My Story – Part 1

My Story – Part One (Updated, September 2017)

In 2009 I had made the decision to write a simple blog of my then current life journey. My life had taken an unexpected turn, spiralling into a direction that I had fundamentally no control over. I had been diagnosed with a rare, and severe, chronic pain disorder, which was caused by the entrapment of two major nerves at the base of my spine. My pain, which has risen in severity over the years, required me to give up my passion as an educator and my hobby as a post-grad student. Both teaching and studying brought me immense pleasure and a major sense of accomplishment. Both I miss deeply. Upon the loss of my role in society, I began to question life and what my future journey may look like. The gradual loss of the life that I had once created seemed to be slipping through my fingertips. I felt as if I needed to reconstruct my life on all levels, not only physically or emotionally, but most significantly plan for my shaky financial future. I cried rivers of tears in those early days, as my life began to unravel, caused by the current and ongoing changes that were being forced upon me. I had lived in a world that required consistent daily interactions, both with the young and the old. I missed the joy that being social had afforded me. My condition not only caused physical pain but was accompanied by significant emotional pain. I suffered deeply from social isolation and exclusion. My need for a barrage of medications escalated and so did the amount of time that I spent alone. I have tried every medical, experimental procedure available, without success. While my body coiled up like a rattle snake lazy in the sun, I searched for medical advice or a cure on the internet. I found that social media was a way of connecting to the outside world. As the decline in my health continued to spiral downwards bringing with it more medications and more unwelcome side effects. Six years later and here I am, now 53 years of age and have lived a roller-coaster of health issues. The two most memorable were as follows. Firstly I trialed a spinal cord stimulator, where I held a remote control in my hands, with metal wires placed internally, into my lower sacrum and with the connecting wires protruding out of my back. The remote control would send vibrating pulses close to the affected nerves that were damaged. The trial was unsuccessful. Secondly, was the discovery that I had suffered a heart attack and not known about. I had developed a high pain threshold, which would bring its own set of consequences. As for the present day and years to come, I spend a lot of time lying down, as sitting or standing increases the sensitivity of the entrapped nerves. 

I was diagnosed with Pudendal Neuralgia in 2008 after multiple hospital and specialist visits. Following my diagnosis I have undergone numerous operations and procedures in an attempt to cure the chronic pain disorder. This included Decompression surgery, nerve blocks; using local anaesthetic and botox injections. I also underwent a trial of a Neuro-Stimulator where two wire leads were located close to the offending nerve in order to alter the pain responses without success. I have been through various medication combinations but unfortunately a cure at this point has been unsuccessful.

Professionally up to this point in time, I was an experienced educator and had enjoyed studying, obtaining numerous university qualifications, obtaining several scholarships throughout this time. As a result of my time spent studying and focusing all of my energy into my profession, I had reached the level of an educator of Gifted Students. I found it increasingly difficult after 2008 to maintain the level of hours required and my absence in the classroom was disruptive to the school and the students for which I felt extreme guilt. I left the school following the necessity for Pudendal Nerve Decompression surgery at the end of 2009. 

The following information is taken from Medical News Today which was written by Ms Violet Mathews and provides an outstanding explanation of what Pudendal Neuralgia entails:

What could possibly be worse than struggling with a painful condition and   feeling ashamed to discuss the problem because of its intimate nature? Such   is the case for many suffering with pudendal neuralgia, a little known   disease that affects one of the most sensitive areas of the body. This area   is innervated by the pudendal nerve, named after the Latin word for shame.

Due to the location of the discomfort combined with inadequate knowledge, some physicians make reference to the pain as psychological. But nothing   could be further from the truth. Unfortunately, discussing the condition with   gynecologists, urologists and neurologists often proves fruitless since most   know nothing about the condition and therefore cannot diagnose it.

What is Pudendal Neuralgia?

Pudendal neuralgia is a chronic and painful condition that occurs in both men   and women, although studies reveal that about two-thirds of those with the   disease are women. The primary symptom is pain in the reproductive organs and the immense discomfort is usually worse when sitting.   The pain tends to move around in the pelvic area and can occur on one or both   sides of the body. Sufferers describe the pain as burning, knife-like or aching, stabbing, pinching, twisting and even numbness.

These symptoms are usually accompanied by urinary problems, bowel problems   and sexual dysfunction. Because the pudendal nerve is responsible for sexual   pleasure and is one of the primary nerves related to orgasm, sexual activity   is extremely painful, if not impossible for many pudendalites. When this   nerve becomes damaged, irritated, or entrapped, and pudendal neuralgia sets   in, life loses most of its pleasure.

Where is the pudendal nerve?

It lies deep in the pelvis and follows a path that comes from the sacral area   and later separates into three branches, one going to the anal-rectal area,   one to the perineum, and one to the penis or clitoris. Since there are slight   anatomic variations with each person, a patient’s symptoms can depend on   which of the branches are affected, although often all three branches are   involved. The fact that the pudendal nerve carries sensory, motor, and   autonomic signals adds to the variety of symptoms that can be exhibited.

Diagnosis

Because pudendal neuralgia is uncommon and can be similar to other diseases,   it is often misdiagnosed, leading some to have inappropriate and unnecessary   surgery. Early in the diagnosis process, it is crucially important to undergo   an MRI of the lumbar-sacral and pelvic regions to determine that no tumors or   cysts are pressing on the nerve. In addition, the patient should be screened   for possible infections or immune diseases, as well as having an evaluation   by a pelvic floor physical therapist to determine the health of the pelvic   floor muscles and to uncover whether skeletal alignment abnormalities exist.   An accurate patient history is needed to assess whether there has been a   trauma or an injury to the nerve from surgery, childbirth, or exercise. Tests   that offer additional diagnostic clues include sensory testing, the pudendal   nerve motor latency test, and electromyography. A nerve block that provides   several hours of relief is another tool that helps to determine if the   pudendal nerve is the source of pain.

