r/PudendalNeuralgia

31M. I’ve been dealing with this for about 1.5 years.
My main symptoms are major loss of erection rigidity, rubbery/semi-hard morning erections, difficulty getting hard enough to use a condom, reduced libido, and much less pleasure from masturbation.
I also have a constant tingling, irritated, sore, or “off” feeling in the glans and shaft. Urination often burns, and it feels like I have to strain or use pelvic muscles to pee. I also get pelvic/perineal tightness and random muscle contractions around the anus/pelvis.
A pelvic floor PT confirmed that my pelvic floor is very hypertonic. I’ve tried pelvic floor PT and 5 rounds of trigger-point injections with no improvement.
My flaccid penile ultrasound was structurally normal, but I have not had a proper dynamic Doppler to fully assess venous leak.
Doctors have mentioned pelvic floor dysfunction, CPPS, pudendal nerve irritation, pudendal neuralgia, and hard flaccid syndrome.
Has any other guy had this combination of ED, altered penile sensation, pelvic tightness, and burning urination?
Did you recover? What actually helped?

Hello everyone. I am writing here as I've been diagnosed with pudendal neuralgia few years ago and I am on some let's say healing journey with a lot of hit and misses, so to speak. Last 2 or 3 years, I had only mild pain while seating long hours and otherwise I was doing great. So I started some excercises. And this made everything relapse worse than ever.

I was doing deep squats, yogi squats, child's pose and lizard pose. I've noticed that these, and specially lizard pose gives me flares in a sense of pulling sensation in the perineal area, shioting penis pain and rectal pain. All pain symptoms exploded and lasts for 4 weeks already. I am miserable. Do you think this flare can be reversed? I feel such a fool for doing these stretching (reccomended by so called professional). Any advice is welcomed.

I’m stuck between two opinions and honestly feeling a bit lost. Two months ago I started neuromodulation (magnetic field therapy) and my pain improved a lot, even though I hadn’t done any physical therapy yet.

My doctor says physical therapy won’t help and wants to move forward with a nerve block. My physical therapist, on the other hand, thinks I have adhered fascia that could be compressing the nerve. When she does myofascial release and presses on that area, I feel the pain reproduced, and then it actually eases afterward.

To add to the confusion, I had an MRI and it came back completely normal, nothing abnormal at all.

It feels like each professional is pushing their own solution, and I just want to get better and stop being in pain. Has anyone been in a similar situation? Did the nerve block work for you, or did physical therapy/myofascial release end up solving it?

So i drank a big cup of coffee for 3 days. Now ive been in a flare for over a week.. does coffee cause you to flare, and for how long ?

I am so sorry for this little rant but i have to get this out of my system, been holding it and hiding it for many years. Thank you for listening.

Im a woman, 21 years old and ive been having this pain in my vaginal area for about a year or two now. It comes and goes maybe once a month or two, i have it for a couple days then it goes away. Ive been researching things about the pelvic floor but im still not sure what it quite is since there's many possible answers. I should probably go get this checked out as well.

Yesterday, a day after non vaginal masturbation, i have started feeling pain since the morning. It feels like period cramps but slightly different. It worsens the more i go through the day to the point where i have to take ibuprofen. The more i walk or lift things the worse it gets. Sometimes standing up feels more comfortable then sitting down.

This has been going on for a while and im used to the whole process already and know what to do to make myself feel better. Exercise helps and a hot shower. Rest of course as well.

Today i exercised but it made the pain slightly worse. I tried working on ab muscles to strengthen them since i think the issue lies in weak muscles.

I also lift heavy at work and im not that strong, im really weak in my legs and even with proper lifting technique it all hurts in my back and i suppose in my privates now as well? When i started this job i lifted heavy and fast while walking around with heavy object, turning and twisting my back in ways that are not good. Probably messed up my back from that. Ever since then i felt pain in my back. I try to work out once a week (or more), but im so tired from work i end up laying in bed with my phone for many hours.

I also smoke. I heard something about proper breathing technique on this forum and i might not be breathing deep enough since i smoke?

