Discussions By Condition: Medical Stories

chronic pelvic pain, 3 years & 13 doctors's later

Posted In: Medical Stories 0 Replies
  • Posted By: rosewood723
  • December 23, 2009
  • 03:19 AM

My story is long, My periods were always regular every 28 days for 3 days of heavy bleeding then it would end. Always some minor cramping until the flow started, but at 39 it started to change. Heavy flow turned into heavy clots and then it didn't end, I had bloody show for the remaining 25 days til my period would start again.

I went to see my cousins obgyn in 2007, she had similiar symptoms & had novasure done and that stopped the bleeding, I would just have an incredible pain flare & it usually meant I was passing a clot. This made my tampons very ineffective & some clots would push the tampon out of me. He did endometrial biopsy, transvaginal sonogram, & pap, everything was ok.

a month later I lost the ability to feel the need to urinate. My family doc got me into a urologist. he ordered lumbar x-ray, blood work & had me do a voiding diary. He did a rectal exam & put me on fiber

My family doc wanted to work with me on my pelvic pain & ordered more blood work & an internal ultrasound where you drink 40 oz of water. Since I wasn't urinating by the time I got to the testing site, I had so much pain, I bypassed the ultrasound & went up to the urologist office. I had so much pain they took me in immediately drained me & got 714cc's out of me & catheterized me. He ordered voiding trial & urodynamic testing. I failed those tests, my pvr was 550 cc's. He taught me how to cath myself & they actually taught my husband how to cath me.

For Pelvic pain My family doc got me in with a obgyn, Dr M, thought since I am fat & I have a furniture store that I had a hernia, so he sent me to a surgeon & was going to do the novasure procedure at the same time the surgeon would possibly fix a hernia, I had a ct scan of pelvis with contrast & no hernia was detected.

So Dr. M did Novasure, a tubal ligation & d &C, He said he'd look for endometriosis but he did tell me that he couldn't guarentee pelvic pain would end.

He was correct, bleeding stopped, but pelvic pain continued. No endometriosis was found. so i wrote my urologist to see if pelvic pain could be caused by bladder issues, He wrote back & said he thinks it's an obgyn issue.

at follow up Dr. M suggested gastro doctor. I met with one & he suggested irritable bowel and limited foods, increase fiber & put me on levsin.

I wasn't convinced, at the start up of my cycle (no more bleeding since novasure but I still had a cycle) I had such a pain flare, I called my obgyn for vicodin & my family doc wanted me on birth control pills, but I had a tubal. so It really made me upset. if I could have done this by birth control in the first place then Why did I do the novasure & tubal, I didn't have children so it was a big decision & it felt like it was a big joke.

At one point I asked my doctor to recommend a psychiatrist.He said back to gastro, but I didn't go. I found on line, a pelvic pain specialist in Bethlehem pa, He gave me a 3 hour appointment to review all my records and give me a physical. This was an interactive physical, I was thrilled we talked & he examined, we compared pain on one side as to the other, This guy really seemed to care & I thought for sure he'd find it. He decided to do nerve blocks. I stayed with him for nearly a year & he put me on antidepressants, pain killers. I wasn't getting better So then we tried lupron to shut down my cycles & see if the pain flares would go.

I needed the next years pap & dr. M said you're not better, but he didn't offer an alternative so I was very frustrated with him.

My sister showed me an ad of a new obgyn who said she specialized in pelvic pain. during my first exam, she said obgyn #2 missed it. I had taken the records of the picturs from the first laparoscopy & she said based on the quality of the equipment that it was no wonder he missed endometriosis, she said she knows where endo hides & she can solve my problem. So she schedlued my second laparoscopy. she gave me the shot of lupron for the remaining 3 month shot. She did the surgery and told my husband that I was "inundated"with it & she removed it.

after giving my self recovery time, I went for the follow up & said the pain remains, she added cymbalta to my drugs but that gave me urine retention & I didn't need that again, so I quit that, So I went back to DR E. I asked him to re evaluate me & he said no. His nurse told me that I just have to except the fact that I will have pain when I do certain things & I need to accept it & hire people to help me do basic things.

they suggested other things to help, pelvic floor physical therapy, Qichi, ect I thought the qichi was wierd & quit. I then found myofascia release clinic in paoli Pa & went for treatments.

I couldn't go back to dr. E, they already told me to stop doing things. that answer was unacceptable, so I read on-line about "headache in the pelvis" and the author told me to go to NY and see a dr. Moldwin.
I then did a trip to NY to see a Dr. Moldwin who wrote a book on interstitial cystitis, thinking may be he'd know. So I did, it cost me $300 just to see him plus I got bills for the tests he ran. he did spend time with me, I was unable to give a urine sample (shy bladder) so he drained me. I had 400 cc's of urine. He said that was unacceptable. he wants me to cath 4-5 times aday & keep my bladder under 400 cc's. He thinks it's pelvic floor disfunction.

I come home & the next week I went blurry. I went to my family physician and he took my blood & my sugar was 550. a1c was 10.3. I wanted to concentrate on the diabetes thing so I quit worring about my pelvic pain, but the diabetes classes recommended me walk for exercise & change my eating habits, I did that but the exercise created pain flares.

Now it's the next year & time for my pap again. Dr. M said he didn't know what to do but he'd refil my vicodin prescription.

So i searched on line & found a dr birnbaum, a pelvic pain/ fertility/ endocrinolgists. I thought this guy sounds promising. He could help with the diabetes, so I e-mailed him & asked him if he'd like a challange. He replied yes.

I drove an hour to his office, He spent over an hour with me. He couldn't figure out my problem so he wanted me to get my local doctors to order an MRI & get the results to him.

the Mri results came back my local doc & local obgyn's office didn't se anythng bad showing up. Dr. B reads the same test & says you have adenomyosis. My local obgyn's office told me based on the report she's reading if I wanted a hysterectomy it would be considered an elective and I'd have to pay for it. I told her the doc in philadelphia says it's on the test paper. she says my obgyn, dr. M is out & he'll call me when he gets back in in 3 days. I then get a call from his office that they want to schedule a surgery. WHAT? I didn't under stand how we went from an elective to now i need surgery. She replys "that's what you wanted isn't it" Not really, I want what's right for me, not just surgery for surgery sake.

so anyway me & my husband went to meet dr. Meyer yesterday & he scheduled me for a hysterectomy Jan 28th 2010.

Hopefully they'll get it. No guarentees, I just hope it's the right thing.

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