Possible PN, introduction post, and looking for advice.

[Johan1991]

Hello,

My name is Johan and I'm a 24 year old male university student from Holland. The last 4 years I have struggled with a persistent sitting pain that I can't seem to get rid of nor get diagnosed. This week I found out about pudendal neuralgia and a lot of the symptoms I see described here and on other informative websites seem to match my own, and by describing some of my symptoms, I hope some of you might give me some advice or insight about what to do next.
I feel like I could write a book full of all the experiences that have plagued me both physically and emotionally for the past 4 years, but looking at some of the stories on this website, I think you all have a pretty solid idea about how tough these symptoms can be, and about how depressing it can sometimes get to be worrying about your pain each day without a sense of it getting better any time soon. Looking at my own conditions compared to some of yours I can honestly even feel a sense of relief that it could be much worse for me since some of you seem to be in an even worse struggle than myself.

My experience started about 4 years ago when I noticed a burning feeling deep inside my butt muscles (around the sitting area) that I couldn't exactly place and that prevented me from sitting and lying on my back comfortably. I can remember describing it back then as the feeling one gets when sitting in a car for a long time without being able to stretch one's legs. It was a burning sensation that gradually started getting worse after approximately 20 minutes of sitting down. In the end it would become tingly stretching out from both buttocks to the top of both hamstrings. Sleeping on my back became problematic, but I could lie on my sides without any problems. Back then (and now) I was exercising a lot (6 days a week) and gained a lot of muscle/fat mass in the past years (about 25kg total). I thought I must have pulled a muscle and thought it would go away on its own, and kept on going as it didn't hurt any of my training, my problems only flared up when I was sitting down. After about a week, I can remember a brief time where it indeed did feel like it calmed down a bit, but after a short amount of time it came back once again, and never really left since.
This might sound strange, but even though the condition was making my life uncomfortable for about 2 years I basically just bit through it, trying out different things without seeking professional help. I tried stretching, changing exercise routines, cutting down weight, a better diet, lots of over the counter painkillers/medicine; but to no effect. Then, finally I found one thing that did give me a good amount of relief: ice. By sitting on ice-packs (placing them on both buttocks on the sitting bones) I found a remarkable amount of relief; to the point where I could sit for hours without a lot of pain (as long as I kept switching up ice-packs; I thought that maybe the ice was healing something and kept on doing this for about 6 months, but found that my condition still wasn't improving (it was static) and finally went to the doctor.

The doctor basically didn't know what it was, but send me to a physical therapist. Two therapist tried to find out what was wrong with me. They gave me stretching exercises (primarily for the piriformis muscle) and dry needling for trigger points, but I found no relief. During this time my condition started to get worse. I just couldn't sit anymore (even the ice was giving less and less relieve) and my heel also was getting numb and slightly painful while walking or standing (possibly unrelated), I tried buying a different and better chair (my previous chair was rather hard and flat), but to no effect. At some point I finally found some relief: I started working on a laptop lying on my stomach on a mattress. It was highly uncomfortable, my neck hurt from the weird position I had to use looking at my screen, but at least I didn't have any sitting pain. This went on for about 2 weeks, and I had this idea that maybe because of the near total relief something might be healing. After these 2 weeks things got very bad very fast.
At some point my legs which were on the mattress started itching/burning up. It was a bit like the pain I had while sitting, but less painful. At some point later that day it became worse though, and finally I had to move back to my chair. Sleeping that first night was a nightmare. My legs burned while trying to get to sleep and the pain even woke me up, and the next day when I tried sitting down both of my legs were tingling and burning together with the usual pain I had while sitting. That day I went back to the doctor and sort of broke down there, I was very depressed by this situation, and he made an appointment for me with the orthaepedic clinic in the hospital and prescribed Lyrica for me because he thought that it might be a problem with my nerves. I must say that the first day the burning/tingling on my legs did get a bit better, and sitting on a tennis ball together with ice got me through it, but sleeping was still very bad. Then, I got lucky. That night I got woken up by some noise from my neighbour, and of course it was a nightmare to try and fall back asleep again due to all the burning/tingling in my legs. However, for some reason I decided to try and lay down on my back for a bit (something I hadn't done for years, but at least the burning of my legs seemed to get less), and because I wanted to go to sleep I tried to breathe very slowly and tried to relax every muscle in my body.