Also worth mentioning that as a child i held in my pee for EXTENSIVE periods of time. I would go pee two or three times in a day only. Also wouldn't drink many liquids through out the day. It came to a point where on a regular basis when i did have to go pee, I couldn't, nothing would come out and then i would forcefully push the pee out. Obviously i stopped doing this many years ago. But i still feel like i have to really focus when going to pee. Id call myself pee shy. When someone is around i just cant focus enough to pee even if i feel like im going to piss my pants.

Sex is also a sensitive topic for me. Ever since i started having it, i hated it. If there was an option to go without sex my whole life i wouldn't mind it at all. When i have it regularly with my partner its great, but if we dont see each other for a long time, it feels like my vagina kind of "shrinks". When that does happen its either too tight and i can almost feel like im tearing my vagina or its having pain in my cervix. Or both at the same time.

Whenever i get the chance to work out several times a week i have better sex drive and no pain during sex. Does this just mean my lower muscle are weak???

Thank you everyone for listening and im excited to chat and discuss this with all of you❤️

I started to get a strange sensation to the left on my tail bone near my buttock, I felt like I had something wet trickling down and this was happening every now and again.

Then been suffering here and there with tail bone and sacral pain.

It’s kind of eased off after focusing on some strengthening but soon comes back if I do kegels or intense ab work.

I went mountain biking on the weekend and my pelvic floor feels a bit loss of sensation etc but I keep getting that wet trickling feeling again near my tail bone?

Any ideas?

I (F) had a first visit with a pelvic floor physical therapist to try and address Pudendal Neuralgia symptoms as a conservative measure. The main symptoms I am experiencing from PN are pain on the vulva and urinary incontinence.

I loved the provider, however just the internal exam caused a huge PN flare up and I left the office with soreness near alcocks canal that got increasingly worse throughout the rest of the day sitting and laying on pillows. The pain/discomfort reached 4/10 in the evening, and I experienced numbness over the buttock and pain in the lower back.

This was my first time at PT. To be honest, the provider did not do much. She barely pushed around internally and was not aggressive with it.

I was told by my PN specialist (who referred me to PT) that “no pain no gain” is not the strategy you should take with PN. So, I’m not sure how PT can be successful when the diagnostic exam alone caused a huge flare up. I’d love to hear more thoughts.

Hi guys, I’m currently taking pregabalin, mostly for my pudendal neuralgia/pelvic floor pain. I'm currently on 175mg which lowers my pudendal pain by quite a bit but unfortunately exacerbates my occipital pain I presume due to different nerve area sensitivities to the drug, hyperactivating the occipitals, it feels like a jellyfish is sitting on my head and stinging away all different parts of my head throughout the day. It's manageable but unpleasant.

I'm wondering if I should drop my dose now to 150mg where my pudendal neuralgia pain rises by quite a bit and effects walking, sleep etc, but my occipital pain goes back to baseline regular, non-stinging pain that I've had for 2.5 years.
Would staying on 175mg with the hyperactive "jellyfish stinging feeling" in my occipital/head effect the outcome of the decompression surgery at all?? (I’m having decompression surgery in 10 days overseas with a very long flight) Meaning, I should drop to 150mg?..
Or would it make no difference to surgical outcome/ success?

Thanks

Hello !

Is this normal that the pain in my vulva is more frequent but less painful (acute pain) since I have started the exercices (5-6 months ago) ?

By example, I have more frequent sensations of pain in my vulva than before when I'm doing sports but not extreme flairups like before (and less frequent).

Has this been part of your journey as well ?

Thanks

I ask this because right now I’m dealing with my third bout of PN in the last 20 years. The first lasted everyday for a year thanks to sleeping on an old springboard mattress. Didn’t realize it until I went camping and slept on the ground in a sleeping bag and woke up the next day pain free. That was the aha moment. Before that I spent the year seeing 3 different urologists getting MRIs, CT scans, X rays, ultrasounds, and umpteen different kinds of bloodwork done annnnnnnd every single time nothing was found. All 3 urologists kept saying “it’s your back” despite have ZERO back pain. The next bout came 15 years later. Thanks to Covid I had to spend ALOT of time sitting doing my job virtually. After 3 months that familiar pain appeared. This time I just saw my regular doctor who gave me prednisone and I got a standing desk. The pain went away. And now I’m on my third bout thanks to severe constipation due in part of being diagnosed with celiac disease. So bye bye all the healthy grains and fibers that kept me regular my whole like. Went to my doctor a few weeks ago who confirmed by x ray that my severe bout of constipation is pressing on the PN. But does anyone else experience this? I guess I’m lucky that I’m not experiencing this 24/7 the last 20 years but it sucks nonetheless.

