Health Organization for Pudendal Education

Hi I am new, I found this forum and I decided to post my story because I am now hopeless. Sorry for my poor English, I am not natively English speaking.
A due premise on my clinical condition: for a genetic defect I was born without an uterus and with malformed genitalia and I had a corrective surgery in my late puberty but I have always been otherwise in good health and without any relevant conditions, other than I have to take HRT with bioidentical estrogen.
I had to specify this since we are going to talk of the pelvic area.

In Winter 2021 I had a plain cystitis (stinging bladder pain, opaque urine), the acute phase of which subsided in 1 or 2 days on Levofloxacin. However I was left for about 15 days with rectal pain, worsening thru the day, which eventually subsided by continuing Levo for more 15 days on doctor's prescription. Then I was fine without any more symptoms until last Autumn.

My nightmare started in October 2021, being 8 months now since.
I started experiencing a progressive rectal pain getting worse in the evening/night and sitting, being pretty absent in the morning. I thought they were hemorroids and took some flavonoids but they did not help. After few days the pain became more severe affecting my urethra, but it was not like cystitis. I had great discomfort with sitting and with doing some movements, I felt as though something was pulling between my urethra and rectum. I noticed little spots of both blood and clear mucus in my panties in correspondence to the urethral opening. There was no pain or bruising when peeing though. I went to my urologist which suspected a bacterial urethritis and gave me Levofloxacin 500 for 10 days. In one or two days the acute symptoms subsided and I had no more discharges, but the rectal pain and general pelvic discomfort persisted. A first uranalisis and culture were completely negative. I waited more days and my urologist suggested to start another antibiotic, Sulphomethazol + Tripemoprim. After one day on it my symptoms got so bad that I risked to end up in emergency. They became like actual cystitis. The doctor told me to stop it. I waited some more and I was put on Nitrofuranoin. Once more my symptoms got worse on this new antibiotic and I was told to stop it. I was told to take cortisone suppositories and some herbal supplements for pelvic pain but they did not help. After some time I had another uranalisis and culture, always negative.

I had an ultrasound scan of my pelvic area which revealed nothing.

The rectal pain was alternating with UTI-like symptoms, often getting worse with the progression of the day and insanely bad at night. They however subsided or got less severe after a sleep.

I had a cytologic uranalisis, negative. I was put on cortisone for some days in the hope to alleviate my pain since no pain killers helped. It helped only to some extent, then I had to taper it down.

My doctor then decided to ask for an urethral swab. It revealed candida albicans susceptible to common antimichotics. I was put on Fluconazole for two days but it did not help. And it was now Christmas. The worst one of my life. After some time I repeated the swab and it revealed still candida but also staphilococcus aureus resistant to most antibiotics but phosphomycine. Therefore I was put on phosphomycine and again fluconazole for 5 days. After 4 days on this new therapy my symptoms got so insanely bad again that I risked to call the emergency once more.

I then had a pelvic MRI, which once more showed *nothing*.

I decided to go to an infectivologist. He asked for a swab (both vaginal and urethral) sensible to chlamidia and mychoplasms. It revealed ureaplasma urealyticum, sensible to many antibiotics including doxicycline. So I was set on probiotics (both oral and vaginal) and on Doxycycline for 30 days. Once more, after two weeks my symptoms started getting so severe that I was told to stop the antibiotic. And it was my birthday, the worst one of my life.

My symptoms now were mostly rectal pain, occasionally extending to the urethra and becoming UTI-like, always getting worse during the day and improving with sleep. They also showed a trend to worsen in the 30 minutes or so after a bowel movement, not during it. When the rectal pain is intense, often by night, when I have to wake up to pee I feel no bruising, but in the few minutes after peeing my rectal pain becomes stinging pain and often I also feel bruising in my urethra. But it is definitely not like when you have cystitis. No pain killer helps, I tried pretty everything around. Only warm baths temporally ease my pain.

I decided to have a rectal exam which showed no emhorroids, no fistulae or prolapses, just a vague redness/hirritation which the proctologist defined "hidiopathic proctitis". He gave me some herbal suppositories which did nothing useful other than worsening my hirritation.

I had blood tests, which revealed nothing.

I then decided to see another urologist and he was the first doctor mentioning the word Pudendal Neuropathy. He suspected that a (likely) initial UTI triggered PN and that I have no more infection at all. So he put me on Lyrica, 100 mg daily.
I had a hard time tolerating it. I got intense sedation. But it did not help substantially. I took it for some weeks then I had to taper and discontinue it because I could not tolerate the sedation.
I am now taking palmitolethanolamide (1200 mg/d) but it is not helping.

