PGAD - persistent genital arousal disorder

[Juliette1313]

Hi, thanks for your post. If I understand correctly you only had it for 3 months?

[Carla]

Yes, I had it since july of this year. So I only had to suffer for three months but I that was really enough...
But I started immediately to do something against it.

Went first to a neurologist, who prescribed me Pregabalin.
Then I had a hysterectomy, which didnt help much, because I feared that because my uterus was really too big that it pressed on some nerves.
But like I said, that was not (the only?) cause.

So I was treated by a psychiatrist, who thougt this disease was only a psychologicol problem, which is not true, but I think it is a combination between psychological AND body problems. I was lucky that he prescribed me venlafaxin, which is similar to duloxetin, so I could switch to duloxetine, which helped the most.

In the end I found a doctor in Germany/Hanover, that had specialized in sexual diseases and he prescribed me duloxetine.

But I think the vitamins that I take - I mentionened them in the posting above (and pay for them for myself...) have also brought a lot to the healing.

And the heating pad und understanding of my mum and the love of my husband, whom teached me to have patience with side effects, that occured in the first time.

So I want to tell you: THere is hope!!!!

[Carla]

PS: If you have any further questions, please don't hesitate to ask, I will try to answer them in my bad german english

[Carla]

If you want to you can also write me a PN.

[SusyQ9]

Hi everyone,

I never write on forums and stuff but I'm currently feeling a lot of anxiety. I'm afraid I suffer from PGAD. It hasn't been there for a long time (a week now) but it has been extremely distressing and uncomfortable. These is constant arousal and pain + an overactive bladder. I have no idea what started it and I'm still young (23) and can't concentrate on my study or job at the moment. I don't sleep at night and can't eat because of the stress. At first I thought (and hoped) it was a UTI but that's not the case. Tomorrow morning I'm going to see the GP but I don't really know what to say or do. Sorry for the depressing message, it's been comforting to read that more women (and men) suffer from this. I see there seem to be some treatment options, but I wonder what happens to the women who are not helped by these medications. Do you think it's possible to 'get used to it'? I'm afraid it will never go away and it would be comforting to know if there are women out there that live their life despite their PDAG and aren't bothered as much by it as time passes. Looking forward to your answers!

Greetings from the Netherlands,
Susy

[Carla]

Hello Susi,
I am from Germany and If you look at the postings above am at this time really cured and have no more problems with PGAD.

I can totally understand, that you are frightened, in the first weeks of my PGAD i was totally horryfied, because of the articles in the internet. I really thought I would never get better.

So at first I want to tell you:
Calm down. Stress makes it definetely worse!

If you cant eat anything, which was in my case the came, try to drink something with much calories and eat soups.
If you cant sleep, try at first something harmless (valerian or so).
You must eat and sleep, because you will need all your strength to fight your PGAD )

Then think about, who you are going to talk about this.
I would advise only with your closest relatives and really reliable friends. You really need someone who goes with you to the doctors etc. pp.

Then think about the personal causes of your pgad, because I think, that will inform you, to what kind of doctor you should go to.
- Did you have hormonal changes (pregnancy, the pill, pill withdrawal etc. pp..)? - gynecologist
- DId you have an accident in which you have hurt your back? (Pudendus neuralgia) - neurologist
- Did you ride on a bycycle ? (Pudendus neuralgia) - neurologist
- Did you have abnormal stress in the last months (death of a relative, new job etc.??) - psychiatrist
- Do you take new medicine or have stopped to take a medicine abruptly?

In my case it was ALL!!!! of the causes, which made it very difficult and nearly impossible to treat the cause.

Then I would advise you to go to your "normal" doctor and he should advise you to the specialists.

Depending on your case, there are many options of examinations:
MRI in german called Magnetresonanztherapie
a pudendal block
blood examination (hormones, Iron - Iron defiency is linked to Restless LEGS, which is similar to Restless Genital)
etc. pp.

As the netherlands are very close to germany, i could recommend hospitals etc.
I think there is also a netherland forum psas.nl für PGAD.
And there was a professor Waldinger in the neverlands, who died, but maybe there is a recessor.

Do you have only the arousal but pain?
What you can do yourself as first self help:
Try heat or cold. In my case the cold helped with the arousal, the heat with the pain (heating pad between the legs).
Be careful with ice packs, do wrap them, so that is it not too icy.

My personal opinion is - besides the body problems - there is always also a psychological problem, that lies underneath. Which I first denied.
But that has to be treated as well, very important. Options are antidepressants or / and talking to a psychiatrist.

you can also try"Muskelentspannung nach Jacobsen" and "autogenes training", dont know the englisch terms.

But for my problem it was the meds, that brought help, but you need patience.



-

[Carla]

PS: If you have overactive bladder, Duloxetin (the med that helped me the most) is - recording to websites - against this condition.

You can also change the things that you eat or drink, there is a bladder-diet.

[Carla]

PSPS:
I - for example - had also a HUGE myoma in the back of my uterus, which can press on the sacral nerves.

Only the third doctor found it, because it was hidden in the back.

[Coz1990x]

Hi everyone.

I posted on another account back in 2017 when I was 20 years old and developed PGAD due to a long term uti. It was a complex uti not IC as my urine was examined in depth under microscope. Anyway I was essentially cured by PGAD for around 6 months and came off all medications apart from amitrip which I cut down my dose. So if you have PGAD right now it is horrible petrifying, I lost a stone the first month I had it I understand.. however I have been doing really well so please don't loose hope. Unfortunately I am in abit of a flare at the moment and I'm 7 months pregnant.. I don't know wether to get a c section or natural birth and wondered if anyone could give an advice or help?! Thanks xx

[stephanies]

Hi,

Thank you for sharing your success and congratulations on the baby! My thought would be to opt for a c-section so as not to put additional pressure or stretch on the PN.

Stephanies