Hi. I have felt painful/tingling/fullness/“arousal” sensations in my clit for a week now. It is extremely sensitive and I feel it all the time, it is sore to the touch. This started the morning after a long period of masturbation one night. Went to the doctor and got prescribed lidocaine 5% cream. It does not help. Also got prescribed amitriptyline but scared to start it as it has many side effects and I don’t know how I feel about changing my brain. I am scared. Life has felt like hell and it’s only been a week. I’ve had suicidal thoughts. I have a loving boyfriend, best friend, and parents and I feel so terrible for feeling so awful and putting them all through this with me. When I google anything about any of these conditions, especially on Reddit, all I read are horrible stories of people never recovering, nothing ever helping, life being this way forever. It makes me cry and feel hopeless. I am begging anybody who has any success or recovery stories to please share and help me and others like me going through this experience find hope in the darkness. Thank you.

Hello everyone,

I thought I’d give you an update about my diagnositc workups and vascular diagnoses (pelvic congestion, reflux and more). I am trying to explain how I got there and how relevant the findings could be for HFS and CPPS. This will be a long post, but the length was necessary to understand the full picture and clear questions that might arise without it.

First I am going to give a quick rundown of my symptoms and the duration:

After many years of Hard Flaccid Syndrome (HFS ranging from mild at best to severe at worst) and chronic pelvic pain, I finally underwent extensive vascular imaging that revealed objective abnormalities which may be clinically relevant.

My main symptoms include:

• Hard Flaccid Syndrome (persistent contracted/semi-rigid flaccid state)
• Penile pain and spasms
• Penile sensory changes and episodes of numbness
• Perineal cramping and vibration sensations
• Pelvic floor pain and tightness
• Pain after ejaculation and during sexual activity
• Left greater than right testicular pain
• Anal and coccygeal pain
• Groin pain
• Lower back pain
• Abdominal pain
• Flank pain on both sides, sometimes extending from the lower abdomen upward toward the rib cage and into the back
• Urinary symptoms
• Testicle pain coming in phases

Background

My symptoms began abruptly at age 18.

I woke up one morning with severe localized pain in the penile shaft. Within 10 hours, I developed what is now commonly described as Hard Flaccid Syndrome. It’s really hard to say whether or not I injured my penis in some way the day before. I did do repeated masturbation the day before, but I went to bed fine and had no pain during the evening or at night. I only woke up with it, so the two situations might be unrelated and I always did doubt that I injured my penis somehow, as I was always rather cautios.

Over the following days and weeks, I experienced:

• Painful nocturnal erections
• Significant reduction in penile sensation
• Persistent penile pain
• Pain after ejaculation, particularly in the perineal/rectal region especially with following erections
• Progressive pelvic floor dysfunction
• ED to some extent

The acute penile pain gradually resolved over several months, and the major sensory loss eventually improved. However, the pelvic pain, perineal spasms, Hard Flaccid symptoms, and associated dysfunction persisted.

Before this event, I had years before occasionally experienced:

• Testicular pain since adolescence (including episodes diagnosed as epididymitis)
• Burning sensations around the urethra
• Painful erections after frequent sexual activity

These symptoms were relatively infrequent and were not a significant problem at the time.

Imaging History

I underwent many MRIs over the years, including a pelvic MRI in 2022.

In late 2025, I underwent more specialized vascular imaging after a referral that specifically mentioned suspected pelvic congestion syndrome (“Pelvic Congestion” was explicitly stated in the referral indication). This included:

• A CT scan of the abdomen and pelvis with contrast
• 2 MR angiograms with contrast, 1 (MRA) of the pelvis and proximal left thigh, and the other MRA of the abdomen

Because pelvic venous disease was already part of the clinical suspicion, these studies were explicitly performed with attention to pelvic venous congestion and venous outflow abnormalities.

I later sent all imaging studies to an interventional radiologist with experience in pelvic venous disorders.

After reviewing the CT scans and MR angiograms, he stated that the most notable finding was a dilated pelvic vein, consistent with a possible pelvic venous congestion disorder.

