Out of options and losing hope

[edaniels2324]

Long story. I had my son in December of 2016. I had a C-section. The pain start shortly after that. Went to my first OB, US, CT's all came back normal. She decides to do a diagnostic lap, December 2017, cleans up endo tissue. Went back and she said I had a ton of cysts all over. So we decided on surgery, January 2018, again since I was done having kids. She gets in there and I have a massive infection plus a bunch of endometriomas, and Endo tissue. Appendix was fused to my fallopian tube, huge mess. So she does a partial hysterectomy, and leaves my right ovary in. Did a biopsy on my uterus and I have adenomyosis. Couple months later, March 2018, the pain is back and it's horrible. She goes back in, takes the rest of my stuff out, cleans out the Endo tissue that's still in there. Pain starts coming back again, May 2018, goes back in, cleans up more endo tissue, scar tissue and adhesions. Call and let her know that I'm still having pain. She tells me there's nothing more she can do. So I find another OB and go see him. He decides on another surgery, September 2018. Same story. Endo tissue and adhesions. Called him at the beginning of November and he says there's nothing else he can do. So now I'm in horrendous pain and literally nobody in this town will touch me. Even the ER has marked me as a seeker. So my question is, what do I do? This pain is so bad that I want to cut my own stomach open. I can't handle it for much longer. I have 3 kids, and I can barely function.

[Pinky2233]

I have not had what youve had but scar tissue for other reasons

My Urogynocologist did hydro dissection injecting anesthic about 40ccs and used the needle to break up any scar tissue she found.

Then I needed Pt’s to break up what was left

All internal work

Don’t know if any of this would apply but wanted to share if it did.

Hang in there

[edaniels2324 in reply to Pinky2233]

I'm currently doing PT, acupuncture, and seeing a chiropractor. Nothing is helping. So I made an appointment with a pain clinic out of state. We'll see what they do.

[Retry]

I had endo and ended up going to an endo specialist. It can be microscopic and you need a surgeon that does microscopic surgery. Dr Andrew Cooke in California. I was still in pain a year after my hysterectomy, and told by my gyn that nothings in there And you can’t have endo after hysterectomy . He has a web site vitalhealth.comhttps://www....

[Retry in reply to Retry]

vitalhealth.com

[edaniels2324 in reply to Retry]

I don't think they will do anymore surgeries on me. The more surgeries I have, the higher the chance of adhesions coming back. And that is the problem. I set up an appointment with a pain clinic out of state. I'm hoping they can help.

[Retry in reply to edaniels2324]

I lot of my problems included adhesions. He removed them and applied septrafilm over any surgery. It dissolves naturally and prevents adhesions.

[edaniels2324 in reply to Retry]

And endo tissue can still be there if they didn't remove it all.

[swarke22]

Have you read any stein ‘healing pelvic pain.’ It just might help you to understand the amount of muscles down there that can go into dysfunction and what to do when they are in dysfunction. Hope it helps. Hang in there.

[edaniels2324 in reply to swarke22]

I will look it up. Thank you.

[Konagirl60]

OMG! You’ve been utterly dismissed and kicked to the curb! I know that hopeless feeling. It happened to me. I almost died from life threatening nerve compression pain and three years of sleep deprivation.

What method of birth control do you use now? Have you had a tubal ligation? Were metal Hulka OR Filshie clips put on your Fallopian tubes st any time? Do you have any metal hardware from previous surgery inside your body?

Where do you live! Thinking of you. A natural product called Pascoflair can calm your agitated nervous system. Curcumin helps inflammation. Fresh pineapple contains bromelin...it helps pain. Beets will lower blood pressure which raises when we are in pain.

[edaniels2324 in reply to Konagirl60]

I live in Wyoming. They removed all my girl parts inside, so I'm not on any birth control. Just a hormone pill so I don't go into early menopause.

[Konagirl60 in reply to edaniels2324]

I’m presently in Minnesota. Yesterday and today, iI had a follow up visit with Dr. Stanley Antolak. In 2011, I flew to Minneapolis and had decompression surgery of the rear branch of my right pudendal nerve. It was a success. The burning pain was gone. Thank the Lord! Dr. Antolak is my hero.

