Health Organization for Pudendal Education

Hi Lily,

I haven't heard of St. John's infused oil. Is that related to St. John's wort? Hey, you can't argue with what works, eh? Good luck with PT. I will be interested to hear how it goes for you.

Violet

Hi everyone, I'm Florencia from Argentina. Found this forum while searching online my symptoms that started in Nov 2014. I'll tell my story, hope you dont get too bored In the middle of that year -winter here- I started to have what I thought was cystitis, so I took antibiotics, I went to my gyno for the regular pap and told her I had cystitis, she ordered urine & blood tests that came out ok. Transvaginal eco was ok too. Few days later I had the 2nd episode, I took antibiotics - I know self medication is not ok but well..- month later I had the 3rd episode so I went to see a urologist. He ordered urethral & vaginal swabbing -suspecting STD- even when I was sure that was not the cause. Tests came out ok. The feeling of burning urethra scared me altho there was no sign of irritation during tests. So he gave me oxybutynin -for overactive bladder- and concluded the symtomps I had were related to stress. I must say I had no symptoms while I was concentrated on something or with friends or family. Don't exactly remember when but after aprox 2 months taking Oxybutynin -sometimes omitted the meds when traveling because I used to take clonazepam , I hate traveling, and didn't want the meds to interact- I had a rare feeling in the genital area while in our car, I was lying in the partner seat, I didn't worry, when we got home it got bit more intense but I thought it was due to ovulation, that night I saw in the news a woman from the USA who had non stop orgasms without cause.....and that was when all started...I literally psychosomatised (does that word exist in english?) everything, it may sound funny but at that time I panicked. I started to have tickling & all sorts of genital sensations , took clonazepam, called my sister - my bf was sleeping, didnt want to worry him- told her I didnt know what's happening with me, talking with her calmed me down a bit, I could sleep that night due to medication. Since then I saw different gynos, started cognitive therapy, I still dn't kow what I have. I saw a neurologist,told him I was too sacred of having PGAD but he told me it was too unusual, tests came out ok - MRI of the brain, dorsal and sacro-lumbar area show no sign of irregularities, also Visual Evoked Potential came out ok -he wanted to discard a possible Multiple Sclerosis diagnosis. So then...he says 'the diagnosis is clear...you have PGAD' (??? what?!?) he says my symptoms match PGAD, he diagnosed me from the distance , he was in Buenos Aires and I was in another city , he is from Instituto Favaloro which is very prestigious, but he is so irresponsible to say the least...So I don't know what's wrong with me yet

Hello Flor..
I have exactly the same symptoms you describe, burning uretha!
I read online somewhere that one doctor believes everyone with pgad has some sort of pudendal neuralgia- I do agree with this as why would the nerve randomly start sending signals of arousal for no reason if it wasn't irritated. I was put on lycria and worked up 600mg which did help with the intense sensations but they were still there just alot more dull! I am visiting a physio therapist who knows how to loosen pelvic floor muscles - maybe you could try this! I would ask your doctor for a nerve block medication, also tramadol slow release has helped people, but my dr won't give me it for some reason ' she's referred me to the pain clinic closest to me, I am having urology tests too. It's horrible to accept and realise that it's pgad were suffering with!
Lily x

Hi coz,
I read overactive bladder is related to PGAD, but I never had urinary problems again! both my urologist and psychologist say my symptoms are all related to stress & anxiety...I really don't know if they are actual symptoms or it's my mind playing tricks on me. Never had pain either...I feel a bit silly posting this on here where so many women are in awful nerve pain. I've taking pregabalin 225 mg every night for several months now -it's also an ansiolitic- with some annoying side effects as memory loss. Pilates has worked, maybe because it helps strenghten the pelvic floor. The thing is PGAD is not a known illness here, after researching I found out few cases were sorted out after surgery - Tarlov cysts-. Have you done a pelvic and lumbosacral MRI? pain can come from pudendal entrapment...

