I woke up exhausted. Literally. I worked 15 hours yesterday. I didn’t feel well and the increase in symptoms for PGAD has been very deflating. I decided it was time to really start looking into what new tools will be needed to combat these painful flares.
So back to today, I just couldn’t wake up, didn’t rest well and the PGAD flare left me grouchy. I tried to get dressed and was almost finished when I realized I couldn’t work all fucking day with this constant BUZZ! I almost melted down – Normal women don’t have to find underwear that won’t irritate their clit and cause a spontaneous orgasm! I couldn’t get undressed fast enough and UGH! Who has time for this???? But, I managed to just find the most comfortable undies and I then used a very thin layer of my non-soap cleaner for a moisturizer… it’s an emollient/moisturizer cream. It’s the only thing I’ve found that works to clean and moisturize and has no scents… I quickly get re-dressed, ready for work and out the door on time.
The day moves on, mild symptoms that are easily ignored. I did take a pyridium today because I need to know if it is urethra spasms and that’s why it feels deeper than just superficial a clitoral pain. I even remembered to call Hibner. I wanted to let him know the block only lasted a couple days, saying 5 is generous! I left a message for the triage nurse to document my increase in symptoms and see where we go from there.
Hibner’s triage nurse calls me right back and informs me they won’t officially record my symptoms and the block as failed until Two weeks post block. Hibner wanted to remind me that it could take 2 weeks to know if the shot will have any effect. I informed the RN to let Hibner know, I would call him in one week and he’d better be prepared to have the next step available for me immediately. I’m not waiting another week longer to get more movement…
I went on to further explain, now that I know PGAD isn’t normal and this isn’t a yeast infection and I’ve had a snippet of what a blocked and calm nerve feels like, I can’t go back! I won’t go back! Fuck- I don’t have to go back! They can’t and won’t dismiss me past another week. I’ll calmly wait until all clinical indicators agree the block was failed. Then we can prove to United Healthcare the block was unsuccessful, therefore, they’ll need to cover additional costly procedures/tests/surgeries.
I ended up sobbing, I had to pull over to finish my conversation. I tried desperately to explain — now that I KNOW this can actually be calmed, I will not accept dismissal. I know my body and I know that block didn’t work. I have felt nothing for 5 days- five glorious buzz free days and then a switch was flipped and now I have a buzz again that makes every urination painful, not to mention everything else in life! 5 days post procedure and I’m in a full PGAD flare again. No. Unacceptable. Now that I KNOW, I won’t go backwards!
I can’t and won’t accept a dismissal at this stage. I need help, I can’t live like this.
The RN stopped and apologized for seeming to dismiss me. She gave me her sympathy and kindness. She acknowledged that Hibner patients (any of their patients, really) end up with him after years of botched procedures and mis-diagnoses. She said we women warriors, us pelvic pain patients have taught her so much and while she’s never been a pain patient herself, she does want me to know they’re on my side. She will make sure Hibner knows what I need. She literally said- I hear you. I understand. I will ensure Hibner understands too.
I’m going to work with my Amazing #TeamDSouza PCP for an MRI. I’ll try to get it scheduled by Friday. I will have him order MicroGENdx test for my bladder. Time to find out what irritants are in my bladder. I want to be tested for Lyme disease- I’m curious to know if I was exposed as a little.
I’ll post an updated game plan on the next steps to attack the PGAD. I refuse to go backwards!
💛 #OldGirlintheEndoGame #suckitendo #endendo #endostrong #PGAD #PGADbadass #PGADisreal #pudendalnervepain #endometriosis #pelvicfloordysfunction #interstitialcystitis #MMJpioneer #almostopiatefree #marijuanapatient #TeamHibner #TeamDsouza #refuseLupron #anxietyanddepressionhurt