For Friends & Family of Pudendal Nerve Entrapment Sufferers

[Amanda]

Here is a copy of this wonderful explanation about living with PN.

For Family & Friends of Pudendal Nerve Entrapment Sufferers

What does it feel like to suffer from Pudendal Nerve Entrapment or Pudendal Neuralgia?
Pudendal Nerve Entrapment is a rare and extremely painful disorder. Sufferers have described the pain as feeling like “burning acid in their pelvis"...."like their bladder and bowel were on fire", "the same sensation as getting soap in your eyes, only in your pelvis"...."like you have a hot poker trapped in your bowel or vagina"...."like razor blades are constantly cutting your pelvis apart"..."like something is pulling or twisting your genital organs”... and the list goes on. Nerve pain is not comparable to arthritis, fibromyalgia or the simple aches and pains felt by the general population. It’s the sort of pain that would send most people to the emergency room.
What Is Pudendal Neuralgia or Pudendal Entrapment?
A nerve can become trapped in any part of the body. For example: carpel tunnel syndrome is essentially a trapped nerve in the wrist, but the nerve is easy to access and untrap because of it's location. Because the pudendal nerve is situated deep in the pelvis which is dense with connective tissue, ligaments...etc...it is difficult to access with injections or surgery. And, because the pudendal nerve serves a very sensitive area of the body: bladder, bowel, genitals...it can be more painful and debilitating than other nerve pain or entrapments.
Why is it so difficult to diagnose?
The pudendal nerve cannot be viewed by your standard medical tests such as an MRI, CAT Scan or X-Ray. The nerve originates near the sacrum in the lower back, and branches out to the bladder, bowel and genital organs. This is the core stabilizing area of the body, and is therefore densely infiltrated with connective tissue, ligaments, muscle and fascia. Imagine the nerve as a long piece of spaghetti with tiny branches buried deep within all this tissue and muscle. Standard medical tests cannot visualize these tiny nerve fibers. As a result, many sufferers have been misdiagnosed with lumbar disc problems, chronic prostatitis, vulvodynia, interstitial cystitis, gynecological problems, and unfortunately some patients are referred to as “head cases” when their doctors are not able to find the cause of their pain. Also, because of it’s rarity most physicians are not trained to look for it. Even the standard test for pudendal nerve function (PNLT) is not a perfectly accurate test. We can only hope that newly developed diagnostics will be able to show the nerve in detail, and this will inturn inform a broader spectrum of the medical community of this disorder and result in a quicker diagnosis.
Why can’t they remove or destroy the nerve?
The pudendal nerve plays a vital role in everyday bodily functions such as urination and defecation and therefore cannot be cut, destroyed or removed.
How did the pudendal nerve become damaged or entrapped? No one really knows for sure, but there are numerous causes of nerve damage. Many sufferers have had previous pelvic surgery, disease or trauma (hysterectomies, hernia, childbirth, endometriosis, a serious fall..etc) to the pudendal nerve area in which it is possible the nerve or surrounding structures were damaged. During pudendal surgery, some patients have been found to have their sacral ligaments crushing the nerve, scar tissue from prior injury is entrapping the nerve, or even congenital abnormalities in which the nerve is displaced or attached to the ligaments. It has also been noted that people who bike a lot tend to suffer from pudendal problems. The forward leaning position of the body as well as the intense pressure placed on the pudendal area during biking could predispose a person to pudendal pain and cause scarring and inflammation.
Why are certain activities so painful for the sufferer?
If the nerve is entrapped or inflammed, certain positions of the body like sitting, stretching or squatting can stretch or put even more pressure on the already entrapped nerve, causing even more pain. The main activities that the pudendal nerve patient should avoid are sitting, biking, lifting, pushing, pulling, squatting, vacuming, and stair climbing. It is important to note that the activity may not be painful at the time. Most sufferers will develop an increase in their pain AFTER these activities and may feel a serious increase in pain for days or weeks.
What treatments are currently available?
The first step is to avoid ANY activities that increase the pain. It is extremely important that the patient have a trial period of a few months without unnecessary sitting, lifting, stair climbing..etc.... before trying more invasive treatments. If avoiding painful activities does not decrease the pain, pelvic floor physical therapy can be tried. Anti-inflammatories, muscle relaxants, opiates and some epileptic medications are of some help, but it is important to understand that nerve pain is very difficult to treat with pain medications. Pudendal nerve blocks can help with diagnosis and in some cases reduce pain. Surgery for this condition is in it’s infancy and not practiced by many surgeons in the U.S, but surgery has shown success in some cases. It is EXTREMELY important that the patient receive their diagnosis and treatment from a physician who specializes in pudendal nerve problems, therefore it is not unusual for a patient to have to travel a considerable distance to receive proper treatment.
Why is my friend or relative so depressed or frustrated?
Please try to imagine the impact of serious chronic nerve pain, and this diagnosis in particular. Think about the things that are most important to you. What makes life worth living? Your career? Your love relationships? Your children? Your hobbies? Maybe you like to travel? Garden? Go to the movies? Hike, ski, or exercise? Every one of these activities is severely restricted, limited or downright impossible with pudendal problems. How would you make a living? How would this impact your relationships? Your quality of life? Your hope for the future? Imagine the impact this drastic change in your quality of life would have on your mood. Now try to remember the last time you felt serious pain; a toothache, a broken leg, kidney stone... etc.....We're you anxious? Depressed? Scared? Couldn't wait for the pain to stop? Imagine feeling that pain EVERYDAY. Think of what your friend or relative was like BEFORE they had this pain. I bet they were vital, productive, hard working citizens. Now, through no fault of their own, their life has been drastically altered. Simple everyday bodily functions are extremely painful. Everyday chores are too painful or impossible to do and they now have to depend on others. They wake up everyday with serious pain, and everynight they desperately try to fall asleep with serious pain. Their prognosis is unknown. There's no end in sight. Most medical treatments for pudendal problems are considered experimental, of unknown benefit, and could even make their pain worse. Their friends and family don't understand, and their local medical facility is uninformed. Sound depressing? It is.
What can I do to help my friend or relative?
Try to understand how you would like to be treated if you were in this situation. Acknowledge they're in pain. Try not to minimize their predicament. Ask if you can pick something up at the store, help them with a chore, or if they need assistance going for medical treatment. Please don't say "at least you don't have cancer". There is a "c" word worse than cancer....that word is "chronic" pain.


