Pudendal Neuralgia,8yrs Hysterectomy Stem Cell next?
Posted: Wed Feb 28, 2018 10:08 am
Bugs Story: incomplete in progress:
It all started with a vaginal prolapse I think. Went to OBGYN surgeon & he said I needed a Hysterectomy & a total vaginal Reconstruction. I was having lots of pain for the year prior. Within 3 days I was admitted & had the procedures. After my surgery my pain continued but continued to get worse. I kept returning to the surgeon for the next 9 months or more to be told the same each time... " it's a process, you'll get better! ". I was tired of hearing the same thing from him so I took my condition into my own hands. I changed my Ins to a PPO so I could go to any dr I wanted. I cannot even remember how many now but in the end I had reports from all which helped me later to win SSI Benefits. One of the Drs decided to do a vaginal ultrasound & external ultrasound and she said " oh wow, you have a mass the size of an Orange. I was admired again they removed my mass, removed 1 ovary. The new surgeon said I had horrible Scar tissue & that my colon & intestines were adhered to the wall of my stomach. Removal & releasing my internal organs he said took the most time. He also said but wouldn't say on paper ( wink wink) that my Hysterectomy / Prolapse was actually possibly the mass pushing down causing intense pain & bulging. This new surgeon Also had to reopen my suture because it was crooked, overlapped and left a grape size ball of skin. So this part of the surgery was done by a cosmetic Dr. Finally I thought I was in the right hands at UCLA & they fixed me all up!!! The UCLA Drs cleaned up the mess the other Dr did !
Yet still life has never been the same since. After the original Hysterectomy pain gradually started to take form more & totally different. After 2 months I was at the highest peak in the beginning which became the new normal. Couldn't walk, extreme pain screaming bloody murder. Had to use a walker & now to a cane. I have about 6 diagnosis's. Finally diagnosed after 2 years at UCLA with Pudendal Neuralgia, sacroiliac joint disorder & more to come when I get my paper out soon. I've been on tons of medications, My pain Dr is Dr Eric Hsu who injects various concoctions & nerve blocks for the last 3-4 yrs. Specialist Drs are Dr Andrea Rapkin & Dr Villablanca. Dr Rapkin & Dr Villablanca are the ones who finally diagnosed me.
I will say to get appointments with Dr Rapkin it took 7-9 months because what I heard, is she's the #1 Dr in California. She is a very good Dr for many female issues. I have a severe case because many things went wrong in surgery which caused me to have multiple problems & diagnosis & a few other surgeries to correct what the original surgeon did wrong. . I can't walk, sit, stand for any length of time. I pretty much must lay on my right side & am home bound. I fall a lot. Its been a long road I'll say. Tried everything! Prior to hysterectomy I was an avid work out queen , runner, on softball team, hiked & roller skated weekly. I was in above average shape & health. I've gone from 130-195 @ 5'9. I just turned 50 a month ago. This all began when I was probably 41 or 42.
can't sleep well and typically wake up crying each morning.
Due to many issues my pains are all different. My PN tho is internal vaginal pain aching throbbing & pulsing same with my pubic bone. Feels like I'm carrying an orange inside me so I walk very awkward now. My left labia is partially numb. I also have shocking stabbing pains in each side of my buttocks in 2-3 spots on both sides. Yet none fire off all at the same time. At times I have shooting pIns down my left leg. So many MRI's & CT Scans & they also saw I know had sciatica as well. I will list all my diagnosis soon so my story is complete.
Gonna be honest here ... my gosh I'm desperate!!!! I want stem cell therapy but want to hear if anyone has had any luck. I I actually would do just about anything really. I'd consider research as well. It kills me that my youngest son 14 only knows & remembers the mom that's always in bed all day & night when my other 2 knew the real wild fun me. I'm sure I've missed stuff but that's about the gist. When this started I just couldn't believe nobody knew what was wrong. I must have seen about 30 Dr's & if it wasn't for my own investigation & self determination, I still probably wouldn't know. But I've had enough!!! I don't know how much more I can take of this!! I have a hard time caring for myself & it's upsetting my son 14 must watch me fall, cry & feel so helpless.
Thank you, Bug - Los Angeles , Calif
Can anyone help me? Advocacy? I'm open ... thank you for reading !!