For the first time in years I felt total relief. You can imagine how happy I was, I finally found some way of pain relief.
I can distinctly remember feeling that when I tried relaxing everything I could feel a sort of muscle knot around my perineum area, and when focusing a lot I could relax the muscle and felt total relief from pain until it started knotting up again. I felt asleep and when I woke up I wasn't sure if it had been a dream or for real, but the first thing I did was try it out again, and I got total relief lying on my back once again after focusing hard on relaxing the muscles around the perineum area. I also noticed that the burning/itching of the legs had gone away. The next thing I did was find my chair and try to get to this relaxing state while sitting too. This turned out to be a more difficult task; I couldn't get the total relief I could get when I laid on my back, but in my lazy chair, I could get to a point where the pain dropped to about 25% of what I was used to, and to a pain that was much more focused and different from what I was used to. The weird thing was that it almost felt like a fluid or electric impulse in the perineum that was buzzing. A bit like sitting on a mobile phone that is vibrating. This weird feeling was of course annoying, but a much better pain to deal with than the pain I had been suffering for the past years. Basically my pain had decreased 75% overnight (ironically the day I started the Lyrica, but it seemed totally unrelated).

This new stage of the condition was much more manageable, and I waited for my appointment with the orthopaedist. When I got there he didn't really know what it was, but decided to do an MRI of the pelvis/ lower back and do a X-ray. Both those photo's found nothing wrong. Then I got send to the neurologist, which heard me out, but couldn't place my story, but hinted that it might be emotional/stress related which makes me contract muscles unconsciously. This appointment has now been about 1 month ago, and even though my condition has become more manageable due to my breathing/relaxing method; it's still having a severe impact on my life. And the fact that it still is undiagnosed is frustrating me. The buzzing/tingling still goes on, and when I focus very hard sometimes I can get total relief in my lazy chair. It's hard to keep myself in this state of total relief, and it only seems to come when I have my feet on my desk/table, but when I do get there, I can usually keep it up for 1 or 2 hours. If I don't focus enough on my breathing/relaxing it starts getting tight and I feel the knot/buzzing/electric feeling again, which gets worse to the point where I can't sit anymore. What I also found is that I can get significant relief sometimes when I massage the walls of the anal canal with my finger, and ice directly on the perineum does still give some relieve.

If anyone was kind enough to read all of this: thank you. I would appreciate any opinions on the possibility of me having pudendal neuralgia, or maybe something else. What I found interesting is seeing that a lot of you have similar symptoms and found relieve in ice (something I haven't seen much yet, and something my doctors found somewhat curious). The prime reason for me writing this is to consider making another appointment with a different neurologist. I did not know anything about pudendal neuralgia when I went to my previous appointment, and now wish I had, so I could have asked him about it. What's making me hesitant to make a new appointment is the fact that even though I see similarity in symptoms, I don't see many of you getting relief from relaxing the muscles of the perineum area, and it seems curious to me that one could get to total relief while sitting from relaxing. I'm no doctor, but I feel that if I had real nerve damage that shouldn't be possible. Overal it felth somewhat relieving to even write all this down, this week my pain was a bit more severe, and it feels good to put my thoughts together in order to find new solutions to deal with this life changing problem.

Thanks for taking the time to read my post,

Johan

[janetm2]

Welcome Johan,
Sorry you are having such a tough time but glad you have figured out some ways to manage. If you go to another neurologist it may be good to bring a copy of the Fact Sheet Hand Out for Medical Professionals (this is a topic under the announcements and Community section).
There is a symptom list on the homepae that might help you determine how close you are to having PN.
Janet

[janetm2]

Johan,
I thought of something else that might help, nonsequitur/ezer has posted info on the mindbody approach. Sorry I am low on ideas but my hubby has lyme disease and I amm now thhe caretaker (luckily it is not something worse but if it were I would realy need to get out of the single family home!). Take Care and hoping others will provide ideas for you.
Janet

[Johan1991]

Johan,
I thought of something else that might help, nonsequitur/ezer has posted info on the mindbody approach. Sorry I am low on ideas but my hubby has lyme disease and I amm now thhe caretaker (luckily it is not something worse but if it were I would realy need to get out of the single family home!). Take Care and hoping others will provide ideas for you.
Janet

Thanks Janet, I will look into it, and I hope your husband will feel better soon. I think what I've been doing is sort of the mind-body approach (even though I didn't really know about it). Part of me writing this all down was a kind of relief too. I'm thinking of making it a little more detailed and sending it to some doctors/experts to try and get an educated opinion. I did do write it all down a while ago, but it was in Dutch on a forum about muscle problems, and English will reach a bigger and different audience.

Take care,

Johan

[janetm2]

Johan,
Thanks for the well wishes to my hubby. Glad it helped just to write it down, sometimes you get a better picture yourself just talking or writing out. Good luck.
Janet

[Violet M]

Hi Johann,

It sounds like you have done a pretty good job of figuring out what helps your pain. For instance it sounds like you get relief from doing myofascial release on your muscles via the rectum. Did any of your PT's do that and did you have relief from the pain when they did myofascial release? Were your pelvic floor muscles tight when they examined them via the rectum? I found a TENS unit to be helpful with tight muscles.