Response:
This made me cry because it's like you are describing me. Thank you so much for writing this and taking the trouble to post it.
Yes, it was Medical News Today - and it is a fantastic article. I think I told the story before, that my husband made me copies of it, and we had them in a file which he brought with to one of my first doctors appointments. I took one in with me when I saw the doctor, and while I was gone, he read the article for the first time!. That was the turning point for him - he finally understood what I was going through. From that point on, he completely changed and was a different person. It was a complete 100 percent turnaround. He started taking care of me and organizing my medical care, and for me it was wonderful! In all our years of marriage he never went with me to a doctors appointment. Now, he not only takes me (out of necessity), but he comes in the room for the appointment. From never cooking, he has turned into a wonderful cook. Nothing fancy, but he can put together a nice dinner on some days when he comes home from work, (some days we have carry out. ) and does laundry and housework on weekends. This is from a very old school generation where the husband worked, and the woman took care of the home (as his parents did). That generation never changed diapers or had much input in child rearing. We have been married almost 49 years, and I never thought I would ever see this happening. I asked him once about his change, and all he said was that it was time for him to "step up to the plate". As I said, it was a turning point for outr marriage, because my husband finally understood how much pain I was in. He has been a different person ever since he read the article, and is the reason I keep pushing ahead trying to get well. Here is the link to the medical article from the health website.

[Karyn]

Hi Amanda,
Thank you for reposting this very important article. It truly is a MUST READ for anybody with a loved one who is suffering with this horrific condition.
Thank you!
Warm regards,
Karyn

[Amanda]

Hi Karyn

Even reading through this post makes my shed tears.....it is so hard to describe razor blades in the nether regions....yet it is so true of a description.
I live on ice all the time and it is not a normal life that is the huge difficulty I have in accepting the new normality that PN provides!!!