Advice re. exercise

[MC1000]

I've posted here a number of times recently, with a resurgence of penis and scrotum numbness and moderate sexual dysfunction, brought on by cycling an average of 200 miles a week (more recently 300) for the last 3 years or so. There's very little pain - just numbness and dysfunction.

I'm posting in thjs forum as it seems to be the only active one; I've also given a list of my full symptoms in "causes and effects" for anyone so inclined to read that.

This has now been ongoing for 2 months, during which time I've completely abstained from exercise.

I'm going through the NHS, as i can't afford private treatment, and it's a painstakingly slow process.

Now, i have a dilemma. Clearly i don't want to exacerbate the symptoms by exercising. However, at the same time i have gone from cycling 300 miles a week with good friends and a happy social life, to spending half my free time alone in bed witjout much of a social life, and in 30 degree temperatures of the biggest heatwave I've ever known.

My mental health is at rock bottom and if this continues for long enough i will eventually commit suicide.

Clearly this does nothing to help. I NEED to exercise and get out and about on my bike, even if it involves standing up riding or similar. But i don't yet hacd enough information to know whether or not that will worsen the problem as well.

I'm waiting for months on the NHS jist to get a scan, and there is a lot of contradiction and ambiguity from both GPs and specialists, so it's not helping at all.

What do i do?! Neither option is desirable at all. Please help.

[PainedCT]

Hello-
I don't have much to offer in terms of what you can do next, but I wanted to let you know you are not alone and there are many others that have PN that successfully manage the condition. I am at the 8 month mark and I have to keep telling myself that so I don't give up. It is such a painful and isolating diagnosis that sometimes it is hard to want to keep going. Every day is a mind battle, but I am determined to do my best to keep going. Don't give up - keep seeking medical help and treatments until you find something that works for you.
Katherine

[Patty]

Please stay off the bike. If you only have numbness you don't want it to progress to pain. Try to find I think his name is Pablo posts in the search box.
I too was an avid cyclist also and know 100% the loss of exercise and socialization that goes along with it. I too was suicidal in my 1st year of this disease. I missed my bike and friends so much. If it wasn't for my dogs I think I would have made an attempt. During this time and up until today I swim and walk. That's all I can do. It sucks. So if your able find yourself a pool pond and at least water walk or swim.

[Violet M]

Hi MC,

I spent the better part of 2 years in bed after being really fit, so I understand to some extent what you are experiencing except that I was in bed because it was too painful to sit or stand. Are you staying in bed because it relieves your symptoms of numbness? I think you said you don't have much pain so I am just wondering what advantage there is to staying in bed. Or is it because you are feeling so depressed?

Sorry, I don't know exactly how the health care system works in the UK but I don't see in your posts here that you have tried PT from someone knowledgeable in pudendal neuralgia. Is that something you could get a referral from your GP for? I don't know where you live in the UK but from what I've heard, there are some very good PT's there. Maybe it is something you could try in the meantime while you are waiting for appointments with physicians.

I agree with Patty that swimming might be a good option for you, especially in the hot weather, if you have access to a pool.

I thought of ending things when I was going through PNE -- before I had a diagnosis and no one could figure it out. But if you are pretty certain of your diagnosis there are many treatment options for PN and it would not make sense to end everything when you haven't given them a try. I know it seems like forever when you are waiting for appointments but it's worth waiting for until you can get some help. I thought there was no chance I could ever get better but I have. If there was hope for me, I think there is hope for you.

Violet

[MC1000]

Hi MC,

I spent the better part of 2 years in bed after being really fit, so I understand to some extent what you are experiencing except that I was in bed because it was too painful to sit or stand. Are you staying in bed because it relieves your symptoms of numbness? I think you said you don't have much pain so I am just wondering what advantage there is to staying in bed. Or is it because you are feeling so depressed?

Sorry, I don't know exactly how the health care system works in the UK but I don't see in your posts here that you have tried PT from someone knowledgeable in pudendal neuralgia. Is that something you could get a referral from your GP for? I don't know where you live in the UK but from what I've heard, there are some very good PT's there. Maybe it is something you could try in the meantime while you are waiting for appointments with physicians.

I agree with Patty that swimming might be a good option for you, especially in the hot weather, if you have access to a pool.

