Health Organization for Pudendal Education

Hi guys,
I just had my first appt with pelvic physical therapist. My luck must really be turning around because this woman is knowlegeable...only left with me with more questions or possibly a clue. She took a complete history of all my surgeries, symptoms, all my injections (19), pain issues, stomach issues left sided pain and reviewed my plan for surgery with Hibner on the 15th. She did not work on my pelvis this time as we spent most of our time getting familiar with my case. Anyway, she asked me if i have pain in my neck....i never even told her about my neck and chest pain because i was there for my pelvic pain. Anyway, I have been complaining about this pain in left side of my neck for years too, and left chest, left upper abdomen, right below breast ..they keep telling me its from Acid Reflux/Gerd... She worked on my neck both sides and knew every spot exactly where my pain was then in back of my head behind my nerves both sides and found another spot on my left neck. She also did needle point to left neck. She explained that it is the VEGUS NERVE. What!! She explained that the left vegus nerve controls all my pelvic nerves and could be leading to my increased pelvic symptoms. My pelvic pain is worse tonight than it has been since i started using baclo/diaz/ketamine suppositories. As i drove half hour each way, i wonder if it's flared more from sitting, but the diagrams she showed me on her computer and her explanations made it look like it could be involved. She did add she has no doubt i have pelvic nerve damage (since they have cut nerves) and scar tissue issues, but my question is had anyone ever had issue with this VEGUS NERVE??? please advise if you have heard of this.
Also she is concerned (i didn't tell her i was too till after she said these things) that i should be asking why i need my right ovary and tube removed as this may give me more issues with no hormones and menopause issues....why are they doing bilateral pudendal block (i already had two at Clev Clinic, and only have left pain, she agrees with left side adhesion removal from sigmoid and descending, but she is very leery about me getting to obturator, Psoas, and obturator internus on left. She said from what she know about botox to this area and could be urinary and fecal incontinent and she feels if really need to discuss this with Hibner. Isn't botox his go to treatment. So now i'm back reaching out to my pudendal friends. Why did they not discuss this VEGUS NERVE??? actually i didn't tell them about upper pain and neck pain. Why did they not discuss fecal and urinary incontinence from botox. What are the percentages that this could happen to me??
Is is always temporary if it happens??? or is it permanent in some cases...how many??? Back to being clueless in Ohio. Any thoughts???

Please Advise
Aunt Netty

Hi Aunt Netty,

those are really useful info. I can not answer your question. But i may have similar issue.

When my PN pain first start about 4 and half years ago, it only last about 2 weeks. but around the same time, I start to notice twitch at my neck. --> not a lot maybe 5-8 times per day. some day is more, some day is less. since it did not cause any pain, i kind of ignore it. and also I jaw pain and tiredness time to time. I wonder it could also be related?

I have my next visit with Dr. Hunter at 03/29/2019, I will ask him about vagus nerve and my condition. does you pelvis PT mentioned any thing about next MRI or some kind of scan will help?

Thank you

Josh

Hi Josh,
Thanks for responding. Please update after 3/29 appt if you have any info. To answer your question, she asked if i had pain in my neck (Of course i didn't tell her that because i was there for pelvic therapy. I have had pain in my neck for years (not debilitating just enough to be bothersome)...gastro keeps telling me from gerd...why would that just be on left side. She wasn't surprised they told me that. Anyway, she massaged nerve in my neck and behind ears and back of head bilaterally..I only had pain on left side...exactly the spots she said i would...didn't even realize the spot behind my ear till she touched it. Can't make it up. I have been saying for years, because its true, all my pain in on left side of my body, if you cut me in half I'd be great! Just never realized there could be connection with neck pain and left upper abdomen, left lower pelvic pain. If that is really true, why i am i just finding this out. She did some needle pointing (first time i had that, was not painful like i expected, can't even really feel needle going in. She has me gently pressing my chin in 3 times a day (about 5 times for about 5 seconds)...supposedly to try and take pressure off vegus nerve. This was my first appt. She plans on working on when i return every tuesday. I will update too.
Aunt Netty

Hi Aunt Netty

Maybe you can have a look at what "AllanT" writes under this link. http://www.pudendalhope.info/forum/view ... f=2&t=8568. He writes about PGAD and not about PN but I think in both cases the autonomous nervous system plays a big role, only the symptoms are different. AllanT describes a lot of symptoms that are not in the lower part of the body but also an expression of the symptoms in this region. His observations are a very good example that PN and PGAD are systemic problems and that this Vagus nerve together with the brain is the starting point for the whole problem.

If you are interested, there is a good book about the Vagus nerve that explains this "actor" in the context of Prof. Porges' polyvagal theory in an excellent way:
Stanley Rosenberg, "Accessing the Healing Power of the Vagus Nerve", ISBN 978-1-62317-024-0.
It gives a good overview of how important and central this nerve is.

For German readers the title: "Der Selbstheilungsnerv" - So bringt der Vagus Nerv Psyche und Körper ins Gleichgewicht.

Aristocat

My PT has told me that vagus nerve stimulation is being researched to help with pelvic pain. I don’t have any neck pain, but your PT’s work on your neck sounds interesting. I am nit sure why you are considering removal of your right ovary and tube, but I had mine removed during a laparoscopy last year to remove two huge ovarian cysts and I have not been put into menopause from it. It is my understanding that the remaining ovary typically adjusts and begins producing all the hormones your body needs by itself.

Stephanies

Thanks for the input. Much appreciated. Not sure why they are removing my right ovary and tube either. They suggest it due to my age "50". but i have no right pain.
Guess I'll find out when i get there.