I know, I developed intense sitting pain a month or so after having pgad but the lycria has taken it away.
I had an over active bladder going for a wee about 40 times a day!
I do have memory loss too but I would rather anything than the pain and pgad i had so it's a small price to pay haha, I am waiting for an mri - I do not believe I have an entrapment but I do believe I have neuralgia which has caused my pgad!
It's hard to fix a problem when nobody knows what it is
Xx

According to Dr Echenberg PGAD is a sub set of more complex goup of disorders called 'Chronic Pelvic Pain', in your case that is pudendal neuralgia, at least you know what causes your PGAD and can treat it.I've never experienced pain, never took any SSRI either, I thought maybe Oxybutynin caused it, but there are no precedents for that drug to cause PGAD... so I don't know what I have, basically

I'm not sure it's pudendal nerve, but I did have some sitting pain - I think my nerve has become inflamed due to my bladder but I'm not a specialist I don't know I'm just hoping for PT to have some difference as I can't imagine a life like this.
Hope you can find some answers Flor, Violet on this forum also said that there was a time when all she had was pgad - and it turned out she has an actual entrapment! So it is hard to be clear.
Lily x

Hi Flor,

You say you never experienced pain but you also said you had cystitis and burning urethra. I would classify a burning urethra as painful, and while I can't say for sure in your case if the urethral symptoms are related to the PGAD, I can tell you I had bladder symptoms (burning) as well as PGAD and both were caused by an irritated pudendal nerve. My symptoms developed gradually over time. I believe that my pelvic, urinary, and PGAD symptoms were all related. The pudendal nerve innervates the urinary sphincter but it is also the primary nerve involved with orgasm. So it would not be unreasonable to think that if you had pudendal nerve irritation that you might have both urinary and PGAD symptoms. If your nerve was hypersensitive as evidenced by the bladder symptoms, then possibly your hypersensitive nerve reacted to the thought of something sexual on TV. Personally, when I had PGAD, I could not watch anything on TV that was sexually suggestive because it exacerbated my symptoms. That's not because it was all in my head -- it was because I had a hypersensitive pudendal nerve that was being constantly irritated by hardened, sclerosed ligaments. So the point of what I am trying to say is that I do not believe for a moment that any of this is all in your head. It's obvious from your previous urethral burning that you already had something going on before your arousal symptoms started.

PGAD is just a fancy name to describe symptoms. It just means you are having the symptoms as described in the following article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4980903/
If you told me right now that you are experiencing the symptoms as described in that article, then I could tell you that your symptoms match the definition of PGAD. I am not diagnosing you -- I am just saying that your symptoms match that definition. It would be like if you said your head hurts with throbbing aching pain over your forehead, and then me telling you it sounds like you have a headache. That would in no way be giving you a diagnosis of what was causing your symptoms. With PGAD, you pretty much know you have it without a doctor having to tell you. Just like you know you have a headache without the doctor having to tell you.

It's kind of like the diagnosis of vulvodynia. You go into the doctor and say "I have pain in the vulvar area." The doctor does an exam, etc. and tells you that you have a diagnosis of vulvodynia which literally means "vulvar pain." Well, didn't you already know that you had vulvar pain before you went in? So now you have a medical diagnosis but does it really tell you anything? No...you still have no idea what is causing it. To me PGAD is not really a very helpful diagnosis -- it's just a description of your symptoms that tells you nothing about what the cause is or how to fix it.

Good luck. I hope you can get this sorted out.

Violet

Thanks Lily, same to you xx

Hi Violet, thanks for the link.

Thing is I don't seem to have the classic symptoms of PGAD caused by PN, when I had what I thought was cystitis -it was overactive bladder- it lasted few months, by the time I started to have this ticking in the genital area, the feeling of irritation in my urethra had gone, I never had the 2 symptoms at the same time. I can't identify any triggers either, sexual content etc. What I did notice is that in both bladder (before) & genitals now symptoms are exacerbated when I'm under more stress or anxiety than usual. May I ask how your symptoms started?