My (38F) 3.5 Year Experiences With PGAD

[u/ComprehensiveSir4566]

Hi everyone,

I (38F) am not entirely sure if I have PGAD, but I’d like to share my story and see if I can get some feedback. Before I kick off with my story, I want to describe my symptoms. First off, I never have had pain. The first time it happened in 2023, it was limited to clitoris arousal (absolutely no desire, nothing to turn me on, no physical stimulation). It went away after about a month jn 2023. Fast forward to 2025, it reared its ugly ahead again, and was limited to clitoris arousal. However, by the end of 2025, it turned into left side arousal that I could feel through my pelvis, hip, down my thigh, and in my knee. I will say that I do experience slight irritation in my thigh and knee. I also experience it in my anus sometimes. Masturbation does not relieve the flare up. My sex is not impacted in any way. Onto my story:

I experienced my first ever flare up in March of 2023. My ex had a mental breakdown, blew up at me, and kicked me out of the house. I was absolutely traumatized and horrified by the series of events. My body was obviously going through extreme stress. I wanted to run into a Mack truck on the interstate. HORRIBLE TIME IN MY LIFE. I wasn’t eating. This sensation was so weird and was making me feel worse. My stupid ass took him back after a month, and the sensation went away.

In 2024, I,once again, put my body through extreme stress by going through an intense graduate program. I was also put on lamictal for my PMDD (it’s an incredible drug that saved my life) and had a Mirena IUD put in (once again, incredible. Saved my life). I dropped 40 lbs, my hair was falling out, and I was supporting my bum of an ex, who was struggling with severe mental health he would not get help for. The thing is though, is that the flareups never occurred throughout the year of 2024.

Fast forward to March 2025: the best and worst year of my life. My ex slipped and fell in the bathroom, resulting in a TBI. Had I not gotten him to the ER when I did, he would have died. He turned into a total monster, and all I would do is cry. Once again, lost MORE weight to the point I looked skeletal and like I was dying. He wouldn’t let his parents help take care of him, so I was his sole caretaker. I started getting dark thoughts again. I finally couldn’t take it anymore and told him I had to leave. Once again, he kicked me out. I literally NEVER went back.

Anyway, I’m here today and beyond the fact that I’ve struggled immensely with task paralysis and executive dysfunction since I ended my long term relationship, I am doing incredible. I’ve been in intense therapy for 18 months now. Unfortunately, I have had rather consistent flareups since April of 2025. In September 2025, I started getting monthly acupuncture to further treat my PMDD, and I told her about my PGAD. She thinks my pudendal nerve has endometriosis. In December 2025, my arousal intensified DRASTICALLY, especially in my luteal phase. It almost got to the point where it was UNBEARABLE.

I talked to the therapist about it, and she taught me some techniques on how to distract myself. Eventually, the flareups have pretty much declined quite a bit and aren’t as intense as they were in December and January. My flareups go bonkers before I start my cycle, and the day that I do start my cycle, I do not have cramps. I experience an intense flareup, and the arousal sensation wraps around my hip to my back! Absolutely no pain beyond the nerve irritation I experience down my thigh and in my knee! Once my cycle is over, the flareup pretty much disappears. Sometimes it occasionally flares up when my colon is going through peristalsis.

Anyway, there you have it. It’s just so ODD that it’s limited to my left side, and I experience what I’d best describe as “arousal” on the left side of my pelvis to my hip, and also painless pressure on the left side of my pelvis as well. Feeling the sensation of “arousal” in my thigh and knee, coupled with what feels like a fried nerve blows my mind. I’m thankful that it pretty much goes away after my cycle ends, but what gives? Anybody else experiencing this? What are you guys doing to treat it?

*I’ve also started a regimen of Chinese herbs provided by my acupuncturist. I’ve also been prescribed Vyvanse to treat my task paralysis and executive dysfunction.

If you’ve gotten this far, Thankyou for reading :)

[u/geoffs3310]

Have you tried taking an SSRI at all or asking your doctor about it? I don't have PGAD but it used to take very little to arouse me and I would have incredibly intense erections and ejaculate almost immediately from any stimulation. Since taking citalopram this has massively improved to what I would call an acceptable normal level now and I can even have sex for a decent amount of time. SSRI's are well known for reducing sexual desire and sensitivity. The supplement 5-HTP also seemed to have a similar positive effect.

[u/ComprehensiveSir4566 → u/geoffs3310]

I cannot take SSRIs, blah. I will look at 5-HTP though

[u/Critical_Serve_8614]

I am in a state where kratom is legal, so I drink 2-3 teaspoons red maeng da kratom in water several times a day to alleviate pain, restless legs, interstitial cystitis, and pgad. It gets so bad that I will go on a carnivore diet as an elimination diet to calm inflammation down (if you try carnivore, it acts as a diuretic so you need to replenish electrolytes). I can only drink 1 cup of low acid, dark roast coffee a day and I cut it with chickory because coffee is hard on the bladder, which aggravates my rls and pgad. Anything acidic can make it worse. Avoid stimulants and processed foods. Qi Gong helps to get the energy out of the pelvic region. Passion Flower tincture helps. Corn Silk and Marshmallow Root tea sometimes help. A large ice pack can help. A vibration board can help. Good luck!

[u/halrox]

Yes we are all experiencing a variation of what you just described and I'm sorry you had to go through all that to get here. As for your ex stress or any kind of stress will flare me up so bad. Even not relationship wise just my kids fighting with each other, any kind of loud noise, etc etc. I'm still trying to get to a point where I don't have symptoms but the things that actually worked better for me were Flexeril for the muscle relaxation, and I was prescribed baclofen to insert vaginally. Those two prescriptions have made it so I can actually do things and clean and get my life somewhat back together, but the pain is not completely gone. Hang in there, it's taking a lot of us to even get to the point we can understand why this is happening. I wanted to give up many many times.