New Person with Pudendal Nerve Disorder

[Alan1646]

The sitting pain I have is in the area of the perineum, and feels sort of hard, as if I'm sitting on rocks, and also has an aching quality. The greater the pressure, the worse the pain. The best cushion for me - and I've tried a lot- is the Togu. It's easy to carry around and sort of folds in half so you can easily put it into a fairly small bag.One of the injections I had from Dr Baranowski completely eliminated the sitting pain for an hour or so. I think everyone's pain is different though. I have the idea that the pain is similar to that felt by diabetics with circulation problems, which may well indicate a mind/body condition, due to oxygen restriction in the tissues or even the nerve itself, as explained by Dr Sarno. Or there could be a completely different explanation for it. I do wonder whether certain kinds of stretching help because they increase blood flow and therefore oxygen to the affected areas and whether ,in the same way, exercise helps for the same reason.Physiotherapy and massage also temporarity increase blood flow and I'm really unsure about the science behind "trigger points".

[kathyd]

Thx Alan, for your reply,
My pain is similar in the throbbing nature and that the pressure of sitting on a surface causes pain---mine is on contact.
I feel less pain if Im distracted with something I enjoy like socializing or shopping.. If I do have to " sit" in a situation, the longer I do so, th the worse the after-pain..due to pressure I assume...Also our soft cushy leather sofas hurt more than our firmer sofa, but regardless I can't tolerate either.
Thx for your recommendation of the Togu. Glad it works for you! It's the cushion that's separated in the middle for the perineum area? I will check it out!
I have a bunch of useless cushions. So my hubby finally built me one to raise me up a bit. First layer is wood-- cut in shape of a toilet seat.I then have a small "Roho" circular 'toilet seat' shaped cushion which I strap around a vinyl padded toilet seat.. my butt is raised up so it doesn't sink and touch surface of the seat. It still rubs somehow against edges and I get pain afterwards. Sometimes it works well, others not as much. but it's SO worth it to get out of house on my own...for sanity!!

I misplaced a cushion that helped when I had to lie on surfaces..( it was a simple rectangular one from the 'relax the back'... with a black cloth textile cover and air holes which you pump up to your comfort level.It was recommended to me by the Pelvic Pain and Rehabilitation Ctr in San Fran,(which I visited a few years back) I called them about it, but their current receptionist did not know of it.I know there was a "G" in the name of it but thats all I can recall.
At any rate it did not help with sitting, but instead provided a nice buffer if I had to lie on a harder surface. It was not too thick..just right
Relax the Back's' website didn't offer it now, so its probably not on market anymore.
BTW where iS Dr. Baranowski located? It's great that he was able to block the pain, at ..least to isolate the area.
About stretching I think it depends on each person's issues and root cause. My PT wants me to do them. She gave me a list of them. I only do the ones that don't pull on my anal/rectal area, and that feel comfortable to me. Im a bit reluctant, but she knows and understands pelvic pain and my issues well, so I may try more often.I agree with your thoughts on blood flow to the area helping.My hubby would agree as well. I think massage would be great for that reason.

Ive heard and understand the science behind trigger pts .. the idea is to eliminate them permanently over time (thus the need for self PT between visits to keep them from returning.)
It's hard to explain at the moment as I tend to "forget" details due to my current pain meds!
(another lovely side effect of opiates for me) as I usually have an excellent memory for details and names of things.
As my trigger pts were worked on my pain had begun to diminish slightly...Its depends on the PT and how skilled and experienced her 'hands on' work is. I'll ask my PT about the science behind it again when I see her next week.

[Alan1646]

About "Trigger Points"- all of the physios I've seen have talked about them and worked on them, but I have had, at best,a little temporary relief from pain.
I recall from reading Dr Sarno's books that he thinks they are a manifestation of oxygen deprivation of tissues caused by psychological factors, and so manually working on them is futile, as they will simply return because the cause of the oxygen deprivation of tissues has not been addressed.

I suppose that if his theory is correct, manually working on trigger points could result in a temporary reduction of pain as the pressure of massage could temporarily increase blood flow to the "trigger points". If anyone has been cured through massage of trigger points I'd be interested to see the evidence.There is also the possibility of a temporary placebo effect from having trigger point treatment.

I don't know, but it certainly hasn't helped me, despite spending large amounts of my savings of physio treatments. I posted a link under the physiotherapy forum section to a National Hospital for Neurology and Neurosurgery in London lecture by their Head Physio stating that there is no good evidence that hands on physio treatments help chronic pelvic pain.That's why they don't offer it there.

