Antibiotic use triggered Pudendal Neuralgia?

[MArtist812]

Hi all, I just found this website today after close to 2 months of pudendal nerve pain. The very short version of my post is this question: Has anyone experienced pudendal nerve inflammation resulting from antibiotic use? Here's my story, and the reason I ask...

It all started when I took an antibiotic for a sinus infection (azithromycin). Immediately after taking the antibiotic, I developed rectal pain and some minor bleeding with bowel movements. I figured it was hemorrhoids or a fissure, but it didn't go away for 2 weeks, and none of those treatments offered any relief. I also started to notice some referred burning sensations in the perineum and genitals during this time. I had surgery shortly after that for something completely unrelated, and the Dr. put me on another post-op antibiotic, which led to a major relapse. I now understand that the antibiotics probably caused proctitis (ie, rectal inflammation), but I'm told by the Drs. I've seen since then that whatever remaining inflammation that's there is "not clinically significant". The pain is a very strong burning sensation with occasional sharp pain at times rectally (muscle spasms maybe?), accompanied by burning in the perineum, genitals and buttock. The pain is less severe when I wake up and tends to flare throughout the day, coming in waves. Definitely triggered by sitting (especially driving). So far, I've been to my primary care doc, a gastroenterologist and the ER, and I've had multiple rounds of bloodwork, urine test, stool tests, a CT and a colonoscopy, all of which were negative. I've had a few good days here and there with the pain being mild, but it always flares back up, typically leading to 3-4 days of unbearable unrelenting pain. The list of medications and dietary changes I've tried is very long, but nothing seems to help. Currently I've recently started baclofen (muscle relaxer) and lyrica, along with a steroid my GI doc gave me for inflammation, plus lots of Tylenol. Nothing really seems to help, except staying busy with movement around the house, when the pain is mild enough to allow it. Warm baths also help, but only while in the water. I saw a pelvic pain specialist last week who has me signed up for a series of nerve block/anti-inflammatory injections. I feel desperate and hopeless, in some ways more so after reading about the challenges associated with treating PN on this website. I'm clinging to the hope that, because I've managed to get a diagnosis after 2 months, maybe the nerve can recover from this? Mostly I'm curious if anyone else suffering from PN found a link to antibiotic use? Sorry for the long-winded post...

[Violet M]

Sounds pretty miserable what you are going through. I cannot recall ever hearing of someone say that a course of antibiotics triggered their symptoms but the way you explained it, it does sound plausible. Sometimes what triggers the symptoms isn't necessarily the root cause but just reveals that there is an underlying problem such as a musculoskeletal issue that predisposes you to PN, but I don't know if that's a possibility for you. Is there anything else in your history that might have contributed to this -- like exercise or long periods of sitting?

Have you had any imaging such as MRI's to rule out any obvious or serious issues? When you saw the pelvic specialist, did they do an exam to determine that your pudendal nerve is irritated? Some PN doctors consider the clinical exam the most important tool in determining a diagnosis.

Nerve blocks can cause a flare-up in symptoms and occasionally a worsening of symptoms so it's important to be aware of that possibility going in. If the clinical exam points towards pudendal neuralgia it is reasonable to take that very slight risk but Professor Robert cautioned against having more than 3 steroid nerve blocks due to the risk of damaging the nerve.

Some PN doctors recommend starting with non-invasive things such as an evaluation by a pelvic floor PT and lifestyle changes (avoid sitting for awhile) before trying invasive things. Frequent alternating hot/cold sitz baths can be healing as well as providing pain relief. There are topical ointments you can apply or patches like salon pas with capsaicin that don't have too many side effects like some of the oral drugs.

I think you are right that since you are getting early treatment you can be hopeful. Also, you didn't have some sort of severe injury so hopefully your body can heal itself given a little more time.

