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A blog, it turns out, about pudendal neuralgia (not vulvodynia, as we thought for two years) - treatment, pain, other assorteds.
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minimal stuff about me
- Kate
- United States
- I'm married, have a young child, and developed pudendal neuralgia in January 2007 - literally overnight. Well, the Sx appeared overnight. I have another blog, but that doesn't feel like the right forum to write (vent, scream, bitch, etc) about this, so here we are, at vulvodyniasucks.blogspot.com.
19 comments:
Dang. I am so sorry about the pain. Truly sorry. I know that doesn't mean much when you're hurting.
I experienced that pain in December, the one where you can't eat, sleep, drink, think, etc. All I could do was curl up on the floor or bed.
In response to your comment, please feel free to link to my blog. The more awareness and support, the better. If you can email me through pudendalpain@gmail.com, I'd love to chat more about PNE when you're up to it.
K -- yes, I have pain all the time. All the fucking time :) I seriously don't underdstand why we don't go crazy.
I had a moment a couple months ago right after doing some at-home PT where my pain just...went away. I don't know what I did right but I'm searching to bring that back. It was like Being John Malkovich, at the end, right before Lester's crew goes in...
And when I look at that smiley-face pain scale I realize I'm usually at a much higher level than I think I am -- because it all becomes relative and *this* isn't as bad as *that* was.
But it becomes the backdrop, the baseline, like pressing TARE on the scale. It's where I have to operate from no. inhave no answers but I hope company does help you.
You are not alone. I don't think I have the same thing that you have, but I do understand. I am doing a blog about the pain as well: http://downtherevaginalpain.blogspot.com/
I'm happy for you that you have a name for your problem - I'm still in search of that.
Thanks everyone. And, sorry, everyone.
I feel the same way, I have that much pain .. like dreading waking up 3 hours after you go to sleep. Having to constantly be on med that offer no relief or solution to the matter.
You are not alone.... I've been this way for 12 years. Ever since I was a kid - its unbeliievable how callous some docs can be. To tell the truth I'm still mad at them for treating me the way they did- thinking I wanted pills when all I wanted was relief. Don't worry you'll find a doc that'll make you feeel like someone cares, if yours now doesn't get a new one!
Feel better, if you can.
Niki
Hi...I stumbled across your blog while looking for info on nerve blocks & vulvodynia. I haven't been diagnosed with vulvodynia, or anything definitive at all, but I've been in severe pain for 10 months now. My symptoms sound incredibly similar to yours. Some days, I can barely move and I wonder if I'm even going to survive this. I just wanted to say hello, and NO, you are absolutely not alone.
~Gina
You are not alone. This infernal pain seems to flummox docs. If you had carpal tunnel syndrome, they'd directly test that area, right? I've had an EMG and NCS...on my feet, legs and upper/outside hip and buttocks. (Granted, my lower extremities are numb and painful.) Despite my very clearly saying it's primarily my perineal, rectal, vulva areas that are painful, no studies there...not that anyone would WANT that, but DANG! If that's where the pain is, then get with the program! The pain is constant, worse while driving (I think it's the vibration that aggravates it), worse at night, while lying down or sitting. While at work I can be distracted enough that I can usually ignore it. But mostly I have a constant burning, stinging, crushing pain in the crotch/lower buttocks. As time has gone on (1.5 yrs), the pain/pressure is increasingly internal. It makes me want to scream! It makes me want to hit someone...but WHO?! I don't know how long a person can take this kind of pain.
Re 4/14/10 comment "This is it and oh no cure. great. fuck." Don't give up. It may take seeing several specialists. I personally had to go to OB/GYN, Neurologist (who dismissed, treated me with IM penicilin), another Neurologist for EMG, NCS's (but NOT in primary pain area-groin), Infectious Diseases guy (28 days IV Ceftriaxone), Chiropractor, back to OB/GYN, ID guy again who finally decided it was likely some kind of compressed nerve-he thankfully sent me to Pain Clinic where a physiatrist gave me an epidural L2-L3 nerve block (steroids and lidocaine). Thankfully I THINK things are BEGINNING to change...won't really know for another 3-7 days whether this is temporary or placebo effect or beginning of some relief. I THINK my groin is not burning quite as much, still painful but I think more of a dull pressure/pain. I am hopeful for the first time. I wonder if folks with what they think may be a pudendal nerve problem may do best by going to a good pain clinic to see a Physiatrist (maybe one also who is anesthesiologist). Physiatrists are rehab specialists with extensive knowledge about bones, nerves, muscle. Anesthesiologists at pain clinics (if I understand correctly) specialize post medical school in pain and have to know alot about human anatomy, nerves, muscles. Don't give up. See someone in a good Pain Clinic; I am happy with the Physiatrist I am seeing...and hopeful about the nerve block. Groin pain can originate from other spinal levels as I understand it, not just the pudendal nerve. Good luck.
