my experience with vaginal trigger point injections for PGAD and pain

[29Mari]

After several months of a terrible flare-up of my PGAD and PN(?) symptoms I received vaginal trigger point injections consisting of lidocaine and hydrocortisone. I will get the injections weekly for 6 weeks. I've completed two rounds so far. After the first round I was devastated as I flared even more, but since the second round my symptoms have reduced dramatically. Not gone, but more of a discomfort rather than the screaming pain and arousal I was feeling prior. I actually felt good enough to go for a long walk twice this week which I haven't been able to do in many months.

I've been trying to manage over the years with amitriptyline, muscle relaxers, Pyridium (Uristat), lidocaine patches, suppositories, massage, dry needling. Nothing has helped much if at all. PT didn't help and sometimes made things worse.

I am kind of in shock right now that my symptoms are reduced due to these injections after so many years suffering. I am afraid to be hopeful for longterm relief! I'll post my experience as the weeks progress.

[Violet M]

Hi Mari,

Glad to hear the injections are helping. Sounds like pretty dramatic improvement and I hope it continues!

Violet

[29Mari]

Thanks @Violet!

Yesterday morning about two hours before my 3rd round of injections I lifted something heavy which sent me into a huge flare again. I continued to flare all day after the injections. In the afternoon I applied a lidocaine patch to left vulva and clitoris which calmed things down and and by evening I was out of the flare and back to discomfort.

In nine days I get the 4th round. I will decide at that point whether to continue with these injections for the last two rounds.

[29Mari]

Still flaring badly. In one week I'm supposed to have the 4th round of injections but instead I may ask for a bladder instillation containing lidocaine or similar. When the PGAD flares my bladder is just as angry as my clitoris and left vulva. I started on Cymbalta and Gabapentin recently but they haven't kicked in yet. The Gabapentin really knocks me out and I am on just 300 mg to start!
I took Pyridium and a hot Epsom salt bath earlier and things have calmed a tiny bit.

[April]

Hi Mari,

Glad you had such a positive reaction to the treatment. Sorry about the recent flare and the bladder problems. It's so hard to know what will trigger it. Let us know how your next treatment goes.

April

[Violet M]

That's really disappointing, Mari. I had flare-ups for as long as a month after my injections and it can be pretty disconcerting. Hopefully your flare-up will calm down soon.
Have you tried gel ice packs?

Violet

[29Mari]

I had the 4th round of injections yesterday and so far so good! And not currently flaring. YAY!

I h

[Violet M]

I had the 4th round of injections yesterday and so far so good! And not currently flaring. YAY!

Great! Fingers crossed....

[29Mari]

Just mere hours after my last post I awoke around midnight with the beginnings of a flare starting in my left vulva. Uggh!!
I tried to push it out of my mind and go back to sleep but no luck so I took a muscle relaxer, Pyridium, and some Tylenol as well as my evening dose of Gabapetin which I had forgotten to take before going to bed. Things have calmed a bit.

Violet, I haven't found ice or heat to help for my flares. The arousal is so easily aggravated by any kind of pressure. With my very bad flares I get a bad ache in my lower ab just above the pubic bone, feels like a congested orgasm that is stuck there. Heat sometimes helps with that but, again, the pressure of the heating pad is barely tolerable :/

[29Mari]

I am circling back here to followup on how things have been since late June when I completed the 6 rounds of weekly trigger point injections:
My symptoms of pudendal neuralgia, PGAD, and lower left ab pain have been greatly reduced (by about 75%) compared to the months long flare-up I was in prior to the treatments that I started at the beginning of May.

So basically I am back to baseline. My baseline is still disturbing and extremely uncomfortable, maddening even, but now pain flareups are not *as easily* aggravated by my usual triggers (pushing, pulling, tugging, lifting, carrying, squatting, sitting/lying, touching, pressure, even just thinking , blah blah blah... so basically just life ). I've had two spontaneous intense episodes of PGAD ( the worst kind, the ones that assault you in the middle of night) but they lasted less than a day compared to weeks on end. So I guess I am pretty happy with the results and I would probably do it over again despite how incredibly incredibly painful the shots were. But I would ask for the injections to be the numbing agent only (I think mine was marcaine) and try leaving out the steroid after reading here that it seems to be ineffective in pudendal nerve blocks: https://pubmed.ncbi.nlm.nih.gov/39019502/


I should also mention that at the time of the first injections (beginning of May) I started Cymbalta 30 mg (duloxetine) but stayed on it for only 2 months because it caused me severe jaw clenching, especially at night. Later in May I started Gabapentin but only worked up to 300 mg bid before discontinuing because it caused such severe fatigue, cognitive fog, and apathy. Lastly, I started on Wellbutrin XL 150 mg (bupropion), which I have been on for almost 2 months, but will probably discontinue (albeit slowly) because I have not noticed any major or long-lasting changes in my baseline symptoms while going on and off any of these meds over the past few months....AND I read that Wellbutrin is one that can CAUSE AROUSAL rather than suppress it. Ugh. Not sure why I was prescribed it. In the past, Prozac 20 mg worked pretty well with no side effects but eventually became ineffective in suppressing my symptoms. I might try it again but at a higher dose.

So that's the update. The OBGYN I've been seeing is a pelvic reconstruction specialist (she did my prolapse repair surgery in 2023) and seems to be highly skilled. Unfortunately for me she got a job in California after my last appointment so I'm not sure what the future holds as far as my medical care and symptom management. In October I'm scheduled to see another specialist at the same clinic so we'll see where things go from there. Botox was mentioned at one of my last appointments. I guess it will depend on what I am open to should my symptoms become intolerable 24/7 again, and how willing I am to travel, as this clinic is a 10 hour round trip drive for me! I guess that shows what level my PN and PGAD were at that I was willing to drive 5 hours and suffer through those painful injections then hop in the car and drive 5 hours back home. SIX TRIPS. I seriously don't know how I pulled that off. I was so desperate for some relief.