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.