Well, L2-L3 nerve block made some improvement in back and hips, but, alas, didn't touch the groin pain which is becoming unbearable when driving...it's the vibration that makes it such sadistic torture. I sobbed all the way home from work Friday. This is no way to live. Left voicemail with my pain doc asking if SOMEthing can be done on an urgent basis to provide SOME kind of relief.
Dear Anonymous;
just an FYI - or hope? My brother had similar complaints for years and discovered after seeing 3 doctors that he has bone spurs wrapped around his hip socket. He was wrongly diagnosed with piriformis syndrome for several years first. Hope this helps......
Re 5/19/2010 09:05:00 AM comment: FYI or hope...Thanks for that info! I do have arthritis with bone spurs. What kind of treatment (if any) did your brother get and did it help?
My L2-L3 did provide some (not full-but I'll take what I can get) relief for lower back, hips, thighs...going back for another 5/25.
Had an ilioiguinal block 2 days ago. While I didn't feel anything immediately (supposedly you're supposed to with this kind of block), I did notice yesterday and today that instead of needing to urinate 15-18+ times/day, I didn't feel the urgency, only peed maybe 8 x's yesterday, also just a few times today. Groin pain SEEMS less...although since that pain was variable, I'll have to wait a bit to see if the pain really is reduced. We'll see. At least I feel like we're zeroing in on the problem. I have some hope finally.
hi,
i have pudendal neurolgia that took over a year to correctly diagnose. i live in nyc and have seen all the best drs yet no one could diagnose me! i had mri's done on my spine, ovarian ultrasounds, catscans, etc. Finally, thanks to my great pt, she begged me to get a hip mri eve though i had no hip pain. Well, turns out I have a labral hip tear and she along with others who are studying this topic are convinced the tear is causing the pn. i am now having hip surgery on the 9th-simple laprosccopic procedure followed by months of rehab- and my drs are very hopeful that this will fix the problem!
i dont want anyone else to go thru this, its awful. so if you have pelvic pain, pls go get a hip mri and see if you have a tear!!!
I also have a hip tear, but I am so afraid of the hip surgery because I get terrible pain flares after vaginal exams and I had to have a cystoscopy and that caused a terrible flare after the fact and also a colonoscopy flared me. ugghh! This has been going on for 3 years and many thousands of dollars and doctors. Just shoot me already!
yep. pain all the time, all the time, all the time. you are not alone. me, vulvar vestibulitis and pudendal neuralgia. SUCKS. Not sure how I am still here.
You are not alone. I have had constant pain for a few years and recently had a vestibulectomy that my doctor said had a cure rate of 85% for vestibulitis. I ended up getting a barthlolin's gland cyst because of the surgery and it made the pain worse. But, I do not think my experience is common. Most women with vestibulitis should respond well to this surgery, so I am just unlucky. Bartholin cysts are horrible and recurring. Every time I get aroused, the cyst swells full of liquid and aches for hours. It has been this was since April 2010 when I had the surgery. This is on top of the constant burning pain and muscular pain. I can't have sex, ride a bike, or sit at work. I am on gabapentin and amitryptiline and I go to physical therapy and acupuncture. I recently started a gluten-free diet and we'll see if that helps. I am truly sorry and I feel your pain.
Yeah, I get your frustration, I have constant pain all the f..ing time too, it NEVER goes away. The minute I sit down it starts. I've had this for 3 years and have seen a million docs. Recently I was diagnosed with PN and referred to a NH pain clinic. I had a PN nerve block in Sept. which helped for a day, then I had the 2nd block last week and it didn't do anything. I am scheduled for a 3rd next month but I'm not feeling too hopeful. I've tried numerous meds, nortriptylene, lyrica, neurontin, all with awful side effects. So I feel your pain and frustration. Wish I had a solution for any of this but it's nice to be able to vent to anyone!!! Gail
i know this post is 2 years old now but i have the exact pain and problems you do. It seems that mine was brought on by being pregnant with my 2nd child(got nerve damage in lower abdominal area too). And im only 23 :(
Recently changed docs whos been a great help(old said it was IBS!!!) but pain clinic refuse to treat it as its apprenlty a gyne problem, but gyne say it isnt theirs. 3 years ive been in this pain and basiclly been told im too young to keep having steriod injections for years(fair enough as itll mess my system up) and surgery, and itll probably go in a couple of years maybe...
I can understand the agnoy it causes, emoitionally and pyschially. Ill be book marking this blog and having a good read, I hope they find a cure someday, its horrible to live with it and people not understand :(
I wish you good luck on your road to a pain-free life x
Hi I feel your pain every minute of every day , I have three kids and feel constantly suicidal with this chronic stabbing herendous pain up my vulva and on my pubic bone and every bit of anatomy that a cyclist would feel it's agonising . I can not sit down unless I am on a toilet my husband is on week three of sick notes as I can't do a thing for the kids I need help I thought I would die of pain but unfortunately still here !!!I notice your comments are all 2010 how r u all now I need hope!!! Joanne
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