Pudendal Neuralgia and Depression

One of the most common symptoms that accompanies pudendal neuralgia is severe   depression. Some people with the disease have committed suicide due to the   intractable pain. For that reason, it is important to consider   antidepressants, as they can help lessen the hypersensitivity of the genital   area in addition to relieving bladder problems. Certain anti-seizure drugs   reportedly help to alleviate neuropathic pain while anti-anxiety drugs   provide substantial relief of muscle spasms and assist with sleeping.

Uninformed physicians are reluctant to prescribe opiates for an illness that   shows no visible abnormality, yet the desperate nature of genital nerve pain   requires that opiates be prescribed for these patients. While medications are   not always satisfactory, they do help take the edge off of the pain for many   people. Until the correct treatment is determined, it is imperative that   patients with pudendal neuralgia receive adequate pain management since the   pain associated with this illness can be intense.

Treatment

Treatment depends on the cause of distress to the nerve. When the cause is   not obvious patients are advised to try the least invasive and least risky   therapies initially.

Physical therapy that includes myofascial release and trigger point   therapy internally through the vagina or rectum assists with relaxing of the   pelvic floor, especially if pelvic floor dysfunction is the cause of nerve   irritation. If no improvement is found after six to twelve sessions, nerve   damage or nerve entrapment might be considered.

Botox is now used in medical settings to relax muscles and shows   promise when injected into pelvic floor muscles; though finding a physician   adept at this treatment is difficult.

— Pudendal nerve blocks using a long-acting analgesic and a steroid   can reduce the nerve inflammation and are usually given in a series of three   injections four to six weeks apart.

— If physical therapy, Botox, and nerve injections fail to provide adequate   relief, some patients opt for pudendal nerve decompression surgery.

There are three published approaches to pudendal nerve decompression surgery   but there is debate among members of the pudendal nerve entrapment community   as to which approach is the best. Since there are advantages and   disadvantages to each approach, patients face considerable confusion when   deciding which type of surgery to choose. Because there are only a handful of   surgeons in the world who perform these surgeries, most patients have to travel   long distances for help. Moreover, the recovery period is often painful and   takes anywhere from six months to several years since nerves heal very   slowly. Unfortunately, early statistics indicate that only 60 to 80 percent   of surgeries are successful in offering at least a 50 percent improvement.   Patients whose surgeries are not successful or who do not wish to pursue   surgery have the option of trying an intrathecal pain pump which delivers   pain medication locally and helps to avoid some of the side effects of oral   medications. Others pursue the option of a neurostimulator either to the   sacral area or directly to the pudendal nerves. These are relatively new   therapies for pudendal neuralgia so it is difficult to predict success rates.   Some pudendalites have devised ingenious contraptions for pain relief ranging   from u-shaped cushions cut from garden pads all the way to balloons filled   with water, frozen, and inserted into the vagina. Most have a favorite   cushion for sitting and many have special computer set-ups for home and   office use in order to avoid sitting. Generally speaking, jeans are a no-no,   so patients revise their wardrobes to include baggy pants and baggy underwear   – if they are able to tolerate wearing underwear.

Clearly more research is required to find effective methods to better manage   the pain and debilitation of pudendal neuralgia. But in the meantime, friends   and family close to those who have this devastating illness play a huge role   in helping patients cope, thereby maintaining the best quality of life   possible. Support, love and understanding are of primary importance for those   suffering with this affliction.

Written by: Ms. Violet Matthews

Article URL:   http://www.medicalnewstoday.com/releases/54832.php

Main News Category: Women’s Health   / Gynecology

Any medical information published   on this website is not intended as a substitute for informed medical advice   and you should not take any action before consulting with a health care   professional. For more information, please read our terms and conditions.
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8 thoughts on “My Story – Part 1”

  1. You are a remarkable woman Narelle and very brave. I was just reading your story and wish strongly that I could do something to help you. Reiki has been a tremendous boon for me and it is well-known as a coping mechanism for pain among other things. Seek out a Reiki Master/Practitioner and have a treatment first and learn to do Reiki on yourself. I hope it will help. Good luck to you.

    1. Hi Tracy, I really enjoyed reading your blog too. I’m not too sure about writing for pain week, I have some memory issues from meds. I think they requested I submit one of my past articles but the usual practice is to go to their site aand hopefully the information will be there.

      Health & happiness
      Narelle

  2. A really great blog….it is always reassuring to know that we are not alone when fighting chronic pain! As you so rightly point out, if we look OK on the outside it is hard for others to understand.

    1. It’s wonderful to read such supportive comments. Looking okay on the “outside” is sometimes our worst enemy. I had to go to extreme lengths to accept my diagnosis and then furthermore for family & friends to understand. I look forward to keeping in touch. Health & Happiness!

  3. Hi Jenny,
    Thank you for your supportive comments. However, it is I who needs to THANK YOU. I began the blog just over a month ago and was inspired to do so after completion of the survey that your team devised. Your questions hade made me think about whether I was using technology and Social Media to it’s full extent, especially when I am able to use my IPad anywhere, including my bed! The online Support from others suffering or involved in research with Chronic Pain has been outstanding. Sometimes no matter how well intentioned your family, friends or loved ones are in support of your illness, communicating with others who are experiencing the same is incredibly beneficial.
    Health & Happiness
    Narelle

  4. Hi Narelle,
    I am one of the researchers at The University of Queensland working in collaboration with Chronic Pain Australia exploring the use of internet, social media and apps by people with persisitent pain. Your blog is absolutely wonderful. I admire your resilience and creativity.
    best wishes
    Jenny

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