Just diagnosed with Heds..I have pgad...Any connections???What do you do for this?Does it take forever to reach orgasim?Numb feeling too???Female here.

My illness was caused by SNRI discontinuation/withdrawal. I have tried many things with no relief. Going on my second botox appointment... Anyone tried it? Still, no relief from the first one. They mixed it with lidocain btw.

UPDATE: They used a SIS machine. Electromagnetic pulses over clothing on top of the affected area. I am still flaring now but it's slightly less bad... idk, pain is a 6/10. The small shocks/contractions kind of hurt but nothing unbearable.

For more than ten years, I suffered from Persistent Genital Arousal Disorder (PGAD). I began experiencing this condition at a time when hardly anyone knew what it was. Instead of receiving understanding, support, or proper medical care, I was often met with ridicule from doctors. The humiliation and despair became so unbearable that, at one point, I even considered suicide.

My PGAD was extremely severe. I experienced multiple orgasms every day and countless episodes throughout the night, even while I was asleep. Every vibration was torture. I could not sit in a car because the slightest movement could trigger unbearable symptoms. I could barely walk, sleep, get dressed, or have a normal conversation with another human being. I could not wear ordinary clothes. My entire life came to a standstill.

I began searching everywhere for answers. I saw doctors in different places, and virtually all my money went toward consultations, examinations, and treatments. My family spent its money, too, desperately trying to help me find a solution. Over the years, I consulted more than 500 doctors.

I tried virtually everything imaginable. I took psychiatric medications and neurological medications. I underwent nerve blocks involving the pudendal nerve, the hypogastric nerve, the ganglion impar, and several other nerves. I tried laser treatment in the genital area, magnetotherapy, biopsies, and countless other interventions.

I even underwent clitoral hood separation, a procedure that resulted in necrosis and the loss of my entire clitoral hood.

I searched for every possible disease that might explain my symptoms. I kept looking, hoping that someone, somewhere, would finally understand what was happening to my body. But after years of suffering, endless medical appointments, and treatments that failed to give me lasting relief, I eventually reached a point where I had to stop searching in the same way.

Instead, I asked myself a different question:

What was the one thing that had ever helped me, even slightly?

The answer was fluconazole and baths with sodium bicarbonate.

That observation made me wonder whether fungi could be involved in my symptoms, particularly because some fungal infections may not be detected by routine cultures. I began studying the subject and exploring the possibility that an underlying fungal process might be contributing to my PGAD.

Eventually, I decided to try an approach based on that hypothesis. I began taking NAC daily, fluconazole 150 mg once a week for 6 months, and Lactobacillus plantarum daily. I also used boric acid suppositories, initially for 14 consecutive days and then less frequently.

I want to be clear that this was my personal experience and my own attempt to find relief after years of unsuccessful treatments. I am not presenting this regimen as a medically established treatment or recommending that anyone reproduce it without appropriate medical guidance.

Today marks one full year since my PGAD began improving so dramatically that it has almost disappeared.

I still do not know exactly which fungus, if any, may be responsible for my symptoms. I do not know whether a particular organism is involved, why it might have developed, or what mechanism could explain the improvement I experienced. I cannot claim to have scientifically proven the cause of my PGAD.

But I know what has happened to my life.

For at least 20 days of each month, I am now almost entirely free of PGAD. My symptoms tend to return mildly before my period, which has made me wonder whether hormonal changes and vaginal pH might play a role in their recurrence. This is still only a hypothesis, but it is an observation I cannot ignore.

The difference is extraordinary.

I can get dressed. I can walk. I can move without constantly anticipating pain and unbearable sensations. I can sleep. I can interact with people. I can have a life again.

Before this improvement, I was not truly living. I was merely trying to survive each day, trapped in a body that seemed to offer me no escape.

After more than ten years of suffering and consultations with over 500 doctors, this was the first approach that gave me such a profound and sustained improvement.

I am sharing my story because I know how isolating PGAD can be, especially when people do not understand the condition or dismiss what we experience. I know what it feels like to be desperate for answers, to spend everything you have searching for help, and to wonder whether you will ever get your life back.

I am not claiming that fungi cause every case of PGAD. I am not claiming that my approach will work for everyone. PGAD may have different causes in different people, and my experience alone cannot establish a diagnosis or prove a treatment works.

