PGAD - persistent genital arousal disorder

[Coz1990x]

Thankyou!
I'm going to have csection, booking it Tuesday. Yes I was essentially cured from PGAD and pudendal pain.. the only thing flaring it is pressure from late pregnancy. Please do not loose hope if this is your first bout of PGAD. I would recommend pregabalin if it's really bad, helped take the edge off for me. Obviously I weaned off and was cured until I became 6 months pregnant. I'm hoping for some pelvic physio after my csection and I shall be back in a good place with minimal flares from the nerve meaning no pne or PGAD!!

If anyone is in despair please do not worry to much, I honestly nearly ended my life and I frantically searched the internet for success and positive stories.. now I've become one. Please it does happen you will be ok xx

[sadie]

Coz congrats on the baby and i agree w steph about c section. I know women that have gotten pgad after a difficult birth causing pgad and still have it 30 years later. So i would check w your dr. since you seem prone to get pgad...and u may want to consider a c section. I love your attitude and wish you the and your new baby the very best . GOD be w/ you. Fondly sadie

[Maisy94]

Hello.
I think i have this condition. About 4 days out of the blue i just felt sexually aroused all day.the feeling still hasnt gone away. I was taking sertraline untill 8 weeks ago for anxiety.
I cannot sleep ive had 8 hours sleep the last 3 nights. I keep crying and worst of all my anxiety has came back with a vengence.

I spoke to the doctor and she told me to wait and that there was not anything she could do to help.
Is there any one in the East of England that can help.

[Amethyst]

Hi guys, I have been on this forum for a while but only just now decided to sign up and share my story and hopefully find some help as well as help others with my own experimentation.

I developed PGAD out of the blue about 8 years ago. I was masturbating using only clitoral stimulation, and was doing nothing out of the ordinary or harmful. I was young then, and I didn't do it much, but was beginning to learn about my body. After I had an orgasm, I noticed for the first time I didn't have that "done" feeling. Prior to this I never really worried about orgasms, I would just have one and it'd be fine and I'd move on. This time I think I ended up having 3. After that, I kept feeling like I had to pee but couldn't. I can remember what not having PGAD was like, but just barely. All I know for sure is that in that moment, on that day, there was a switch up in my body that never let up, and I don't know why.

From then, I waited about a week and thought maybe I had a UTI or something. It was a terrible flare and I felt so uncomfortable the entire time. I went to see my doctor and he kept putting me on UTI medications/antibiotics (which brought me an entirely new set of problems, unrelated to PGAD, and made me very unwilling to try any other pharmaceutical drugs). They didn't help at all. From there, I saw a urologist who looked into my bladder and didn't see any issues other than a possibly narrow urethra. The Urologist told me it was being caused by my anxiety and depression. I do have an anxiety/panic disorder (which is now well managed) and have depression, but a lot of this is because of my PGAD. After the urologist, I gave up for a few years and previously frequented a Yahoo PSAS forum, which just made me feel awful every time I read it. Back then, there was next to no information about PGAD out there.

Fast forward to 2015, I began feeling certain pelvic pain. Unlike the PGAD, it does come and go, and there doesn't seem to be a rhyme or reason to when it occurs. Sometimes its induced by sex, sometimes it's induced by not having sex, sometimes exercise, sometimes not, months without then a flare, and the list goes on. The pain I experience is almost like a "bruised" clitoral feeling. I have had some sharp, lightening type pains too, but the most consistent when I am having a flare is the "bruised" feeling and pain when touching the clitoris, even lightly. it gets worse with anxiety, as most things do.

after this, I was referred to a gynecologist, who then referred me to a women's hospital nearest to me. From there, I met once with the gynecologist, physical therapist, and attended a course about pelvic pain. None of these helped me, but for the first time, I was actually acknowledged to have PGAD, and that's where I was diagnosed. It was such a relief to have somebody say it, and not have to convince them. The doctor said she had been attending a seminar about PGAD recently, and although she isn't super familar, she gave me hope that more and more doctors will recognize this condition.

THINGS I'VE TRIED/am trying SO FAR:

As of now, I've begun going back to my GP (a new doctor, who isn't familiar with PGAD but is very sympathetic and she actually keeps doing research for me about this condition as much as she can!) and I allowed myself to try medication.

