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Pelvic Pain Support Network
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6 months post hysterectomy still in extreme pain

Here i am 6 months out of robotic surgery which was supposed to be 3 week recovery and in hell! I spend most days laying down as every movement hurts countless drs, tests and test and blood draws. I have nerve pain burning tingling up my sternum, cramps so severe like period cramps, muscle spasms from my pelvic under my breasts, this urge to push. Been diagnosed with pelvic floor been to pt and botox shots not helping told i have nerve damage nerve blocks dont help nerve pain meds just take the edge off and i have this horrible modeled look on my stomach. I was told 3 weeks i would feel great no informed consent. I was screaming in recovery and told my ob something was wrong i knew instantly. The next day gabapentin was given to me in hospital when asked my dr she stated its prevention i give to all my patients ...what ever! If i had known i would have kept my periods at least i could control with ibuprofen. Its a night mare. No dr can tell me why my stomach looks as it does. Im reaching out as im struggling so much. If anyone has a clue i would appreciate so much! I am attaching pics of my stomch forgive me its not for the faint i think i was burned by the robot drs say it looks like heat burn but i dont use a heat pad so i started thinking i was burned inside? I feel like they are protecting the robot and just ignoring whats so obvious. One pain dr wants to put a nerve stimulator in back? No way! I stand firm i truly believe i was injured but having trouble proving cuz drsxlove the minimally invasive.. oh if i could turn back time.

Thank you all! Its a great community

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This post made me feel sick Are there no good surgeons practicing anymore? Ive had pelvic floor surgery which has left me with nerve pain in the vulva I had no mesh which was one good thing but he has either sutured a nerve or burnt it when my scar was cauterised I have had excruciating pain and been taking Gabapentin for 2 years Now I have discovered that I have osteoporosis in my Lumbar Spine. So. Always check the side effects of medication before taking At the time I wanted something to remove the awful stinging and burning pain and was grateful for it.

I can understand how you feel Hope the Gabapentin helps you

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Im sorry it made you feel sick! I wish i could take this surgery back im left to suffer every minute every day. I cry. I just want my life back before she turned it upside down. So many drs. I just dont know how im supppose to function like this? I can only hope it improves but just seems to be getting worse cuz they are not finding the root cause only medicine to cover it up. I just keep hoping and searching for a dr to help me. Its so frustrating! Im sorry you are suffering too!

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Hi, may I ask what type of surgery or hysterectomy did you have?---partial, full, etc.

I had a partial hysterectomy in 2014 and kept waiting forever to heal. It only progressed to increased pain. And, it only got worse. That's why I asked about your surgery. If we have a lot in common, I'll fill in some more of mine tomorrow, I hope. But, I wanted to see if we are similar in what we had done. . Then, we will compare notes. God bless you I certainly know about the pain. I was left with 2 chronic pain issues.

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Hi DeCleary1953

I had a da vinci robotic surgery. It was done through laporacopy.

I had my uterus and tubes removed but kept my ovaries. I cant do anything pain free. Get dressed, shower, walk , sit in car even laying down hurts. Im in hell. Pain meds have started to make me sick, so now im stuck.

Thnk u for responding and I am sorry you too are suffering. I cry a lot.

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I guess this is where they cut below the navel to insert camera? Then, on lower left and right sides are cut as well. I had a fibroid that had grown to the size of an orange. It was on the outside of the uterus and sitting became almost nonexistent. It grew very quickly whereas I was told they generally shrink in menopause. Nope, mine took the other road. The nightmare journey began. I have a huge notebook full of pretty much everything that happened. But, there's more to add. Unfortunately, doctors are not in tune with pelvic pain. My other pain issue is the leg/foot pain that travels into the pelvic region. The stinging is horrific. The Mayo Clinic said two separate issues. My journey is long and sad, I'm sure like everyone else's. Ask me anything if you want. I'm almost 66 and beyond any embarrassing questions!!

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Ditto. I had a myomectomy to remove a grapefruit size fibroid on the outside of my uterus, so that I could have a baby. It has been 9 years. I totally lost my life. I am sure our diary tells a very similar journey of pain, dashed hopes, and despair. I bought a new car in 2010 the week before the surgery that disabled me. I have driven it once. I cannot sit, or press the brake. I seriously wonder why these stories of pain and disability only emerged in the last 15 years. What is going on. My grandmother who is 107 years old and pretty much healthier than any of us on this forum, says that in all her years she has never seen anything like this happening until the 2000’s. I must wonder what is happening in our newer surgical world. It is heart breaking.