One thing I didn't mention is that since one year I suffer severe constipation. I experienced 2 or 3 blocks some months before my symptoms showed up, I don't know if that can be a cause or rather an effect of something else.

I then had another MRI by a neuro-radiologist focused on the pudendal nerve which sadly did not show anything abnormal, no entrapment or compression or damage.

Now, after 8 months, I am still here struggling booking with doctors, having exams, witouth a clear diagnosis and no working therapy. My life quality is highly compromised.
I still am not convinced it is PN or rather an underlying chronic infection which makes my pudendal nerve inflammed and which can't heal, or whatever else.
But if it is an infection, why every antibiotic (if we exclude Levofloxacin, initially) always *worsened* my symptoms ???
I also suffer depression and anxiety, and this drama definitely worsened my condition. I feel hopeless and I cannot see any light at the end of the tunnel.
Any comment, opinion or support is highly appreciated.

This is my story.

I have big problems with a constant sensation of urinary urgency ( urethral one is like a constant pressure , that sometimes get weaker after urinating , but sometimes remain same or get even worse ) , it all started after a pituitary surgery that gave me diabet insipidus and i urinated huge amounts for 1 week .

My urologist found a primary bladder neck obstruction ( he only did urodinamics and a flexible cistoscopy , in Romania we don t have video urodinamics sadly ) but he thinks it is not the only cause and is more a nerve / muscle problem cause even before pituitary surgery i strained many times to urinate and that lead to a rectal prolapse i treated with abdominal laparoscopy with a absorbable mesh.

First few days after prolapse operation i felt great but when i started to defecate again i struggled and strained a lot for more than one month , and when things started to get better i got this pituitary apoplexy.

All happened last year , 2 operations in 2 months sadly that impacted my life a lot and i am only 37 years old.

After ibs treatment the stool last summer started to be normal but slowly right now i kinda have same problems like i had 1 year and some months after prolapse surgery , fragmented stool always even if is soft that i defecate in many small stools over the day and this huge urinary problem ( way worse than this defecation problem ).



Right now sometimes I can pee almost normal but this is rarely , most of the time I have to strain a lot.



I studied so much my problem i became a little doctor myself even if i am an economist. I really see no hope to cure in Romania and i wonder if is not nerve related my problem , maybe not entrapment but a neuralgia for sure. Sadly me and my wife are losing hope. I hope i did not bored you with my message but i am really hopeless right now.
I am curios if we have patients here with my symptoms , especialy the urinary ones that managed to find a cure.My quality of life right now is almost non existent.
With respect , Valentin !

We kinda have alot of same problems......i think is a pelvic floor dysfunction and a nerve problem.What u tryed until now ?

Your story is quite different than mine though.I have not any concurrent health issues and no suergeries done.

Anyway, for an update. Three doctors were convinced it was pudendal neuropathy. But I was not responding to Lyrica or to Amitriptyline either.
The other day I saw a proctologist expert with pudendal nerve, who inspected me and stated that no, I have not PN, absolutely.
I rather have an ano-rectal and recto-rectal prolapse which can be the cause of my troubles, and asked for a defeco-MRI. In fact, I have been suffering severe constipation since years, and that may have triggered the issue.
Mine is a strange problem. The fact it started as a supposed urethritis might be a fatality. I am well/better when I skip going to the toilette, usually. But when I poo, that after some minutes triggers my rectal pain, which often tends to propagate to the urethra/bladder neck giving urinary symptoms which *resemble* an uti but clearly are not.
To be 100% sure I will also see an urologist specialized with interstitial cystitis in some days but now I am almost sure it is my internal rectal prolapse.
I am scared because I don't want to have surgery there. And I don't trust the outcome either, I read horrible stories. My doctor said that physiotherapy and fixing some hormonal issues which can be a cause of pelvic dysfunction could with some chances treat the problem. I really hope so. It is an invalidating pain.

Don t do surgery for rectal prolapse.I did it and is not ok.I don t think rectal problems triggers urinary symptoms cause i also had one...if u are sure pudendal nerve is ok than is a pelvic floor dysfunction or something with your bladder ( ic or a bladder neck obstruction if u can t pee easy ).Lyrica is a really low dose maybe this is the reason it did not work....i think u should try a nerve block to be sure , maybe a simple exam is not enough

U should do the defeco mri i also did.Will help doctors

I don't have all of your symptoms but the symptom of pain after a bowel movement (BM) is a common one, especially as you describe radiating up from the rear as though running along the nerve until creating bladder pain.