Hopefully your neurologist will be knowledgeable on the subject of pelvic neuropathies and will be able to help you. I don't know how you feel about trying drugs/medications. Sometimes a combination of lyrica and another drug such as cymbalta is more effective than just lyrica alone.

Violet

[Johan1991]

Hi Johann,

It sounds like you have done a pretty good job of figuring out what helps your pain. For instance it sounds like you get relief from doing myofascial release on your muscles via the rectum. Did any of your PT's do that and did you have relief from the pain when they did myofascial release? Were your pelvic floor muscles tight when they examined them via the rectum? I found a TENS unit to be helpful with tight muscles.

Hopefully your neurologist will be knowledgeable on the subject of pelvic neuropathies and will be able to help you. I don't know how you feel about trying drugs/medications. Sometimes a combination of lyrica and another drug such as cymbalta is more effective than just lyrica alone.

Violet

Violet M,

Thanks for your answer, and sorry for the late response; it's been a busy week for me and I didn't check the forum. I only found out about getting pain relief from massaging the rectum myself, and never talked to a doctor or specialist about it since I only found out about that very recently (and I also find it quite hard to talk about the subject); so I don't know if those muscles are tight or not, since I can't determine this myself. Do you think I should get in contact with a professional that can determine this? It might be a weird question, but what sort of specialist do I contact for this? I don't think a normal physical therapist does work on the rectum, or am I wrong in thinking this? Thanks for the tip about the TENS unit. I've never seen that before, but it does look promising. Is this safe to use, and can it be used in the rectum?
On the medication: Of course I rather not use any, but I would if I knew it helped me. I used to Lyrica for over 2 months and didn't feel any relief, so I'm hesitant to get back using them. I read some of your other post on this forum and you seem knowledgeable on the subject, and I wonder if you feel my pain could be nerve damage. I read quite a bit on it, and it seems odd to me that I can get so much relief from relaxing the muscles, even while sitting down after I get pain. It seems odd to me that if I had nerve damage I could get release this way, but I might be wrong about this.

[janetm2]

Johan,
There are physical therapists that do internal rectal therapy, we list PN-aware therapists off the homepage but not sure where or how you might find one in Holland. Probably PTs that deal with myofacial release of pelvic muscles may also do rectal therapy, these PTs are as you said more specialized. Not sure you would use a TENS on the rectum but I used it on my sacrum (low back) because the pudendal nerve attaches to that and I think the signal gets travels down to the Pudendal nerve.
Janet

[ChiMommy]

Johan,

I'm so sorry to hear you have to endure this kind of pain. I am not a medical professional. However, I have been dealing with Chronic Pelvic Pain for 6 years.
By your post it seems like you have only seem a neurologist?

If this is true, I highly recommend you Google Pelvic Floor Physical Thetapist. I have a wonderful PT who has helped me through all of this.

Since you get such significant relief massaging your internal muscles, I believe a trained PT in pelvic floor dysfunction can really help you. They may be able to work all the trigger points (hard knotted up spots in the muscle).
When the muscles guard they clamp down, when they clamp down they have the ability to put pressure on your nerve, or just cause severe pain from internal "Charlie Horses"

PT is the least invasive way that I have found. If you can get relief from pt, it may just be the muscles causing the issue.
I had a urogynecologist preform Botox injections in my pelvic floor every 8 weeks. Botox completely relaxes/paralyzes the muscles. Your PT will know who to refer you to, they are excellent like that.

Unfortunately, neither of these worked for me, but I have Pudendal Neuralgia. I found this out by failing the Botox injections & PT.

I pray you get to a good Pelvic floor doctor and feel better soon!

[Violet M]

Johann, if you have tight muscles impinging on the pudendal nerve, that could cause nerve pain. The difficult thing is to figure out whether the tight muscles are the cause of the nerve pain or whether damaged or entrapped nerves are causing the muscles to get tight. If you are able to relax the muscles, maybe that means the tight muscles are what's causing the irritation of the nerve. That has always been one of the hardest things for people with pudendal neuralgia to figure out. In my case, the ligaments were impinging on the nerve causing irritation and that led to the muscles being in spasm. Trying to relax did not help but it sounds like maybe it is different for you.

Awhile back I described where to place the electrodes for the obturator internus muscle. http://www.pudendalhope.info/forum/view ... =32&t=4015

The following link has a chart on where to place TENS electrodes for rectal pain, etc. http://www.medi-stim.com/overview/epc.html

I never tried the internal TENS stimulators but they do exist and they can be used for rectal pain. You can read about it on the IC website. Scroll down near the bottom of the following link: http://www.ichelp.org/about-ic/associat ... sfunction/
I would be a little leery of trying it in case it made the pain worse but it is an option to try. You can google to find rectal probes for neurostimulators.

Violet