Well, I survived my procedure today. I received a pudendal nerve block, cystoscope, bladder hydrodistension and 200 units of pelvic floor Botox. But that’s not the best news…
I got to corner Dr. Hibner today. He has new fellows and new med students. I told him we need to discuss PGAD. He immediately stopped and just listened! Luckily we’ve already discussed the ‘buzz’ I feel but now that I’ve had a spontaneous orgasms, I know what the buzz is. I explained getting in the truck and BAMB- orgasm. Wetting the bed due to spasms… he quickly added the ultrasound guided bilateral clitoral nerve blocks.
The amazing thing from the day- not one medical student or fellow in the room knew what PGAD is! I got to educate the next generation of physicians. ♥️
Here is what I said… (i hope my pgad warriors can confirm if I’m right) the thin line between pleasure and pain is very real and when your shopping in public & you move wrong and orgasm. Not only is it scary, painful and extremely embarrassing but it is absolutely confusing!! I cried, it hurt so bad. Then I was left with a shit ton of spasms that felt like hot pokers jabbing in my clitoral area. Like the orgasm just kept going and going… it took a couple hours to calm down. That was my first and only spontaneous orgasm while I was awake. I can now understand I’ve had them asleep too. I’ve wet the bed because of these spasms.
Here is what Hibner added: don’t bother with an MRI, latest research shows tovlov cysts do not cause the disease. He also explained to his entourage that it used to be called – persistent sexual arousal disorder, but that implies people like or want this disease. It was subsequently renamed Persistent genital arousal disorder to remove the stigma surrounding sex, pleasure. He explained patients often don’t know what it is but the pain is horrible.
The new providers and students were in awe! They had questions and wrote the name of the disease down. They want to help raise awareness too and also ensure they’re education includes this treatment.
I’ll make my follow up after I see how this nerve block works. Time to address an issue I’ve had for over 20 years but knew absolutely nothing about.
For now, keep fighting fellow warriors. ♥️
Ps- I hope my ‘#TeamHibner’ hashtag made it back to Dr. Hibner. #TeamHibnerGirl right here baby!!
💛 #OldGirlintheEndoGame #suckitendo #endendo #endostrong #pudendalnervepain #endometriosis #pelvicfloordysfunction #interstitialcystitis #MMJpioneer #almostopiatefree #marijuanapatient #TeamHibner #TeamDsouza #refuseLupron #PGADisreal #anxietyanddepressionhurt