My 5-Year PGAD Journey, What do I do now?

[hurdtheword]

January 2016
Started having painful arousal sensations in my clitoral area that were so severe I had to go to the bathroom at work and masturbate just to get some relief. The relief only lasted minutes and pain would flare up again.

What made it worse?
-Driving in bumpy car/sitting
-Sex

Medical Journey 2016:
-Went to a neurologist who did MRI to check for Tarlov Cyst- came back normal.
-Went to an OBGYN whose nurse literally LAUGHED at me and said that sounds like a good problem!
That same OBGYN had put a Paragard copper IUD in me for the 1st time 6 months prior… they removed it and said the pain might go away, but it did NOT.
-Went to a pain doc who prescribed Skelaxin, did not take it due to fear of side effects (I was a teacher at the time.)
-Told my psychiatrist, she had prescribed Clonazepam and Ativan way prior PRN as needed, and separately taking those when pain got severe was only med that temporarily alleviated PGAD symptoms.
Summer 2016:
Pain became intermittent with less anxiety during summer
Fall 2016:
Started stressful job teaching in the ghetto (middle school) pain flared up again. Went to doctor for anxiety attacks who temporarily prescribed Clonazepam. That would immediately make the symptoms of arousal go away for the next 7 months. I would take it at work and within MINUTES symptoms went away.

2017:
Clonazepam stopped working but now I’m just taking it for anxiety 2 mg twice a day.
Got on Effexor in Feb. but that didn’t help PGAD symptoms.
Went to an OBGYN and he said I might have endometriosis (mentioned some painful periods.)
Went to Urology San Antonio and saw a urologist who prescribed Amiltriptyline oral route.. helped take pain from an 8 to a 5 but drowsy all the time.
I started laying around a lot because activity in general flared up pain. Started gaining massive weight.
Urology San Antonio referred me to a physical therapist Emily Hood, she did good work with me but I was very depressed so I wasn’t keeping up with exercises. She didn’t do manual therapy but once, which I noticed helped me more than squats, etc.

2018:
March: got an endometrial ablation surgery, which confirmed a low level (2) endometriosis. Obgyn said that’s what’s causing pain so did 2 rounds of Lupron injections spanned out 3 months apart. Lupron made symptoms worse, plus hot flashes and mood swings worsening. OBGYN prescribed me Dilaudid but stopped after 2 refills.
Changed OBGYNS after Lupron experience frustration.
Still saw PT and got a pudendal nerve injection from urologist. Didn’t help.
Was drinking alcohol to numb persisting pain- that helped me forget but bad choice. Psychiatrist put me on Naltrexone, eventually stopped drinking.
PCP referred me to Dr. Borsch at Precision Spine and Pain Mgt. and he continued with the Dilaudid(hydromorphone) 2 mg every 4-6 hours as needed. It was making me “high” and forgetting about the pain for about 4 months. Terrible side effects, weight gain, etc.


2019:

Weaned myself off Dilaudid and called 911 in February 2019 due to immobility as a withdrawal.
Was transported to the ER and refused narcotics…
Got a Ganglion Impar Block from pain dr., didn’t help at all.
2 months just smoked ecigs (picked up while withdrawing from Dilaudid) to help me forget about the pain. Nicotine helped decrease my pain awareness…
In April 2019 went back to Dr. Borsch and saw his NP Emily who started me on Nucynta 75 mg every 6 hours as needed. Was taking it 3-4 times a day. Gave me a “high” feeling and decreased pain awareness about 4 notches, but wasn’t helpful.
After 4 months of taking Nucynta the NP put me on Hysingla ER at night, and said to take Nucynta for breakthrough pain. I didn’t stop Nucynta and neither helped just made me feel high.

2020:
Taking Nucynta. Still on Clonazepam and Effexor.
None are working too well.
March:
Began drinking when COVID hit, for increased pain needed relief.
New OBGYN put me on hormone therapy… caused UTI’s, got off it after 1 month.
Summer 2020:
Admitted to rehab to wean off alcohol and benzos and opioids…
Was doing a LOT of therapy and weirdly symptoms disappeared the whole 30 days of rehab and for 2 weeks after?
Fall 2020:
Started new work in job/stressful teaching new subject areas. Got back on Nucynta because pain started up again. Got back on Skelaxin. Skelaxin at first worked but crazy side effects waking up in the morning.
Smoking ecigs to distract from pain.
Researched Pelvic Rehabilitation Medicine in Houston. Saw Dr. Gabriel Daniel who did a series of steroid/lidocaine pudendal nerve guided injections. They caused what my PT called “Charlie horse in my pelvis”. Then they decreased the hypertonic pelvic floor, for about 3 months.

2021:
Quit job Jan. 26, too much stress and I was having worse pain.
Dr. Daniel prescribed ketamine, which I thought was a miracle cream at first, but then I just started feeling high from it and became used to it, and it stopped working 6 months after using it. (February-July)
Summer 2021:
Started physical therapy at UT Health San Antonio with Emily Flieler. It is helpful.
Fall 2021:
After 2 pain docs found one non-narcotic place, Dr. Jonathan Chin in Austin, TX who did a pudendal nerve injection in my sacral intra-rectal route. The lidocaine immediately helped calm the PGAD stuff so I knew it had to be the pudendal nerve. He diagnosed me with pudendal neuralgia.