UTI causing PN?

[SummerChild]

Hi All, Can a UTI cause PN? I have been healthy all my life. Then 5 months ago I had a UTI, confirmed and treated with antibiotics. After it was cleared up I started experiencing urethra pain that spread to clitorial and perinium pain. Burning, shooting, stabbing plus allodynia. I had a lot of trouble sitting in cars due to the vibrations especially from the seatbelt vibrating across my lower abdomen. I have been tested for everything, utis, stis, I've have a renal scan and an MRI, everything is clear. It took 2 months until a doctor told me this sounded nerve related. Gabapentin has stopped the stabbing pain but I am not having much relief other than that. I cant sit down without a doughnut pillow I cannot wear pants.

Went ahead and did a steriod nerve block. Initial anesthesia did help with the pain although I could still feel it. It has helped clitorial pain, but I still really struggle to sit and am still not able to wear pants.

Wondering if anyone elses started the same way? I'm not sure what else it could be other than PN? I have no urinary or bowel issues. Also not sure where to go from here, is this something that can be healed over time?
I have been quite stressed about getting another uti and making things worse. SO am pretty much abstinent for now.

Thanks,

[Violet M]

Hello SummerChild,

I don't know if it's actually been proven that UTI's can cause PN, but UTI's have been associated with triggering pudendal neuralgia for some people. Or conversely, according to the following article, people with pudendal nerve entrapment may be more likely to get UTI's. The article explains the mechanism for how this might happen.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7483464/

Have you had an MRI to rule out any obvious potential problems? You could consider seeing a pelvic floor physical therapist for an evaluation of the pelvic floor and evaluation of any musculoskeletal conditions that might be contributing to your problems. And you could consider seeing a pudendal neuralgia specialist for an evaluation and diagnosis. You can find a list of doctors and PT's by going to the homepage at www.pudendalhope.org.
Hopefully there will be a provider near you, and you won't have to travel.

With the right treatments, there is a very good chance that you will heal, but it's important to find out what the underlying cause is so you know what treatments to pursue. For instance, if you have a nerve entrapment, surgery might be necessary. If you have pelvic misalignment or strained pelvic ligaments, or tight pelvic floor muscles, you may want to try some pelvic floor PT, trigger point injections, or even Botox.

From what numerous patients have posted on this forum, I know very few, if any, who had long-term relief from nerve blocks. I'm not saying it never happens, but I see pudendal nerve blocks as primarily as diagnostic. So, I think it's valuable to have a nerve block but to have realistic expectations.

Good luck as you try to figure this out.

Violet

[SummerChild]

Thanks for your reply.

Yes I have had an MRI and a renal scan and everything is clear.

I have had nerve blocks done 3 weeks ago with anaesthesia and steroids. It did numb the sore areas when I had the anaesthesia but I was still in pain.
3 weeks out I am still having trouble sitting and wearing pants.
Whilst they were doing the nerve blocks they had a look at my nerves and said they don’t appear to be compressed?

How else would I be able to find out if there is pudendal entrapment?

I have been to a pelvic floor physio who has said my pelvic floor seems fine.

I’m not sure what else to do? I’ve been to every sort of doctor. With ‘pudendal nerve irritation’ being the only closest diagnosis I have. They want to do pulsed radio frequency blocks next. I’m a little scared of having that done.

It’s ruining my life. I’m also terrified of getting another uti and all of this has delayed my partner and I trying to conceive as I am in too much pain.
I’m in my early 30s and can’t imagine living the rest of my life with this.

[Violet M]

You have already been through a lot. I am sorry you are going through this, especially at a young age when you would like to be living a normal life.

Whilst they were doing the nerve blocks they had a look at my nerves and said they don’t appear to be compressed?

How else would I be able to find out if there is pudendal entrapment?

I did not know it was possible to look at the nerves during a nerve block. I have never heard of that before, but I would be interested to know what doctor did this and how they looked at your nerves. Did you have any incisions?

The doctors in Nantes published an article about the diagnostic criteria for pudendal nerve entrapment. You can read the article here:
https://www.pudendalhope.info/wp-conten ... iteria.pdf
If you meet many of those criteria, you might want to get a second opinion from a pudendal neuralgia specialist physician to get their opinion on whether you have a nerve entrapment.

