New Person with Pudendal Nerve Disorder

[Violet M]

Kone, I'm very sorry to hear about your setback. I've had a few flare-ups now and then when I tried to do too much but have always been able to the flare-ups calmed down. Sometimes with PN it's a matter of figuring out what you can and can't do. Hope this flare-up will settle down for you.

Violet

[konedog4]

Violet, thanks for your encouraging words. This setback is quite perplexing. I cannot recall a specific event, movement, activity, etc. that could have caused the setback. I felt like I was going to recover completely, as I had come back to doing virtually all the activities and exercises I had done before I acquired PN. When you had your setbacks, was there an event where you knew, "Oh-Oh" I just hurt myself? I can specifically recall the events that led to the initial injury, but this setback has me baffled. kone.

[Violet M]

Kone, when I had setbacks it wasn't really a sudden event. When I started jogging some of the pain came back so I quit jogging. When I started lifting light weights doing The Firm exercise program the pain was creeping back in so I eliminated certain parts of the routine and substituted with things I could do. Thankfully the pain calmed down every time. Slowly over time I have figured out I great exercise routine I can do without flaring things up. I'm able to get my heart rate up and stay really fit without causing a pain flare-up. My goal has never been to get back to where I was before surgery. I know that is impossible due to my pelvic instability. My goal has been to find a way to stay fit and maintain low pain levels and I have been able to do that.

I hope you will be able to get things calmed down and get back to a level of fitness that you are satisfied with and still be able to stay pain-free. It is a real challenge.

Take care,

Violet

[konedog4]

I did a lot of leaf raking and hauling this weekend with no problems in pudendal area at all. Then, the first snowstorm hits and lifting that snow triggers pain again. Go figure. It is the exertion, the lifting, the position for lifting, or all three? The great unknowns of this condition are what really bother me. I don't know what I can and can't do. And if I do something "wrong" it may not show up for days or a week later. Tough to correlate specific activities with the trigger factors. Still planning on the shockwave treatment later this year or early next. Weather and travel are huge considerations now. Wish there were shockwave therapists in the USA that could work on pudendal issues. kone

[Violet M]

Kone, lifting things that are too heavy gets to me too. I think it really engages your pelvic floor muscles and irritates the pudendal nerves. Maybe it would help if you keep a diary of what activities seem to flare things up and then you might see a pattern. Does Dr. Andrew have any theories on the mechanism of what causes your pain?

Violet

[konedog4]

I damaged my perineum bike riding. Had a deep bruising ache for 2 weeks. About 4 weeks later I had PN. I don't know if I am impinged due to the scar tissue (likely in my opinion) or if I am impinged in the ST and SS ligaments region. MRI shows nothing unusual. Dr. Antolak believed I was impinged in the ligament region, yet none of his steroid injections helped in the least. Only the guided injections in the Alcock's area had any positive effect. For all I know I may have a neuroma (?). I have been on 15 mg Prednisone for about 2 weeks now and things are settling down again. I want to resume my previously recovered activity level, but I cannot, and this is the hardest thing for me to accept, as I had almost reached full recovery. But I must accept it or make things worse. So... here we go again ... back to treatment, physical therapy, and set the stage for recovery again. kone

[konedog4]

My flare that started about one month ago is now gone. I am feeling some symptoms but very minor. Stretching and walking for exercise. kone

[Violet M]

Good news, Kone. Take it easy.

Violet

[konedog4]

Thanks Violet. The hardest thing for me to do is "take it easy" :> I have always been physically active. Hardest thing for me to do is to take it easy. So I am gradually pushing the exercise level up again. Backing off, like before, if I feel symptoms. So far, so good. I am encouraged. I still have right sided PN issues, but nothing like before, when I could not even sit down. So I am expecting this too to calm down and hopefully resolve completely.

[rel56]

I am a male patient of Dr. Hibner. I just had Botox injections last week. So far I feel my pelvic floor is relaxed sometimes and other times it is hard as a rock. Still have pain but the pain feels different. Maybe I have not given the Botox enough time to work. I don't think it is going to solve my problem totally because I am convinced my nerve is pretty severely entrapped. If I don't feel better in about 2 months, I will call Dr. Hibner and schedule surgery.

If you have any questions regarding the nerve blocks or Botox, I'll be happy to answer. I have had both with Hibner.

Richard