- had a pelvic MRI with no issues found.

-At first, I went on Cymbalta (30mg for 2 weeks, then 60mg for a while.) Unfortunately it did not have any effect on my PGAD, other than making having an orgasm difficult. I will say that I think it lowered my libido (which, who even knows what that is with this condition?) and I was able to masturbate or have sex only once per week and not feel too overwhelmed with the PGAD. It was still there, but I think that it was SUCH a chore to achieve the orgasms (I usually have to have at LEAST 10 to feel normal, sometimes more), that I just couldn't bring myself to do it anymore. Overall not the worst experience, but it just wasn't for me.


-I just began lyrica (pregabalin) yesterday at 25mg morning and night and will up my dose by 25mg each week. I want it to help me, so I am holding on to hope, and want to let anybody considering it know my experience with it regarding PGAD.

-I've tried reiki a few times. It doesn't seem to help my PGAD, but I am very interested in the spiritual aspects of it. Interestingly, they told me that they "backed off" my Sacral Chakra (Pelvic region) because there was just too much energy going on and they didn't want to aggravate it. Whether energy is something you believe in, it's interesting that they could "sense" I had an issue there without me mentioning it to them at all.

-I had a vaginal utrasound and regular ultrasound done, both came back clear of anything.

-I use a dropper of diluted st johns wort mixed with coconut oil on my clitoral area, and it seems to help a little bit. Warm baths also help.

I am now waiting to see a Physical Therapist who is familiar with PGAD, as well as another gynecologist. Unfortunately both of these appointments got cancelled due to coronavirus.

My PGAD is less noticable some days and more others, but it is always there. I hope to find relief and comfort one day. It's good to be diagnosed and have something to call it, but the reason behind it is still a complete mystery.

[sadie]

Amethyst,
Hi hope u are a bit better n have increased your Lyrica from the 25mg u reported in May, to a dose that helps. I take 75mg three times a day coupled w lexapro. This is a fairly common cocktail. It has helped but not 100%. I still have arousal in the tail bone 24-7 where PN is attached, and wear hot get salon paz patches there . Still have a few other 24-7 areas but nothing like the pre med , pre surgerie "non stop arousal on steroids" that caused extreme sleep deprivation in 2010 . So i hope the lyrica made a difference and you may need to add lexapro. I can give you the name of the compounded pharm that can ship u a proprietary 10% lidocaine cream with not odor that may help with clitoris or any burning . Stay safe and wishing you all the best . Sadie
PS so sorry you have had pgad for even 1 minute. It will get better . You need to find tools like creams, meds, ice, etc ...try not to take benzos if u don't have to.

[some-velvet-morning]

Does this sound like pudendal neuropathy? Hoping someone knowledgeable can advise me.

I've been experiencing intermittent PGAD and dysaesthesias and pain in my labia, perineum and anus, exclusively on the right side, for three months. Luckily, after the first 10 days and with medication, the arousal became minimal and transitory and my more common symptoms are pain and irritation in my right labia. I also get days that are nearly symptom-free or with just occasional right labia pinching/aching. I believe a better term for what I'm experiencing (one I've seen some doctors use) is genito-pelvic dysaesthesia. I feel very fortunate that my worst symptoms subsided and that I get nearly symptom-free stretches: I was suicidal when this first began and under emergency psychiatric care. But my symptoms are still disturbing and irritating and I'd really like to get to the bottom of this.

Because my symptoms are one-sided, it makes me think there is something structural/anatomical going on, rather or in addition to something hormonal or neurochemical. I seem to have pain and dyseaesthesias along all branches of the pudendal nerve, so I'm wondering if it's some pathology with that nerve.

Symptoms (at various points): labia itching (right side), labia aching (right side), sharp pains in labia (right), raw feeling in labia (right), sensitivity in labia (right) burning in labia (right), burning or icy feeling in perineum and anus (right, again), arousal, clitoral sensitivity (right side). Right buttocks, right lower back and right leg pain. Sensation that there is something in my vagina. Sensation that there is something in my anus. Pressure/aching/fullness in vagina. Feeling like my perineum is going to explode. Never had a spontaneous orgasm with this. I've also had bladder pain, sometimes extreme and with stretches of constant urgency, since last October (pre-dates this) and was variously diagnosed with IC and chronic pelvic pain.

