New Person with Pudendal Nerve Disorder

[konedog4]

Update: June, 2013.

Had ankle surgery, in cast 2 weeks , now a walking boot 3 weeks. No intensification of PN symptoms, in fact, less symptoms. I am not lifting anything and am lying around more, so perhaps that accounts for the symptoms being less. However, I am continuing my hamstring and pelvic stretches and am making progress in becoming more limber. The stretches are not aggravating the PN, so I continue with them. I have the (perhaps) crazy idea that the more limber I become, the more I am (perhaps) loosening my PN nerve from the scar tissue. I have never been a limber person, so the stretching is a work-out in pain for 1/2 hour each day. Has anyone recovered from PN through stretching and mobilization of connective tissues?
I will see Dr. Antolak next month for another series of steroid injections, starting with the alcock's tunnel area. I want to be as limber and loose as I can be before having the injections. Appreciate any thoughts from those who stretch as to whether it makes them feel better or worse?

kone

[helenlegs 11]

My own and VERY non-medical theory on stretches which facilitate nerve glide is that scar tissue and possibly/probably the outer sheath of the nerve stays in place as stuck within the scar tissue but the actual nerve (and the bit that causes pain) moves or glides within that scar tissue space so that pain is not so intense as it is not in one particular nerve spot continuously. This may be utter nonsense but I also like to stretch (although I am very limber and actually a little hypermobile)
Too much continuous stretching, in my case bending over and squatting can cause a flare up, so it is getting a balance. Although there is a fairly large difference between what is okish and what will cause an intense flare. The problem being that it will catch up a little later, rather than inform you at the time.
Good luck with the blocks, glad your ankle is improving.

Take care

[konedog4]

Thanks for your comments Helen. I too have noticed that stretching does not cause immediate PN discomfort but may cause significant discomfort later. When I made my PN much worse by working in the woods and lifting heavy logs, I felt perfectly fine at the time. It was several days later that I noticed something was wrong, and then several weeks later before the full force of the PN pain hit. Question: why did the pain take so long in developing? If the nerve was actually damaged, why didn't I feel it right then and there?

kone

[michellem]

Hi konedog4. I too have pne and pn due to childbirth for a lil over6 yrs. I'm in az and see dr Hibner. He does do nerve mris on the pudendal nerve. I couldn't do it cause I have a neuro stimulator implanted. The stimulator does help with the tight muscles which also aggregate the nerve. He also prescribes Valium suppositories. That the medicine is put right in where the issue is instead of taking a pill. Usually the muscle relaxers are not strong enough tovdirectly effect the problem area. N there is the side effects of taking muscle relaxers. Dr Hibner also does Botox for women in their vaginas but don't know what they would do for males or where they would put the Botox. Dr hibner also does pne and pn surgeries and ive had good experiences with him I have found that the more tight my muscles are the worse my nerve hurts cause it irritates it. Things that help me relax the muscles are deep breathing, sex and orgasm, and physical therapy( not exercises but tissue massaging). Hope this helps. If want or need more info on dr Hibner he works at barrow neurological hospital or st josephs hospital and medical center in Phoenix, AZ. His group is called az center for chronic pelvic pain. Hope this helps.

Michelle

[konedog4]

Thanks Michelle,

I have not considered surgery because i cannot afford to take a year off to recover. (I have heard good things about Dr. Hibner). I do not want surgery because I want to see if progress can be made through non-surgical means, plus, I do not trust that the surgery will work. I am going to continue stretching and mobilizing tissues as much as possible through my own self-care, chiro care, and Dr. Andrews in Canada. I take clonazepam .25 mg for relaxation of the pelvic floor. I am going to try to wean off this entirely and see what happens. I have already cut back from 1 mg to .25 mg as a result of shockwave therapy. Appreciate your input. This is a very difficult condition to live with, especially for those who have enjoyed an active and physical lifestyle (me). I hope you have many pain-free days!

kone

[michellem]

Yea the surgery is very intrusive. I've had 2 and a wound surgery cause my scar wouldn't heal. They do cut the ligament but dr Hibner now uses cadaver ligaments to put it back together. I just got off of all pain meds and am doing ok. It still hurts everyday but I'm managing. So happy to be off them. 6 yrs was on pain meds and I tried everything. I too was a very active person my entire life and this knocked me on my ass. I'm still weary of exercising cause if I do too much I pay. I hope u can get off the meds cause life is better without. U should really try the Valium suppositories n see if it helps cause its going directly into those muscles. Does the shock wave therapy really help? have not tried that yet. I too hope what ur doing can and will help u to have pain free days.

Thx,
Michelle

[kathyd]

Hi Folks
I have quick question for Konedog.
What type of pain does Clonazeapam help with? I noticed that you used to take 1mg for pain.
I take .05 around bedtime and usually need to add another quarter pill to get to sleep. It helps so much with sleep.

During the day I have severe rectal pain.. so bad that I am in the process of organzing a pain pump trial.
Meanwhile it would be great if upping my Cloneapam during the day would help my pain.. but I hesitated to go up on it cause I didn't want my system to get too used to the medicine.
But if it would help, then that would be great!
Just wondered what type of pain it helps you with?

Hope you feel better soon with the stretches and things you are trying!
Thank for any info
Kathy

[kathyd]

Hi Helen
I too notice that things like squatting now hurt... when a year ago it was fine.. E
Like you said ...the pain from it comes on a bit after you bend or squat not at the exact moment.

But as a homemaker and Mom... there is no way one cannot bend .... (There would be stuff all over the floor etc etc.!
Kathy

[konedog4]

Clonazepam is not a medication that you want to get on long-term (finding out that the hard way!). It was prescribed for me to relax the muscles of the pelvic floor and ease my urinary urgency. It did a good job on both I must say, but it also makes one tired much of the time, and is addicting. So that is why I am beginning to wean off of it. I have been on it over 2 years, so according to the experts, I must reduce my dose a bit each month and slowly wean off of it. I tried going off cold-turkey twice and each time I had to restart, as the withdrawal symptoms were so severe. I am seeing Dr. Antolak next month and I will ask about the valium suppositories. How long do they last - have an effect? Clonazepam has a long half-life, so it lasts all day. And yes, it also helps with sleep.

Shockwave therapy helped me a lot. I am at least 50% better, as I can sit now, whereas before, I could not sit at all. Shockwave can only do so much, but I hope to try it again to see if more gains are possible. I want to avoid surgery.

In regard to surgery, there has to be a less invasive, kinder surgery than the transglute approach. Surely some American doctor will learn a scoped approach that is kinder to the tissues. Hope it happens soon!

kone

[ZPC2THLgate]

You are an amazing mom to even get to the point where you recognize that her problem might be neuropathic.

























__________________________________________________________
Thl ThL W8 ThL W200