I think I have PN

[IncorrectUsername]

Hello everyone,
I'm new to this forum and new to this condition as well. Also, English is not my first language. I'm here to ask about your opinions.
I started having a few symptoms about three months ago, but didn't think much of it. It started very suddenly, but not very intense. I just felt like there was a strange, but not very hurtful feeling suddenly going all the way through the course of the pudendal nerve, just for a second. After that I developed a bit of hypersensitivity and shooting and pins and needless. I didn't think much of it, but went to gyno several times over the course of two months, especially because some sort of burning also developed. The last time that I went there the burning got so intense, but I was still sure it had to be some sort of bacteria (even though I also had pain in rectal area).
Just a week after that (three weeks ago) the hypersensitivity got so intense that I barely could walk anymore, because it suddenly went down the legs as well. I went to other kinds of doctors, got a few meds like muscle relaxants and ibuprofen. The shooting and burning is barely there now anymore after I took them. But I can still barely walk, because the hypersensitivity is so much, everything feels inflamed when walking just 5 min. I've also been to a neurologist, but he told me, it is not the pudendal nerve, because if it was, I wouldn't have the symptoms on both sides, but that's technically possible I heard. I'm only very much at the beginning of this, so haven't really done much yet other that visiting like 20 different doctors. Also got Mrn, but they didn't see anything on it. I haven't done PT yet. I'm not sure if I should go to just any PT who knows about pelvic floor therapy, or if they specifically need to know about PN? I'm just looking for some tips, because I feel a bit lost what to do next.
Thank you.

[Violet M]

You can have symptoms on both sides with pudendal neuralgia. For instance, if someone had PN due to lyme disease, the symptoms would be on both sides. If the neuralgia is due to entrapment, it's more likely to be worse on one side, but it is possible to have an entrapment on both sides, although not as common.

If you can, it would be better to go to a PT who is knowledgeable about the pudendal nerve, but that isn't always possible unless you live near enough to one.

I'm not sure why you would be having pain down the legs. I had difficulty walking but the pain was more at the place where your leg meets your perineum. If the pain is going clear down your legs, can you get an EMG of the legs to see what's going on? It seems like you need more diagnostics to figure this out.

Violet

[IncorrectUsername]

Thank you for you reply, Violet.
That makes sense. I already booked PT for pelvic floor now. There is someone knowledgeable about PN not too far away, but they are super expensive. I guess I try the other one first.

Just yesterday I did EMG for the legs, like you also suggested, but the doc said there's nothing out of the ordinary. The pain down the legs only happens when walking, because of the friction, the upper legs only, it resolves after some time when I'm lying down.

I feel like my symptoms defenitely do feel like PN. Symptoms are mostly rawness, hypersensitivity, shooting, burning, pain with using toilet and sometimes feeling as if I had uti (but I already tested for uti). But on the other hand, some things are also a bit weird. For example, that it's happening on both sides, and also I have very minimal issues with sitting, which seems like a very prominent symptom for this condition.

[Violet M]

If you have clothing that rubs in the wrong place it can cause friction when walking and increase your pain. Some people with PN have to wear really loose clothing, especially around the panty line. But I had pain when walking no matter what I was wearing so sometimes it's just the friction of the nerve inside your body.

That's good that you don't have an abnormality in the EMG of the legs. Do you have any idea what might have triggered your symptoms? Sometimes your history can give you some good clues. When I initially had PNE, the symptoms were mild at first and I had no trouble sitting. Slowly over time the symptoms got worse and sitting became a problem. Walking was a problem before sitting was. So, I wouldn't say your symptoms are really out of the ordinary. Hopefully the PT you are seeing will be able to help you.

Violet

[IncorrectUsername]

Yeah, exactly. I've only been wearing super loose pants, it is better when I wear loose things I believe, but the pain cause of the friction still happens.

I do think I know what caused it. The weird shooting feeling happened the first time while masturbation. Funnily enough, I do consider myself as asexuel, but was having a very stressful and depressing time, so I guess for some reason I just developed it as a coping mechanism and became kinda addicted to it in the end. Just a few months ago I made it off the antidepressants and now this happens...now this feels even more depressing than how it was before. And now the only positive things that were always my reasons to continue living aren't even possible anymore. Stuff like traveling and exploring, and concerts and hiking. I feel so sad, especially knowing I myself probably caused damage to a nerve for something I didn't even need. Ok.. Done venting...