Here's the (more) confusing part: This started after slowly tapering down from 20mg amitriptyline three months ago. I was given the amitriptyline for bladder pain. When it didn't seem to help and because I'd had a bad endocrine reaction to amitriptyline in the past and wasn't even supposed to be on it, I slowly tapered off it over 2.5 months. I knew PGAD was associated with abrupt cessation of SSRI/SNRIs. Amitriptyline is less serotonogenic, I tapered very slowly (more slowly than the UK PGAD specialist I later talked with suggested I should) and I'd safely come off it once before. But within three days of reaching zero I started getting clitoral sensitivity and arousal and genital irritation--all right-sided. I very quickly went back on amitriptyline and under the instruction of a psychiatrist took it up to 40mg. Within a week of this my more extreme constant arousal symptoms subsided and I was mostly left with what I call the "wacky labia symptoms."

Most people think PGAD after coming off an antidepressant is due to some neurochemical problem, eg. an imbalance between serotonin and dopamine. But surely if there was something systemic like that it would impact both sides. I'm wondering if the imbalance simply revealed existing pudendal nerve sensitivity/neuropathy--which maybe caused my bladder pain (pudendal nerve enervates the bladder) or maybe the bladder pain dialled up signalling in that nerve and then withdrawal from the amitriptyline made it worse.

I've seen Dr Goldstein in San Diego. So lovely and so knowledgable. Nerve tests they ran prove there is something abnormal with the signalling in the pelvic nerves on my right side. They initially thought that was coming from an L5/S1 annular tear I have and related to a fall five years ago where I struck my lower back and my legs went tingly and numb for 20 minutes. I've had right-sided sciatica since a few months after that, treated with physio. I had an epidural injection at that level and it didn't relieve the symptoms I was having that day--but those symptoms were fairly minimal (intermittent right labia pinching) so they want to repeat on a day when I'm worse. I was getting intense localised itch on one specific spot of my labia one day when I saw them (this is a recurrent symptom for me, always the same spot). They directly numbed that part of my labia and it didn't relieve the itch, so it's coming from upstream. They think this is very likely anatomical because it's one-sided.

I'm going back to see them again in November, when I have a better hold on my symptom pattern. They want to do a pudendal nerve block on that side and see if it relieves the symptoms. I'm terrified to undergo that because I'm so worried about making things worse. But I really want to know where this is coming from. If they can isolate this to my pudendal nerve or one of the branches what can be done? Decompression surgery? Radiofrequency ablation? Again, so worried about making things worse. I can survive with these symptoms, although they're uncomfortable and cause anxiety. I have extreme anxiety about any treatments because this started from an innocuous treatment change (trying to swap amitriptyline for gabapentin).

Also afraid to have pelvic floor physiotherapy, although I know from physio I had for my bladder pain I have an extremely hypertonic (tight) pelvic floor and lots of trigger points. Also wondering if my pelvic floor has just spasmed and is compressing my pudendal nerve on that side and it became more sensitive when I withdrew from the medication. The pelvic floor physio I saw wasn't very knowledgeable.

Other points
[*] Symptoms seem to be linked to my menstrual cycle--eg for a day or two before my period I'll get this intense very localised itch one one specific spot of my labia. During my period I'll get vaginal aching and this weird feeling like someone is stroking a feather on the right side of my vagina, internally. My symptoms seem worse when oestrogen levels are lower (just before and during menstruation). I don't think this necessarily means it's hormonal as I know from my bladder pain that symptoms can just fluctuate with hormonal levels. Had bloodwork and my hormone levels are all normal. I'm 30 and have very regular periods.

[*] Haven't regularly cycled in a few years (although I used to) and didn't have any injuries as this started, but I have a nearly lifelong history of constipation and previously had lots of anal sex, both of which I know can be associated with pudendal nerve damage.

[*] This has coincided with a flareup of my sciatica (same side), which might be coincidental.

[*] I feel this has to be related to my bladder pain in some way. A year before my bladder pain started, I was on amitriptyline for migraines and came off it with no effects. Notably, I was briefly (3 days) on another tricyclic antidepressant just as my bladder pain began and came off it because I worried it was related. I'm wondering if these antidepressants are sensitising these nerves or activating existing damage.

