Health Organization for Pudendal Education

Hi sadie, thank you so much for the encouraging words. Along with seeing someone in the Netherlands I found a gynecologist who was willing to listen and although she could not help she referred me to another colleague of gers. Meanehile she prescribed a numbing gel that helps with the sensitivity. I do hope it gets better and I am trying to stay positive and concentrate on my healthy baby. I will write the results of my appointment in the Netherlands. Thank you so much for the support.

Sadie, do you know if her friend did anything about it or did it go away on its own?

Aple so sorry i am late in getting back to you as i understand when you are suffering every second is like a decade , so i am sending with a hug...i left a voice message on Wendys cell about your questions , and sent a copy of this thread, to the forum member that i was talking about so you could pick her brain directly . Her name is Wendy7 if you want to PM her , but I do not know how often she goes on the forum. so hold tight ...Sadie

Hi Sadie,

Thank you so much for the reply and your support. I will try contacting her as soon as I am back home. I have an appointment with the physical therapist today and will update as soon as I know.

I had my almost 3 hour appointment with a pelvic floor therapist received so much information. First of my tail bone is shifted to the left (which she repositioned). I also have tight pelivic floor muscles and especilly deep in the posterior area and deep in the muscles to the left. If tight pelvic muscle caused my tailbone to shift or the shift caused the pelvic muscles to tense up is not known. That is why I experience all the symptoms. However, she said that tight pelvic floor is common postpartum. She could not determine either my pudendal nerve was damaged or not. She said that it could be irritated from giving birth and that I should wait for a month or two and then to contact her again. If the issue still persists, she will refer me to a doctor who can perform a PN block. Meanwhile I will try to find a pelvic floor therapist here in Germany and see if this helps. I did not ask her directly if I have PGAD or not as this is not my priority and I view it as a symptom of something bigger. I think that tight pelvic floor muscles can cause these sensations in my clitoral area.

The reason why she could not conclude PN is because I do not have pain. She did say that it could be irritated during childbirth. I pushed my son out very quickly -- 20 minutes.

In my experience, pudendal neuropathy can cause symptoms of PGAD without causing pain. There was a period of about 3 months that I had PGAD without pain, but eventually it developed into pain too.

I hope PT helps you.

Violet

It is verynhard yo describe because sometimes it is uncomfortable amd hypersensitive in one spot sometimes everywhere else. This incomfortable feeling sometimes borders with pain. I would sau it is a nerve "pain?" Feeling. It is unpleasant when i stroke certain skin areas. Really feels like a merve issue. But since my muscles are tight I will try and work on that... Before medicating myself . Unfortunately, Inhad to stop breastfeeding as it was getying more amd more uncomfortable sitting for hours.

I am trying to not lose hope for the better outcome

I do not know about your specific problem, but it falls under pelvic floor dysfunction. You need to find a doctor who understand this problem. Most do not. Then an mri or ct to look inslde. A doctor cannot see what is happening kmechanically , but it looks like a nerve is sending messages to your brain that are incorrect. There are PT who are wonderful and specialize in PFD. You get a refferal to that PT. They know how to find the nerve or area it comes from. They can often stop that by inner work that calms the nerve and physical movements to stop it. I have pudendal neuralgia. I have had to go to a pain center where the doctor specializes in nerve problims from your spine. My PT could feel the nerves working and told me i needed a refferal. The first one did not do pudendal work so i was very lucky i have a practice that dealt with pain managment other than pills. I am allergic to all opiods, nerve pain , and most medications. I have had a genetic study done to help get medications that works. These doctors do injections into the spinal area or nerves in
the spinal nerves . I do not ever have sedations. The pain is minor. Working in the pelvic floor is dfficult, but he has done more than 20,000 injections for jnerve pain problems.
There are other ways to work on the out of control nerve. Hard drugs are not the answer, although i have had 2 toradal shots. Out of desperation.
I take a very old antidepressent Amitriptlyne, it is a tri-cyclic type. It is also used succesfully for pain. I have taken it at night for 25 years and had no side effects , but a dry mouth. A doctor wanted to give me a newer ssdi called cymbalta. It just about killed me. I had side effects of my brain blacking out, while driving, sick, no memory, no concentration, dizzy, skin blotches ect. These are supposed to be withdrawl effects , but i had them all as side effects. The doctor gave me a drop down callender, but after the last pill i found out about the horrible pill from hill. It took over my life and reason to live. I was still taking my Amit. at night , so my brain still had a little fight left. I have started to have some hours without depression and think the devil pill cymbalta is losing control. People will take a horrible year to get off of it.
I am having a set of 3 nerve injections with CT scan amd electric pulses to find which pudendal branch is the problem. They are like spaghetti in the pelvic floor and control function and pain in your pelvic organs and legs.if that doesn't work there are other things they can do. It is 6 years of trying to find help, not get worse. I have been in bed for 7 months. I used to be able to lay down and the pain would go away, not since my last chiropractic treatment. My pelvis and sacroiliac do not work together correctly. So my punendal nerve can be pinched. I also have IBS, so that adds to the pelvic problem. My IC keeps under control with a oxytrol patch for smooth muscle relaxant. IC is now considered a pelvic floor dysfunction.
Do a lot of research from non advertising places.also make sure it is not old information. I like Mayo Clinic , Cleveland, and MD. This location has huge amounts of information.

I never thought about the nervous system being the place to look at for dysfunction and pain.
Good Luck to all of you having this disfunction.