New to the forums, Possible PN & looking for advice

[Setzer]

Well, I went ahead and had bilateral pudendal nerve blocks done back on the 9th, a decision I now somewhat regret. While the blocks did provide me with mostly all my pain relief it was mostly because I couldn't feel anything because I was numb from the waist down my inner thighs. As soon as the numbness wore off, about 36 hours later, I started having raw/burning skin feeling in my anus, perineum, genitals, buttocks and inner thighs...it makes wearing underwear and pants to work super uncomfortable. I've also had intermittent pain in the tip of my penis and more burning when I pee and after I pee I feel like there's something in my urethra. These are all symptoms I've had previously but they had been improving with therapy. It seems like the nerve block made things worse or I'm having a flare up. I almost cancelled the appointment and I probably should have. I had physical therapy on Monday and she recommended checking out my pelvic floor muscles rectally our next session so I'm going to proceed with that. It's just super frustrating because I feel like I've put myself back at square one with the nerve blocks but also my anxiety has kicked in because I start to wonder if it's not the pudendal nerve and maybe its something else.

Also, I saw my regular doctor on the 31st and they ordered X-Rays which revealed abnormalities in my hips and there may be femoral acetabular impingement, so I have an appt. with an Orthopedist. I'm just wondering if my hip issue is maybe causing issues with my Obturator Internus muscle which is in turn irritating the pudendal nerve. I was looking at Obturator Internus Dysfunction and almost all the symptoms related to it I've had.

[Violet M]

Hi Setzer,

Sorry to hear you are having a flare-up after the nerve blocks. Do you know if they used steroids or just an anesthetic like marcaine. It's actually very common to have a flare-up after PN blocks, especially if they use steroids. I had flare-ups after my PN blocks. Within a month pain levels went back to baseline. Hopefully yours will calm down soon. You might want to try using ice in the area where the blocks were given and/or extra pain medications temporarily. Did Dr. Attaman think the blocks confirmed pudendal neuralgia?

Femoral acetabular impingement is definitely something to consider. We've had patients post on this forum who got better after having treatment for FAI.

Violet

[stephanies]

Setzer,

I hope your increased pain post-nerve block is a temporary flare. With each of the nerve blocks I had, I had a significant pain flare that lasted from a few days up to a month or so if there was a steroid included in the block. Looking at any potential issues with your hips is a good idea. I have multiple possible causes of my PN pain and think hip issues could be a contributing factor. Please keep us posted on how you are doing and if the pain is calming down.

Sincerely,
Stephanies

[Setzer]

Hi Setzer,

Sorry to hear you are having a flare-up after the nerve blocks. Do you know if they used steroids or just an anesthetic like marcaine. It's actually very common to have a flare-up after PN blocks, especially if they use steroids. I had flare-ups after my PN blocks. Within a month pain levels went back to baseline. Hopefully yours will calm down soon. You might want to try using ice in the area where the blocks were given and/or extra pain medications temporarily. Did Dr. Attaman think the blocks confirmed pudendal neuralgia?

Femoral acetabular impingement is definitely something to consider. We've had patients post on this forum who got better after having treatment for FAI.

Violet

Setzer,

I hope your increased pain post-nerve block is a temporary flare. With each of the nerve blocks I had, I had a significant pain flare that lasted from a few days up to a month or so if there was a steroid included in the block. Looking at any potential issues with your hips is a good idea. I have multiple possible causes of my PN pain and think hip issues could be a contributing factor. Please keep us posted on how you are doing and if the pain is calming down.

Sincerely,
Stephanies

Thank you both for your replies!

Yes, he used a steroid - Hydrocortisone. He didn't prescribe me any additional pain medications. Prior to the nerve blocks he did prescribe me Gabapentin 300mg. I haven't started taking it yet because I don't really like being dependent upon medication and I've heard that its difficult to come off of once you start it. Have you used Gabapentin and if you did, did it help with your symptoms?