Violet

[MArtist812]

Hi Violet,

Thanks so much for your reply and insight. I attempted to get an MRI twice on two separate orders from two different doctors, but my insurance denied both of the requests. Insurance also did not approve a third request for a CT scan, so I had to force that by going to the ER. There’s nothing obvious in my history that I can imagine would have predisposed me to this, except maybe some pre-existing pelvic floor tightness. I’m a 37 year old male, and have always been very active with sports and exercise, and overall very healthy. My Dr did perform an exam looking for trigger points internally, but I was in such pain during the exam I could only say ‘yes it hurts’ every time she applied pressure to a different spot. Her conclusion was that everywhere was inflamed and that my pelvic floor was hypertonic, but that very well could have been because I was just clenching and unable to relax at all. The exam actually worsened my pain significantly for several days. She prescribed a suppository containing two muscle relaxers, gabapentin and an NSAID. I tried using one the other day but it made my pain much worse. I discussed with her yesterday and she agrees that signs point to there still being some residual irritation of the rectal mucosa, which was irritated further by 1) the exam and 2) the suppository. It’s probably worth mentioning again at this point that my pain is primarily rectal (the primary pain is very localized), with the referred pain in surrounding areas being secondary and transient (it comes and goes).

My current plan: I’m signed up for a pelvic floor PT evaluation next week. Medication-wise, my thinking at this point is to discontinue the oral steroid, as my GI doc went over my colonoscopy results with me yesterday and is insisted there is no significant inflammation. I’ve started to wonder if the prednisone might be impeding healing, now the proctitis inflammation is supposedly reduced to the point of being ‘insignificant’. I have been struggling with constipation throughout this time as well, so I am upping my fiber intake and adding a gentle osmotic laxative. I’ll keep taking the muscle relaxer and lyrica, and switch from Tylenol to Advil in the hope it will help tamp down remaining inflammation. Regarding the nerve block, this is part of a treatment program that this specialist practice recommends. It’s a series of 6 injections in different locations over 6 weeks. They assured me it delivers good results in most when combined with PT, the other medications they prescribe (suppositories and oral nerve pain meds), cognitive behavioral therapy, anti-inflammatory dietary changes. It’sa very comprehensive approach. I agreed to the injections because I was trusting their expertise, but I’m fully alert to the risks now, after reading your warnings about making things worse or damaging the nerve. Don’t know what to do now…

I really appreciate your advice. I do feel desperate for this pain to end, but I would much rather be able to make an informed decision to delay or cancel the injections if the risks are too high.

[Violet M]

Hi MA,

That's pretty crazy that the insurance denied an MRI. I wonder what ICD 10 code is being used. It might be worth re-submitting with a different code or if that doesn't work, it might be worth it to appeal the decision. Since you are an avid exerciser, it might be possible to consider your pain injury related but you would have to ask your doctor that. Exercise is what got me in trouble.

Just based on my own experience, internal exams used to cause major flare-ups because the pudendal nerve was so irritated already from a ligamental nerve entrapment. I tried some pelvic floor PT including internal work but it always flared things up so much I soon determined it didn't make sense to irritate a nerve that was already irritated due to an entrapment. But not everyone has an entrapment, and pelvic floor PT does help some people to get the muscles relaxed. So I think it's important to get the PT evaluation and even try some PT, but I would be wary of a "no pain, no gain" approach. And if it isn't helping after 6-12 sessions, my understanding is that it's probably not going to help. Your PT should be able to press on the pudendal nerve at the ischial spine via the rectum and see if that causes an increase in pain. According to the Nantes Criteria, this would mean you have a possible diagnosis of pudendal neuralgia due to nerve entrapment. You can find the article on the pudendalhope.org website in the publications section. http://www.pudendalhope.info/sites/defa ... iteria.pdf
There is always some uncertainty as to whether a hypertonic pelvic floor is pressing on the nerve and irritating it, or whether an irritated nerve from a ligamental entrapment is causing the pelvic floor to be hypertonic.

Regarding the nerve blocks, I don't know what your specialist injects or where they inject it but it sounds like they have a standard protocol that is in place for a good reason. Sorry, I didn't mean to scare you, but I know of people who got tons of nerve blocks and eventually the nerve got damaged. Six doesn't sound unreasonable and nerve blocks can be valuable in establishing a proper diagnosis so I wouldn't just cross them off your list. I had a series of 3 a month apart that contained a steroid called kenalog and they did cause a temporary flare-up but nothing permanent. Prof. Robert warns against too many steroid injections specifically. So, I suggest you ask where along the nerve they are injecting, what they are injecting, and what the risks are so that you are adequately educated. The inferior rectal branch of the PN can come off at different points along the nerve, so you may or may not have some improvement in symptoms from the nerve blocks, depending on where that branch comes off in your anatomy.

Hopefully you are just having irritation due to the antibiotic messing up your bowel movements, and increased straining, etc. and that it will calm down soon. You are smart to be increasing your fiber so you don't have to strain and put more stress on the pelvic floor.

