PGAD - persistent genital arousal disorder.Please help me

[Violet M]

One reason pudendal neuralgia patients have what feels like bladder symptoms is because the pudendal nerve innervates the bladder sphincter. I had severe urinary symptoms along with PGAD.

One of the most important considerations in the diagnosis of pudendal neuralgia is whether the areas innervated by the pudendal nerve are affected. It is interesting that your urologist doesn't think you have pudendal neuralgia. The primary nerve involved in sexual arousal is the pudendal nerve. It innervates the genitals. How does your urologist explain your bladder symptoms and PGAD then?

I think it is a good step to see a pelvic floor physical therapist. Hopefully they will be knowledgeable in treating your problems. They should be able to evaluate whether your pelvic floor muscles are overly tense, and they should be able to press along the course pudendal nerve at the ischial spine and the Alcock's canal to see if there is any tenderness along the pudendal nerve. Regarding TEN sessions -- I can't say for sure if it will help you. I tried a TENS unit prior to PNE surgery it is flare-up my PGAD quite a bit so I wasn't able to use it. After PNE surgery, I was able to use it without flare-ups and it helped significantly to calm down the pelvic floor muscles.

Violet

[cathyatlantic]

Hi Violet,

I went to a very good physiotherapist. She thinks my pelvic floor muscles are very tense and so are my lungs muscles. SHe told me my diaphragm is totally blocked and that's why my bladder and my lungs are so painfull. She knows she can help on pudendal neuralgia and painfull bladder but she doesn't know if she can help with PGAD.

I am getting very depressed and my tinitus makes me suffer also, no doctors in my régions want to asssit me, my psychiatrist told me all my symptoms are created by mental problems. They told me to wait until end of November when I meet a doctor from the Amarenco team in Teunon.

I am now waiting for my pelvic and spine MRI but I doubt they will find something because I really think that my PGAD was started by stopping the antidepressant Sertraline that I had been taking for only 2 weeks prior to have the PGAD symptoms. It must be caused by neurotransmitters imbalance in the brain.

On the 17th of October I am booked to meet the doctors Rioult and Riant in the Confluent hospital in Nantes. I have an appointement in the morning and nerves blocks are scheduled in the afternoon. I haven't been diagnosed with pudendal neuralgia so do you think nerve blocks could be useful on PGAD ?

Thanks a lot for your help

Cathy

[Violet M]

Hi Cathy,

The nerve blocks I had didn't completely take the PGAD away, even for a few hours, but I can't say for sure if nerve blocks will help you. The Nantes team is very experienced so I think you will be in good hands with them. It is possible that the PGAD is related to your pelvic pain and bladder pain and hopefully if PT helps those it will also help the PGAD symptoms. Good luck with your treatments. I would be interested to hear how it goes for you.

Violet

[cathyatlantic]

Dear Violet,

I had my dorso lumbar and Pelvis MRI done at the same time without contrat dye on Friday. The radiologist decided to do one MRI only.

The dorso lumbar is normal, no cysts, no abnormal discs.

The Pelvis MRI shows a compressed bladder because I have a very large fibroid in the uterus (I knew this already because my gynecologist makes me have an ultrasound done every year).
For the radiologist, my painfull bladder and pollakiuria could come from the bladder being compressed by the vagina and the cervix. My gynecologist disagrees, she doesn't think that the fibroid could be causing PGAD, only constipation. My urologist think the fibroid could be the cause of my pollakiuria but like my gynecologist he doesn't think PGAD could be caused by my bladder being compressed by the fibroid. They are both against me getting an hysterectomy because it might make my pelvis pain worse ( my urologist is afraid that the surgeon might touch some nerves linked with the PGAD). I am left with no direction. My next apointement is to meet the Nantes team for nerves blocks and the Hôpital Teunon team to evaluate what can be done if it isn't pudendal neuralgia. What is your opinion on this ?,I was a bit disapointed to learn that the dorso lumbar MRI doesn't show if there is a nerve entrapment or a neuralgia and also disapointed to know that getting rid of my uterus and my fibroid wouldn't necessarily ease the heavy pain I feel on my bladder.

Which tests show we have pudendal neuralgia ?
I hope I will get better soon.
Thanks for your support.

Cathy

[Violet M]

Hi Cathy,

One of the primary factors in considering a diagnosis of pudendal neuralgia is whether you have pain in the areas innervated by the pudendal nerve. Some doctors consider PGAD to be a pain syndrome or a type of pain.

You can read more about how pudendal neuralgia is diagnosed at the pudendalhope.org website - in the left menu click on the symptoms page and the diagnosis page.

