Health Organization for Pudendal Education

Hey, I ended up in this thread googling. I have an experience which *could* be compatible with your theory about antibiotics triggering pudendal neuralgia ! Please read and forgive my poor English, I am not natively speaking.

I am 40 and otherwise healthy. This is the third time in my life I developed chronic pudendal neuralgia triggered by an UTI.
At 19 I had a cystitis, treated with antibiotics. Once past the acute phase, I kept complaining of pelvic pain, bladder pain/discomfort didn't completely go away, I also developed rectal pain. I had all tests done, including swabs, scans, blood tests. All negative. I saw a lot of different doctors who where puzzled and tried different cycles of antibiotics to no avail. Symptoms showed a trend of disappearing or attenuating after a sleep, and to get worse thru the day, becoming unbearable in the night. No pain killer or supplements ever helped. In few *years* the symptoms gradually subsided.

At 27 I was well enough. I had another acute cystitis treated with antibiotics, and the same nightmare began. I even had more swabs done and a pelvic MRI, all negative. Symptoms went away gradually in 4/5 years.

In winter 2021 I had another cystitis harder to treat, and I was put on Levofloxacin for 15 days. Still intense rectal pain which this time luckily subsided gradually during the 15 days. Then I healed. Back then I thought it was Levo which eventually did its job but chances are it was the opposite...

In Oct 2021 my current nightmare began. I started complaining subtle rectal pain again. In few days this pain became severe and it extended to my urethra. I also noticed tiny leaks of blood and mucus on my underwear. My doctor suspected an urethritis and put me on Levofloxacin again for 10 days. The acute phase subsided but the rectal pain didn't want to go away. From time to time I also had symptoms close to cystitis or IC. I was put on different antibiotics, and *everytime I started those my symptoms worsened to deadly levels*. Doctors could not explain that. A vaginal and urethral swabs after some months showed Ureaplasma Urealyticum so I was put on Doxicycline for 30 days. I could not tolerate it because once more my symptoms got insane and I had to stop it after 2 weeks. More exams done, another MRI. Swabs were now negative, including realtime PCR, including PCR for Candida. I had an urethrocystoscopy done (terrible experience) which showed nothing, no IC, no Hummer lesions. Rectoscopy didn't show anything. A doctor suspected of me developing pudendal neuralgia after UTI - which could make sense, since I always developed PN after a UTI in my life (despite I never found this fact mentioned in literature !!!!). I had a pudendal nerve ultrasound and a neurologic MRI which showed no entrapment. An electromiography at the PN showed no latency and no anomaly. My quality of life is compromised, I also developed severe MDD. No pain killer helps, not even the strongest ones. I was put on Pregabalin but I could not tolerate it because of sedation. Palmitol ethanolamide,vit B12, ALA, Carnitine, I tried all possible supplements with minimal or null benefits. My pain always tends to disappear sleeping and to show up in the mid day and to worsen thru the day. I saw another urologist last week who confirmed the diagnosis as pudendal nerve flogosis. He also applied pressure inside my rectum against one trigger point. I did't feel anything particular while he did so, but within an hour inflammation/burning became unbearable and lasted for two days. I was told that my only hope is physiotherapy, and I am seeing a pelvic floor therapist on next Monday. But I have little hopes. I judge it absurd that in 2023 we have no resolutive *medication* for this debilitating condition !!! Or maybe there is one (off label ?) but nobody knows it yet !!!???
Oh I also was told by a neurologist last summer to try muscle relaxers, since my PN was likely caused by stress and tension. I tried Xenaxine then Flexiban - with ZERO benefits.

Well, now that I think of it well, I suspect it's not UTI but rather the antibiotics I had to take for them the cause of my PN, evidently on some genetic predisposal.
And if you go read, one serious side effect of fluoroquinolones and other antibiotics is PERIPHERAL NEUROPATHY OR NERVE DAMAGE !!! Is this just accidental ???
How would you explain, otherwise, that my pain worsened on antibiotics ???
This is my story. You judge.

Hello Broken2,

Your theory, that the antibiotics caused damage to the nerve makes sense. It has happened to other people before. But I think it's important to rule out any other possible causes of pudendal neuralgia just in case.

When they put you on antibiotics do they do a urine culture to see if there is actually an infection going on or do they just assume it based on your symptoms?

Violet

Hello Broken 2

Yes, these antibiotics cause various strong side effects.

I can only give you the names that are commonly used in Germany: "Unacid", "Ortoton"(muscle relaxant), "Roxithromycin" (cystitis). I think there are much more. I only have experiences with these antibiotics. These are noticed in my allergic note and are not allowed to give to me.

I didn't develop any pain, but panic attacks and the worst dizziness, as well as dissociations. Fortunately, the symptoms stopped immediately when I stopped the medication.
A doctor later confirmed to me the symptoms he had already observed in patients during his work in hospital.

So my theory is that these drugs affect the nervous system in such a way that unconscious muscle contractions take place, especially in the pelvic floor, and these cause the pain. This is supported by the fact that the examinations that were carried out did not produce any pathological results in your body.

Perhaps you read again the post from ARtist812 from 07.11.23. There are a lot of advices.

You might try to find a doctor who works with natural remedies to treat the cystitis. This will take longer and you always may have to keep an eye on your bladder as it seems to be a weak point in your body, but it is better and healthier than the antibiotics.