Violet

[Sunshine88]

Hi MA,

Interesting you bring this up because my symptoms started with what I thought was a UTI. I was given a handful of different antibiotics but continued to have the burning with urination. I saw a urologist and have had various testing. I have been to the same pelvic specialist place I think you are talking about as they have several locations. The doctor there said my pelvic floor muscles are in spasm and my pudendal nerve is irritated. I’m just not sure what is causing what, and I’m not sure what exactly caused all this.

I am also looking at doing the 6 week injection series with nerve blocks, but I am nervous about it. Please let me know if you follow through with the injections and how it does for you.

[MArtist812]

Hi Sunshine, sorry it took me a while to respond. I’ve been trying to stay out of the PN rabbit hole of the Internet for my sanity . Since my last post, I’m up to having seen 14 practitioners in my search for relief, as well as confirmation of my diagnosis. The consensus seems to be pudendal nerve irritation + a tight/spasming levator muscle. Chicken and the egg situation as to which is causing the other I think, but it does seem clear that the antibiotic I took set off an inflammatory response in my gut (rectum) that then kicked off an inflammatory response of the surrounding tissues. I completed the injection course about a month ago, and I am doing a little better. I can’t say it is because of the injections of course, but I also don’t feel strongly that they had a negative effect either. The injections did not really dull or block my pain in the days after each one, but I’ve now come to appreciate that the trigger point injection aspect of the injection treatment (rather than the nerve block) is what holds the most promise for improvement and healing, due to the effects on relaxing the pelvic floor muscles. Since then, I switched to a new PT that I like; she is very experienced treating PN and levator ani, so I’m remaining hopeful. One new thing I’ve been experiencing, since about 3 weeks ago, is a pleasant sensation that occurs in all the same places I have the burning pain. The good feelings are consistently there, strangely enough often at the same time as the pain, but the balance of good vs bad sensations shifts. Furthermore, the strictly burning-like-fire sensation I had originally has transitioned to more of an icy-hot style burning/tingling. Still very unpleasant, but I’m hoping that this shifting sensation, plus the new good tingling sensations, are indicative of the nerve recovering. My current routine is PT, acupuncture, meditation, light walking, breathing, some light yoga (like 1 position), and rest. I would probably consult a good pelvic floor PT near you, if you haven’t already. The injections - I think people are often split on whether they’re useful or not.

P.S. I wonder if anyone else has experienced pleasant sensations as their pudendal nerve was healing?

[Jennymay]

This is my life story!!!!
I have never heard of anyone with the same
Reaction to ALL antibiotics.
I have severe pudendal nerve inflammation, in my vulva, urethra, rectum from even holding antibiotics, let alone taking them.
This started when I was 25, I am now 61.
I was given antibiotics for something and I had this horrible reaction, which I knew nothing about.
The doctors kept giving me more antibiotics, and I finally realized several years later, it WAS the antibiotics that cause the pudendal nerve inflammation.
I cannot take them at all!! Not for thirty five years because of this.
I have used antibiotics for my animals, and if I get any on my skin, it will set off severe inflammation, in the areas I mentioned, that this nerve inervates.
It is a nightmare, and doctors years ago discounted this completely, and never related the pain to the pydendal nerve.
I had to figure this out myself.
It takes weeks of taking Advil, muscle relaxants, antihistamines, and numbing with cold compresses for this burning to stop.
In the 80s they told me to go to a psychiatrist, when they knew nothing about pudendal related pain, in the groin area.
I now wear loose pants, rarely sit, just not to aggravate this nerve more.
Acupuncture has really helped.
I have all of my allergic reactions along this nerve, and in my groin, bladde, urethra and vaginal area.
I don’t know why, and this is the first time I have heard of anyone else say “it was triggered by antibiotics” which mine definitely was!!!

[Violet M]

Hi Jennymay,

I think it helps to not feel alone - when you find someone with the same things you are experiencing. I remember when I first came to the pudendal neuralgia forum and it was such a relief to know there was a name to what I was experiencing and that I wasn't the only one in the world!