There are some other posts in the forum about this. I have experienced this at times in ways that were quite debilitating. It has been better the last while but then recently I'm just noticing a tick up of symptoms.

In my case, I had no history of bladder or pelvic issues or any health issues. I had a simple UTI (from intercourse) but after the antibiotics I had a big fungal infection that got out of control (misdiagnosed: more antibiotics over several months). The fungal infection raged due to more antibiotics. As soon as I got on high dose antifungals (600mg per day: with liver tests to ensure safety) it abated and I tapered down.

However, this protracted period of severe infection and bladder distention, inflammation, left my bladder and surrounding nerves and muscles damaged/impacted.

Currently, then, I manage IC symptoms (sensitive bladder wall, dietary restrictions, supplements), as well as pelvic pain (hypertonic pelvic floor) as well as PN pain, which I can distinguish from simple tight pelvic muscle pain.

This sensation of pain after a BM is one that I put in the category of PN pain--because it almost feels as though the BM passes by my nerve and irritates the nerve, and lights it up, like a fuse on an explosive device, I can feel the pain travelling up, until I have sort of cramping, spasms, pain, urgency, frequency, in my bladder and other areas (urethra). I have been noticing more frequency recently and some mild urethral pain so I started tracking again and I noticed it is PN not diet (inside the bladder wall), (Side note: I would love if someone designed an app that includes pelvic pain, sitting, and IC type pain data points--current apps don't triangulate all of these.)

Like you, I felt best if I just didn't have a BM. ONce I had a long flight and sat with no pain and was constipated and I realized staving off a BM helped with symptoms and I could sit better--but of course, this is not healthy. It is the mechanical action of the BM passing by the nerve that I Feel lights up the pain and it takes about 15-30 minutes for things to really start cramping, and that pain can last for 2-4 hours and can require me to stop everything I am doing to address the pain, as focus is not possible.