Importantly, the radiology team that performed the CT scans and MR angiograms also had access to my earlier pelvic MRI from 2022 and used it as a direct comparison study.

On re-evaluation, they noted that the same pelvic vein appeared significantly more dilated in 2022 compared to the current imaging, while on the more recent scans it appeared reduced in size and less prominent. They described it as having decreased over time, whereas in 2022 it had been clearly more enlarged.

Importantly, this same finding was already visible on the 2022 pelvic MRI but had been overlooked in the original radiology report.

This suggests that pelvic venous abnormalities may fluctuate over time, may partially regress, and may also be missed unless specifically assessed in context.

Dynamic Duplex Ultrasound

I was then referred to an interventional angiologist with experience in pelvic venous disorders predominantly in women.

Interestingly, he primarily had clinical experience in female patients with pelvic congestion syndrome. He explained that he also uses female pelvic venous hemodynamics as a reference framework when interpreting male pelvic venous flow patterns.

Standard ultrasound in the supine position showed little. However, because I explained that my symptoms are much worse while standing, he repeated the examination dynamically while standing.

During standing and Valsalva, he observed:

• Retrograde flow in the left internal iliac venous system
• Significant reflux in the left-sided pelvic veins
• A continuous downward reflux pathway that could be traced from the abdominal venous system through the pelvis, groin, perineum, and into the penile region

He noted that similar hemodynamic patterns are well known in female pelvic congestion syndrome, where reflux can extend toward the pelvic venous plexus and external genital region (labial venous drainage) during standing and straining.

In my case, he stated that a comparable reflux pattern could be followed into the penile structures.

Based on these findings, he recommended a super-selective pelvic venography/phlebography.

Super-Selective Pelvic Venography Findings

A super-selective venography/phlebography with a vein catheter through my right groin vein with contrast was performed a few weeks ago.

The venography confirmed:

• Secured pathological reflux into the left internal iliac vein
• Marked pelvic venous congestion
• Extensive collateral venous pathways, indicating chronic rerouting of blood flow
• Large left paravertebral collateral veins draining into the distal inferior vena cava
• Cross-pelvic drainage predominantly through the sacral veins to the contralateral side
• Pronounced varicosities of the pudendal vein extending down to the pelvic floor
• Venous drainage across the midline and into the left inguinal canal

A possible compression of the left common iliac vein (approximately 70%) was identified on duplex ultrasound and considered suspicious for May-Thurner syndrome. However, the invasive venography did not demonstrate a clearly hemodynamically significant compression, so May-Thurner remains a possible but unconfirmed contributing factor. An IVUS wasn’t done to further investigate it.

No convincing evidence of Nutcracker syndrome was found:

• The left renal vein showed no relevant compression.
• The proximal left testicular vein was narrow and showed no relevant reflux during Valsalva.

Symptom Reproduction During the Procedure

One of the most striking aspects of the procedure was that selective catheterization and contrast injection was purposfully done in a way to try to irritate and reproduce my symptoms. Some of my characteristic symptoms were reproduced.

These included:

• Perineal vibration/spasm sensations
• Anal pain
• Coccygeal pain
• Groin pain
• Flank pain on both sides
• Lower back pain
• Abdominal pain, including radiation from the lower abdomen toward the upper abdomen and rib cage

In particular, selective catheterization of the varicose pudendal veins extending to the pelvic floor reproduced symptoms in the exact anatomical region where I frequently experience spontaneous perineal spasms in daily life.

The sensations were not identical to my complete Hard Flaccid state and didn’t really trigger it (though I already was severely flared through the stress of the procedure), but they were interestingly similar and occurred in the same anatomical location.

An Embolisation could be a potential treatment option, which would get done in phases, so each phase require another entrance trough my groin vein with a catheter. I have not had my follow up appointment with him yet to speak about the details and potential treatment avenues to follow.

Additional Clinical Interpretation

I was also evaluated by a gynecologist/pain specialist with a neuropelveology background.

He diagnosed me right away with May Turner syndrome, Nut Cracker Syndrome and Dunbar syndrome. However me and a few other patients have doubts about the validity of these diagnosis as they were done rather quickly and based more on static images than the normal tests required.

