Possible PN and not sure what to do

[gheiacmneo]

Hi,

I feel like I have pudendal neuralgia but I don't really know what else to do and everything I see about it gives me zero hope..

I know it's not like anyone here can diagnose me over the internet but just saying what's wrong feels like it will make me feel better, and I guess, contrary to what I just said, I'm holding out a sliver of hope something I say would rule it out..

It started (I think, I only later realized these events might be related) about 3 or 4 years ago, when I briefly had issues with urination feeling like I wasn't fully voiding. Around the same time I also would be having sex and be sort of prompted to ejaculate early by the sensation of what I thought was having to pee (looking back I think it was more similar to burning feelings I get now). Also I have had chronic constipation since a celiac disease diagnosis around 2012. It comes and goes but has been pretty constant for the last 10 or so months now and is pretty resistant to most fixes. With pills it seems to come regularly but I don't have to strain much anymore.

It resolved, and I stopped thinking about it. About 2 to 2 1/2 years ago my back began to gradually hurt, and eventually tightened up very badly one day. Since then it has never gotten better. I have gotten an MRI confirming a L4/L5 mild disc herniation. Repeated physical therapy did nothing to alleviate pain, but stopping weightlifting and minimizing exercise managed the pain effectively. About the same time as the back tightening up, I began to take extremely long to ejaculate, but only during sex. I also gradually began to have trouble maintaining an erection during these longer sexual experiences.

This lasted about 2 years. Minimal pain with occasional spikes when forced to crouch a lot, bend over, or tried to exercise. This past April, I began trying physical therapy for my back again. I started to perform squats. Around May, one day I noticed some pain in my left groin. I noticed goosebumps (which have never gone away) on the inside of my upper thighs, and my scrotum seemed "tight", almost like I was cold. Doing squats brought on some perineal pain so I stopped physical therapy. I began to get some burning pain when urinating. I would have intermittent "hard flaccid" penis (less common now) but often my penis will feel very cold to the touch.

I went to urgent care and a urologist, were checked for the normal causes and nothing was found. I started to have intermittent numbness on the left side of my penis, and alternating erectile dysfunction and premature ejaculation. Sitting a lot seemed to bring on that left groin pain, along where the leg meets the perineum. I very occasionally have right side pain as well. Pushing along my perineum I could (and can still) find tender areas, but nothing super painful. Sometimes it feels like the left pain radiates into my thigh but its hard to tell. I got a lot of burning discomfort urinating, in my bladder region and at the tip of my penis, and had urgency issues.

I found pudendal neuralgia as a possible cause on the internet and scheduled myself an appointment with a pain management specialist in PN here and while I was waiting the several month wait I made appointments with a pelvic floor PT. It seemed to help a little bit but not really. I apparently have decent strength or whatever it is they are looking for, but occasionally have some left obturator pain on the trigger point. Ejaculation was painful in my perineal area, and caused pain later on. Arousal could cause an odd almost quivering in my anus from time to time. I found if I minimized or cut out ejaculation (or even arousal at all) my pain would go down and I could sit pretty much as much as I wanted, including ~8 hour car trips, etc. By about 2 months ago the sexual issues had progressed to constant premature ejaculation issues - very little stimulation and I would feel like I was about to ejaculate, and stopping would cause me to lose my erection extremely quickly.

The specialist has given me a left obturator injection (did nothing) baclofen (did nothing) and a pudendal nerve injection. The nerve injection made my perineum and penis go numb (as its supposed to, I think?) but by a few hours later it started to hurt even worse than before and built up to pretty bad by 24 hours and lasted a few weeks. The urinary issues returned, including one instance where I woke up to pee in the middle of the night and afterwards had by far the most painful post urinary burning I've ever had - it felt like it was happening in a big cloud around my whole groin and lasted for a while. It scares me that this sort of pain might be constant in my future. I had had in the past (irregularly) a hot sensation move up my penis like I was peeing, except there was no liquid, and in this time period it happened constantly. After a few weeks these symptoms seemed to subside. I am not sure if it worked for the initial few hours - I wasn't aware I was supposed to be paying attention that soon (I was told it might not help for 24 hours) and I wasn't really feeling any serious pain at that time anyway.

