Health Organization for Pudendal Education

Hi,

I (36M, 5'10", 144 lbs, french) am suffering from an undiagnosed condition and seek help. It started in 2020 but in May 2022 the pain occurence and intensity increased significantly, now seriously impacting my sleep and day to day activities (barely driving anymore, working is much more difficult). Before June 2022 i was practicing sport 1 to 2 times a day, mostly cycling, climbing, running. I noticed that periods of high training coincides with periods of increasing pain. I stopped all sports since but there hasn't been any significant improvement.
Symptoms are nothing alike I can find:
The pain is located on the left side only, between the groin and the upper inner left thigh, but deep inside. Its location is very precise and never changes and never goes farthest than 5cm down the thigh. I have no pain in the area of the pudendal nerve which discard this option, but doctors still regularly wonder if it could be something similar. Besides, the pain comes and go randomly at any time of the day. It can last an instant up to a couple of hours. Outside of these times I have no pain at all. I have daily episodes. Severity ranges from the sensation of a needle piercing through my ineer leg to a violent stabbing. It often wakes me up at night (any time of the night, but not every night). There are no specific position that triggers the pain (I've been paying attention for 3 years so am certain of this - plus doctors tried evry positions to re-produce the pain without success). However over 6 months it happened 3 times, during about 1 week each, that movements of standing up, sitting down or climbing stairs would increase the likelyness to trigger the pain.

Spine MRI showed a very small L5s1 hernia, not really consistent with the area of the pain put I still I got a cortisone spine injection in Sept. 2022, but it didn't improve anything (but I got PDPH and now tinnitus ever since). Pelvis MRI showed nothing. EMG (with patches) showed nothing. Ultrasound showed an irregular abductor without inflammation. Doctors decided to give it a try and I had a cortisone injection in the abductor. No results. To be noted that ultrasound also showed an hypertrophy of the left psoas. Arthroscopy showed a small labral tear but orthopedist discarded it (as hips movement were not reproducing the pain). I consulted Dr. B in Aix-en-Provence (PN specialist) who diagnosed a possible internal obturator myofascial syndrome, and gave me a first botox injection. Pain seemed to be less intense during 3 weeks but I am now back to the same intensity... I am supposed to have a 2nd injection next week.
I am doing physiotherapy but haven't had any good result. TENS isn't working. Ony Laroxyl helps me sleep a bit better.

My personal opinion is that as I was doing a lot of sports and always pushing I damaged a nerve (obturator nerve?) or a muscle and now it won't heal and regularly gives me the payback.

I know that this website is for pudendal neuralgia, but it is the closest there seems to be to my condition... And maybe some people suffering the same are also landing here, so I was hoping we could share some experience and information to help find solutions..?

thanks in advance for reading..

Hi Chamois,

I can't answer your question for certain but I know that Dr. Bautrant is brilliant, and since you seem to have some improvement with the Botox it makes sense to continue it. The pudendal nerve runs right next to the obturator internus muscle so when I had PN, it affected the OI muscle and caused burning on the inner thigh where the leg meets your body. If PT isn't causing a flare-up it might be a good idea to continue it for a little while to see if it helps over time but if it flares up your symptoms I think it would be wise to discontinue it.

Violet

Thank you so much for your answer Violet. I had the second botox injection yesterday and Dr. B found my muscle already very relaxed. He said he injected a bit higher in the muscle and now i should wait and see in the next 4 months...
My and my wife's lifes have radically changed since I stopped any sport as we can't do the activities we used to, not speaking of the pain episodes and the humor impact it has. I used to do a lot of climbing and ski mountaineering that made me feel alive and fulfilled and now the main emotions i'm living with are pain and anxiety.
I am really struggling to support not knowing what i really have and if one day I'll be able to live again....
I'll keep updating regularly.

Thanks for the updates, Chamois. Have you tried swimming? That usually doesn't create flares, although you may want to avoid the frog kick used with the breast stroke.

Take care,
April

Hi April,
Yes I actually tried going to the swimming pool several times but I must admit i'm as good as a cat in the water... Really not my thing.
I only had a few light pain episodes pain since the second injection last week, but now it seems to be coming back a bit. Let's see how it evolves I guess...