However, he proposed that vascular abnormalities such as pelvic venous congestion could secondarily irritate the pudendal nerve and potentially autonomic pelvic nerves, resulting in a secondary pudendal neuropathy.

He also discussed that anatomical or biomechanical factors such as pelvic posture (including scoliosis and hyperlordosis) may influence venous compression dynamics in the pelvic/iliac region, although this remains a theoretical contribution rather than a definitive cause.

In addition, therapeutic and diagnostic options were discussed, including:

• Diagnostic laparoscopy to directly visualize pelvic veins (varices) and surrounding structures
• During such a procedure, potential decompression or neurolysis (nerve release) was discussed as a possible combined approach in selected cases, if clinically indicated and desired
• Possible decompressive surgical approaches in selected vascular compression syndromes (e.g. ligament release procedures in relevant anatomical entrapments)
• Physiotherapy focusing on posture, core stability, and lumbar-pelvic mechanics
• PF PT wasn't dismissed, but not the priority in comparison to normal PT
• Trial of antiplatelet/anticoagulant medication (e.g. ASS or stronger agents depending on clinical evaluation)

He was very honest and said that a complete remission of symptoms was unlikely, though he was confident that he could improve my quality of life with these symptoms.

My Current Working Hypothesis

My current evidence-based interpretation is:

1. Objective pelvic venous reflux and pudendal varicosities are present.
2. These vascular abnormalities may create chronic congestion and pressure in the pelvis.
3. This may secondarily irritate the pudendal nerve and/or autonomic pelvic nerves and cause neuropathy.
4. The resulting neural sensitization and pelvic floor dysfunction may contribute to Hard Flaccid Syndrome and chronic pelvic pain.

My goal moving forward will be to get more clearance on the compression diagnoses. I will have another appointment with a european specialist in may turner syndrome and hope that his expertise can shed light on which route I should follow when it comes to embolisation, stents and/or laproscopy.

Important Disclaimer

I am not claiming that this is the universal cause of Hard Flaccid Syndrome, nor that these findings definitively explain all of my symptoms.

However, this is the first time in many years that objective structural abnormalities have been identified and closely correlated with symptom reproduction during invasive testing.

I am sharing this in case others with Hard Flaccid Syndrome, chronic pelvic pain, penile numbness, perineal spasms, or unexplained genital symptoms may have an overlooked vascular component that has not yet been investigated.

How can you tell if you pudenal nerve entrapment of any branches of the nerve?

I mean a symptom doesn't exclusively determine PN or PNE

For example I can say numbness but numbness doesnt mean entrapment or PN necessarily.

What are the specific test to determine entrapment ?

I’ve completely lost clitoral sensation for more than a year, and it keeps getting worse.
It feels like a lifeless piece of my body, and I’m only 25 years old.

When I think it’s my fault because I used to cross my legs and wear jeans that pressed on my intimate area for hours, I feel like shit.

I’ve realized there seems to be no way to improve it, no treatment, and no evidence that physiotherapy helps with numbness.

I feel like I’m doomed and that I’ll have to stay alone forever, unable to have sex, feel pleasure, or experience orgasms.

I don’t want to keep going anymore. I have a miserable life, and this is not the life I want.

hi! i am dealing with burning pain in the penis when touching my perineum or shaft at all, even very lightly. I imagine this is due to an irritated pudendal nerve.

has anyone recovered from this successfuly? any tips? i am so discouraged and afraid. dealing with this nightmare for 5 months now.

please help.

i’m on gabapentin and in pelvic floor therapy already, neither of which seem to help

I have had these symptoms for around 6 months, I live in the middle of nowhere and have to travel and wait to see any specialist at all. I'm currently waiting 2 weeks for a call from a surgeon to *maybe* get Botox injected in my butt...how is this my life...But what the hell do I do while I wait? I can stand walk/for maybe an hour total in a day. I can sit for about 5-10 minutes a day. Laying in bed hurts if I'm on my back. I'm in near constant 10/10 pain all day everyday. I scream in pain. A lot. I sob in pain. A lot. I mostly try to sleep because it's the only time I'm not in pain. I have lidocaine cream which does absolutely nothing, ice helps a little, for a little while. I take thc/CBD gummies and that helps a little. Is there anything else I can do? Can I ask my doctor for anything while I wait to see a specialist? I don't know how to handle this pain. Please help.

Hi everyone,

I’m trying to figure out whether my symptoms sound more like prostatitis/CPPS, pelvic floor dysfunction, pudendal penile nerve irritation, or something else.

Main issue:
I’ve had on/off mild but persistent penile/pelvic/erection problems for about 1.5 years. The pain is usually not severe, but it is irritating, distracting, and has affected my erections and confidence a lot.

Timeline / possible triggers:

• Around 6 months before the penile symptoms started, I had chronic lower back pain from heavy deadlifting. When this started I was on testosterone 300mg/week, 20mg anavar for 6 weeks, and 15mg accutane day + arimidex low dose (to lower estrogen). Went off and did PCT and regained libido and erection a few months later without doing blood test to check hormones. Stopped accutane 3 months before these symptoms started. Lower back pain has persisted for 2 years, been better in periods but is currently bad again. Been to physios, and MRI and they think it is muscular because no obvious structural injury. Comes and goes in severity.
• The penis symptoms began the day after several possible mechanical/irritating factors:
  • Did 30min cycling early in the day.
  • Did 15min bathmate penis pumping(but much less force than what i normally did) few hours before sex.
  • Drank some vodka and almost a bottle of wine.
  • Probably a bit stressed and anxious since it was first date in a while and first time sex in 6 months.
  • Had sex, without any obvious injury.
• I don’t know exactly which one triggered it, but the symptoms and pain started the day after I had sex.
• Did STD-test, nothing found.
• Later, I heard about vacuum therapy for nerve injury and tried a low setting LeLuv vacuum penis pump, but that seemed to make symptoms somewhat worse.

Symptoms:

• Mild aching pain, mostly along the left side of the penis+base+perineum area
• Stinging/stabbing type sensations
• Sometimes more severe stinging, aching pain that comes and goes randomly any times.
• Mild ache on the left side near the penis base. Sometimes mild ache in the whole penis and area around base.
• Mild perineum ache/pain
• Pins-and-needles feeling in the penis, especially when erect or masturbating
• Penis feels more numb / reduced sensation compared to before
• Weaker erections than before
• Harder to get and maintain erections
• Sometimes small muscular spasms in pelvic/glute area.
• Symptoms can flare with masturbation/sexual activity
• Low libido
• Penis feels kind of dry like there is more friction when masturbating. Possibly some permanent dryness/sebacous gland issue due to accutane use?
• If I stop masturbating for 2 weeks, the penis sometimes feels even more numb, and erections do not clearly improve. Then when I start masturbating again, the pain comes back more or less as usual.
• Hormonal: Blood test showed that testosterone went from 30nmol pre starting low dose steroids+accutane to 16nmol 1,5 years post stopping,SHGB went from 60nmol to 52. And free testosterone went from middle of reference range to now bottom of reference range. When I took the last bloods I had mild depression, low libido, stress from being unemployed and slightly worse diet, a bit less strength training etc. Vitamin D was normal/high, I was on supplements like: tongkat ali, shilajit, vit d, zinc, magnesium etc when I took the blood test. But I've had many periods with higher libido, better erections and less depression in the 1,5 years since stopping testosterone so I think I can raise it more naturally and that this is not the main cause. But I am aware that this can explain libido and erection issues, but not the pain.

What I do NOT have:

• No urinary symptoms or problems.
• No burning when peeing
• No obvious bladder/prostate pain
• No classic infection symptoms.

Tried this with barely any improvement:

• Pelvic floor stretching 5-30mins a day. No huge improvements, maybe slightly better when consistent, but struggle to stay consistent with it. Did the stretches from the pinned post for a long time.
• Nerve supplements: b complex, Vitamin b12, benfothiamine, Acetyl l carnitine, alpha lipoic acid, PEA, magnesium, multivitamin,taurine, l carnitine tartate, l theanine.
• Peptides: 8 weeks bpc157 + tb500 subq stomach, 2 months mk677, 2 months ghk-cu.
• Mindfulness meditation, stretching, walking more etc.
• Reverse kegels, relaxing, trying to unclench pelvic area.