I thought of ending things when I was going through PNE -- before I had a diagnosis and no one could figure it out. But if you are pretty certain of your diagnosis there are many treatment options for PN and it would not make sense to end everything when you haven't given them a try. I know it seems like forever when you are waiting for appointments but it's worth waiting for until you can get some help. I thought there was no chance I could ever get better but I have. If there was hope for me, I think there is hope for you.

Violet

Exercise is fine, physically speaking . I did 600 miles of cycling without a saddle, stood up the whole time, in the 3 weeks after i noticed numbness. I only stopped because i didn't notice an immediate improvement, and couldn't have any fun cycling witjout peace of mind. There are so many variables that i just don't know. So since then i haven't exercises at all, and just eat, sleep and go to work. No pain - just dysfunction, and an anxiety that exercise would worsen it. The only thing im certain is fine is being in bed.

Regarding swimming, i utterly hate it as a form of exercise. I'd rather be in bed, ag least in yhe short term, especially when it involves a constant reminder whenever i get changed that my penis is numb.

Cycling is my life. I can do it, but i just don't know if it's wise even without a saddle. I'm losing my mind here.

At some point you've got to think about priorities. I'm still a virgin at 28 - so to sacrifice my legs and my enjoyment for something I'm not even using is an awful thoght. Especially when it isolates me socially.

[MC1000]

Also... I have seen a PT (privately, which is why i can't afford any more private healthcare) . I havr a tilted pelvis and my pelvic floor is very tight.

Cause or effect though? I have no way of knowing. Cycling wouldn't help muscle tightness, but then neither does the anxiety and depression of doing nothing. Cycling makes me happy, and that's a big positive in all of this. If i can do ir anxiety free, in a way that doesn't irritate the nerve further, then that's great. But ao much uncertainty, and the consequences of getting it wrong are unimaginable.

[Violet M]

When it comes to PN there is constant weighing of risk vs. benefits and only you can decide what your priorities are -- exercise or preventing possible further nerve damage. I typically did not have pain or issues during the time I would exercise. In fact sometimes exercise sort of relieved the symptoms temporarily, possibly because the muscles were being stretched or it was distracting from the pain. But the symptoms would worsen afterward. So, I don't know how that would apply to cycling. Even if you are standing up in the saddle, there is a lot of repetitive hip motion which one of my doctors said could be a problem. If cycling is not what triggered your problems, do you have an alternative theory as to what might have caused it?

Imagine if the bicycle had never been invented, do you think you would be able to enjoy life? Maybe you can find other things in life that are enjoyable besides cycling -- like eating, being with family or friends, being out in nature, watching interesting stuff on you-tube or TV, reading, meditating, etc. I know it's difficult but you don't want to be robbed of enjoying anything in life just because you cannot do that one thing, right?

Violet

[MC1000]

Seriously, i don't get it. This is really bad. Any kind of exercise just makes everything worse.

How?

The overriding medical opinion seems to be that it's a consequence of saddle compression. But if that's the case, why would it get worse if I'm not actually continuing to compress it?

It really is looking grim.

[Patty]

My PN started during the winter months. Had not been in the saddle for 6 months. I think the damages had been done? Don't know. No one has any good answers for me.

[Violet M]

Well....following is my explanation to your question based on my understanding of what I've read about PN in the literature over the years, and from what I have learned in my conversations with physicians. I could be completely wrong but this is what makes sense to me. Not everyone gets pudendal neuralgia from cycling so I think there is way more at play than just a compression from sitting in the saddle. Dr. Bautrant believes that some people are genetically more prone to developing PN because he has seen it run in families. I think that some people have a musculoskeletal make-up that predisposes them to develop PN. For instance, I have a genetic collagen deficiency and really bad ligaments. My understanding is that some people naturally have a tighter space between the ST and SS ligaments at the ischial spine and are more prone to nerve compression there. Once the nerve becomes irritated and swelling occurs, it cannot glide freely and cannot heal. Also, repetitive hip motion can continue to cause nerve irritation. Also, I think some people are genetically more prone to developing nerve damage and developing pain just like some people are more genetically prone to developing certain types of cancer. I read a scholarly paper about the genetic difference in nerves in people who develop neuropathic pain. Their nerves were missing some component but I can't remember what it is. Unfortunately, I haven't been able to find the article again -- wish I had saved the link at the time. Certain people react to drugs differently based on their genetic make-up so it's not unreasonable to expect that people's nervous systems differ based on their genetic make-up.

Violet