I’m Canadian and where I live in British Columbia I was utterly brushed off as having a nerve imbalance....they thought I was nuts and just wanting attention! NOT!

Nine doctors left me to die in agony. All they did was abuse me emotionally and verbally, they sedated me, purposely misdiagnosed me and the pain specialist did her nerve blocks incorrectly. She committed fraud......I never filled out Pain Clinic Intake Forns! I also never filled out Follow Up Questionnaires where I could describe my pain and wrote whether the useless medications she prescribed me weren’t working.

They said I had vulvodynia....NOT. My life threatening pain was NOT controlled properly for three years! I had bad reactions to Gabapentin, Lyrica, Cymbalta....I refused Oxycontin and Hydromorphne....the doctors kept pushing for medication management....nothing worked! I kept advocating for what I knew I needed....three successive guided pudendal nerve blocks done, one month apart, with both anaesthetic 60+80mg, steroid...INTO the nerve root in my right buttock. I knew that if those nerve blocks were a bust....I needed the surgery.

I had one of the worst entrapments of that rear branch of my right pudendal nerve AND my right inferior rectal nerve. They had stuck to juxtaposed overused ischial spine ligaments. They need to be released and I didn’t get surgery on time because no doctor in B.C. would help me. I hired and paid a registered nurse consultant and she advocated for me in August 2011.

I was super athletic....ballerina to the teaching level, skier, backpacker, swimmer, scuba diver, tennis etc. PLUS I did all of my own gardening including mowing, planting and raking up fifty bags of leaves over the Fall and Spring months for 33 years!

This athleticism caused those ligaments to over stretch....I did not know. Also to, I did hip flexion activities ( bending over my groin ) putting products on shelves lower than waist level and picking up heavy ten pound boxes ( sometimes 20 in one shift ) every day, afternoon or night I worked for thirty years!

Are you a cyclist, horseback rider, line dancer, backpacker? Have you done a lot of bending over your groin at your work or elsewhere?

Does the pain increase after you lifted heavy items OR climbed stairs with heavy grocery bags?

Dr. Antolak has been happy about my trying to help others. He said the only Doctors he trusts in the U.S. are 1. Dr. Hibner Phoenix, Arizona

AND. 2. Dr. Mark Conway, Nashua, New Hampshire. If you can afford it, could you see one of these physicians ?

The reason the doctors would not help me is because they were committing fraud and covering up the fact the Titanium metal Filshie clips used in my 1998 tubal ligation had migrated. One was seen on an MRI in 2008....they reported it was adjacent to my rectum....they wouldn’t remove it! It was on my rectum....it facilitated the nerves to stretch and cause my P.N.E. That is why the kind and smart neurologist I saw in Toronto said I had atypical P.N.E. He referred me to Dr Antolak.

I remained in terrible pain, with constant flares whenever I walked, drove, and tried aqua size. The second clip had gone all the way up bowel and ended up under my belly button...I haven’t worn pants with belts in eleven years!

The clip on my rectum caused permanent scarring and was removed by a compassionate gynaecologist June 2017. The clip in ileum bowel was removed last May. These clips should be banned! They are injuring women all over the planet! I’m so glad you do not have this issue.

You live in one of my favourite states. Wyoming is beautiful. Good luck.

[edaniels2324 in reply to Konagirl60]

I used to ride horses all the time. And I was a medical assistant before I had to quit because of the pain. So I was always doing stuff. I wish doctors here would do pain meds for a short period. I can't even get those. My pain management doctor at the office I'm leaving, told me to go too a pain therapist. Because it was just in my mind. Umm. No. Not at all.

[Konagirl60 in reply to edaniels2324]

No...it IS NOT in your mind.

If you so wish, the doctor who saved my life in 2011 is back working part time. He is fully aware that I am trying to help other helpless victims of doctor neglect.

You can call him here in Minnesota at 763-219-2166. He needs you to leave your name, date of birth and phone number he can call you back at. Be patient. He will call and if he forgets ....just call back.