I wish you all the best
Aristocat

Just came across this. MArtist812 comment from nov 7, 2023 was very insightful for me. Husband had bladder cancer & bladder removed nov 2023. New bladder created from part of small intestine which naturally creates ecoli. Has had continuous uti since July 2023. Round after round after round of antibiotics. From what I have researched he has pudendal neuralgia. Can’t get a medical diagnosis so we go round and round. He is doing therapy and it is helping some. Therapist says the muscle is so tight he can’t empty his bladder. Currently self cathing 3 times a day. Pain is almost unbearable when he does. Hurts worse when he is up walking or standing. Some days it’s all he can do to get to therapy and back. My question is in regards to the UTI’s. What can/should we be doing to try to stay off antibiotics? They never really cause him pain or burning. Should we just ignore them so he doesn’t have to do more antibiotics? Or what can we do besides probiotics to offset the antibiotics? Oncologist has him on morphine for pain. 15 mg every 12 hr & a breakthrough every 4hrs as needed. He pretty much needs it all. He has just started immunotherapy (keytruda) for metastatic to his liver. 2 treatments down 33 to go. PCP told us this am after 6 treatments he should start to see improvement but that’s not until March 27. *insert eyeroll* we are getting desperate for help from wherever we can find it.

Hi Mrs. D,

Sounds like you and your husband have been through a tremendous amount of difficulty and still have a lot to face. The questions you are asking are very difficult to answer but as you already know, sometimes there are no easy answers. If the antibiotics are necessary to keep the infection from going up to the kidneys it could be important to continue taking them since a kidney infection could be pretty serious. If you believe the antibiotic is causing a problem, you could ask the doctor about possibly trying a different antibiotic. I don't know of any other way to manage a bladder infection.

What type of pain is he having that has lead you to the conclusion that he has pudendal neuralgia? You said you can't get a medical diagnosis. Is that because there aren't any knowledgeable pudendal neuralgia doctors in your area? One of the ways that pudendal neuralgia can be diagnosed with a fair amount of confidence is with a pudendal nerve block, but it can be difficult to find doctors who can diagnose it accurately. And it sounds like it would be difficult for your husband to travel to a pudendal neuralgia specialist. If he is having nerve pain, something like lyrica (pregabalin) and duloxetine, or related medications could be helpful, but I don't know if those can be prescribed with morphine.

My prayers are with you. Sending you some hugs,

Violet

I also found this via google and registered to post. Since yesterday, I've been experiencing extreme pelvic tightness and constipation in the middle of a doxycycline course to treat ureaplasma infection. I'm also floxed from a couple years ago which perhaps makes me more susceptible here. I don't agree that the antibiotic (aside from maybe fluoroquinolones) are directly causing this. Right before this started, I experienced huge flare in burning symptoms from the infection during my antibiotic course. I suspect that the bacteria dying off and resulting flare-up somehow caused pelvic floor trauma. I suspect OP unknowingly had ureaplasma or some other urogenital infection that was being attacked by the antibiotic- hence the burning down there and subsequent pelvic issue. I don't know for sure this is Pudendal Neuralgia, I just know its pelvic dysfunction, namely tightness. I'm a couple of days in and praying this resolves itself soon.

Sorry I can't quite follow this thread and interact properly, given email notifications seem not working for me.
Anyway, my little update. I was close to see a pelvic floor therapist but I was not convinced yet. After all the last urologist who visited me suspected that PN could be chronically inflammed because of an unresolved even low grade infection. So I repeated a PCR uranalysis I had done last year, which back then showed mycoplasms and which I treated with azithromycin. Well, this new test still shows the same ureaplasma parvum !!! I am seeing an infectivologist next week but most likely he will put me on a long course of antibiotics. So I can't say anything clear yet. The only thing I am sure of, I won't believe I have inflammed PN as long as I have a positive PCR test !!!! Once my test should become negative, I am ready to consider this option again. But my hope is that a new antibiotic therapy isn't going to damage my PN any further, in case the speculation as per subject were true...

Broken2 wrote: ↑Sat Feb 10, 2024 11:41 pm Sorry I can't quite follow this thread and interact properly, given email notifications seem not working for me.
Anyway, my little update. I was close to see a pelvic floor therapist but I was not convinced yet. After all the last urologist who visited me suspected that PN could be chronically inflammed because of an unresolved even low grade infection. So I repeated a PCR uranalysis I had done last year, which back then showed mycoplasms and which I treated with azithromycin. Well, this new test still shows the same ureaplasma parvum !!! I am seeing an infectivologist next week but most likely he will put me on a long course of antibiotics. So I can't say anything clear yet. The only thing I am sure of, I won't believe I have inflammed PN as long as I have a positive PCR test !!!! Once my test should become negative, I am ready to consider this option again. But my hope is that a new antibiotic therapy isn't going to damage my PN any further, in case the speculation as per subject were true...

Azithromycin alone is unlikely to cure this and you don't need long-term antibiotics. What you need is dual treatment. Please read through this thread here: https://www.reddit.com/r/Ureaplasma/com ... d_to_know/

After treatment, get tested several weeks after with swab and/or first-void morning urine with nothing to drink before test. If you still have lingering symptoms after confirming negative, then its likely the ureaplasma left behind pelvic floor issues and you'll need therapy and/or treatment to fix that: https://www.reddit.com/r/Ureaplasma/com ... pps_andor/

Good luck!

I haven't had pudendal nerve inflammation from antibiotics myself, but I've heard they can sometimes cause unexpected issues.

Hi, I am 35 years old male and going through the same rectum and penis burning sensation after taking a round of z-pack. Recently went through EGD and colonoscopy but GI said everything is normal. It’s been more than 2 months since I’m going through this. Can you please help me? What options do I have ? I really appreciate if anyone can help me.

Thanks