I fucking hate this disorder. It needs to stop.


P said...

Damn, Kate. I hate this for you. You've put in your time; now it needs to end.

I enjoyed your Dr. Goldstein recap. Thanks for sharing.

This Patient Perspective said...

Agreed. I'm right there with you.

Thank you for all the information you have shared on your blog. It's been so helpful, esp since there is so little information about this!

jenji said...

Ugh. I feel your pain. Literally.

I've been dealing with this for a little over a year now. Some relief from my first steroid injection, but I had to trade a normal period for the relief. Yeah, the injection helped the pain tremendously, however it set off a 4 month heavy menstrual period, as in non-stop bleeding and cramps for that entire time. The steroid also messed with my heart rate something awful, which is a shame because like I said, the pudendal pain was much, much, much better on it. But it's a no-win. I have no interest in getting an injection if it's going to mess up my hormones and effect my heart and so, here I sit (aka perpetually lay on my side) cruising the pudendal blogs so as to find others who get it. My pain is excruciating tonight and the Percocet isn't cutting it by any means. Yes, I hate this disorder too! And yes, it does need to stop. I cannot imagine living the rest of my life with this chronic pain. Some days I'm a sport about it and just deal the best I can and then when I have flares like this I can barely think, see or hear anything except unbearable pain. I hate this condition and I'm somewhat discouraged with the very few options available to remedy it. I'm doing everything possible aside from actual surgery, which I really have no interest in given its success rates. I'll tell you, when it flares it just makes me so irritable and agitated toward others because I'm doing all that I can to function sans grumpiness whilst being physically tortured.

Sorry. Purge. Vent. Apologies.

I don't talk about this condition on my blog site at all, so it's nice to find some blogs where I can vent.

Thanks for that.

I'm profoundly thankful to have found a doctor (researched and diagnosed myself and then found a him about 2 hours away) who is familiar with this condition and very supportive and encouraging despite the limited options. For that, I am thankful.


Kate said...


Vent away, sans apologies. They're not necessary.

What are you and your doc doing? PT? Meds, you said.

I think it's wise to avoid the surgery for as long as possible. My advice, post-surg, is to leave it as a last resort. Recovery is terrible. I don't know what will happen to my ass (and back, I imagine)as I age, missing that tendon Dr. A bisected. The positive thing is the reduction in frequency of the torture-level pain spikes. That's a big deal by itself.

"Torture-level." That's not an exaggeration, is it. No question mark - it's not an exaggeration. It is tortuous. It's electrical shock in the genitals. I'd say about anything to make it stop.

I got off track and turned this comment into a post, but my original point was this: come here and scream anytime you want.

JESSICA said...

I was diagnosed of neuralgia in 2011, I have tried all possible means to get cure but all my effort proved abortive, until a friend of mine introduced me to a herbal doctor , who prepare herbal medicine to cure different kind of diseases including neuralgia , when i contacted this herbal doctor via his email, he sent me the neuralgia herbal medicine via courier service, when i received the herbal medicine he gave me step by step instructions on how to apply it, when i applied it as instructed by Dr Williams i was totally cured from this disease within 1 months of usage. any body with similar problem can Contact this great herbal doctor via his email drwilliams098675@gmail.com for advice and for his product,and thanks to you admin for such an informative blog.

kate said...

As a sign of gratitude for how my husband was saved from neuralgia, i decided to reach out to those still suffering from this.
My husband suffered neuralgia and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from neuralgia. and so many other with similar body problem, and they left the contact of this doctor who had the herbal cure to neuralgia. I never imagined neuralgia has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life.neuralgia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .