Recurring Infection and Pudendal Nerve Pain?

[Standup808]

So I’m not sure if this will help others but I had a pelvic infection 35 years ago and then agonising pain in my right groin 6 mos later (no elevated sed rate) which responded to doxycycline - numb aching mass - and Drs said my symptoms sounded like an abscess (but a pelvic sonogram showed nothing) and then prickling burning and numbing pain in the right groin area intermittently for years. 6 years after the infection I was treated with intravenous antibiotics which worked GREAT but the prickling came back from the right groin (happens 20% of the time the Dr told me). I resolved to get on with my life even though the prickling and burning was slowly spreading over a larger area. Fast forward to 2016 when a hot poker pain flared in my right groin, my feet and ankles started to swell, i was having urinary incontinence, a prickling in my torso that made it difficult to sleep and I was mostly lying on the couch without clothes on because I couldn’t tolerate anything against my skin (still no elevated sed rate). An infectious disease Dr diagnosed pudendal nerve pain and prescribed lyrica (which helped with the hot poker pain in the right groin but not the prickling, swelling, etc). I had a Neurogram at Dr Filler’s Neurography Institute (he also has a practice in London I believe). He found a wound in my right obturator internus muscle (and said pain there refers to the groin) which disrupts the course of my pudendal nerve - he can actually model the nerves in 3D. A local Dr tried doxycline and the prickling in my torso subsided and I was finally able to sleep but was still having debilitating flare ups in the right groin. Another Dr found significantly elevated ANA titers (my body is attacking its tissues). I went off the lyrica. Dr Filler did a nerve block and aspirated fluid from the wound but his cultures (after telling me they could do PCR testing he only did cultures) grew nothing - story of my life. After the nerve block, the flareups were on both sides of the groin. People were now mentioning complex regional pain syndrome. My swollen ankles were making it difficult to walk at times. I was starting to research pudendal entrapment surgery. The Dr who found the elevated ANA titers also told me that the problem with doxycycline is that it doesnt have good tissue penetration. My local Dr tried minocycline. It has changed my life. My ankles hardly ever swell anymore and if they do it is minimal, the incontinence is better - but not gone, the flareups in my groin have gradually subsided (over 3 years) and I am able to stand longer - not as weak - and walk farther. I’ve added a pro-resolving mediator supplement for the past 5 months and the low level flare ups that were distracting also seem to have subsided. I don’t need to take pain pills or anything else. I go out, I shop, I cook, I work at a demanding job, I sleep. I still can’t walk as well as I used to (I was athletic back in the day) but I feel better than I have in 20 years. My friends are amazed. The Dr who saw me at my low point in 2016 was shocked. I feel lucky to have a second chance - for as long as it lasts. I would like to donate money for research into better diagnosis and treatment of possible recurring infections as a cause of groin and pudendal pain (without an elevated sed rate) but haven’t sparked any interest with the Drs I see. If you know of any such research efforts in that area please let me know.

[Redtime]

Hello there, do you know where Dr Filler’s London base is? I’m trying to get a proper image done of the pudendal nerve as I’m hoping it would help with treatment. And most doctors I’ve seen don’t seem to think you can! I’ve had endless MRIs etc but they don’t show anything relevant. I can see he trained in London but not where his current London base is. Many thanks.

[Standup808 in reply to Redtime]

Hello, I had the same experience - regular MRIs did not show anything. If you go to the website of the Neurography Institute you can apply to schedule a scan (i had to have a Dr’s referral in 2017). One of the scan locations listed is United Kingdom. Or you can call their CA office and ask. Sadly, my insurance did not cover the cost of the scan. Good luck!

[Redtime in reply to Standup808]

Just phoned the Institute of Neurography and they say that my nearest one is New York! I mentioned the UK one and they didn’t seem to know about that. I don’t know whether I was speaking to the right person or whether they don’t have a UK base any more. Have you got an email that I could try? As usual contact details are hard to come by. Many thanks.

[Standup808 in reply to Redtime]

Hello. The site says there are scan centers in the US and UK (I went to a site in CA). Maybe apply for a packet of materials and select the UK from the location site list on the electronic form. The email addresses I have are for specific individuals who might no longer be there but the addresses are: are: ([e-mail] - her name is Monique; [e-mail] - her name is Dee).

[Redtime in reply to Standup808]

Thank you for that. I’ll see if I get a response.

[Konagirl60]

I’m so happy for you. You suffered a long time but you didn’t give up. Keep on living your best life.

[Standup808 in reply to Konagirl60]

Thanks! An update is that I continue to take a daily minimal dose of minocycline and a pro-resolving mediator. Just this past Winter my ANA titers finally dropped from 320 to 160 (still high but not as high). I have some pigmentation issues due to the minocycline but no more excruciating groin pain, swollen ankles, etc.

[Konagirl60 in reply to Standup808]

Wonderful to read. Thanks for the update.