Yeah I hope the PT can help, I also found one who knows about pudendal neuralgia and isn't really expensive, but it'll take a few months till I can go there, because he's fully booked. But if the nerve is actually damaged, does PT even do a thing? Someone told me I should also try seeing an orthopedist, but I don't really see how this should help.

[Violet M]

I think one of the main reasons for seeing a PT initially is for an evaluation. I was actually diagnosed correctly by a PT when the local doctors had no clue. Whether or not they can help you would depend on what the underlying cause is for your pain.

Lots of people masturbate without getting pudendal neuralgia so please don't blame yourself.

As for seeing an orthopedist, since you are having pain with walking I guess they could evaluate you for a femoral acetabular impingement or a labral tear which sometimes causes pelvic pain.

Violet

[IncorrectUsername]

Really? I never thought doctors could be so clueless. Guess you only realize it when you experience something like this. Even though I mentioned the pudendus nerve I got told that my symptoms were like sci-fi and I should go to a center for rare diseases. But they said they don't think it's a rare disease and didn't even give an appointment. For the PT appointment I need to wait two more weeks.

I have the theory that the masturbation was what eventually caused the symptoms, but there might be some things that contributed to it. I remember a fall with my bike where I got hit in this area very badly. Also I have a history of near-chronic UTIs for at least 5 years, which eventually stopped tho. But all that is like 10 years ago, so not sure if it would still have an effect on anything, I'm 27 now.

I also have another question, if that's okay. Most people have this condition only on one side. This probably does sound stupid... But I'm still confused about how does it feel like there's only one side affected? I mean, I feel like I couldn't really say either, for me it's more like very specific parts that hurt, for example clitoris, anus, that are neither left nor right. How could you tell? For example, you said you also felt pain when walking at the place where the legs meet the perineum, but was that only one leg or both then?

[Violet M]

It was mostly one side on the inner thigh when walking but eventually it spread all through the pelvis pretty much all the time with burning. If you think of the vagina as a clock, at about 3 o’clock and 9 o’clock on each side, the pudendal nerve can be pressed on at the ischial spine by an examiner. That area can be painful when pressed on, but you can also have a deep ache or sometimes knifelike pain at that spot. You can also have burning pain throughout the clitoris, vagina, or rectum. But the burning can be worse on one side than the other. Everyone is a little bit different.

The damage to the nerve can add up over the years with a combination of things triggering the pain. Many people have to still be careful even after they heal - kind of like if you have a predisposition to diabetes but you control it with lifestyle, you can have a genetic predisposition to pudendal neuralgia. Dr. Bautrant has seen it run in families. But one person in the family might lift weights and trigger PNE but another person in the family doesn’t lift weights and doesn’t get it.

[IncorrectUsername]

Thank you for all the information, Violet.
It's still almost one week till I can talk with a PT who worked with PN patients before and he will tell me if he can help and hopefully also give me a diagnosis.

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?

Also 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. I did think it was kinda weird that I started having an addiction to masturbation even tho before I was considering myself to be asexual. But the timing when I stopped taking the antidepressant (escitalopram) is somewhat the same time my addiction started. I am now thinking I might have had a very mild case of pgad before all this without realizing. It's a lot worse now tho and I'm not even sure if that's actually how pgad feels or if it really was an addiction and my brain is just going crazy because I stopped so suddenly. All very confusing really..

[IncorrectUsername]

I've also been wondering... Like I mentioned, the pgad symptoms only really started after I changed some of the meds. I'm currently only on ibuprofen. I only stopped taking them for two days, because someone gave me another med and she said I cannot take both at the same time. I really don't have a clue what this med was (I don't even think it has a name one could google as it's nothing official), but it did help her a lot with severe nerve pain. When I started taking it, I didn't feel much improvement for PN. But when I read about all the pains this med claims to cure, there was one thing that I worried about, which was erectile dysfunction and such. I was instantly worried this could make the pn even worse. I also started to have a very big fear it could cause pgad also, no matter if that's reasonable or not. Yeah... Just two days later and I'm having these pgad symptoms now 24/7. I'm really wondering if this med really did cause pgad or if my worry to get pgad from it actually could have caused it...
Sorry for the long texts today...