Based on my reporting that the pudendal injection was no help, I was told I probably didn't have PN, but that it could be a sympathetic nervous system issue based on the weird hot liquid sensation. I get the distinct impression that my pelvic floor PT disagrees, though she hasn't said it out loud. I was prescribed rectal valium, which felt like it helped briefly, during which time I began sexual activity again, still with PE issues (sometimes it feels like moving wrong can cause ejaculation? is this PGAD? it doesn't really happen without being aroused/sexual contact, but it feels occasionally like I could ejaculate without even being fully erect yet) but minimal to no ejaculatory pain. The sitting pain has soon returned though (after a week probably), and occasionally now I feel a mild mild burning sensation in my perineum when sitting.

I have a ganglion injection next week (and have had occasional random mild tailbone pain). Past that, I don't know what the next step is or should be. I also don't know if the doctor knows, either. She seems kind of stumped to be honest.

When I did a bunch of physical therapy for my back, they would tell me I had issues with my SI joints (that's where most of my back pain is). I also would get random sciatica down into my right buttock and hamstring. I also had a very tight piriformis and very tight hamstrings. They'd work on those areas a lot but they'd never loosen up. I guess I am hoping these are the causes of my pain, and not symptoms.

I'm sure I'm leaving some things out, I'm just trying to cover everything, not even sure why I'm writing it all out. But I was feeling good for the first time in months when my doctor told me she was fairly sure it wasn't PN, until finally working up the courage to read the symptoms on here again and seeing way too many similarities, and none of the ones that rule it out, and feeling like even though she is a PN specialist she is wrong. I'm not seeing a ton of people suffering from the PE issue I have (unless its actually PGAD), but if anyone has anything that has worked for them in that area I'd love to hear it. I am having a lot of anxiety that I'll either start hurting a lot more soon or I will not be able to have a sexual relationship with anyone ever again.

[Violet M]

Hi G,

Sorry you are going through the anxiety and uncertainty many of us have gone through -- not knowing what the future holds and feeling hopeless that you may never get back to normal.

You said you felt numbness in the pudendal nerve distribution area which basically shows that the nerve block was successful in hitting the right spot. But the real question then is whether or not it took your symptoms away temporarily -- even for a few hours. If so, that typically is considered a positive diagnosis for pudendal neuralgia. I don't know what medication was in your nerve blocks but generally they use marcaine, an anesthetic that lasts several hours, and a steroid that kicks in a little later but may cause a flare-up in symptoms for a few weeks. So it sounds like maybe your reaction was typical. I'm not sure why the physician is saying you don't have PN because it sounds like it did lessen your symptoms temporarily - unless I am misunderstanding your description of what happened. What do they think your diagnosis is then?

I see some similarities in your history and symptoms with what I experienced, including the history of weightlifting, SI joint dysfunction, sciatica down the right side, sexual dysfunction, urinary dysfunction, and pain where the leg meets the perineum. Not sure if what you have is PGAD. I listed the criteria for PGAD in my article at the following link: http://www.pudendalhope.info/sites/defa ... ne2013.pdf

Have you tried anything besides rectal valium so far? You could try PremJact spray for the PE. It sounds like you are on the right track, trying PT with a specialist. There are other options if you feel like that isn't helping so I think it's too soon to give up hope yet.

Violet

[gheiacmneo]

Hi G,

Sorry you are going through the anxiety and uncertainty many of us have gone through -- not knowing what the future holds and feeling hopeless that you may never get back to normal.

You said you felt numbness in the pudendal nerve distribution area which basically shows that the nerve block was successful in hitting the right spot. But the real question then is whether or not it took your symptoms away temporarily -- even for a few hours. If so, that typically is considered a positive diagnosis for pudendal neuralgia. I don't know what medication was in your nerve blocks but generally they use marcaine, an anesthetic that lasts several hours, and a steroid that kicks in a little later but may cause a flare-up in symptoms for a few weeks. So it sounds like maybe your reaction was typical. I'm not sure why the physician is saying you don't have PN because it sounds like it did lessen your symptoms temporarily - unless I am misunderstanding your description of what happened. What do they think your diagnosis is then?

I see some similarities in your history and symptoms with what I experienced, including the history of weightlifting, SI joint dysfunction, sciatica down the right side, sexual dysfunction, urinary dysfunction, and pain where the leg meets the perineum. Not sure if what you have is PGAD. I listed the criteria for PGAD in my article at the following link: http://www.pudendalhope.info/sites/defa ... ne2013.pdf

Have you tried anything besides rectal valium so far? You could try PremJact spray for the PE. It sounds like you are on the right track, trying PT with a specialist. There are other options if you feel like that isn't helping so I think it's too soon to give up hope yet.