So what helps me with this specific type of pain symptom? Many things I have learned from other forum posts.
-I take a lot of magnesium citrate at night before bed. I take it in capsule form..up to 450mg (and I take 250mg of regular mag at lunch). This ensures that my morning BM is very soft--overly soft..as another poster said "like applesauce". Sorry for the visual, but the point is, this reduces the possibility form me of a mechanical irritation of the nerve.
-avoid straining at all cost. One reason I think I have a slight uptick now is because I skipped the magnesium for a while and I did have some harder stool and I did strain a bit. I mean a tiny bit. It is so easy to forget these normal habits..any time I have strained has been very bad for my PN. It somehow stretches the nerve and it gets mad at me.
-I found a very good pelvic floor physio who helped immensely with this. This was after years of trying not helpful PTs. I had to fly to another country (Sarton Physio, California) for them to really get in there confidently and relieve pressure on the muscles. For me there was far more tension rectally so I get rectal PT in the "posterior section". Few PTs do pelvic floor work, and few pelvic PTs do rectal...so it takes work to find these folks. They deserve to be paid $500 an hour. It should be called gynecological and rectal physiotherapy as a medical speciality. This is why I have spent 6-10k annually on my taxes on physio because it costs 135-185$ hourly where I live. I did 3 weeks of intensive physio in California 3 hours daily (that included also external deep muscle relieve like Rolfing: helped) to work me out of a stuck pelvic pain). I found someone in BC Canada who is excellent (Kirsten at Tapestry Nanaimo physio). She goes very aggressively with strong pressure (after of course assessing me) rectally and then finishes vaginally. We found that when she started vaginally I had spasms/cramping and I had to void mid session--the PN was getting aggravated and creating these spasms. If we start rectally and end vaginally, I do not have this. When I first started seeing her I could not sit for 15 minutes, after 5 weeks I could sit hours. It lasted me well also.
-Heat: if I already am in a spasm (hard BM, tight muscles, straining), a hot bath emerging all of muscles helps. I lived for a while with no access to a bath and my PN got way worse...that is when I had to go to the USA and quit my work. having a daily or more than daily if flaring up hot bath helps. Same for a hot water bottle on bladder. I sit /lay on a heating pad on the rear area and have a hot water bottle on my bladder/tummy.
-walking and movement and for me even light jogging (strange I know) sometimes helps. for me this about getting a lot of circulation going, and I feel also doing something neurological that gets the muscles firing in other things and to let go of the grip on the bladder spasms,. Sometimes I have to walk for hours though
-reverse kiegals (like very gentle release, not pushing) post PM if twichting to try to help it release rather than to clam up. I feel my rectum squeeze in shut when this PN cascade happens like a barnacle claming shut for hours. If it happens at night I cannot sleep due to the pain . For me the pain is mild but persistent enough to be distracting and somewhat consuming at times.
-i ignore some "fantom" urgency when I know it is caused by this, knowing I don't actually have to void (this is very very different from when I really do need to void from painful foods which I need to clear out asap---ie don't let ANY PT tell you just should hold in your urine if you have a bladder wall issue, or gaslight you into thinking you don't have a bladder wall issue as you can have both ---holding in your urine will cause more problems in such a case).
-Don't work with any PTs or doctors who are gaslighting you as this is too emotionally exhausting on top of the pain job you are dealing with.
-I think amitryptiline also helped me. It stopped the twitching and spasming post BM but I could not continue the medication due to heart palpitations. I only took 10mg for a few weeks but it certainly numbed the nerve (it did not help bladder wall issues though--hydroxizyne did that). I feel in emergencies I would take an amitryp to try to numb out the nerve signal a bit.
-avoid heavy lifting and straining. I got myself into a massive flare with lots of these BM moments after lifting a recliner chair up a flight of stairs. I am very strong and I forgot to not do these things. Having very tight abs does not help
-certain yoga stretches that stretch out all of the muscles that run into the pelvic floor
-psoas release, digging into abs by a physio'
-deep rolfing type massage or chinese massage on all of themuscles that tie into the pelvis (glutes etc).
-rolling out all big muscles (legs,abs) that tie into the pelvic floor
-I sit between two yoga blocks so there is no pressure on my PN
-I wear only very loose fitting clothes and rock the MC hammer pants and loose underwear
-taking care of the other issues: IC bladder and pelvic floor pain as these worsen PN
-having lots of positive distracting outlets in my life such as cooking, playing with children, a pet, watching netflix, being creative
-working with a competent therapist who has a specific knowledge of bladder and pelvic pain. hard to find but they exist. The mental health burden is huge so you need support. You will face dismissal and gaslighting so you need a therapist who doesn't offer up simple solutions but can hold space for the difficult emotions of this journey.
-I keep a bladder journal when things are rough to have bio data for doctors (they take me seriously) and to give me a sense of control and action when in pain
-i keep an emergency kit of various medications
-next I will try topicals as I can't tolerate side effects and I think prevention is key. Noticing when it ticks up to get PT , heat, stretches (also sauna I find helpful), It can take months to get out of a tight pelvic situation, so I try as best I can to avoid it.
-I find also bracing stress, things that cause me to brace (like rushing) don't help,
- i avoid activities which tighten the muscles which lead into the pelvic floor (like cycling) heavy adductor or ab exercises or lunges
-having a good cry is a big help, shifts hormones and brings muscle relaxation
-having big laughs is a help I find, releases the pelvic muscles and helps with some hormonal shift. I notice if I am laughing and running around a lot with children or watching a really funny movie the pain can shift (this is not psychosomatic or in my head: it is about actually helping to release the muscles, and walking moving rather than sitting relieves pressure on the nerve, and circulation also relieves pressure on the nerve)