Violet

[MArtist812]

Hi again, I have been meaning to post an update for several months now that I'm coming up on the 2 year anniversary of this all starting. I'm still dealing with this pain, but my overall condition has improved some and I've been able to regain quality of life. Looking back on things, the hardest part for me was coming to terms with and accepting these new challenges. I fought hard to find an underlying structural cause for a long time - I've seen close to 30 practitioners: PCP, ER, multiple Gastros, Urologists, neurologists, psychologists, phsyiatrists, pelvic pain rehab specialists, extensive work with multiple pelvic floor PTs, etc), and while none of them had the magic bullet solution for me, I learned, grew and was gradually able to find joy in living again. Some days are hard, but I try to keep things in perspective and not get too down when the pain is high. For me, the first turning point in my (hopefully ongoing) recovery was overcoming the deeply rooted fear. I was terrified of the pain itself, but also of the idea I could never return to my previous life for fear of making it worse. I was depressed because of the person I'd become, and I was essentially mourning the loss of my previous self. Then one day I was doing a virtual consultation with a pelvic pain specialist (Dr. Robert Echenberg in Bethlehem PA, who I learned of from a friend). He said something that really helped me take the first step toward recovery: that pain didn't necessarily equal structural damage. Specifically for me, he wanted me to believe that even if it was uncomfortable to sit, sitting itself wasn't going to make things worse. Speaking only for myself of course, it turns out he was right. I gradually started to increase my physical activity, from walking to jogging, to running, to sitting and driving, then resuming work full time (with a 2hr daily commute). Not long after I resumed playing soccer, slowly at first, but now I'm back to playing full time 2-3 days per week. This was immensely helpful for me because I've actually found that exercise and movement of almost any kind is the only consistent pain reducer. Pills, gummies, stretching, breathing, meditation, PT, etc...none of those really do much for my pain, but a good run or playing a game of soccer, or even just a short weightlifting session usually brings it to near zero (at least while the endorphins are high and the blood is flowing). Exercise is also so good for my mental state. I started to feel like myself again, especially as I got back to work and normal family life activities. I started removing the physical limits I had placed on myself, and it paid off. I drove 10hrs to our vacation rental over the summer and in the last year have taken multiple 4-6hr road trips for various reasons, and while pain was absolutely there and sometimes quite high, I always made it through and didn't suffer any setbacks in the big picture. I obviously can't speak for everyone, but in my case, disarming that fear of making it worse, realizing that I could tolerate discomfort without causing damage really helped me move forward.

Regarding PT, I kept up with treatment for over a year. What helped me most was that I eventually found a therapist who incorporated dry needling (including of the pelvic floor - it's not as awful as it sounds), and I think that's what helped me take the next step in reducing symptoms. Specifically with pelvic floor needling, the amazing thing about it is how targeted it is - by inducing a twitch in a specific muscle, I was finally able to pinpoint that my pain is primarily in the pubococcygeus muscle on my left side. Knowing this alone was actually helpful to me, even if I still haven't found a magic bullet solution for it yet. The needling and PT definitely helped me restore pelvic floor tone to normal, and also helped me reduce tightness and spasming I was experiencing as I was working my way back to being active again.

So here's the nutshell summary. Antibiotic induced GI inflammation (probably just a freak accident, as I've taken oral antibiotics throughout my life without issue before). The inflammation irritated the pudendal nerve and led to high pelvic floor tone and spasms, which just made the nerve symptoms worse. Gradually through PT, especially by finding the right therapist and adding needling, I was able to return to physical activity, and then eventually resumed normal everyday work and family activities. I now just essentially tolerate the pain when it's there while staying calm,but I certainly do have good days where it is near zero for long stretches. Finally accepting that there isn't a tumor, cyst, infection, residual inflammation, etc, but that all signs point to this being neuroplastic pain (ie, my brain has 'learned' to produce pain signals without an overt underlying structural cause) really helped me to move on into the recovery phase. I liken the pain to a migraine (which I also get) - some days you just have a headache, and there isn't always an obvious reason why. Whether that's accurate or not, this mindset has helped me adjust and get back to doing the things I was missing out on when I first posted here. So definite progress with hopefully more to come, but I try not to think about it terms that places pressure on myself to improve. If I can improve more, that would be amazing, but for now I'm just taking it a day at a time and trying to focus on the everyday successes and appreciating the good moments.

Sending positive thoughts out to all...

[Violet M]

Thanks for that detailed update. I suspect that there are people who will find your suggestions very helpful. It's pretty amazing how well you are dealing with this and continuing to live your life the best way you can! I wish continued healing for you.

Violet