I am completely stuck and honestly don't know which way to go anymore. I’ve been dealing with a hypertonic pelvic floor (along with all the deep tension, urinary symptoms, retention and urgency) for a while now.

I’ve been doing a ton of research trying to figure out how to overcome this, but the more I read, the more confused I get. There seem to be two completely opposing sides.. The Stretching Camp, people who swear that because the pelvic floor is hypertonic (too tight/contracted), the absolute key is to stretch, stretch, and stretch to get it to release. and the Muscle Activation Camp, Professionals who argue that the pelvic floor is tight out of defense and instability because other muscle groups aren't firing properly and doing their job.

In my case, I know for a fact that my core is not activating. The issue is that whenever I try to do activation exercises to wake it up, my symptoms flare up immediately and the whole area tightens up even more. But then, if I try heavy passive stretching, I'm worried of creating more instability in my pelvis. What do you even do first? Do you stretch and then activate? Or is it better to avoid stretching altogether? I really don't know what to do...

The only thing I’m doing right now is using a pelvic wand. The issue is that sometimes it gives me relief and I feel it relaxing the muscles, but other times it feels like it does absolutely nothing, even when I use it on the exact same spots that worked before... I’m also using a vibrating wand to help relax the area, and it’s the same story: sometimes it works a little bit, and other times it’s like it does nothing at all...

9 months ago I had a penis injury.. my penis was basically yanked and it has ruined me. I am dealing with 10/10 nerve pain in my genitals and surrounding areas.. it’s radiated up my back, arms, stomach.. it’s in my thighs.. I don’t understand how my penis being pulled roughly one time has triggered this. Seems like central sensitization. I am 20 years old and bed bound, I struggle to walk to my desk. I’m on gabapentin, Xanax, and tramadol in an attempt to manage my pain and mental. I am unsure as to if what I’m experiencing is pudendal neuralgia but it seems like I align. Feels like CRPS. I’m pursuing a nerve block soon, looking into ketamine, I did some pt but I honestly think it made things worse. That was in the beginning when I could still walk. I’m exhausted. I don’t know where to go from here. I am at my wits end and to be honest I know I can only do this for so long. Any thoughts are appreciated. Thanks

Need answers!! How is pudendal neuralgia connected to urinary incontinence, if at all? Please share your stories. Here's mine:

I am 22F with diagnosed pudendal neuralgia from intense cycling as a high schooler; have had symptoms for 5-6 years. I haven't cycled since high school, but I never fully recovered.

Around the time my PN symptoms started, I started having urinary incontinence which has gotten worse with time.

Details:

- Pain from PN is a 2/10 all day every day on one side of vulva, labia majora, and labia minora (totally normal sensation on the other side)
- Hypersensitivity or allodynia from stimulus that should not cause pain like friction with underwear or sitting cross-legged
- No burning or shooting pain
- Mild pain on insertion with sex 2/10
- Deep internal pain when I press the pelvis area where the pudendal nerve is (feels like a bruise on the inside of my body)
- As soon as I get the signal it's time to pee, it amplifies 10x and I need to pee in the next minute
- Have peed my pants many times (can't hold blatter)
- hypertonic pelvic floor

I just started getting seen for this medical issue after years of being misled by healthcare providers. I was just recommended pelvic floor PT, a nerve block, and medicine for the PN. However they had no answers for the urinary incontinence. They could not tell me how much of the incontinence is related to the PN, and what the combined treatment plan would be for both issues. Please help.

Hi, F25 here.
Yesterday I had SSEP of the dorsal branch of the pudendal nerve.