-limit sitting and have more movement when in flares for the above
-I find penetrative vaginal intercourse helps me as almost an internal massage plus the hormone effects of relaxation but I may be an outlier here (and I didn't like how amitryptaline numbed me from organisms and sensation yikes)
-I sleep on very soft form toppers..like 3 toppers. I noticed when laying in the hot sun on a hard pool deck that I had pelvic pain..it is the pressure of the firm ground pressing up. I notice if I sleep on a harder bed I have more pain and a harder time sleeping due to frequency. I sleep on a ridiculously soft bed thanks to several layers of walmart foam toppers: huge help.
-to me PN is very much a mechanical issue--ie relieving any pressure around the nerve (loose clothes, PT to relieve muscles, heat, stretching, including tightness in the legs, no straining, soft Bms) all help. Sitting puts more pressure on this nerve...so when irritated I can't sit much at all. When there is more space around my nerve I can sit better. (I can sit longer in a hot sauna or bathtub, as though the circulation creates space or blood flow to reduce pain).
-avoid cold, bracing from cold, living in the cold. Stay warm. for me low circulation, stagnation, pressure, is cold, or not a pelvic friend
-I think PN is also like the nerve got fried a bit or scarred or irritated somehow. I am not sure.
-it is common for an MRI not to show anything. Many on the forum recommend Potter in NYC as one of the few experienced in look at the PN on MRIs. on my bucket list.
-reduce internal pressure around the PN like bloating in bowels, or extra weight. I notice if I am more thin and wearing loose clothes and not bloated it helps. If I am bloated it creates bladder pressure. If I have a bit more fat/weight in the area (our bodies go up and down in life) I am careful to wear loose clothes. I have two separate wardrobes: a larger bloated warddrobe, and a more thin one. I never ever create pressure through tight clothes and ensure comfort. (all thanks to thrift shops).
-find friends and loved ones you can be honest about saying "i'm having a rough pelvis day" with..find opportunities for hugs, a cry, and also play to have positive distractions
-i haven't had any luck with suppositories--but worth giving those a shot. I need something stronger. You could try cannabis, I used baclofen and some others
-seek out top doctors and be wary of things that could make it worse. You will be the one to live with the outcome, not the doctor...but don't be too afraid to try therapies as you move up the risk/need list. (took me years to try meds).
-many folks take years to identify PN so at 8 months you are ahead of the curve well done on all your self-care and research
**update: got a flare up after writing this so adding some more data:
-in my case, as mentioned, i have a primary bladder wall issue from damage to the bladder wall (infection prior), and secondary PN/pelvic issue which then of course becomes also its own issue. So in my case, medications which reduce inflammation inside the bladder (hydroxizyne, montelukast) help me but they give me heart palpitations so I have to avoid them mostly. I am medication sensitive so take the smallest does possible of everything (10mg hydroxizyne, atarax).
-recently I could not get to a bathroom a few times to void (urine) and I was not taking the hydroxizyne and my bladder was very sensitive. THis lead to a period of needing to go which was hard on the bladder. It happened a few times (going in bushes) and I was left after with a swollen spasming bladder on and off for a few days. This was very uncomfortable, not to mention constant urgency-- amazing how it can just strike after months doing so well. it was quite incapacitating and upsetting. My stomach was swollen out and hard with pain all cramped up with a hard spasming bladder
-point being if you have a bladder wall issue like me that also is a trigger so not irritating my bladder internally (coffee etc) and not holding in urine if I truly need to go, or I will get spasms that last for a solid while. I perceive the nerve fibers, and tissues are very sensitive like they have PTSD from the original infection but also frankly, they are over worked and the nerve I think is affected and the firing goes off and it cramps tight if exposed to too much inflammation/urine.
-I have been addressing this by doing several super hot baths, some home wand and finger rectal physio-- (very basic and be careful), some cupping and body rolling, rolling out glutes, doing specific yoga stretches, going for a physio session (she pressed on my rectal pelvic floor areas)
-Also it is worse after the morning BM (twitching then moving into full cramps) so I do some biofeedback (take 30 mins after BM to rest and relax let the pelvic floor melt out) also hot bath and self wand work if needed
-walking, jogging when possible.
-I started taking the bladder medicine again to help heal the lining because for me I need to really avoid bracing/holding it in, this can be a trigger to spasms. Once the spasms have started, it is a different type of urgency.
-My urologist wants me to do botox in the bladder, He also wants me to try Myrbetriq first. I can also get locked up spasming pelvic muscles other times. I am pending on those treatments at present.
-When I try medications I am careful to try those that minimize side effects, including if you come off the drugs.
-I have not tried gabapentin or lyrica..I need to be super sharp for working.
-as mentioned for me penetrative vaginal sex helps but clitoral orgasm does not, and same with masturbation, ie tensing up muscles, and also vibrator is not good--can lead to flare for me.
-I moved and the new physio is only half as effective only is palpating inside a portion of the session and not strong enough. I am going to try some others..when it is good I feel it creates space around the nerve, I feel spaciousness and have way less pain and urgency (lower pelvic spasm, lower bladder spasm, lower pain, lower urgency).
-There is quite a bit of misinformation within the physio field and not uncommonly they want to train you to relax and breathe and frankly this is not going to cut it if your nerve is mis-firing. it is not in our heads.
-avoid coffee if you have a bladder issue. it is not the acid, the caffeine (in any form) messes up the nerve signals somehow--but you can have similar pelvic and bladder effects without a primary bladder issue.
-not catastrophizing, focusing on small wins, quality of life issues, staying positive and hopeful, reaching out for help when my head is in a dark place
-catching up sleep if I lose sleep.


Wishing you the very best.