[*] Symptoms do get worse with sitting, particularly on a hard chair.


If these symptoms are being caused by the pudendal nerve, what can be done?

Thank you for reading.

[sadie]

Some velvet morning,
I will try to cut and paste some info for you tomorrow, just did not want you hanging. As, i can feel your suffering. You say rt labia is that the majoria or minoria??. I will try to address the amitriptyline issue and pudendal nerve block etc tomorrow meanwhile.... You cover a lot and rightfully so and i am so sorry . Remember .."better the devil you know then the devil you dont" or something like that. If u say you were suicidal at one point DO NOT RETURN THERE . There are things to help u . To begin please read the meds i use in post above under Sadie as many many of my symptoms mirror yours . I use lyrica, lexapro and 10% compounded lidocaine n hot gel patches on the labia n tail bone where the pudendal nerve is attached, to negate arousal n would be bed ridden w ice with out them . Do u have SalonPaz hot get pain patches in the UK ? I can send u some if u private message me ur address. They have menthol and other cooling agents in them. U may need a 3tmri imaging of the pn (pudendal nerve) by a pn specialist. did dr Goldstein answer your main question in your opening, which was
"is this pudendal nerve related ?" What exactly did he say in reference to that question?

If u return to a physical therapist they should be pn knowledgeable n understand the pelvic area, not just any PT.

I would start w meds b4 anything as u can come off them, n surgery is permanent. I had two pudendal nerve decompression surgeries, however if I were you I would start with meds. I use 75mg of lyrica 3 times a day n you may want to add 10mg of lexapro to that ( some times a cocktail of meds works better) . Lexapro has less side effects then amitriptyline and older drug which in my case over time slowly caused dystonia. I saw the dose u were on of amitriptyline, n it seemed low , you may have needed more to stop the arousal. Just a thought.

In 2006 i was on it before pgad, for acid like burning n static n needed 70mg a day.

I will try to return tomorrow w more info . Mean while in the search bar above search words like PUDENDAL NERVE BLOCK to see what patients say . I had disastrous results n so have many from pnb's.

There should be a list on the lef side of the home pg on this site, to find drs all over the world.

How long ago did u go to dr Goldstein in calf usa. ?

As for the comment by your first astric , at the end of your post... yes in my research i have read that, that behavior can cause nerve damage to the pudendal
which can trigger PGAD. Did your pudendal nerve and all your issues start around the same time as having sex this way?

Childbirth is also another common reason women getting pgad because they are pushing down on the nerve when giving birth. Have u had any children?

In my case I had 2 pudendal nerve blocks in which they used a strong steroid called Depo-Medrol which was used off-label and both times it caused pgad, the second time it did not leave.

R u still in the USA? Help is on the way , this site has far more knowledgeable members then me, that are soooo smart , but i have some research n theories, as i have had pgad for 10 years n research the meds, procedures and symptoms and will try to help if i can . . Sadie again i understand as much as i can.

[sadie]

some velvet morning,
i posted this a while back in regard to pgad and antidepressants. You mentioned the possibility of a link between the two. i also know there is a link between hormones and PGAd in so much as i was given compounded progestogen cream with out incident for a month before adding the compounded estrogen cream ...the estrogen once added to my arm caused unrelenting arousal that lasted 24 hr. I was glad to hear your hormones with tested and ok and though i would give you a heads up about the estrogen .

i have often wondered about the link between any possible exasperation caused by the the pill which contains estrogen and pgad .

“If a woman is on an antidepressant, and while on the antidepressant for say 'situational depression" or to stop pain (burning or static etc.) , and then she injures the pudendal nerve or further injures the PN, PGAD may develop . But because she is an antidepressant, she may be unaware of the PGAD (because the antidepressants are blocking the PGAD signals to her brain). Then when she comes off the antidepressants, because she no longer feels depressed and her situation has changed, she than feels for the first time the (PGAD) signals that were being masked by the medications and thinks that the cause of the pgad is because she has stopped the medication. Likewise, many patients on Lyrica feel this medication causes weight gain and it may be true. However when I spoke with sever pharmacist to see if there were any ingredients in Lyrica to cause weigh gain, the answer was 'none". So the coloration between weigh gain and Lyrica may be the fact that , most patients on Lyrica are taking it for pain and those of us in pain do not exercise as we did before taking the medication, which is the cause of the weight gain. So many times it may look like a drug is causing a side effect when it is not.”


your post sounds like you have done your homework and then some, but if there are any questions you still have, i will share my experiences in the trenches with you, and meanwhile hope that this forum and all the posts you can read here and the research Violet has done in the news letters and the list of doctors ....will give you hope. Sadie

[some-velvet-morning]

Hi Sadie, thanks so much for your replies.