Urologist visit:

I've seen two urologist.

1. The first one just felt the penis and testicles with his hands, said that it doesn't look there is any issue, and that it is most likely just because of stress and tension. So no help here.

2. The second one did a quick ultrasound of testicles/prostate + fingers on prostate and asked if I felt any pain and I said no. But he said that my symptoms sounded like prostatitis, and wanted to prescribe medicines. I asked if there was something on the ultrasound he saw which caused this. He mentioned possible mild calcification/swelling or something like that, but I did not fully understand it and he didn't seem convincing. He still thought it could be prostatitis and prescribed:

• Doxycycline 100 mg for 10 days
• Vimovo (500mg Naproxen, 20mg Esomeprazole)- anti-inflammatory
• Tadalafil/Cialis 5 mg

He said I should book a new appointment if it didn't get better.

I’m unsure whether to take the antibiotics because I don’t have typical infection symptoms and I’m worried about side effects/gut flora, especially if it’s unlikely to help. The last thing i need right now is more health or mental health problems. I'm currently 6 months unemployed, and I already struggle with some mild depression/anxiety and need to be sharp and healthy for possible job interviews, summer plans etc.

I have also already tried tadalafil 5 mg for a long time + occasional use, but it gives me stuffy sinuses and makes me more prone to headaches, and the effect has not been amazing.

I also am not convinced Vimovo/naproxen is a good long term solution, and NSAIDs also has side effects and can damage the gut.

Questions:

1. Does this sound like prostatitis/CPPS even without urinary symptoms?
2. Could this be pudendal nerve nerve irritation from sex/pump/cycling/mechanical trauma?
3. Is the antibiotics necessary? Since it is anti-inflammatory it might give temprorary relief for 10 days, but does it make sense to take this antibiotic right now will help my symptoms long term? I feel like it might be good to take it just to exclude bacterial infection, but am scared of possible side effects/gut/mental health/new health issues from taking it, which would have really bad timing right now.
4. Did oral antibiotics help anyone long term with similar symptoms when there was no confirmed infection?
5. Feel like I have tried almost everything. Starting to lose hope since there is no improvement for 1.5 years. The pain is not as extreme as many other people here, but from going from super healthy, high testosterone naturally, amazing erections and amazing sex, in shape etc to weird nerve pain + bad erections + the "not knowing if it will get better, not knowing what the problem is, not being able to perform or enjoy sex as much" is enough to reduce life quality and confidence a lot, reduce motivation for dating and cause more depression over time. What do you recommend as my next steps?

Not looking for a diagnosis, just trying to understand what direction makes most sense before I take meds that may not be necessary.

Thanks.

I’m listing the things I’ve done over the years that I think might have contributed to my constant clitoral numbness. I’d like honest opinions, especially from anyone knowledgeable about nerve issues or pelvic health.

1. Prolonged sitting on hard chairs at university for many hours every day.

2. Strange postures with crossed legs and tight jeans with a belt, with pressure directly on my crotch/intimate area for many consecutive hours.

3. Masturbation in general, any type of stimulation.

4. Wearing tampons for many hours every day.

5. Maybe washing too aggressively sometimes, possibly pressing too hard with my fingers while cleaning myself.

6. Inserting tampons too aggressively. A few times, very rarely, while inserting a tampon without an applicator, I accidentally pulled downward on the tissues around the clitoris. I could literally see the clitoris being pulled downward toward the vaginal opening while I was pushing my finger inside to insert the tampon. I never felt pain though, and it only happened a few rare times.

7. Somewhat aggressive shaving/depilation on the vulvar skin.

That’s basically it.

Which of these things do you think could realistically contribute to permanent nerve damage? The thing is, at the time I never noticed anything alarming, never experienced pain, and I felt like I had a pretty normal life compared to everyone else.