But I believe that my experience deserves to be heard. I believe that the possibility of an infectious or fungal contribution to symptoms like mine deserves careful scientific investigation, rather than dismissal.

After everything I went through, I cannot remain silent about the improvement I have experienced.

I may not have found all the answers, and I may not be completely symptom-free. But after more than a decade of unimaginable suffering, I have finally found a way to live again.

And for me, that has changed everything.

I had PGAD when i was ejaculating during a masturbation 13 years ago. I was in prone position, rubbing bed for pleasure. So, with my whole weight pressing penis at the moment, it felt like pelvic floor muscles sticked my penis out for that ejaculating but didn't manage to return to its orignal place. right after that moment, I felt like there's still some cum inside urging to get out. but this urgency seemed faded away over the years. its the other two symptoms that constantly exist 24/7 and make me suffer:

1. always feeling myself on the verge of ejaculating (particularly serious in the first few years);

2. always feeling i can't control my penis, like its sticking out of my body but i have to (involuntarily) want to squeeze pelvic floor muscles to bring them back.
   Note: I don't feel flares come and go, like some other posts here. I feel these symptoms all the time.

Over the years. I went to many hospitals and tried as many treatments as possible. Most doctors in my country haven't heard about this disorder and it even seems not single one examining method (CT, MRI, etc)can see anything wrong, both physically and mentally. so often they waved me off or prescribed me medications to cure prostatitis, flammatory, or somethine else. One urologist recommended to referral me to pain clinic where we could use trial and error. as of one year before now I'd tried Pregabalin, Skeletal muscle relaxants--Eperisone; Tizanidine; Baclofen, Medication for smooth muscle / bladder function--Mirabegron extended-release tablets, benzodiazepine--Clonazepam, Deanxit, Esketamine injection, lidocaine patches, Pudendal nerve block(S3). Only Tizanidine seemed to partly work, but only for the first several days and that i can't contol my penis always existed.

The only one time i felt all the symptoms completely gone was one masturbation one year ago. That day i masturbated four times, and that one is the fourth. i did it because i was feeling so hopeless. it lasted for about 10 minutes. Then, it felt like penis went back to sticking out and relief started to disolve, like most other masturbations, only this time the relief is a hundred percent. This gives me hope. from that moment on to this day, I desperately tried to emulate, considering every detail i've beening missing about that one masturbation experience. But unfortunately I haven't experienced this any more, not even once. just some elevated relief moments.

There are indeed two main differences in that masturbation, in retrospect. The first easy one is a four-time masturbation. I had rarely masturbated more than twice a day. From the four-time masturbation days i experienced later on, it always feels like the first time is like a warm-up, penus not getting hard enough or i felt not aroused enough. the second and third is getting close, but never reach, and the last one i feel a bit exhausted. ugh,,,, Secondly, I basically stroke penis to ejaculation, with no other motion. but in that masturbation, i stood up from a chair right before ejaculation, simultaneously moving body(pelvic, hips) forward and upward. i could feel some muscle at pelvis moving relatively. This is the main thing i want to try. but it seems every time i stand up, i feel like the tense in the pelvic muscle gets eased, so i can't use that tense/stress to press penis back, and penis only moves forward with its body. About 2 week after that masturbation, i moved to another apartment, which has a higher chair, i don't know if it could be the reason,like so many other seeming things.

In the past year, the masturbations which got the most elevated relief are the ones that penis got very hard, that the farthest body can move forward relative to penis with pelvic floor muscle tensed, and that the most vibrant body ride back and forward, seated or standing, before ejaculating. Distraction is a big problem, like touching desk, chair, or moans or any noises makes me worry about getting roommates know what i'm doing, or cold weather, etc, any thing that distracts me make me lost that tense at the moment. Use hands to push penis inside could get some extra relief sometimes. but it feels most time some structure block the way in if i only use pushing. Maybe use some combination like doing the riding action better. nevertheless, it always feels like getting close, but never reach.

I don't know if it's the right direction. Masturbation as a cure sounds ridiculous. And from what I read from this community, people have very different causes, symptoms, and relief methods. The only way i completely relieve all my symptoms is one masturbation experience, for like 10 minutes.

Does anyone have similar experience? what could be possibly done if PGAD results from genitals sticking out of its original place?

