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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.
9 comments:
It's not the most enjoyable thing to do in the winter! I have two strategies:
1. Take a hot bath before icing.
or
2. Lay on a heat pack while icing crotch.
I also drink lots of hot tea when icing.
And there's always
3. Wish for a time machine and fast forward to summer.
Hang in there Kate. I'm glad to see you posting more.
hi Kate, I, too had the decompression surgery with Dr. A. 24 months ago. Lucky that I happen to live in Mpls. I will not do injections again and am done taking more or different pain meds. I've resigned myself that it is going to take 5 yrs. to hopefully get to 80%. I feel that the pain is a little less severe but still hurts like a bitch. I lay flat on my back a lot as this position is the most comfortable. You are right that no one can understand the kind of pain that is associated with this condition. Does the ice really help?....DG
Me too!
(actually don't know what I would do without ice)
Had PNE surgery with Dr. Hibner 5 months ago, still waiting for improvement, starting to feel discouraged.
hi Sharon, I've noticed most posts are from women. I am male and PN started 2007 after prostate cancer surgery. Of course it took 1 1/2 yrs.and countless drs. to get diagnosed. I know this will be a long road but am willing to wait. I only hope that it truly does get better......
Yep, most of the people talking about this in the blogosphere are women, but there are lots of men out there with PN. Sucks just as much for them.
here's a newbie. "Cyclist's syndrome", many years of long distance riding. Symptoms include sort of a hot spot on one side, some penile burning on and off, been around now for about 4 months, with stopping cycling there has been a bit of improvement.
I am so confused about how I subscribe to this (gabapentin doesn't help...) I am becoming suicidal over pudendal nerve entrapment (lidocaine injections showed where, but, surgeon will not operate, as I've had so many pelvis surgeries..) Help?
Hi KDelphi5960,
I hope you feel better. We all go through a suicidal phase when we suffer of that condition. I was just told by my obgyn today (the one that performed hysterectomy in 2014 - Adenomyosis) to go see a psychiatrist. When doctors can't make money with you, they just tell you to go to hell. I am on Gabapentin 900 mg a day, thanks to my family doctor.
I found that Amy Stein physical therapy helped, the book in on Amazon (Heal Pelvic Pain...I think that's the title). She teaches a routine in that to relax the pelvic floor muscles, but you want to AVOID the piriformis stretch and the squat. Avoid any exercises involving the perineum or sitting on your butt. You really have to go EASY and to not hold the stretches for 30 seconds (15-20 sec. is fine to begin). Gradually and slowly, you may increase if you see that it doesn't get worse. You may flare up once in a while though...I put icepacks between my upper thighs and and lay down when it happens. I know it's difficult to even think about exercing but I believe that's the only thing that helps. The book itself is very interesting but unhappily, not focused on PN. I have ups and downs with the PT but I do it at home and I feel better.
I have a bad back and even if I had hysterectomy; I probably still have endometriosis. So, try to find what is causing that sort of torture. I was given estrogen therapy for a year and kept my ovaries, which means that I can still developed adhesions. My obgyn said "Nope!" but it doesn't make any sense to me since estrogen is responsible for endo. Adhesions can stick to the pudental nerve. Sometimes, they also find these adhesions on bad spots in your pelvic floor muscles. I am decreasing slowly the estrogen. A lot of women have endo without even knowing it. Men often hurt themselves on a bicycle seat of sitting on their wallet while driving. Both men and women can develop PN.
What matters is to go through it...because even if the whole web says that it's forever; truth is, it may go away as fast as it came! I found it difficult to eliminate the stress, but Gabapentin helped somehow. I can sleep 7 hours to 8 hours a night now. The suicidal thoughts that you experience may be caused by temporary side effects but if it goes on and on, get off of this medication gradually of course, and see what else you can take. Find support in a forum online. Lyrica, Elavil may also help. Gabapentin has side effects and among them; suicidal thoughts. I started to have panic attacks (fear of pain!) and it really calmed me down.
I use a cushion in my car, you can search on amazon for an orthopedic cushion. I use it also at the computer. The cushion may help.
Trust me, I used supplements, went in acupuncture, drank all sorts of natural herbal teas; it was useless. Your primary care is probably the only doctor to help you because most of the time...a family doctor listen to what you have to say. I have that condition since 3 years and I am not giving up.
I am using PALMITOYLETHANOLAMIDE tablets , 3 x 400 mgm /day -Morning, Noon and Night -It is a natural Anti inflammatory that can also help repair some nerve damage to the nerves Myelin shield - I also use 70 % DMSO + Dimethyl Sulphoxide- a tree bark extract - Look up Dr.Stanley Jacobs -Portland Oregon- This is an analgesic , antiinflammatory - Wet a cotton bud and lightly rub the area near the pain -Let it dry, if it irritates , wipe with a wet flannel .
DMSO is also an immunoregulator -it will raise healing T-cell levels -That info is from a cancer researcher and the best doctor i know. DMSO works arthritis, burns, bruises, and a wide range of other ailments- It works for me ?
I have never had any help from the many specialists that I have seen, and paid, over the years - I did have severe trauma from fall - once down a cliff, and other time I fell 9 feet onto the concrete ,landing on my butt- Ouch -These could have triggered my PUDENDAL NEURALGIA by causing damage to the Pudendal Nerve- After 42 years my specialist agrees with me ? It was never Prostatitis ??? GET WELL SOON . Alex.
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