My symptoms are few and very stable:
constant numbness and loss of sensation in the clitoris for several years, progressively worsening over the last year, reduced erotic and tactile sensitivity, and weak orgasms.
I have no pain or other symptoms, and I have never taken any specific medications that could explain this condition.

The result of the SSEP is normal; the dorsal nerve of the clitoris conducts signals normally, according to the report.
The specialist neurologist only performed SSEP and did not want to perform EMG, as she did not consider it necessary in my case since the problem is purely sensory.
I also suggested doing the bulbocavernosus reflex test, but she declined that as well, saying it is not reliable in women.

Given the normal SSEP results, neurologist concluded it could either be small fiber nerve damage or central desensitization.

I’m here because I’m trying to understand how SSEP could come back surprisingly good despite my marked clitoral numbness, to the point where it feels almost “gone.”

Has anyone had similar experiences with these tests? What would you recommend I do next?

Hello, I am 29 years old, female, and unfortunately I have been suffering from cruel pain in the vaginal area since November 2025. It all started around the 18th week of my second pregnancy. I suddenly developed intense, stabbing pain in my vagina, and no doctor could really explain where it was coming from. At first, it was suspected that my cervix had shortened, so a pessary was inserted. The ring caused me so much pain that it had to be removed again after five days. Since then, I have had extreme pain, not only deep inside the vagina, but also in the area of the clitoris.

I somehow managed to get through the pregnancy and give birth to my daughter. That is also why I specifically chose to have a C-section in April 2026. I was told that the baby was probably pressing on a nerve and causing the problem. But that was not the case. It is now the end of June, and my pain is worse than ever. Shortly after giving birth, I was told that the right side of my pelvic floor was tense and that this was causing the pain. Since the birth, I have only had pain on the right side.

I started taking amitriptyline and am currently on 50 mg. I cannot take a higher dose because I am still exclusively breastfeeding my daughter. I am now on the verge of weaning so that I can start pregabalin, which is incredibly difficult for me because I love breastfeeding her. But I simply cannot cope with the severity of the pain anymore.

I started vaginal physiotherapy, but after about four weeks of treatment, the nerve pain suddenly came back. I have now paused the therapy for four weeks, and I have been in excruciating pain 24/7 every single day, either in the vagina itself or in the clitoris with radiating pain. It is definitely nerve pain. It burns, tingles, feels raw, and hurts unbelievably badly. It is not just a pure muscle pain like I had before.

No doctor has really been able to help me. I was only prescribed pregabalin. I am very scared and have become extremely hopeless. I have started psychotherapy to try to cope with all of this. I have two tiny kids and most of the time I only want to live because they need their mum and I‘m loving them so much. But I truly do not know what to do anymore. My pain is not position-dependent, meaning it may get a little worse when I sit, but when I lie down it does not go away either. That is why I do not know whether I might be dealing with some kind of nerve entrapment or not.

Has anyone here had similar experiences? Can anyone help me? I am very desperate.

Hello everyone, F25 here.
I have been experiencing clitoral numbness and loss of sensation for the past 6 years, with a gradual worsening over the last year.
I don’t have pain or any other associated symptoms.

I have never taken SSRIs or any other medications known to cause these symptoms, I don’t have any systemic illnesses, and I have never suffered any injuries or trauma.

Tomorrow I will be undergoing an EMG and neurophysiological testing of the pudendal and dorsal clitoral nerves.
I wanted to ask if anyone here has had these tests performed, what the procedure was like, and whether it was painful.
My main concern is whether these tests could worsen my symptoms.

Thank you to anyone who is willing to share their experience.

i’m scheduled to get one next month due to chronic pelvic pain mostly during sex without huge success in pelvic floor therapy, but i’m kind of worried about how it will effect clitoral orgasms and sensation during sex. i’m debating whether i should go through with it. i can’t find much about it online.

to me sexual pleasure from clitoral stimulation without pain is what i’m trying to achieve and pain and tension makes it so i struggle with clitoral stimulation already so i want to figure out if this would go against my goals, even if it helps with pain

i will say my physician said that the pudendal nerve only transmits pain signals and that it wouldn’t affect my sensitivity at all, but i’m trying to see if that’s accurate information or not because it seems too good to be true.

things i tried before being suggested nerve blocks by my pain clinic:

-pelvic floor therapy once a week for 2 years
-at home pelvic massages every other day stretches every day
-baclofen and gabapentin prescription

another question i have is, has anyone here tried botox before a nerve block and it’s been effective? i’m making this post cuz for once im genuinely concerned they’re suggesting a treatment that shouldn’t be suggested without trying other stuff first.

