and then...especially when gasy or constipated, Im in pain. Sometimes when I sneeze, I can feel pain too. My doctor tried to get everything out and even had a cancer doctor work with her during surgery to ensure they could detect the pieces of endo that was outside of my uterus. Well, during my surgery they found one of my ovaries stuck by endo to my colon wall. Ever since my surgery I swear when I sneeze I feel a rip! I did not take hormones because I knew that could be an issue with more growth and the surgery didnt seem to affect me much with hot flashes nor some of what comes with menopause. I was happy about that because you hear horrible stories of women going through menopause. I believe there was some endo left ( which was probably inevitable)and definitely scar tissue from multiple D &C's and two major surgeries. I was once told to get on Lupron to try and kill off what was left after surgery but the shots were very expensive and my insurance wasn't the greatest at the time. Through all the years of pain, I guess I have learned to bare and grin it since it doesnt compare to the terrible pain I had been in for so long. I may look into it again but just happy to have many of my previous painful symptoms gone. I cried when I went into surgery, not because I was scared rather I knew I would not been in so much pain again! I hope you start feeling better. Have you thought about alternative medicine? I swear by it! Chinese Herbs helped me a lot! The taste was horrible but I did get relief. Best to you! You are not alone.
Unread 06-24-2021, 07:52 AM
Re: Complete hysterectomy & BSO and still having pain

Just want to second alternative medicine! Complimentary! I found it all so helpful.
Unread 06-26-2021, 10:24 AM
Re: Complete hysterectomy & BSO and still having pain

I think the alternative medicine is a great idea too. Wondering if it might be myofascial pain syndrome? If so, a physical therapist specializing in women's issues might be able to help. Just an idea. I had chronic pain after a major women's surgery in the past, and my doctor had no idea why. But a combination of myofascial release and physical therapy (both done by 1 therapist) was the only thing that gave me my life back. I was pain free for many years after several months of that kind of specialized PT. I had to ask the doc who had done the surgery for the referral to the women's PT. (That was after my myomectomy/D&C/endo excision/ovarian cyst removal 10 years ago. My recent hysterectomy/BSO/endo excision, on the other hand, was only 7 weeks ago, so I'm still healing and can't comment on the aftermath of that specifically yet. But I was in really rough shape after the earlier surgery I'm referring to.)

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