So I’d really like your opinions, because I already struggle every day at 25 knowing I may never have a normal sexual life again. From all the research I’ve done, it seems like there’s no real treatment for numbness and that it may be permanent. But on top of that, I also have to deal with guilt over the possibility that I unknowingly caused this shit to myself.

I’d appreciate any thoughts or experiences. Thank you.

DOES ANYONE HAVE AT LEAST AN IDEA ABOUT WHAT IS GOING ON? PLEASE HELP, THANK YOU.

I have a constant intermittent sensation which lasts a whole day or more, sometimes feels like something on one side of the anal canal, or sometimes feels like a more central bulge in the anal canal. You could say it feels like I’m sitting on a golf ball even when I’m not sitting down. When I do sit, certain chairs sometimes makes it worse — if the chair is too soft it can intensify the sensation, and sometimes if the chair is too hard it can do the same, but recently harder chairs feel therapeutic. I was told this is due muscle spasms. I have been seen by PTs and DR.s who say that I do have tight hypertonic muscles. I even notice they are tight when I am having these symptoms. However, I don’t think the muscles are the source of my sensations. And here’s why:

After about a year, I’ve noticed if I press on a butt cheek with fingers near the butt crack and push it more towards the butt crack, and after 10 seconds I release it… it temporarily alters the sensation I have. It can disappear or cause less of the bulge sensation for a minute or so. Has me kind of curious here because I am realizing this sensation which appears to be exactly in the canal, is actually about 80% not originating in the canal. 1. Is this pudendal neuralgia or does this still fit muscle spasms / hypertonic pelvic floor better? 2. Can the pudendal nerve cause the muscles to spasm tight?

Seems silly but the only thing that takes away the discomfort is nicotine gum or mints. But I never had outright pain more of a low level irritation.

Can anyone explain how they help? I’m doing them, but staying motivated is hard when it makes no sense to me. Anyone?

Hi! I'm completely new here and my english is also real bad, I'm sorry if I'll sound confusing and weird, I tried my best. I also used translator to write this post so....please don't throw stones at me to fast.

I'm 23 y.o Male I had these symptoms for 3 years

Numbness in are between anus and penis

Cold sensation in anus and testicles

Pain worse when sitting

Premature ejaculation

Weaker erections, less full

Difficulty defecating

Weak urine stream

My questions are:

1. After 2–3 years of symptoms, is it possible to regain original state of things with treatment like relaxation exercises, physiotherapy ?
2. Should I focus on pelvic floor relaxation excercises or seek a specialist immediately?
3. Is there any point in repeating the electrostimulation therapy?

And my main concern is that I lost about 3–4 cm (1,5inch)~ in erect length (from 16–17 cm to 13–14 cm/6,6 to 5,1inch) and lost girth. I know that it sounds pathetic but like this condition affected my sex life big time and I'm just sad that I didn't act on it sooner and waited for that long

I tried electric stimulation therapy (chair with metal contacts, metal bumps?) — 6 months ago, unclear if it helped, well it kinda helped but not so much and I feel that by the time passed all the good effect is like months gone.

I also took nerve medication from neurologist in march of this year, it helped but still not in a long run and very briefly as it feels

No pelvic floor exercises yet, and maybe should've done them at first and now the moment is gone?

This problem is really messing me up, I went into depressive episodes and it's just scares me, what if I'm so f-up that there's no way to fix it no more? I don't even know if plastic surgery to regain size could help cuz in the end it might not work since the problem is a stuck nerve and only that. I'm sorry for swirling around this problem again and again, it's just really hard for me, I want to be happy and love again, I know that person I love accepts me the way I am, but I do not accept myself that way. I feel like an ugly parody of myself.

Thank you in advance, I hope that my post is at least understandable and I don't sound too weird, also sorry for going....too much into detail.

Does being able to sit without an increase in pain or discomfort versus just laying down / standing indicate just a hypertonic PF or some other form? This is what confuses me the most. I relate to some things here, with the tingling and stuff and super tight pelvic floor/ bowel troubles pain after defecation etc etc, painful orgasms but I want to make sure I am covering all grounds But I can sit without an excess in pain.