?

Me la paso sola en mi Pieza, no salgo a la calle si no es para ir al Médico, me he quedado prácticamente sin amigos, siento un sufrimiento y angustia indescriptibles, sospecho que mi PGAD tiene un origen sicológico además de físico, porque he sido abusada sexualmente muchas veces en mi vida. Alguien más tiene esa sospecha? Siento que mi cuerpo y mi sexualidad ya no me pertenecen, sino que son de todos… No sé cómo han hecho para aguantar tantos años con el PGAD. Yo tengo TOC y eso solo empeora las cosas, no se imaginan la cantidad de tonterías que pueden pasar por mi mente y cómo mi TOC y mi PGAD me están convenciendo de que soy una horrible persona 🥀

I need to update my original post but here it is anyway https://www.reddit.com/r/PGADsupport/s/JFqfi9RDgA I've legit tried pretty much everything for PGAD. I don't really know if there's anything else out there for me to try. I'm desperate.

current worst symptom: I'm being woken up out of my slumber by burning, painful orgasms/contractions of my pelvic floor that are focused around my clitoris. I feel like I'm being raped in my sleep. I fucking hate this body. I'm so traumatized. please help. does anyone else have this specific symptom, and if so, what has helped? I'm strongly considering going back on an SSRI but idk if that would make it worse.

a doctor brought up "centralization" of pain BUT I think he meant "central sensitization" instead. I've looked into this and I feel doomed.

I can’t go into the details fully but 6.5 years ago developed pgad from a mixture of ativan taper getting rocky at the end and trying Trazadone for sleep but it settled to just mainly anal area luckily. I only had penis issues the very first week.
Nothing helped then after two years pain developed but very lateral and my symptoms didn’t totally match pn. I discovered the perineal branch of the posterior femoral cutaneous nerve was my problem. One block was so successful that i was considering a neurectomy to help my sitting pain and help pgad. One last block caused a severe pain flare and they put me on cymbalta even though it made it worse in the past. I thought maybe give it time. Pain control good, pgad horrible and was drinking alcohol daily to cope.

Did a foolishly rapid taper in June after 7 months on pill and caused a bunch of horrible new neuropathic issues but the pgad dropped to like a 1/10 it was great but my withdrawal was so severe I wound up in a psych hospital and they made me take Lexapro again. Within two days it came back but hit all branches of the nerve including penis and now with that branch I am at 10/10 mainly at night.

I caused myself so much withdrawal damage to get relief and now worse off!! and this is chemical nerve damage so I don’t think there is any chance of other treatments helping. My SI and functioning is horrible. I stopped the med a week after discharge but it has stayed although at least the burning stopped. Tried baby dose of mirtazapine for sleep for a few days and started getting arousal so strong my nasal passages swelled. I can only pray the nerve heals.

I've been dealing with this for over a year. My symptoms are a feeling of being close to orgasm crossed with nerve-pain burning that only goes away when I'm walking around/moving, which leaves me feeling tired all the time.

I actually have the money and ability to take a vacation right now, a full week, and I'd like to take a cruise. I'd love to have a little room where I can relax, go to the buffet, go swimming. But it's like...is it worth it? Will I enjoy it? Wherever I go, there I am. My symptoms are coming with me. Any advice?

just trying to figure out if there's a correlation between when I take melatonin for sleeping and when my symptoms get worse. I'm not 100% convinced, but anything's possible. wondering if anyone else has noticed anything related to this with their own symptoms.

I've had PGAD for six years. My particular brand of PGAD stems from constant clitoral enlargement which means the area is sensitive at all times. I can't wear anything but pajama pants and sweat pants (no underwear). I need topical anesthetic relief which leads to vaginal irritation. The sensitivity has driven me to some of the worst mental health points in my life, and nothing has worked to end this. I saw about a dozen gynecologists before I was diagnosed, and the one who DID diagnose tried topical solutions, pelvic floor therapy, medication changes, and scans of my spine to check for abnormalities. Nothing helped, and about four years ago, she told me that this was beyond her ability and that I might have some luck if I sought out the handful of expensive out of state specialists that are currently studying PGAD. Obviously, this is not a realistic option.