The last 24hrs my symptoms have improved which I'm thankful for. I have a follow-up with Dr. Attaman next week so I'll find out what he has to say and what my next step will be.

[Violet M]

Glad you are feeling a bit better.

Gabapentin didn't do much for me but maybe I wasn't on a high enough dose. I had some side effects from it too.

Violet

[Setzer]

Glad you are feeling a bit better.

Gabapentin didn't do much for me but maybe I wasn't on a high enough dose. I had some side effects from it too.

Violet

I've been taking it before bed and the first couple nights it gave me pretty vivid dreams and made me really drowsy but those side effects seemed to have past. Haven't noticed a different in my pain as of yet but I've only been on it for a week. The one thing I have noticed is my urine stream is much stronger since I've been on it which I was not expecting. I have been taking Tamsulosin since July and that hasn't helped my urine flow as much as the Gabapentin has...it's pretty crazy.

I have been doing much better since the flare up from my nerve block but last week when I had my session with my physical therapist she decided it was time to do an assessment of my pelvic floor muscles by doing an examination rectally. It did hurt, especially on the right side. She was using her pointer finger and she showed me that up to the knuckle of that finger is what she calls the 3rd layer of the pelvic floor muscles. She was only able to get up to the 2nd layer and she did some stretches while she had me focus on breathing which was difficult to do. She said I definitely had some hypertonicity going on in those muscles. So the next morning(Thanksgiving) I had another flare up of pain which lasted until Sunday. I saw her today and explained to her what happened and she seemed to be surprised by that and wanted to know if I possibly did something else that day that would have triggered the flare up, which there was nothing I could think of. She then told me that she was going to cut out doing any more internal work on me because it caused me to have a flare up. After I left I thought about it some more and wouldn't my flare up of pain from her doing that last week actually be a good sign? Wouldn't it mean that those muscles could be the culprit of my pain? I'm going to ask her this next week but now that I think about it more I would think you would want to keep doing internal work to relieve that tension?

The appointment with my orthopedist really didn't give me the answers I was looking for. They said the abnormalities in my hips are normal for someone my age and the joints looked fine. They want to do a lumbar spine MRI to see if there's something going on further up the spine. I was talking with my Dad tonight, who's a medical doctor, and he was telling me that if there was something going on with the nerves further up that I would be having more issues than what I'm currently experiencing. So I'm debating whether or not I'm going to proceed with that MRI.

As for Dr. Attaman, there is a procedure he can do where he uses pulse radio frequency on the Pudendal nerve and does a plasma rich injection into the nerve using my own blood and uses botox on the Obturator Internus muscle. This is supposed to help relieve pressure the OI muscle is putting on Alcock's canal and the Pudendal nerve and help to basically "reset" the Pudendal nerve. Unfortunately, this procedure is not covered by insurance because he's the only doctor in the US doing it and it's not FDA approved so it would be an out of pocket expense and more than I can afford. I think I'm just going to continue with PT...I've basically only been at it for 2 months now and I know anything with nerves takes time and just see how Gabapentin works. If it doesn't end up helping me I can always try Lyrica and something like Noratriptyline.

[Violet M]

I have been doing much better since the flare up from my nerve block but last week when I had my session with my physical therapist she decided it was time to do an assessment of my pelvic floor muscles by doing an examination rectally. It did hurt, especially on the right side. She was using her pointer finger and she showed me that up to the knuckle of that finger is what she calls the 3rd layer of the pelvic floor muscles. She was only able to get up to the 2nd layer and she did some stretches while she had me focus on breathing which was difficult to do. She said I definitely had some hypertonicity going on in those muscles. So the next morning(Thanksgiving) I had another flare up of pain which lasted until Sunday. I saw her today and explained to her what happened and she seemed to be surprised by that and wanted to know if I possibly did something else that day that would have triggered the flare up, which there was nothing I could think of. She then told me that she was going to cut out doing any more internal work on me because it caused me to have a flare up. After I left I thought about it some more and wouldn't my flare up of pain from her doing that last week actually be a good sign? Wouldn't it mean that those muscles could be the culprit of my pain? I'm going to ask her this next week but now that I think about it more I would think you would want to keep doing internal work to relieve that tension?