Thanks for your input and as of now I’m waiting to see doctors, doing good PFPT, avoiding strenuous activities, cut out sugar/alcohol/caffeine, 2.5 Liter water day, going out for walks. I’m dealing with alot of strange new sensations and my mind jumps to PN because of the pain I experienced from the rectum to the penis when I was in the hospital, but that’s sort of calmed down and now it’s more like rectal fullness sometimes and tingling in the genitals. It’s just very hard to gauge, because the sitting aspect truely does not increase or spike symptoms.

Thank you for your input. I’m stretching aswell (4 legged chair thing, child’s pose) bc i’m sure that will be helpful if it’s just hypertonic anyways. Any input is appreciated. And I mean no disrespect to those who are suffering greatly here, I hope that everyone in here recovers irregardless of the extent of there suffering.

I am male and for the past 3 years my genitals, both penis and scrotum, are always cold and the skin feels rubbery. I have ED as a result, but I think that is mostly due to the mental toll of this and the lack of sexual sensation. I read a lot of people on here have burning pain and other unpleasant symptoms, but this is my only one. I have been having trouble finding support and have mostly been on my own to figure it out. My doctor says if it is a nerve thing there is nothing that can be done and told me to learn to live with it. I am seeing a PFPT and she says I do have very tight hips, so we are working on that. It has been 4 months and I don't notice a difference. In fact I often feel worse after doing the stretches, but I don't know if that is a sign it is nerve irritation.

I guess my main question is do people have this without pain and only sensation issues and is it normal to feel worse after stretches? By worse I mean my genitals are even colder to the point where I usually put a heat pack on my groin.

I also have a hypertonic pelvic floor. Lots of pelvic pain. She found this via a deep vaginal exam

Hi! I’ll keep this as short as possible.

4 months ago, started having intense rectal pressure & the feeling like i needed to have a bowel movement even if i didn’t. This eventually turned into a 24/7 pain “golf ball in the rectum” feeling. I had tests done that all came back clean (colonoscopy, pelvic MRI, doppler ultrasound)

I deal with this from the moment I wake up, to the moment I sleep. Other symptoms include:

-Super sensitive penis. touching the head, or any part really will feel hypersensitive and also cause a constant reflex/spasm. Erections also cause this spasm effect there, where it’s constantly pulling back towards my stomach.

- Tingling in perineum / bulbospongious muscle area. I wouldn’t say necessarily it’s like a painful thing. Just tingles when I’m relaxed

It hurts constantly and I can’t sleep these days. Lost job, relationships etc…

I’m seeing a urologist tomorrow, been in PT but doesn’t feel like it’s helping at all.

One weird thing is, sitting doesn’t necessarily make it worst at all… Wether i’m standing, sitting, laying down or anything- it all just kind of hurts the same.

Does this make sense with Pudendal Neuralgia or does it point more towards muscle / LAS? No muscle relaxers are helping, and pain relief in general is minimal.

I’ve cut off masturbation, sports, minimize sitting etc…

Any tips for me? Thoughts?

I imagine there’s some nerve irritation / damage going on. Will this be permanent? I’m being brave and optimistic, getting all the help that I can, but at the same time this is kicking my ass.

Would appreciate any replies.

Thanks,

I'd love to explain it in detail, but I don't have the energy. I've been struggling with this cursed thing for years, but it's never been this bad. It all started with symptoms like ED and prostatitis. I've had many treatments: ESWT, penile vein surgery, embolization, and many more. But in the end, something happened that completely spiraled out of control, the ED that I'd been keeping under control with medication for at least three years. Even as I write this, I feel a tingling sensation running down my back, through my penis, anus, and every surrounding tissue. Sometimes I feel it all the way to my toes. Doctors don't believe me, but this cursed thing has completely shrunk my penis tissue. I'm 30 years old and I never get an erection. My rectum and pelvic muscles have atrophied completely. But even when I tell my psychiatrist, he says it's impossible. But I'm experiencing it, and I feel it every moment, every second. I'm so hopeless. My marriage is awful. My wife and I don't have sex anymore; I can't even think about it. I also know there's no solution. I've read many stories from people who've had surgery or tried alternative treatments here, and I've come to the conclusion that there's no escape. I feel terrible.