[Chronicpainismylife in reply to Konagirl60]

This is so interesting to me, I can identify with everything you are saying. I really am at lost to know what to try next and this gives me hope, I had excision for endometriosis which happened to be deeply embedded in my pelvic floor and a hysterectomy for adenomyosis. I woke up screaming and for several hours they tried to get my pain under control when I was with enough to remember I thought it was a mistake, I was in hellish pain. They would knock me out with pain meds till I would stop breathing/ kept me over night and the whole next month I watched the clock till I could take my next meds. I’m not a wimp when it comes to pain and do not like to take meds but it’s been so frustrating to have people label me as it’s just adhesions it’s just you have had a lot happen. A person knows when something is really wrong!! It’s been six months and I’m still in pain 24/7 no relief even when I take oxicoden it still burns like fire. At five weeks after surgery I stopped my meds due to severe constipation, then I thought I had the worst bladder infection which did not show up and I took stong antibiotics well I also could not stand up due to searing pain that was crippling. So more meds and muscle relaxers and I started physical therapy and did five sets of vaginal steroid injections to try to stop the muscle spasms inside my vagina. Tried and still on a strict diet and I have had three nerve block, a caudal nerve epidural and two weeks ago I had a plasma prp injections, second pelvic specialist believed my spasms are happening from my pudendal nerve. So far I’m worse nothing seems to be helping, I’m so weak and seem to now have really low blood pressure and I can’t walk without my pain going through the roof, I can’t sit, I lay down it not much better, I’m 26 and mom of three young boys but I need someone with my 24/7. I know something is terribly wrong my pain level is at an 8 and never stops. I feel so broken inside, like some one has taken a bat to my pelvis. Along my panty line area it’s so tight and excruciating knife like sensations going into my vagina, my low Back is always hurting to bend over is hellish. I don’t sit still due to pain. I don’t even like to be rubbed or massaged? My butt feels so tight and tense. To walk I have to think about it. Does any Of this at all sound familiar?

[Chronicpainismylife in reply to Konagirl60]

Sorry to bother you again, but may I ask how they were able to give you a diagnosis?

[Konagirl60 in reply to Chronicpainismylife]

I had seven injections last Thursday. I was pained.

I was ‘in transit’ from Minnesota back into Canada last Friday and Saturday.....I caught up on some sleep, cooked some meals and did laundry.

A neurologist in Toronto did a ‘pin prick test’ on me. I was in the stirrups, naked from the waist down....he gently pricked the inside of my left thigh tissue( I felt every prick.... ), pricked both labia, pubic bone area and back over and along the inside of my right thigh. On the right side....he found numbness...I didn’t feel the pinprick. He thought I had an ‘ atypical’ pudendal nerve entrapment...he got me the referral to Dr. Antolak.

Once I was seeing Dr, Antolak, he did the same as above BUT he also did the warm threshold test....I forget the principle. Only an expert can diagnoze this.

[gabss55]

Dr Andrew Goldstein in nyc can help you

[StAnnes]

Facebook has a site called abdominal adhesions pain and suffering, you should get some help there. The more operations you have the more scar tissue you make. Its possible that a really good pain clinic may help you. You could also consider a spinal cord stimulator. I have one fitted for abdominal adhesions. Have had them for many years. Very painful. Good luck.

[edaniels2324 in reply to StAnnes]

I just made an appointment with a pain clinic in Colorado. Where I live in Wyoming, there isn't anymore options. The doctors here are ridiculous. So that's why I'm going out of state.

[StAnnes]

I wish you success

[downtowntiger]

Have you been to a neurosurgeon? Nerve pain is out of the realm of so many doctors! You may have pudendal nerve damage, cut nerve, severed nerve....tons of nerve issues. I see that you are seeing a legitimate pain management doctor. They may do some neuro testing. Not fun, BUT maybe you don’t need pain meds. If you do, maybe you can get a continuous release pain patch. I hate that this is happening to you so early in your life. Hugs to you and your family.