Some velvet morning,
You say rt labia is that the majoria or minoria??

Labia minora.

Do u have SalonPaz hot get pain patches in the UK ? I can send u some if u private message me ur address. They have menthol and other cooling agents in them.

That's a very kind offer but I'm not sure where I'd put them. Also as I've learned from the direct injection into my labia, numbing it doesn't help. It's all upstream.

did dr Goldstein answer your main question in your opening, which was
"is this pudendal nerve related ?" What exactly did he say in reference to that question?

They want to do a pudendal nerve block to determine that. They're very much about isolating the origin of this so it can be treated. But of course I'm terrified of aggravating things and getting permanently worse. I'm going to ask him about PN issues more directly when I have a phone appt next week.

I would start w meds b4 anything as u can come off them, n surgery is permanent. I had two pudendal nerve decompression surgeries, however if I were you I would start with meds. I use 75mg of lyrica 3 times a day n you may want to add 10mg of lexapro to that ( some times a cocktail of meds works better) . Lexapro has less side effects then amitriptyline and older drug which in my case over time slowly caused dystonia. I saw the dose u were on of amitriptyline, n it seemed low , you may have needed more to stop the arousal. Just a thought.

I don't think medication is consequence free though, as i learned from taking amitriptyline. I was only given it for bladder pain because I was desperate and my GP wouldn't consider gabapentin or pregabalin. I was assured that I could come off it if I didn't work and that, given how it had messed up my hormone and endocrine system last time, I shouldn't be on it long. Now I'm basically terrified of taking anything and making this worse. I will discuss increasing my amitriptyline dose though.

How long ago did u go to dr Goldstein in calf usa. ?

Middle of September. I was in a really good spell because I hadn't yet learned my symptom patterns though so they want me to come back at a time when I'm worse.

As for the comment by your first astric , at the end of your post... yes in my research i have read that, that behavior can cause nerve damage to the pudendal
which can trigger PGAD. Did your pudendal nerve and all your issues start around the same time as having sex this way?

No, it's not temporally linked to having sex that way. It all developed months later, after I hadn't been having sex at all, but there was an incident 6 months before when I thought I might have damaged nerves through sex. I was getting all these weird false sensations of having something in my anus.

- Haven't had children.
- Yes, that is my fear about diagnostic nerve blocks. I've heard you can get them without steroids, with just an analgesic. I thought blocks were kinda the gold standard for diagnosing PN problems. How else can my pain/dysaesthesia be isolated to that?
- I'm not in the US but I also have US citizenship and my family lives in the US so I can get there easily.

[sadie]

SVM
Hi do u think since pnb w lidocaine are prob done in the UK you can get your block done there so u do not have to travel ....n then if u return to the USA you can go to a dr
who is a pudendal nerve surgeon and specialist, who actually does the surgery if needed. I heard dr Goldstein does not take insurance etc. As for amitriptyline ... u can try another antidepressant from a different class of antidepressant that is commonly used with pgad patients called LEXAPRO which is a newer drug and tolerated better. Did u search pudendal nerve blocks AND after that PNB in the search bar to see what others say? Is there arousal in labia minoria or just pinching? And is it constant?

10% compounded lidocaine cream n ice packs may help w anal area arousal .

You can cut sm postage size Salon Pas patches to fold over the labia minoria. The burning n coolness from the capsaicin and 1 .25 menthol from patch can balance the arrousal . Since the pudendal nerve attaches at sacral , maybe a patch over tail bone will help. I have 24hr arousal there and the patch cool burn balances the arousal.

Ty for answering my questions i will continue to search items for you. ❣ keep us posted