Health Organization for Pudendal Education

IncorrectUsername wrote: ↑Thu May 30, 2024 7:44 pm Something you said also made me think of sth. You talked about the places where the pudendal nerve can be felt at the ischial spine. I'm not sure if that's how it is meant, but especially in the beginning I tried to find out where exactly the pain is coming from. The main bit was clitoris, so I think it makes a lot of sense that I suspect the masturbation was what set it off. But also 4/5 other places I found out and one was on the right and the left side of vaginal opening, I think there's a bone or sth, could this be where you mean?

The ischial spine, where the main trunk of the pudendal nerve runs on either side can be felt about a finger's depth at about 3 o'clock and 9 o'clock in the vagina. You can potentially have small fiber neuropathy in the clitoris from masturbation instead of something that involves the entire main trunk of the pudendal nerve. Or you can have a compression or a neuropathy involving just the clitoral branch of the pudendal nerve. Hopefully your PT can help you figure this out. Nerve blocks could also help with the diagnosis.

IncorrectUsername wrote: ↑Thu May 30, 2024 7:44 pmAlso I believe I developed PGAD now after I changed my meds a bit, I could cry something that I also thought was interesting, is that I read PGAD can be triggered through stopping taking antidepressants.

There are many people who associate PGAD with stopping an SSRI antidepressant drug. I'm not sure anyone can say for sure whether stopping the drug is what causes it, or whether the antidepressant was masking the symptoms that you already had but didn't know were there until you stopped taking the drug, because SSRI's can dampen sexual desire. I'm sorry to hear this is happening to you. If you aren't sleeping well, I think it's important to get some medication to help you sleep. Clonazepam helped me a lot with sleep. Before I started taking it, I was barely sleeping for 3 months.

Violet M wrote: ↑Sat Jun 01, 2024 11:01 pm

IncorrectUsername wrote: ↑Thu May 30, 2024 7:44 pm Something you said also made me think of sth. You talked about the places where the pudendal nerve can be felt at the ischial spine. I'm not sure if that's how it is meant, but especially in the beginning I tried to find out where exactly the pain is coming from. The main bit was clitoris, so I think it makes a lot of sense that I suspect the masturbation was what set it off. But also 4/5 other places I found out and one was on the right and the left side of vaginal opening, I think there's a bone or sth, could this be where you mean?

The ischial spine, where the main trunk of the pudendal nerve runs on either side can be felt about a finger's depth at about 3 o'clock and 9 o'clock in the vagina. You can potentially have small fiber neuropathy in the clitoris from masturbation instead of something that involves the entire main trunk of the pudendal nerve. Or you can have a compression or a neuropathy involving just the clitoral branch of the pudendal nerve. Hopefully your PT can help you figure this out. Nerve blocks could also help with the diagnosis.

IncorrectUsername wrote: ↑Thu May 30, 2024 7:44 pmAlso I believe I developed PGAD now after I changed my meds a bit, I could cry something that I also thought was interesting, is that I read PGAD can be triggered through stopping taking antidepressants.

There are many people who associate PGAD with stopping an SSRI antidepressant drug. I'm not sure anyone can say for sure whether stopping the drug is what causes it, or whether the antidepressant was masking the symptoms that you already had but didn't know were there until you stopped taking the drug, because SSRI's can dampen sexual desire. I'm sorry to hear this is happening to you. If you aren't sleeping well, I think it's important to get some medication to help you sleep. Clonazepam helped me a lot with sleep. Before I started taking it, I was barely sleeping for 3 months.

Is very hard for the therapeut to press me at ischial spine Violet i am huge 110 kg at 183 and mostly is muscular mass...was impossible for the Spanish therapeut with 18 years experience in pudendal to test it ( for us males can t be checked from rectum good ) and she must press outside at least this is what she told me or i understanded bad...her english was bad and same with my spanish

Yes, that makes sense, Balenul. It is much more difficult for males.

Hello.
I just wanted to post an update now, as I now did have all the appointments that seemed important for diagnosis, but I'm not sure I made any progress with it.
I had a few PT appointments with someone who technically knows more about pudendal neuralgia than most doctors I talked to, but never treated it, so he also couldn't really diagnose me other than through symptoms, but I'm still doing PT with him. I don't think it's helping, but making it worse only temporarily, so maybe I will stick with it for now. My primary care doctor said my case seemed all a bit confusing, but still tried to be very helpful. Now he sent me to a psychiatrist to work on a bit of a traumatic past I have, because he says it could also be psychosomatic, which in my case would actually make sense, but I don't believe it is that, because I know the pain first happened when I was masturbating, so I don't suspect it do be psychosomatic. I need to wait for psychiatrist appointments more than a year probably tho. Other than that, he said it's possible to see if the nerve is involved in a hospital through EMG etc, but he advised me not to, because he is worried that could make it worse. He told me to continue taking ibuprofen and vitamin B, but come back if it would get worse. I'm not interely sure how to continue now. There's a PT who treats pudendal neuralgia with other pelvic floor issues specifically, but is very expensive and as I only do an apprenticeship rn, don't really know if I can pay for that, as someone said you need to at least do six appointments to see if that is working. But maybe they would know how to diagnose through PT at least. I'm still hoping that it would start to get better on it's own by avoidance but that doesn't seem very likely to me, when I already had this for 5 months now. I am thinking of stopping the ibuprofen to see if there was an improvement, but not sure if this is a good idea. I only get 2 or 3 of these pings of shooting or stabbing pain a day when it was like 20 or 30 in the beginning, so I thought I should try if it's getting better or just the ibuprofen. The high sensitivity is as bad as always tho, clitoral, vaginal, rectal and thighs. And the pgad hasn't ebbed either, even tho I suspect it is a more mild version of it, just feels like what others have described as "an itch you can't scratch" and can see the swelling of the clitoris 24/7.

I'm sorry to hear none of the appointments were very helpful. I hope that continuing PT won't make things worse since it is causing a temporary pain flare-up. I quit PT when it was causing more pain because I couldn't see how it could help to irritate an already irritated nerve. If your symptoms are really distressing, I can see the rationale for seeing a pelvic floor PT specialist for a diagnosis even if it's expensive.

That's incredible that you have to wait a year for an appointment with a psychiatrist! Is there any chance in the meantime that you could see a pudendal neuralgia specialist for a diagnosis? It's hard to know what treatments to pursue without a proper diagnosis.

Violet

Yeah I also can't understand how it should help. I wrote the pelvic floor specialist an email, but haven't got a response yet, because yeh it is really distressing to me, I have already fallen in a very severe depression even tho I only have it for a few months. I have a long past of depression, but I never experienced it like this. All the things I used to regulate my emotions are gone. It's really insane, I can't imagine how ppl can continue for so long with this kind of pain.

In my country there are no specialists I believe. There are three surgeons in other countries that I could reach nonetheless. But just the first meeting costs so much and I can't afford that, I'm already living with minimum wage. There's a hospital that also specializes in this kind of illness, they do the emg etc. But I'm not sure, my doc said he's worried this might make it worse and I also heard from ppl who got worse through it. So I should try doing these tests nonetheless? I mean, it feels like there's no question that I have it, will a proper diagnosis make such a difference? Like... You can't do the same treatments without a diagnosis?

I can't say what the doctors in your country would do -- maybe they can treat you without you having to go through the diagnostics that are usually recommended. But if you have a nerve compression, I doubt any doctor would do surgery without you at least having a nerve block. In my country, many hospitals will provide financial assistance to patients who can't pay, but I don't know if that's true where you live.

Violet