Dr Baranowksi is the lead pain consultant at the National Hospital for Neurology and Neurosurgery in London. Seeing him as a private patient is very expensive but he can be seen by uk NHS patients , free.
One other query I have about the improvements some people have with benzodiazepine drugs : if it's the muscle relaxant effect that reduces pain,why don't muscle relaxant drugs such as baclofen help the same people?

[nyt]

Alan1646, the mechanism of action of benzodiazepines and baclofen are not fully understood. Even though both work to enhance the effect of the neurotransmitter gamma-aminobutyric acid (GABA) benzodiazepines work on the GABA(A) receptor while baclofen works on the GABA(B) receptor. Benzodiazepines have a much broader range of uses than Baclofen even though both are used for spasticity. The published data I've read on the use of Baclofen for MS patients with spasticity is pretty mixed on its effectiveness to reduce muscle spasms. About 2-3 years ago a pharmaceutical company (can't remember the name) had modified Baclofen to try and reduce the side effects really showed me how poorly Baclofen in general works for spasticity, at least for MS patients but there are limited options. If you so happen to be an MS patients it helps you are a lucky one. The difference you ask about could also be that activation of the GABA(A) receptor is better at relaxing muscles than activation of the GABA(B) receptor. I do not know if there is any data to support my previous statement though. Since how both of these medications fully achieve their effectiveness is not fully understood there is most likely some other receptors these medications work on that are different from each other. There is so little we know about how medications really work and how genetics of the individual ability to metabolism certain drugs is really just starting to be understood to explain why some patients require different doses of medications for effectiveness.

[Alan1646]

I don't know nyt I was just asking a question. I've found that none of the muscle relaxant drugs have helped me,and I've tried several. Stress and anxiety certainly makes my pain worse,so is it that much of a leap to suggest that dramatically reducing background anxiety that is so well established that it's not consciously noticed could reduce or eliminate pain?

[ezer]

This is my experience regarding benzos.
Valium worked like a charm for me. It worked very well but I have an aunt that got addicted to it and for me it always scared me (albeit somehow irrationally).

When I was in pain, I felt that I was in the flight/fight/freeze mode. Accelerated heart rate and my body would get stiff. Whenever my pain would go away in response to mindbody work, my heart rate would slow down and my entire body would relax.

It was the same experience with benzodiazepines (valium, klonopin). I feel that it was temporarily relieving me from being in the fight/flight/freeze mode. Baclofen did not have the same effect.

Please look at the following. The amygdala is the center of the flight/fight response. the amygdala also stores our emotions.

http://www.healthboards.com/healthcente ... -body.html

When individuals experience stress or fear, the amygdala sends out chemical danger signals within the brain. The amygdala responds to emotions and helps prepare the body for the fight, flight, or freeze response. While this function is critical in meeting a real danger, it can become overburdened with inputs such as loud noises and low level threats, subsequently generating an extremely high number of chemical danger alerts. The body is designed to respond to these alerts, and the feelings of anxiety and fear are one of those responses.

The brain has several ways to generate calming neurochemicals, but for those with panic attacks, those natural functions are overwhelmed. All benzodiazepines, including Xanax, enhance the effects of gamma-aminobutyric acid (GABA), a naturally-occurring brain chemical that acts like the brakes on a car to slow down and smooth out excessive brain activity. GABA deactivates the neurochemical signals from the amygdala, which reduces both the physiological and psychological experience of stress, anxiety, and panic. Xanax helps your brain use GABA more effectively, amplifying its power.

[Violet M]

Interesting how we all have different effects from medications. My pain levels were affected by position and activity levels, not anxiety. Baclofen didn't help much. Clonazepam didn't help with burning/aching pain but if I took it at night when I was trying to sleep it did cause sort of a hypnotic stupor even though the pain was still there, and it reduced the electric shocks so I could sleep a few hours.

Violet

[ezer]

Just to be accurate. I am not an anxious person and I never suffered from depression. To the contrary, I deal too well with stressful situations. I truly believe that my "anxiety" did not come out as such but it came out as PN pain instead, some sort of equivalent expression.
Violet --Your experience is very different thus there has to be many different sources to PN.

[Alan1646]

I haven't counted the number of posters who have said that benzodiazepine drugs improve their PN symptoms,but it's quite a lot. It could be,as nyt says,that there is an unknown mechanism at work, or it could be a more obvious explanation,which is that reducing unconscious and conscious anxiety is a way of affecting pain.A few years ago I took one 5mg of Valium a day for three weeks and near the end of that time I was able to sit in my car with no cushion and no pain at all.As I drove around I could hardly believe it.Clearly,it doesn't work for everyone but it seems worthy of investigation.

[stephanies]

I think Ezer hits the nail on the head. There likely is a different mechanism at work in each of us that causes this pain. That is why the responses to therapies vary so widely.