The dorsal branch of the pudendal nerve is the primary nerve that innervates the clitoris so if you have PGAD affecting the clitoris, it would make sense to at least suspect that something is affecting that branch of the nerve.

Hopefully the Nantes team will be able to give you an opinion regarding the fibroid. To me it seems possible that it could be a factor because it is in the pelvic region near where the branches of the pudendal nerve run. The bladder sphincter is innervated by a branch of the pudendal nerve so if the bladder is being compressed it seems like it could affect that branch of the nerve.

Violet

[cathyatlantic]

Dear Violet and all of you on the forum,

I met Dr Rioult las Tuesday ( Pudendal nerve pain specialist and anesthesiologist in the Centre Catherine De Sienne in Nantes ( West of France). For him PGAD is part of pudendal neuralgia and he thinks PGAD is triggered by the pudendal nerve. Some patient can have pudendal nerve entrapment which isn't my case but the nerve can also fire off the wrong signals to the brain and the brain perceives arousal instead of pain. He doesn't agree that antidepressants could cause PGAD. For him the pelvic pain was already there and the antidepressants only triggered it. In this case PGAD can't be seen as a Post-SSRI Sexual Dysfunction. In my case, PGAD appears when I was tappering an antidepressant that I only used for 3 weeks (and I never used an antidepressant before)

Anyway, I had my CT-guided nerve blocks done .Two anesthetics were injected into my 2 buttocks in the sacrospinous ligament ( with ropivacaine and xylocaine). In Nantes,they use this method to assess if you have pudendal neuralgia. For me it didn't work,my PGAD didn't respond to the blocks, My clitoris arousal, vaginal lubrification and bladder pain and need to urinate constantly stayed the same. Since Thursday, it is getting worse, bad bladder pain and urinary urgency and very bad clitoris arousal.Dr Rioult gave me the choice between 3 meds that are supposed to work for pudendal pain. In the meantime, my urologist wants me to have another cystoscopy to rule out definitly Interstitial cystitis and overactive bladder.

The antiepileptic Lyrica (but I hear that you can have depression, tinnitus and agressivity as a side effect and I am already pretty depressed and I have tinnitus)
Amithriptyline (but I already tried another tricyclic, anafranil that made my tinnitus worse)
The antiepileptic Lactimal (I am really scared about that one because I read an article on the internet linking the use of lactimal to PGAD).

I thank you for any advise you can give me on these médications.

Thank you so much

Cathy

PS : I use zopiclone to sleep at night and I wonder if it is not sexually stimulating. Does some of you on the forum used it and felt the same as me ?

[April]

Hi Cathy,

Of the meds you listed, I have only taken amitriptyline. It tends to make you drowsy, so you could take that at night and you might be able to discontinue the med you take for sleeping. I switched from amitriptyline to nortriptyline a couple of years ago, because my pain doctor thought it had fewer side effects than amitriptyline (I was worried about my heart rate and my memory). It's hard for me to determine if it is better than the amitriptyline because I am on other meds. But, I do think it is helping because when I went off it about a year ago, my symptoms increased. I also take gralise and tramadol in the morning, and in the evening, I take the amitriptyline and (for my overactive bladder) tolterodine. I also take a stool softener three times a day to deal with the constipation side effect. So, those drugs may be worth a try if you don't have success with the ones the doctor recommended.

April

[Violet M]

Hi Cathy,

I haven't tried zopiclone but I used ambien when I had PGAD and it is a similar drug. It did not affect the PGAD at all but it did help give me a few hours of sleep a night. Later I switched to clonazepam which helped me more with sleep because it also has anti-seizure properties and it reduced the shocks I was getting.

I don't know if I agree with Dr. Rioult about PGAD always being due to pudendal neuralgia because I'm not sure any studies have ever proven that to be true. There is an article that links tarlov cysts to PGAD. But I think that it is reasonable to expect that many cases of PGAD are due to pudendal neuropathy, simply because the pudendal nerve innervates the lower 1/3 of the vagina and the clitoral area, and is the main nerve involved in orgasm. I'm not sure why the nerve block did not help your PGAD, even for a few hours. Did you have temporary loss of sensation in the areas innervated by the pudendal nerve, indicating that the medication was targeted properly?

Violet

[Joelle7979]

I wish u luck and I hope we all can get relief from this nasty issue.

[Katrina]

If anyone is nervous about trying actual hormone replacement therapy, try estroblend first. Helps with things like night sweats but I think it's been helping my pgad.