P.S.Be patient on my returning emails please.
It all started with a vaginal prolapse I think. Went to OBGYN surgeon & he said I needed a Hysterectomy & a total vaginal Reconstruction. I was having lots of pain for the year prior. Within 3 days I was admitted & had the procedures. After my surgery my pain continued but continued to get worse. I kept returning to the surgeon for the next 9 months or more to be told the same each time... " it's a process, you'll get better! ". I was tired of hearing the same thing from him so I took my condition into my own hands. I changed my Ins to a PPO so I could go to any dr I wanted. I cannot even remember how many now but in the end I had reports from all which helped me later to win SSI Benefits. One of the Drs decided to do a vaginal ultrasound & external ultrasound and she said " oh wow, you have a mass the size of an Orange. I was admired again they removed my mass, removed 1 ovary. The new surgeon said I had horrible Scar tissue & that my colon & intestines were adhered to the wall of my stomach. Removal & releasing my internal organs he said took the most time. He also said but wouldn't say on paper ( wink wink) that my Hysterectomy / Prolapse was actually possibly the mass pushing down causing intense pain & bulging. This new surgeon Also had to reopen my suture because it was crooked, overlapped and left a grape size ball of skin. So this part of the surgery was done by a cosmetic Dr. Finally I thought I was in the right hands at UCLA & they fixed me all up!!! The UCLA Drs cleaned up the mess the other Dr did !
Yet still life has never been the same since. After the original Hysterectomy pain gradually started to take form more & totally different. After 2 months I was at the highest peak in the beginning which became the new normal. Couldn't walk, extreme pain screaming bloody murder. Had to use a walker & now to a cane. I have about 6 diagnosis's. Finally diagnosed after 2 years at UCLA with Pudendal Neuralgia, sacroiliac joint disorder & more to come when I get my paper out soon. I've been on tons of medications, My pain Dr is Dr Eric Hsu who injects various concoctions & nerve blocks for the last 3-4 yrs. Specialist Drs are Dr Andrea Rapkin & Dr Villablanca. Dr Rapkin & Dr Villablanca are the ones who finally diagnosed me.
I will say to get appointments with Dr Rapkin it took 7-9 months because what I heard, is she's the #1 Dr in California. She is a very good Dr for many female issues. I have a severe case because many things went wrong in surgery which caused me to have multiple problems & diagnosis & a few other surgeries to correct what the original surgeon did wrong. . I can't walk, sit, stand for any length of time. I pretty much must lay on my right side & am home bound. I fall a lot. Its been a long road I'll say. Tried everything! Prior to hysterectomy I was an avid work out queen , runner, on softball team, hiked & roller skated weekly. I was in above average shape & health. I've gone from 130-195 @ 5'9. I just turned 50 a month ago. This all began when I was probably 41 or 42.
can't sleep well and typically wake up crying each morning.
Due to many issues my pains are all different. My PN tho is internal vaginal pain aching throbbing & pulsing same with my pubic bone. Feels like I'm carrying an orange inside me so I walk very awkward now. My left labia is partially numb. I also have shocking stabbing pains in each side of my buttocks in 2-3 spots on both sides. Yet none fire off all at the same time. At times I have shooting pIns down my left leg. So many MRI's & CT Scans & they also saw I know had sciatica as well. I will list all my diagnosis soon so my story is complete.
Gonna be honest here ... my gosh I'm desperate!!!! I want stem cell therapy but want to hear if anyone has had any luck. I I actually would do just about anything really. I'd consider research as well. It kills me that my youngest son 14 only knows & remembers the mom that's always in bed all day & night when my other 2 knew the real wild fun me. I'm sure I've missed stuff but that's about the gist. When this started I just couldn't believe nobody knew what was wrong. I must have seen about 30 Dr's & if it wasn't for my own investigation & self determination, I still probably wouldn't know. But I've had enough!!! I don't know how much more I can take of this!! I have a hard time caring for myself & it's upsetting my son 14 must watch me fall, cry & feel so helpless.
Thank you, Bug - Los Angeles , Calif
Can anyone help me? Advocacy? I'm open ... thank you for reading !!
P.S.Be patient on my returning emails please.