If you don't have a nerve entrapment then there is a possibility the nerves will heal over time, especially if what caused the initial nerve damage doesn't continue to damage the nerve. You have probably already researched how to prevent a UTI but if not, you might find this link helpful:
https://www.mayoclinichealthsystem.org/ ... -infection

If you want to avoid invasive treatments and wait longer to see if the nerve will heal, you can try using alternating heat and ice for healing and for pain relief. If money isn't a consideration, and if you are convinced you don't have a nerve entrapment, there is some research showing that hyperbaric oxygen can help heal nerves. But if you did have a nerve entrapment, hyperbaric oxygen would likely be a waste of money unless the entrapment is released because the nerve irritation would just continue. At least that's what Dr. Antolak told me. I tried hyperbaric oxygen after pudendal nerve release surgery and my insurance covered half of the cost for me.

I wish I had some magic answers for you, but this can be a difficult disease to diagnose accurately, and difficult to treat. Many people do get better though, so please stay strong and keep fighting. I believe you will find the right treatment to help you, but healing might take some time.

Violet

[SummerChild]

Thank you for your kind words. My nerve blocks were guided by ultrasound and they said everything looked normal the nerves didn’t look compressed. I also have pain on both sides which is rare to have the nerve trapped on both sides so I don’t think it is trapped?

It has been very stressful trying to prevent a uti as I still have gotten them despite taking all the precautions.

[Violet M]

It sounds like you have done your research and you are making sensible decisions. Hopefully over time your nerves will heal. Have you tried taking a tricyclic antidepressant, SSRI, or SNRI? Sometimes they are helpful with nerve pain. During the worst of my pudendal neuralgia I took an SSRI and it helped significantly with some of the symptoms. You just have to be careful when you wean off to discontinue the drugs slowly.

Do you know if your pelvic floor muscles are tight?

Violet

[SummerChild]

Hi There, yes I am on 1200 gabapentin daily, it has helped with the stabbing / burning pain. But I still have pain with sitting or wearing pants.

What would you suggest I do from here? The next step my pain management doctor is suggesting is pulsed radiofrequency blocks. I had mild relief from steriod blocks, but my initial diagnostic lidocaine block was positive for it being the pudendal nerve. Im a little scared of PRF, making things worse.

I have had my pelvic floor checked by a pelvic floor physio and she said my pelvic floor looked fine? Are they the right people to diagnose a tight pelvic floor?

I don't have any urinary or bowel symptoms that seem to suggest a tight pelvic floor? So I'm not sure. Not sure where to go from here. I'm not sure why a UTI could cause this?

[Violet M]

Yes, a pelvic floor PT would be able to tell if your pelvic floor is tight.

Can't remember if you tried pregabalin (lyrica) already. It's related to gabapentin but works better for some people than gabapentin. It is a controlled substance but many doctors will prescribe it.

Gabapentin and pregabalin are a completely different class of drugs than antidepressants so you could take gabapentin OR pregabalin, AND you could take an antidepressant. There are several different types of antidepressants -- tricyclics, SSRI's, and SNRI's. I took an SSRI called lexapro but many people seem to have success with duloxetine (cymbalta) an SNRI.

I don't know the exact mechanism for how a UTI could cause nerve pain. I'm not sure if anyone knows for sure. You might want to consider a telehealth visit with Dr. Fogelson. I don't know a lot about him but he is listed on our website at the following link: https://www.pudendalhope.info/united-st ... icians/#OR
Anyway, I found this interesting website that tells a lot more about him and what he does and it sounds like maybe he could help you or give you advice. https://liveutifree.com/pelvic-nerve-pain/

Violet

[SummerChild]

Thanks, I’ve heard lyrica has quite bad side effects including depression, which I’m already experiencing on gabapentin so I’m a little worried about that.
I have been wondering if I have another issue causing PN, but all my scans and tests have been clear.

[stephanies]

SummerChild,

I think if you can find a knowledgable doctor willing to look I’ve your imaging it would be a good idea to get a second opinion. I have found that different doctors see different things as important and sometimes radiologists consider some potential issues to be “incidental findings” and leave them out of the report.

Stephanies