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I am 14 months post hysterectomy and suffer agonising pain every day I too wish I could turn the clock back. I have horrendous rectal lower back and pelvic pain made worse when needing a bowel movement a recent defecating proctogram has shown my upper rectum folds over when defecating but they also think scar tissue is involved. I spend most of my day lay down to try and ease the pain

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Hi Kphee!

Im so sorry. I too lay down all day and even that is painful. I dont have trouble with bowels but it hurts when i urinate. I was told pelvic floor but i think i was injurd by the robot honestly. I cry so much over night everything changed for me and my loved ones. I fight hard every day to find answers research and see drs i wont give up til im better.

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Hi I’m so sorry you are struggling please try and keep strong you will find the right dr to help you x

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I will! I fight everyday to be heard.

Thank you

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Yes me too hope you get the help you need x

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Kphee... ditto!

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I am unable to even think of what may have happen to you. I do suggest you get an attorney right away. For so many of us on this forum there is no visible sign of any damage, it is all buried within. You have a devastating visual of a medical disaster. I am hard pressed to understand how a hysterectomy would cause damage all the way into the sternum. I ask you, for many of us I believe, to open a case legally to encourage accountability in the area of women’s health. You are one of the very few that show the damage externally. I am appalled for you. I will tell you I was a university professor, I had bought my first home, a new car, and was ready to start my family. I had a myomectomy to remove a large fibroid to increase my chances of having a normal delivery. That was 2010. I have been in retractable pain ever since. I have not worked since that day, I never drove that car, my relationship ended, there will never be a baby for me. I am in my house 24/7 except for appointments which render me in agony beyond the imagination. I have slept upside down in a zero gravity chair at all times, I have searched and researched looking for answers. I have exhausted all modalities of available treatments, and I mean ALL! I have found some relief with LDN (low dose naltrexone) just recently, which means I am able to move without crying. Why am I telling you this? I want you to know what may lie ahead, although I truly pray differently for you, I hope for you to get an attorney while you still have the damage available visually. I can clearly see that something truly went wrong in your surgery. It is so important that you be able to financially handle all the possible treatment that may lay ahead, up to and including, possibly traveling to foreign countries for help. I am so sorry that this happened to you. If you can please keep us updated. I wish for you wellness.

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Also, I like you told them immediately after surgery something was wrong.

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I did, too, and was out of there faster than the speed of sound with a referral. I want to comment more but am hurting too much. There is so much to say and connecting with similar situations helps so much. I'll try to get back asap....

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I know love. Everything is just to much, I am so very sorry. We are with you on your journey.

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Hi! It’s reassuring as hard and as unfortunate as it is ti know we are not alone. Google the HERS foundation there is a section on web page called in her own voice.

Also contact founder she councils hysterectomized women.

Nora:

+1 (610) 667-7757

HERS Foundation

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Yes, I think the robot did cause internal burns and you can read many stories and lawsuits of this happening with Da Vinci. Maybe find a doctor that specializes in burns? You look thin and supposedly burn victims fed a high calorie/high protein diet heal quicker. I have no knowledge in this area but I know that zinc, vitamin C (high doses) and essential fatty acids like good quality fresh fish or krill oil are the great healing supplements. I have great faith in the body's ability to heal once a proper diagnosis is had. I had a benign left ovarian cyst removed in my early 30s via laparoscopy and it was uneventful except that when I first woke up from surgery I felt as though I couldn't breathe. It was like being water boarded for 30 minutes. My surgeon laughed and said they probably gave me to much anesthesia and certain muscles that relay the message to the brain that you're breathing were still numb. No message means you feel like you're drowning even though you're not. Anyways, it has forced me to always find alternatives to surgery and general anesthesia. When my fibroid grew and was resting on the neck of my bladder I had to do something because urinating was near impossible. So I had the fibroid embolized - no anesthesia of any kind. It shrunk it enough where it was no longer resting on the bladder. Of course my left ovarian cyst returned and has slowly grown over the past 18 years. I tried apple cider vinegar but that only seemed to make it grow even bigger and faster - 19.5cm in February. Then I read about the importance of iodine and how iodine deficiency is rampant. Supposedly our ovaries and breasts desperately need iodine as well as our thyroids and will produce these cysts as a way of throwing a wider net to catch iodine. I did Dr. Brownstein's iodine protocol for three months and a few weeks ago went for another ultra-sound. Cyst at widest point is 14.7cm. Doctor claims it is operator error. I can tell it has shrunk. Plus they were able to visualize my right ovary for the first time in a long time. Still can't visualize left ovary. As healthy as apple cider vinegar maybe it was causing more harm probably because it has a tendency to block absorption of iodine. According to Dr. Brownstein it can take a year or longer and if anyone has a one year cyst it's me. My point in all of this is to show our ability to heal ourselves when we know the root cause of something. I would love to have the cyst aspirated but there's some strange medical equation that says if a woman has a complex cyst (septations - big deal) and is post-menopausal there will be no aspiration, only removal. I get it, the fear is that if the cyst is cancerous, aspiration will seed the cancer. The rule applies to my 18 year old cyst just like a newly discovered cyst in a post-menopausal woman. It's ok, it forces me to try to heal myself and share what I discover with other women. Please keep us posted.

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Vickie, I must mention my favorite substance - DMSO. I just read that it is also good for burns. DMSO is a miracle substance of sorts and is used for arthritis, muscle strains. It really penetrates. It is being researched the world over, even for cancer. YOU MUST do your homework if you're even thinking about using this substance. I'm NOT a doctor. Just a woman terrified of surgery and doctors in general. Thus I'm willing to do stupid things sometimes. DMSO is a carrier substance, meaning anything on your hands when you apply the DMSO will be carried into your body along with the healing DMSO. Do not follow my lead blindly.

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Hello. This post really spoke to me. I had a laproscopic myomectomy in October 2018 and woke up and knew something was terribly wrong. I have been in excruciating bladder and pain at the surgical site ever since surgery. I have done PT, pain meds, essential oils, I walked, I did very slow yoga, I have done massage, cranial sacral work, seen 6 GYNS, a General Surgeon, had another surgery (exploratory) and my pain is awful. I have been on narcotics, gabapentin (which I HATE), NSAIDS, CBD, muscle relaxants, etc. I do not work, I do not socialize, I am only comfortable when I'm lying down. My pain is in my lower left quadrant which also means that going to the bathroom is always so painful. I'm only getting worse, not better. I've seen 3 pain management doctors and a neurologist also. Nobody knows what is wrong with me although a few have said I was damaged in surgery. I ALSO have a slightly mottled belly. I was showing someone this morning. It is very strange. It is a total NIGHTMARE. And if ANYONE has ANY SUGGESTIONS please write them on this thread. It is now almost 8 Months of TOTAL HELL and very few people can understand/help and the doctors have no answers. Vicki, your story is the closest thing I've read that is similar to my case. And I really believe my original surgeon just let me LINGER for so long, giving me the bullshit "You will get better" line, when I knew something was VERY WRONG. It's awful. I'm so sorry for all of us.

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Hi 21Tara so sorry for yr pain, l am 15 months post full hysterectomy in terrible pain, loads of meds, both pain and nerve. Did the DMSO with castor oil hot pack's, had numerous CT scans showing up diverticultis after surgery, pain was immediate after surgery something was def wrong, looked like 8 months preg. yep infection, anyway put on antibiotics but still in so much abdominal pain its quite debilitating so we requested a colonoscopy the colon was clear. Showing mild diverticular. I suspect adhesions because l have had them before after an ovarian cyst op. and had them removed. I tried Serrapeptase 250,000ua and niw back on Neprinol. therapeutic level and found some relief, it eats up dead cells ie fibroids etc, please research it. also Lidocaine for topical skin numbing just a suggestion to all reading, l am still researching lots and won't give up as doctors so easily do. Don't underestimate herbal meds either try and try everything. Hope there's some light here for us all xxx

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Almost my exact story, I ask myself constantly, how can this be? How can this be acceptable. I am so sorry.

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Question for anyone: Has anyone here been diagnosed with nerve entrapment? Does anyone know anything about how that can be relieved if so?

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