I’ve been suffering from complete lack of tactile and erogenous sensation in the area between my legs for the past two years, the onset was sudden and shocking. The affected areas includes the genitals, perineum and anal region specifically. I don’t feel when I wipe hard with a paper towel, complete inability to get erect or build arousal, don’t feel the urge to urinate and muted sexual sensations.

So far, no doctor has been able to provide pinpoint the root cause or provide a formal diagnosis. The 2 lumbosacral MRIs I’ve had, and one pelvic MRI have failed to provide any meaningful answers. However, i failed the anal wink and bulbocavernous reflex test during examination, they came back abnormal. My pelvic muscles resting tone has also changed, they’re more hypotonic/overly relaxed and don’t have the same coordination or strength like before. My flaccid penis also feels rubber like, overly spongy and lifeless, as if it has lost it’s natural resting tone. It feels disconnected from the brain, in a weird way, I can’t sense its weight or presence like before.

The best way to describe my overall symptoms is as if someone flipped off the light bulb in my genitals/perianal region, it’s muted and silent.

The only unusual thing I can point to is that I had this weird mild pain in my tailbone area with dynamic movements (sitting, bending, coughing). I didn’t think too much of it then as it wasn’t affecting my daily life but the timeline of events did coincided. The sacrum region pain was chronic and lasted on/off for 6-8 months. However, this could be totally unrelated as well.

Does anybody else have the sudden onset like mine, or have the same specific symptoms? If you’ve gotten some help please let me know, I feel completely lost, miserable and hopeless in life right now.

My urologist diagnosed me with hypertonic pelvic floor dysfunction following 3 months of tests, scans and labs did not identify anything causing my pelvic pain.

I’m awaiting PFPT as there is a wait list here—still 5 weeks out. I’m taking 1200mg gabapentin daily along with 5mg Flexeril at night as needed.

Daily, I’m meditating, practicing mindfulness, belly breathing and completing the stretches outlined in the 101.

I’ve reduced/eliminated most penile and perineum pain, but I continue to struggle with anal pain—burning at and inside the anus—right side. I’m usually pain free in the morning and can sit (with a cushion) 30 or so minutes without symptoms. But as the day progresses, the anal tingling turns to burning—extreme at times—and I am unable to sit at all. Most relief comes from standing, and I try to sleep on my side with a pillow between my knees.

I just ordered a cushion your assets cushion hoping it will allow me some evening sitting time. I spend a lot of time in bed, which is hard on my back.

I’m hoping for some advice while I await PFPT, as this has really affected my quality of life. I’m thankful for any feedback.

For the last couple of months, I've had constant numbness (not completely numb), burning, tingling, and pain starting from my lower back and going down my left leg. I also feel it in my groin area, left inner thigh, and private parts.

The burning and pain get worse when the area is touched or even when I'm washing with water.

A few months ago, I had trouble peeing and had to push to get urine out. I also had a burning sensation when I peed. After taking the medications my doctor prescribed, it got a lot better, and the burning while peeing has mostly improved.

Around the same time, I also had some balance issues while walking, but that improved with medication too.

The burning and pain in my private area gradually got worse over about a month and have stayed about the same since then.

I don't have any swelling, discharge, or fever.

My urine stream feels weaker than normal.

I also don't get morning erections anymore. I notice more burning during erections.

Sometimes I have semen discharge during sleep, and the burning gets worse afterward.

I have spinal cord compression at C4/C5 in my neck from bone spurs and a bulging disc. I also have multiple disc bulges in my neck and lower back. However, my lumbar MRI report says there isn't any significant nerve compression.

I'm currently taking prescribed medications and have a neurosurgeon appointment next month.

Could these symptoms be related to my spine or nerve issues?