Violet

Hi Violet, thanks for the reply. My doctor does not appear to have an answer to what they think it is other than PN - before my injection this week I told her I thought I misunderstood the question when asked, and it appeared her main reason she didn't think I had PN was I was able to sit during our appointments without visible discomfort. I get the impression she doesn't WANT it to be PN (and I mean, neither do I!) but I am pretty much resigned to the fact that it is at this point.

Right now I am struggling over the decision to go to a much less convenient PT who is not covered by insurance because they seem to be quite familiar with PN (Pelvic Health & Rehabilitation Center in Lexington MA? has anyone been there?) or go to an in-network therapist covered by insurance that could be a crapshoot.

It is just hard to have hope when the reactions of my PT and my doctor to "what are my next steps?" are just shrugs and sad looks.

[Violet M]

Hi G,

Somehow I missed seeing your last post and just now noticed it. Do you know who you would be seeing at the Pelvic Health and Rehab Center? If it's Elizabeth Rummer, from what I have heard, she is excellent and might be well worth it to see her at least for an evaluation, even if you can't go that far on a regular basis, especially if your local person isn't helpful. You could at least give the in-network PT a try and just see what your experience is with them. I saw someone locally who turned out to be excellent and actually figured out my diagnosis of PN when the docs didn't have a clue.

Pain with sitting is one of the criteria for PNE, not necessarily for PN. I did not match the Nantes criteria exactly but I did end of having PNE. I went through a period of time when I had PGAD without pain with sitting -- although according to Dr. Echenberg, PGAD is a type of pain syndrome.

I think many of us have been to docs who didn't give us much hope. There are excellent practitioners out there who can help you. Sometimes it is just a matter of finding them and figuring out what the right treatments are for you.

Violet

[flyer28]

Hallo G., I read your story, the spot where the leg is attaching the pelvis is also my problematic spot, mainly on the right side. Pudendal nerve is surely involved in our cases, but the underlying reason might be trigger point in adductors or ischiocavernosus. Those trigger points are radiating pain towards the penis and whole anterior pelvis. I also had ultrasound guided distal pudendal nerve block, without any impact (no worsening, no improvement. There is heavy crosstalk of the nerves so the other nerves (ilioinguinal e.g.) should be taken into consideration. Experienced PT is essential.

[stephanies]

I saw Liz as an out of town patient in MA for two hours each day for a week a couple years ago. She is very thorough and wants to help. Unfortunately, I did not get any benefit or pain reduction from the PT with her or any other PT I have seen. I believe it to be because the driver of my pain is not muscular. After many years, my doctors are now looking at some gyn issues (adenomyosis, endometriosis) or spinal issues for me. I hope she is able to help you.

[gheiacmneo]

Well, I've done more PT for like 6 months and nothing helped. The PT seemed to think everything was caused by muscle tightness, but relieving the tightness didn't fix all the problems.

A Botox injection into my left obturator, after a few weeks, relieved all pain, but after a few ejaculations pain returned.

I tried an osteopath, to see if imbalances in my hips or other muscles and joints were causing problems. I did his exercises for a couple of weeks, and had to stop as pain got worse suddenly after a few weeks. The week after stopping it has gotten worse and worse, and for the first time ever I am getting burning pain in my perineum upon sitting.

I'm now terrified I've done permanent damage, that my PTs and doctor have been wrong about everything and causing me to get permanent damage when it was unnecessary, and I have no idea how I can manage my life without sitting down if this doesn't go away. The pain management doctor I've been seeing never has any openings, and it takes 6-8 weeks between appointments, I can't see her again before mid-August.

I'm supposed to drive 5-6 hours to Montreal next week - I don't see how that's possible, or won't make things worse. I'm supposed to drive 8 hours each way to get a puppy next month. I'm just kind of at a loss as to what to do next, and feeling about as low and hopeless as I ever have since this started.

[April]

Hi G,

I'm sorry to hear about the setback. You might find it helpful to review threads that describe cushions that work in the car and elsewhere. I think most of those threads are in the lifestyle section. Have you tried ice? I put a frozen condom wrapped in a wet paper towel in my underwear on a pad, and it dramatically reduces my symptoms. I usually put the condoms in lunch cooler with ice packs when traveling by car. If you think medications would help, and you can't get in to see your pain doctor before the trips, you could try a urologist or even your pcp. They might be able to prescribe non-narcotic medications. You could review the home page to get some ideas for medications. You could also ask your pt for a referral to a doctor. (I think most pts are able to make referrals).

April

[Violet M]

Exercises can cause some people to get worse. At least that was my experience so I understand your fear about this. Since Botox helped previously I wonder if it might be helpful again.

Violet