PNE/PN and Sexual Disability

[IHatePNE]

Thank you

[Richard1969]

@ LaraMarie-

It's my understanding (at least in the USA) the stim procedure that Dr. Peters does is FDA approved if there is any type of voiding disfunction. Meaning its covered by insurance. He's an excellent physician. He has actually called me multiple times on weekends just to check on my progress. I've never met such a caring and warm person.

[Laramarie]

Richard1969
Thank you for that information. Very much appreciated.....

Lara

[IHatePNE]

I have been undergoing shockwave therapy too as part of my treatment regimen and Dr. Andrew is of the opinion that I have a Dorsal nerve entrapment due to the fact that I experience travelling pain to the numb area of the penis when he places the shockwave machine over the location of the dorsal nerves. I have experienced small improvements in penile sensation lasting for about 4 weeks and a complete elimination of the numbness in my right anal area and improved erectile function. My pelvic floor physio too noted that my pelvic floor dysfunction has improved post shockwave. Both Dr. Andrew and Nelly Faghani are of the opinion that I do not have any issues around my alcocks canal and both have advised me not to worry too much about the possibility of permanent nerve damage as the nerves down there can take a lot of compression. Dr. Andrew feels that with continued treatments and the lifestyle modifications he recommended that I have an excellent chance of recovery though it will probably take a while (as in at least a year). Nelly Faghani is also optimistic as she has found internal trigger points that reference to the numb area and that with work on those "slow and steady wins the race".

Depressing news...I did a follow up shockwave session with Glen Cameron as Dr. Andrew is currently off work dealing with a personal illness...Nice guy and he seems as diligent in his work as Dr. Andrew but he opined that If shockwave were to benefit me then I should have seen strong results already and that due to the length of time my nerves have been compressed there is a good possibility that the numbness is permanent due to nerve death as "nerves can only take so much compression then they die". Of course there are articles by neurosurgeons warning of the possibility of permanent nerve damage to lengthy compression. GREAAAAT. Now I have trouble sleeping at night well hopefully he is wrong and the other two are right. I will give shockwave another go or two with Dr. Andrew when he returns to work but I am also already preparing for the next step in my treatment journey with I hope will come to a successful end (ie full sensory recovery or at least enough for me to reasonably enjoy sex again)

[Violet M]

Konedog told his experience with ESWT on the forum and I think it took him many months of slow recovery to improve. So I don't know how it will work for you but hopefully it will help over time. It seems like most PN patients have to be careful and continue some lifestyle changes long-term to prevent the symptoms from returning.

Take care,

Violet

[IHatePNE]

The lifestyle changes I have been given by Dr. Andrew are to perform various stretches to keep the muscles he shockwaved loose (especially the hip flexors and adductors), to cease doing sit ups and only perform the core strengthening exercises he believes will not aggravate my condition, to get orthotics made and to take B12 vitamins and do follow up treatments. My Physio also assigned my with 20 minutes a day of deep breathing and a rectal wand to use once or twice in between PT sessions. I follow all of these things without fail. I find it interesting that although Dr. Andrew and Mr. Cameron developed this protocol together that they have such striking differences of opinion on at least 2 respects: 1) Dr. Andrew seems to think that in my case a little bit of change is great news and that it is a good sign that I will make a recovery over time with more treatments and lifestyle changes while Mr. Cameron seems to think that if shockwave is to work you should see significant benefits relatively quickly. 2) Dr. Andrew stopped performing shockwave treatments to my Anterior Pelvic Floor after a while on the grounds that too much treatment to a given at a time area might hamper any possible benefits while Mr. Cameron seems to be of the opinion that you cannot overtreat an area.

[Violet M]

Well, the PNE docs don't agree on everything either so I guess it's not surprising if Dr. Andrew and Glenn don't agree on everything. Treating people with PN is not an exact science unfortunately -- partly because we are all different with varying etiologies to our disease.

Violet