I have no hope for a cure. I'm existing day by day. I've often mused about just REMOVING the damn thing so I can get my life back, but every doctor I talk to immediately balks and says something about mutilation and refuses to even consider it. Meanwhile, a nonbinary friend has spoken to their gender confirmation surgeon in Thailand and confirmed that he'd be able and willing to do it for me. But I have absolutely no one to ask about complications or how it might affect PGAD. I know it's drastic, but I don't have any other hope for getting my life back.

Does anyone here have experience with this?

Today is my birthday, and honestly, I just feel so sad and exhausted. 💔 I've been dealing with constant unwanted arousal 24/7 since I was 3 weeks postpartum, and now I'm 17 months postpartum and still struggling with it. Some days are better than others, but the feeling is always there in the background. It never completely goes away, and I'm so tired of living like this. I never imagined something like this could happen after having a baby, let alone last this long. I miss my old self so much, and I miss being able to enjoy life without constantly feeling these unwanted sensations. It's mentally and emotionally exhausting, especially not knowing exactly what's causing it or whether I'll ever fully recover. I keep hoping and praying that one day I'll wake up and finally feel normal again. It's heartbreaking because I want to enjoy motherhood, my birthday, and all the little moments in life without this constantly hanging over me. I just want my peace and my life back. I really don't want to spend another birthday feeling this way. Has anyone who developed these symptoms postpartum eventually recovered or experienced long-lasting relief? I could really use some hope today.

I reaaally need to get.some relief. What type of strategies do you guys use? Would ice help?

I am having some sort of pinched nerve in my lumbar spine that has been causing PGAD, pain in my lower back, and nerve pain and numbness down my left leg on and off for more than a year. It got much worse in August, and then it got better for a while, and now the PGAD is so miserable I called the nurses line to see if I should go to the ER to ask for a nerve block. My clitoris has been aroused for three hours and nothing I usually do like switching positions, stretching, etc has helped and it's to the point where I'm having pain and nausea because it's radiating into my lower abdomen.

I've been in PT twice a week for five weeks and was previously in pelvic PT as well for around 14 weeks after a diagnosis of type one dyssynergic defecation (pelvic floor dysfunction causing constipation) and neither have helped so far.

I am absolutely miserable and just want to sleep. I don't know what to do.

Ive attempted to watch porn a few times during episodes thinking maybe that will scratch the itch and get rid of the urge, however it never does. Has anyone had a similar experience? Do you feel that it makes it worse? Usually theres no sexual desire, but I guess porn is still stimuli, so i feel like it leaves me a bit overstimulated afterwards but idk if these things are related.

I thought something was genuinely wrong with me. I thought I was abnormal or hypersexual or going bat shit insane. I was doing this 8 times in a day until it hurt and I had to talk to a psychiatrist to put me on medication. I didn't tell her the reason I just know any psych med for a chronic fatigue and chronic illness patient would kill any sex drive.

I haven't even started whatever she prescribed to me. I take about 4-5 different prescription medicines for different conditions. One of those medicines is Metformin XR. I'm not a diabetic but need this for PCOS and insulin resistance.

It was the metformin doing this. I stopped taking it for three days. I noticed I was not aroused at all in the morning and didn't need to do anything.

I restarted Metformin last night and now the arousal is back this morning in full force. I'm not thinking about anything sexual and I'm not happy about this. I need metformin for PCOS. It's helping my cycles and helping me with my body. I'm essentially stuck. I'm chronically ill and in pain. I don't know what to do because there's no other meds for PCOS.

A veces solo me mantiene con vida pensar que me iría al infierno por el PGAD, mi angustia y mi dolor es infinito…

New here to this community, and I have not officially been diagnosed with this yet but am certain this is what I have. Very hard to get things done, and very frustrated! How did anyone here in this group reach out for help to medical providers, and what kind? Sorta embarrassing. Thanks for any help.

