Raising Awareness for Pudendal Neuralgia

Raising Awareness for Pudendal Neuralgia

**Graphic personal descriptions below, sorry but there is no other way to communicate about this, you’ll see why**

Hey Guys and Gals 🙂

I am writing this post to help raise awareness for Pudendal Neuralgia and Pudendal Nerve Entrapment, little know conditions that my pelvis acquired in October of 2005 following a horseback fall which broke the sacrum and coccyx.

What is Pudendal Neuralgia? ” It is a pain lasting 3 or more months due to dysfunction or compression of the pudendal nerve. Acute pain is experienced in the area surrounding the pudendal nerve, most commonly known as the “sitting area”. The pudendal nerve stems from the sacrum and runs through the pelvic area into the urethra, anus, rectum, perineum and genitalia.” www.pudendalassociation.org (There are actually two main branches with 3 smaller branches each.)

Many of you know that my body has chronic pain issues, most of you think I have “back pain”. Not to minimize back pain, that is bad enough and yes, with spinal cord damage my body does have back pain but it is not my biggest challenge.

I honestly don’t spend a lot of time talking about Pudendal Neuralgia. Not because I am embarrassed or don’t see the need to get the word out about it, but because I have to live with it every day and I spend every moment…doing everything I can…to focus on ANYTHING else but PN.

I have also been struggling with how to write about it. It is very personal and “sensitive” information that many people are uncomfortable with. Being an RN for so long, I have no problem speaking of such issues and teaching about them….but everything I have learned about the Universe tells me not to “focus” on what I do NOT want.

PLEASE, Always picture us Happy, Healthy, Flexible, Active and Painfree <3  Thank you in advance <3

With that being said, We must get the word out. It took me 4 years of suicidal levels of pain before I found a Doctor who knew what was wrong. Another year of invasive testing before I could have surgery. Imagine slamming your hand in a car door for 5 years. All six branches of my Pudendal nerves were completely entrapped.

I cannot count the number of Doctors and specialists that I saw during those 4 years. I was told that I was “old”…that I had been broken too many times, spinal cord damage/surgery blah blah blah I kept saying, “NO this is different.”

Some told me it was in my head, one told me I was making it up. I just could not get them to understand the intensity of what I was experiencing. I was literally planning my death…but I didn’t want to die, I just wanted THAT pain to go away. I kept searching online and trying to hang on, praying for guidance and after 4 years, I finally came across PN and PNE. They listed every symptom I had. Finally!!

Once I knew what I had, I just had to find a Doctor. Little did I know that there were only 5 surgeons at the time, in the United States, that dealt with PNE/PN. I was told I would need to go to France because of my previous spinal cord surgery and damage in that area but I was unable to travel physically or financially. I kept searching and praying and I wound up finding the 6th surgeon, only 45 minutes from my house.

That was Grace <3

What I am about to say is very graphic and I wish it were exagerated but I can assure you, it is grossly understated. You may skip this paragraph if you like but I am going to try to describe what it feels like to me. PNE/PN could be likened to giving natural childbirth (crowning) while being electrically shocked, violently stabbed, crushed, and burnt from the sacrum down through the genitalia and thighs. It literally feels like my pelvis is on fire…not to mention all the other gifts that PN loves to give (will spare you those details!) You can be minding your own business one minute and suddenly feel as if you have been impaled on a stake in the next.

By the way, Men get this too. It can result from bicycling, weightlifting, childbirth, hysterectomy, injury to the tailbone or sacrum or there may be no “event” that can be pinpointed, it just appears.

I Thank God every day for my surgeon! He got the direct pressure off of the nerves giving them a chance. Unfortunately, surgery is only an option for those who have Pudendal nerve Entrapment and many surgeries fail. People go through procedure after procedure with little to no relief, often further complicating their situation. Pudendal Neuralgia (inflammation) cannot be operated on.

The Pudendal nerves are Sensory, Motor, Autonomic nerves so it rules out many things. With the autonomic activity of the nerves, we cannot “push” ourselves too far. Even just “sitting” can completely overwhelm our nervous system. It has nothing to do with how high our pain tolerance is or isn’t. It is not a matter of us not “wanting to”, it is a matter of not wanting to stroke out with astronomical blood pressures. Even the weight of clothing is too much at times.

Have you ever had constant nerve pain that no medication touches? It is exhausting, isolating and as Doctor after Doctor is unable or unwilling to help, many become hopeless. We try to keep each other going in the forums, spurring each other to make it another day…but we need help…how many are not in a forum and are still being misdiagnosed?
This isn’t even taught in Medical schools!!

There is an association that is trying to educate Health practitioners and the public about this life altering condition. They provide us with support groups, webinars, education, resources. Please share the information and if you can, give a small donation, every little bit helps.

Most people with this condition are on 6-10 medications like oxycontin, morphine, fentanyl, methadone, vicodin, muscle relaxers, anti- depressants, anti-anxiety meds. As you can imagine, the side effects of those medications bring on a whole other set of things to deal with. I myself, prior to surgery, was on over $800.00 a month in medications and I can tell you that even the strongest of these barely touch this pain. I didn’t even take the narcotics because they didn’t help. I mostly took muscle relaxers and an anti-epileptic that they give for nerve pain and I almost wound up in a nursing home unable to care for myself at all, literally. Now, my only relief is medical marijuana (think what you will, it keeps me sane), nutrition, MIND CONTROL and a whole toolbox of distractions!

We need research, We need options. We need answers. We need something that helps. We need Hope and to know that someone is out there trying to figure this out!

You can get more information and make donations on the Pudendal Association website   or at the Shine campaign. Thank you!

Please watch this Amazing video called “The Hurting Strings” An Artists story of Pain.

Beautiful story of Spirit, Faith and Endurance <3

 

If you have a service, technique, product…anything that might help someone with this condition, please contact me. I have found things that help a little and all the littles add up! I use nutrition, supplements, meditation, homeopathy, herbs, essential oils, accupuncture, reflexology, energy work, yoga, whole body vibration, qigong, thai massage and topicals…I am open to trying your suggestions if I can afford it! Thanks!