My Story of Pudendal Neuralgia

My Story of Pudendal Neuralgia

By: Iris Nira Smith, PhD • Posted on August 11, 2022

It was a dark and stormy night…

Most stories that start this way foreshadow a tumultuous event on the horizon. Although my experience with pudendal neuralgia didn’t begin that way, a part of me thinks it should have…

The Pudendal Nerve Conduction Test

I showed up with my husband to my pudendal nerve conduction test unaware of what to expect. Days prior I was told, “You’ll feel a bit of a sting, but the entire test is less than fifteen minutes.” Prior to the test I thought to myself, “Heck, I’ve been through much worse with endometriosis!” When I arrived for my test, I changed into my gown and the rest, well…let’s just say I felt more than, “a bit of a sting.” Fifteen minutes later, I was drenched in sweat and tears.

Obviously, the administering physician has never had needles stuck in his private area, a “probe” placed in his rectum, and been shocked multiple times as a test. The experience was barbaric! During my consult a few days prior, I had shared my symptoms with the specialist, which in hindsight, scream classic pudendal neuralgia:

  • Burning
  • Numbness
  • Stabbing pain in the vagina or rectum
  • Feeling as if acid is being poured in the vagina and rectum
  • Hot poker sensation
  • Burning when urinating
  • Constipation
  • Painful intercourse

It hurt to sit. It hurt to walk! It hurt to exist! Newsflash, just reporting my symptoms was enough to confirm a diagnosis. I didn’t need to pay >$300 to endure the shock and probe treatment!

The Diagnosis is Pudendal Neuralgia

Prior to my diagnosis with pudendal neuralgia, I had already endured 16 years with endometriosis and 5 years with vulvodynia. This new pudendal neuralgia diagnosis put the proverbial “nail in the coffin” and it only exacerbated my central sensitization – when the body experiences a level of pain response far beyond normal. Meaning I felt the pudendal nerve conduction test on a whole other level. Little did I know, that in just four years I would also be diagnosed with interstitial cystitis (endometriosis’ evil twin), but that’s a story for another day!

Years later, in early 2017, I met Dr. Holly Thacker, and began treatment at the Cleveland Clinic. Because my case was complex, she collaborated with colleagues, including Dr. Tommaso Falcone, Dr. Joseph Abdelmalak, Dr. Jessica Strasburg, Dr. Courtenay Moore, Dr. Oluwatosin Goje and Dr. Darcy Mandell. The doctors at Cleveland Clinic work as a team and show so much compassion! This is a game-changer for a patient with chronic pelvic pain and it makes an impact on quality of life.

Managing the pain and symptoms

People often ask me, “How do you do it? How do you manage with such pain? My response, “Lots of tears!” But in all seriousness, I share, “It’s only by the grace of God – in His strength I take it one day at a time because He promises that tears endure in the evening, but joy comes in the morning.” Maybe you are not a religious person. Maybe you find it extremely difficult to see past the pain. I understand, I have been there. Heck, I’m still there! That is why it is so important to connect with a support group or with people who can give you the support you need (spouse, family, friends, church). Connecting with others is a powerful way to endure.

I share my experience with pudendal neuralgia not to scare anyone, but to EMPOWER! Yes, we will have difficult days. In fact, I can guarantee you will have days when the pain may seem overwhelming, but as the idiom goes, knowing is half the battle.

Being informed and taking charge of your body, knowing your triggers (stress, food, emotions, etc.) gives you back the control and puts you in the driver seat to manage the pain. It also helps you to be a better advocate for your care and treatment.

I used to be a marathoner and obstacle runner. Life looks much different for me now. If I can manage physical therapy, a 30-minute walk, or a yoga class, it’s a victory. Find what works for you…find your victory and celebrate it!

Pudendal neuralgia is not a life sentence, it is a diagnosis. One that can be managed with the help of the right caregivers, (yes, it takes a village!), who are informed and care about your progression and quality of life.

People often see me walking around with a “special cushion” that helps relieve the nerve pain while I am sitting. They’ll ask, “What is that?” I used to shy away from sharing, but now I see it as a way to spread awareness. Of course, I don’t tell them about the needle experience, but just enough to pique their interest so that they can hopefully one day use that knowledge to help others.

Remember, you decide the next steps in your care and how your story is written. Join me in raising awareness by telling your story and the challenges of living with pudendal neuralgia. Sharing your experience can help break down the walls around you and has the unique ability to connect and inspire those who may be alone in their journey or may be struggling with yet to have a diagnosis. Raising awareness is the forward progress that fuels future research and a way to find a better treatment!

Be Strong, Be Healthy, Be in Charge!

-Iris Nira Smith, PhD

About Iris Nira Smith, PhD

Iris Nira Smith is a Research Associate in the lab of Charis Eng, MD, PhD in the Genomic Medicine Institute of the Lerner Research Institute at the Cleveland Clinic. Originally from Houston, TX it wasn’t until she was personally affected by endometriosis at the age of 19 (1997) that her passion for scientific research began. She received both her B.S. and Ph.D. in Biochemistry with an emphasis in computational biophysics at the University of Houston, where her research focused on the connection between endometriosis and cancer.

Currently, her research focuses on understanding the link between autism and cancer. Her time in the lab is spent teasing apart their similarities and differences to understand their connection and how her research will impact the ways we diagnose and develop therapies to treat these diseases.

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