Due to ketamine I was diagnosed with a hypertonic pelvic floor muscles after I had a spasm attack in my left leg in may 2025. My pelvic floor muscles felt tightened and got somewhat looser the more I did the breath work excersises from the PT.

In september 2025 after a stress situation and weekend of taking psychedelica (shrooms) I felt a strong pulsation in my arteries on my perineum and inside my pelvic floor every time I sat down that went to my brain arteries on both sides of my tempel arteries. My pelvic floor muscles went from tightness to numbness. Breath work from PT doesn't do anything anymore. Sidenote: in december i got an STD that caused me to have great pain in my rectal area. After the pain went away I also didn't feel the pulsations anymore. A week later I putted alot of pressure on my pelvic floor muscles which caused the pulsation to come back. (A dumb decision)

Unfortunaly since two months the pulsation in my arteries got severely increased. First It was just the sitting or walking for long periods that made the arteries pulsate. Weed, alcohol or cafeïne also makes it worse. Since I took Ritalin in februari 1 time everything got much worse (still no stinging pain tho) and yess I know I made a dumb decision again.

Now I'm sensitive for led lights, crowded situations, talking for a long time, using strength like lifting, if I need to do a number 2 badly, if I do stretching or breath work, reading, watching TV, cooking and even meditation. Everything connected to my pelvic floor makes the pulsations worse and I don't know what to do because mentally I feel perfect. In 7 weeks I'm going to the hospital that specializes in pudendus neuralgia, but since I don't feel stinging pain like with normal PN i wonder if it could be anything else. They will be the first hospital to diagnose me. Is there anything else I should ask them to look into? The pulsations are constant coming from my pelvic floor to my tempel arteries.

Thanks alot for all the reactions and I also wish everyone a happy healthy life.

Thanks for running this group that I just discovered. I'm adding the "Figure 4" stretch tomorrow.

Main question if TLTR, is whether there's a known pudendal nerve expert near home in Cleveland. I haven't found one, not even at the Cleveland Clinic.

Story:

61M a year into my 4th flare-up of perineal, groin, and scrotal pain spanning 20+ years. Been able to recover each time. Last three flare-ups lasted 6-30 months.

Diagnoses have been GF and pudendal neuralgia, chronic pelvic pain, and post-vasectomy pain. Three of four bouts, including this one, followed recreational bicycling. Had vasectomy 21 years ago, urology initially pinned pain on that, and had it reversed. Pain free 5-6 months later. Also lowered my PSA from 4.2 back to 1.0 and restored my T from 300 to 750, even now 20 years later.

Next, shortest bout resolved with gaba and NSAIDs. Third bout, longest, finally resolved with cord blocks, GF blocks, and pudendal blocks.

This bout, I had targeted micro surgical spermatic cord denervation instead of block(s) which resolved stinging in the cord but left the other, worse perineal symptoms. Urologist referred me to a pudendal specialist urologist about 3 hours away. Can't see him 'til September.

Classic symptoms. Pain free in the morning, worse as the day progresses. Too much sitting with job and winter in Ohio. Stretching, Pelvic PT, TENS, massage, ice, hot baths, walking all help, but just can't get over the hump. Hoping the new stretch directed here helps.

Pain mgt. block of pudendal in March worked but wore off quickly. Steroid was not durable. Pain mgt. recommended a second block, this time a caudal block, to address peripheral nerves. That's next week.

Doing Pregabalin, and Meloxicam. Just added Nortriptyline. Supplements are Nerve Shield, COQ10, and Zyflamend..

Lastly, had L5/S1 fusion in the midst of this in 2012. Pain mgt. also referred me to neurosurgeon to look at the sacral and lumbar.

VERY open to hints, suggestions, or recommendations on what to continue, discontinue, or add. Also interested in learning of resources near Cleveland OH.

Thanks!