My experience was that internal work flare things up and the pain was worse on one side. I also had tenderness/pain when the PT pressed on the pudendal nerve at the ischial spine. My instincts told me that the flare-up after PT was due to the nerve being irritated and that it didn't make sense to keep irritating the nerve with internal work so I quit it. For me, typically when a muscle is massaged it relaxes more and the pain subsides but when the nerve is massaged it flares it up more. Can't remember if I mentioned the Nantes Criteria for Pudendal Nerve Entrapment article to you before.
https://www.pudendalhope.info/wp-conten ... iteria.pdf
It can give you some guidance in determining if you have pudendal neuralgia that is caused by a nerve entrapment.

As for Dr. Attaman, there is a procedure he can do where he uses pulse radio frequency on the Pudendal nerve and does a plasma rich injection into the nerve using my own blood and uses botox on the Obturator Internus muscle. This is supposed to help relieve pressure the OI muscle is putting on Alcock's canal and the Pudendal nerve and help to basically "reset" the Pudendal nerve. Unfortunately, this procedure is not covered by insurance because he's the only doctor in the US doing it and it's not FDA approved so it would be an out of pocket expense and more than I can afford. I think I'm just going to continue with PT...I've basically only been at it for 2 months now and I know anything with nerves takes time and just see how Gabapentin works. If it doesn't end up helping me I can always try Lyrica and something like Noratriptyline.

Dr. Attaman is very knowledgeable and experienced. Some of the things he is suggesting are treatments that other patients have posted about on this forum. Pulsed radiofrequency is something that may provide only temporary relief and may need to be repeated on a regular basis, as is Botox. So, you would want to know going in whether you are likely to have to keep repeating these treatments. Also, there are mixed reviews of these treatments from what patients have posted on this forum and there is a slight risk of getting worse. So you need to know what the risks are going in. I know it is agonizing to make treatment decisions. Wishing you the best as you figure this out.

Violet

[Jim32]

Hello Setzer

I just joined the forum as I wanted to send you some info about your hot burning pain in your buttocks and top of the rear thighs. I have some similar issues to yourself with regards to hot sitting buttock pain, buttock hypersensitivity to wearing underwear, especially with seams, or trousers with back pockets, as well as inner thigh sensations and (I think) weakness. Mine is 9 years ongoing. I've also suffered with tailbone (coccyx) pain and had to have that removed 4 years ago.

Have you looked into PFCN entrapment (posterior femoral cutaneous nerve entrapment). It can be very very similar to prudendal nerve symptoms. I'm no expert but basically branches of this nerve supply sensation to the skin of the lower buttocks (sit bone area) and top of the rear thighs. There is an excellent peripheral nerve surgeon in Baltimore (which is probably quite near you) who can help diagnose problems and do surgery if needed. Seems to be one of the top guys in the country and a nice decent sort. Dr Eric Williams at the Dellon institute in Maryland.

I think I might have PFCN issues and will hopefully get a diagnosis in mid Feb as I am going to see a pain doctor in Nantes in France who seems high up in his field and is going to test me for this. I think I have other issues aswell but it'll be a start. I am Irish but based in the UK so france is easier than Baltimore. I am considering going to Baltimore later if I think Dr Williams can help

I would recommend a coccyx cutout cushion for driving as it can really help with the pain at least for 15 mins. I still use one if I have to sit for longer periods even though I no longer have coccyx pain as it actually helps with my sit bone pain (hot skin pain), my worst problem.

I struggle writing on the computer as I have to stand still and it gets quite sore standing in my legs and feet which is why I dont often sign up to forums. Hope this is useful to you