Hi Chamois,

I understand the fear you are experiencing. There was a time I was scared life would never be the same again. I'm not cured but I can live a normal life now and do many of the things I used to love to do. With time hopefully you will get back to doing the things you love.

Take care,

Violet

Thank you Violet.
I've got the feeling that i did all possible exams but at the same time i can't keep from thinki g i'm missing something. Indeed with the randomness of the pain, day and night, apart from the location it doesn't entirely match with pudendale nerve.
I'm wondering if it might be visceral linked, or bacterial or a virus. I only got tested for Lyme. Does one of you know if some viral or infectious disease could give similar symptoms?

I'm not aware of any viral or bacterial diseases that would cause your symptoms but that doesn't mean there aren't any. It seems like if it was viral or bacterial it wouldn't come and go like it does and you would expect a bacterial infection to spread rather than stay localized. There are viral infections such as herpes or shingles that can cause nerve pain. With shingles you would typically have a rash too.

Over the years I have read other people with pudendal neuralgia on this forum say that their symptoms come and go and symptoms may move around. My own experience was that if I was exercising or doing some activity, the pain might not show up for several hours or until the next day. I also had pain primarily on one side of the pelvic floor initially in a very localized spot, until over time it seemed to spread to the entire pelvis. One of the possible symptoms of nerve pain is stabbing pain. So, I can't say for sure if that's what you have, but what you are describing is consistent with symptoms other PN patients have experienced. The pudendal nerve runs right next to the obturator internus muscle through the alcock's canal so it can be difficult to isolate whether it's the nerve or the muscle. And, it's tricky to determine which is irritating which -- is the nerve irritating the muscle or the muscle irritating the nerve? I think it's reasonable to try Botox and see if that calms things down. The downside of Botox is that it's a temporary treatment but if it lasts several months, it can be worth it for many people.

When you get these episodes of pain, does anything help - such as massaging the area, or using alternating hot/cold treatment?

Violet

Dear Violet,

No unfortunately I havn't found anything that could calm the pain... For now I'd say that botox isn't working.
The thing with the "come and go" symptom that is really puzzling me is that at one moment i will feel no pain at all, the second after it can reach 9/10 pain, and again 2 seconds after it is back to feeling nothing again. Plus it's been 3 years and I can't point any activity that I'm doing which increase the pain or not... And i've been paying attention as after episodes i'm in kinesophobia and hypervigilant mode. It is in fact so random that it's totally impossible to make an anaestesic test bloc as I can't be sure if there is no pain if it's just coincidence...
This week i sent my pelvic mri to a website called "doctor panel", for counter check. Nothing much came out. They repeated that i had a hip labral tear, and a thick adductor attachment to the pelvic bone. For the tear i've decided to take a new appointement with a différent orthopedic surgeon, as the first one had dismissed it quickly almost without looking. I prefer to have a second opinion. For the adductor thing i already had a steroid injection which improved nothing, plus stopped all my sports, and it didn't improve neither so it rules it out.
I also took an appointement with a pain doctor to find at least a way to cope with the pain. My life has no meaning in the current conditions.

I was looking at images of the adductor attachment to the pelvic bone and found a really good image at this link. https://laurameihofer.com/yoga-with-lau ... stretches/
If your muscle is thick where it attaches, I'm trying to figure out how a steroid injection would relieve the pain. It doesn't seem like a steroid injection would make the muscle any smaller so if it was impinging on the nerve, it would still be impinging on the nerve even after the injection. Did they use an anesthetic like lidocaine or marcaine in the injection to see if it temporarily blocked the pain, even for a few hours? But if it is the adductor, you still have to wonder why the pain comes and goes. It is a mystery. It could be that the way it is impinging on the nerve depends on your position but that it's a position that is difficult to figure out -- in other words, it's not a normal easy position to reproduce but it still could be positional.

Surgery to repair labral tear has helped some people to get relief from pudendal neuralgia symptoms so maybe a second opinion is a good idea. But if it's a labral tear, it still makes you wonder why the pain comes and goes.

I'm remembering back to when I exercised heavily and that was when my PN symptoms started. Unfortunately, discontinuing the exercise did not help relieve the pain even after 18 months. For some people, stopping the exercise relieves the pain but just like for you, stopping the exercise did not help me. Have you notified Dr. Bautrant that the Botox isn't helping? Maybe he would have some further recommendations for you.

Violet