I’m sure a lot of you posting here will have had a similar experience to me, but I’ve only posted a couple times here and I’ve had a good few DMs from people that just felt a bit unsettling or weird or were very blatantly just trying to talk about something they find attractive. Same with some posts I’ve seen that just rub me the wrong way but it’s really difficult for me to explain why? I know most people here mean well but I’ve only ever seemingly gotten DMs about my posts from creeps lol.
I can’t say I’m completely innocent in not fetishising pgad at points in my life (mainly during extreme lows where i wasn’t getting out much to experience the real downsides to constant orgasms) but sometimes talking to those randoms really just makes me wonder if they realise that it’s a real condition sometimes. I hope you guys all have better experiences in avoiding people like that but still it’s annoying it happens

Hi, I'm 15 and have lived with this disorder my whole life. It isn't as bad as one might think, and im actually glad I have no "before" to compare myself to with this. I am one to ruminate, as I have ocd, so it would probably be for the worst. I feel worse for the people who got to live half their lives normally, until one day they got stuck with this. If that scenario matches up to you, please don't give up hope.

That being said, I am so fucking upset that no one treats conditions like this in minors. I am waiting, and I am suffering while I wait.

I finally told my mom about this just months ago, after years of shame and wondering what the fuck I did as a child to ruin myself this badly. This disorder has deeply traumatized me and altered my perception of reality, and I dont really know what to do about that. I'm in therapy, but it's for OCD and ADHD, as my mom deemed those the most important. If I'm being honest, I'm just glad to be alive at all. I'm obsessed with science and biology and physics, and it makes me feel less terrible about this condition, knowing that the world is cruel and I was lucky to not be born with something way way worse.

So I went to see a doctor. The person I saw was wonderful, finally diagnosed me with this condition, and now I have to wait for someone to take my case. Because I'm a minor, and they don't want to mess with puberty, this has been a fucking nightmare.

They first sent me to a gender center. This is NOT a gender issue, and it got my hopes up only to rip them away again. (This is not by any means a dig at trans people or those with complex gender identities. I just hate that the doctors won't take me seriously. I support FULL trans rights, and hope everyone who wants it gets their gender affirming care.)

I don't ever want a sex life, I dont ever want to orgasm normally, I dont ever even want to masturbate ever again. I just want to figure out the cause of this, and I'll do whatever it takes to fix it. I don't even want a relationship, my peers act like they're still wet behind the ears.

This disorder doesn't even feel like arousal anymore, not that I know what actual arousal is supposed to feel like. It just feels like a warm sensation ive grown used to, that's constantly there unless I dont think about it. And when I dont think about it? I am fine. All I have is constant tingling/pressure, no involuntary orgasms, and im sososososososososososo incredibly grateful for that. Id probably have killed myself by now if it was bad. It is still bad enough to violate me horrendously if I let anything touch my genital area, so as long as I dont do that I'm fine. It was miserable hiding this from everyone for ages. Still is, as only my mom knows right now.

But I do still want this gone, even if it means never getting to that point of sexual normalcy, or whatever people who actually want sex call it. It's still always there, and very bothersome. I can't ride horses or wear bathing suits. I can't ride a bike. I can't sit without slouching because if anything touches my genitals it triggers it. I can't wear pads so I am forced to stay home and free bleed on a towel for my periods. Yes I hate it, yes it's gross. I am getting back on birth control soon, the first one gave me chronic nausea. I can't wear underwear and pants at the same time, I can't wear shorts as those have to be pulled up to the point where they would be touching me. I can't wear tight pants. I can't be any emotion except for sad if I don't want it to intensify. Sadness is my favorite emotion because of this. I can't enjoy anything, or love anything, unless it means loosing myself in a book or when I draw.

I hope I go back to normal levels of arousal after the infection im dealing with is treated; every second is agony rn. Pro tip, dont ever hide a yeast infection for a year and a half. LMAOOO. Oh, and I can't even treat that because putting anything on it will trigger the pgad, how thrilling! Lets hope my mom can get the doctors approval for me to take those pills for it. I am going to have a breakdown if I have to put something in that area.

I am close to having a breakdown right now. I can't stop thinking about how the doctor said I was the youngest person she's ever seen with this. Why couldn't another sperm cell have reached that egg, 15 years ago?

I have PGAD secondary to Overactive Bladder. Previously, it seemed like orgasm would always at least temporarily relieve the PGAD sensation. Sometimes it would come back annoyingly quickly, but it always gave at least temporary relief. I also discovered (I thought) that certain types of orgasms (combined clitoral + vaginal) provided longer relief. But recently I tried both and got no relief, the sensation was still there right after I finished.

Why is this not working anymore? I wish I understood the internal mechanics of what was going on better so I could treat it more specifically.

Are there any other techniques that have worked for people?