Recovered From Pudendal Neuralgia: Sheyoume’s Success Story

In Female Pudendal Neuralgia, Male Pudendal Neuralgiaby Stephanie Prendergast6 Comments

By: Stephanie Prendergast

Pudendal neuralgia is a syndrome characterized by burning, stabbing pain in the territory of the pudendal nerve, which has a vast distribution in the pelvis. The symptoms can wreak havoc during ordinary daily activities such as sitting, exercising, going to the bathroom, and having sex. Nerves are physiologically different from muscles, therefore they heal differently than most people expect. The recovery process can be quite anxiety-provoking and therefore education about what to expect is often helpful. Patients with pudendal neuralgia may benefit from multi-modal treatment plans that include more than just pelvic floor physical therapy. This week we share Sheyoume’s story about how she developed and completely recovered from pudendal neuralgia. Even though nerves heal differently than muscles, they do heal. We hope her story inspires anyone suffering to stay strong and remain hopeful. Sometimes slight adjustments to treatment plans lead to the right combination of therapies for success, as they did for Sheyoume.

Relevant History from Sheyoume:

Sheyoume is a 53 year-old woman who referred herself to PHRC in May of 2018.

In July of 2017, Sheyoume was on a road trip when she developed left vaginal pain and burning. At the time of her initial evaluation in May 2018, Sheyoume was taking 200 mg of gabapentin twice per day and tramadol as needed. Sheyoume reported these medications were helping to control her pain, she noticed a reduction in burning shortly after taking them. Between July of 2017 and May of 2018 Sheyoume saw two different pelvic floor physical therapists 2 times per week. She reported that physical therapy resulted in transient relief, but she was still not able to exercise or have sex without the consequences of vaginal burning. Intercourse itself was not painful, however Sheyoume experienced a delayed and significant increase in symptoms afterwards. Bending over to feed her dogs results in a sharp, stabbing pain in the left vaginal area. Sheyoume reported that she is unable to work or socialize because of her current symptoms. Sheyoume came to us at the Pelvic Health and Rehabilitation Center for a second opinion.

My first thoughts:

Listening to Sheyoume’s history,  I knew we need to figure out why pelvic floor physical therapy was resulting only in transient relief and why despite physical therapy she could not bend over or sit without vaginal pain and why intercourse caused a delayed onset of vaginal pain. As I asked her more questions she reported that the physical therapy appointments consisted primary of internal manual therapy and most recently she was encouraged to also start pilates.

Examination and Assessment

During the physical examination we identified a number of external structures that could be impacting the ability of the pudendal nerve to glide/slide and move freely. Sheyoume reported that bending forward or squatting down caused stabbing pudendal nerve pain. When certain positions provoke symptoms it typically means the nerve isn’t moving properly somewhere along its course. A few impairments seemed to be causing the problem for Sheyoume: the connective tissue restrictions in the territory of the left pudendal nerve and hypertonus of the hip external rotators. Tight piriformis and obturator internus muscles can compress the nerve and interfere with normal mobility, especially in positions that involve hip flexion such as sitting and squatting to pick up a dog bowl. When people bend forward or flex their hip the pudendal nerve must lengthen to accommodate this movement. When Sheyoume squatted, these muscles compressed the nerve, interfering with its ability to lengthen, and the result was a quick stabbing pain. This pain resolved immediately when she changed position but could be a trigger for burning later on. Connective tissue restrictions around the perineal and dorsal branches of the pudendal nerve can result in less blood flow to the nerve. When nerves do not get enough oxygen they become hypersensitive. When Sheyoume tried to sit, the weight of her body on the chair caused further compression to the tissues that were compromised by connective tissue restrictions and the result was a gradual burn that would progress in intensity the longer she sat. Both sitting and bending over were triggers for Sheyoume. However, when nerves are hypersensitive they can cause spontaneous pain even without triggers. This is understandably a particularly maddening feature of pudendal neuralgia for patients. The key is to reduce the impairments that are triggers which cause the hypersensitivity to begin with and then to eliminate hypersensitivity. Sheyoume did not present with significant pelvic floor pain or tightness, which makes sense because she had months of internal manual therapy. The pelvic floor muscles were no longer contributing to her symptoms.

Nerves are physiologically different than muscles. Mobility and blood flow are crucial for healing. Sometimes removing the mechanical irritants does not result in immediate reduction in pain. It is somewhat analogous to turning a burner off on a stove: the fire may be gone but the burner remains hot for a period of time.

Plan

We initiated a physical therapy treatment plan of one visit per week to address the external and internal impairments with manual therapy and home exercises. In her history Sheyoume reported stabbing/burning pain that starts after provoking activities, in her case sex and exercise. Delayed onset of symptoms and symptoms that can be classified as neuropathic (burning, stabbing) warrant investigation into strategies that can help reduce central nervous system irritability. As mentioned above, removing the impairments is important but the hypersensitivity may also need to be addressed as an individual issue. Conservative treatments that can help reduce central nervous system hypersensitivity include pain science education, meditation, hypnosis, acupuncture, and mindfulness. On the medical side of things, pharmaceutical management or interventional procedures (such as nerve blocks, trigger point injections, or botox) can also help reduce this irritability. Both conservative and medical strategies can be useful at any point in treatment. When dealing with nerve issues, conservative and medical approaches will help reduce the impairments and symptoms, but very rarely will any single treatment completely eliminate all symptoms by itself. It is important that patients are educated about what these treatments can and cannot do and that realistic expectations are set. As we speak with our patients we often find that they have not been properly educated about neuropathic pain and what to expect from various treatments and the overall healing process.

During the physical exam, Sheyoume did not have tenderness when I palpated her pudendal nerve branches. One of Sheyoume’s physicians thought she should undergo a pudendal nerve block. I asked what he thought about the fact that her nerve brances were not tender to touch and she told me he had not done an internal exam. Clinical experience has taught us that the patients who make therapeutic gains with nerve blocks often have exquisite tenderness at the nerve. For this reason we did not think it made sense to explore pudendal nerve blocks but rather to consider medication changes.

When Sheyoume started physical therapy she was taking 200 mg of gabapentin and tramadol as needed. Research has shown that neuromodulating medications such as gabapentin (neurontin) and pregabalin (Lyrica) and SNRIs such as Cymbalta and Effexor can help reduce neuropathic pain. Sheyoume was on a low does of gabapentin and was not taking an SNRI when we began therapy. We discussed that she return to her physician and consider altering the medications. He agreed she could take another approach and prescribed Lyrica and Effexor.

Sheyoume came to physical therapy 7 times between May and July. Each week her symptoms lessened, we attribute the change to adding in external manual therapy and adjusting her medications. By August, Sheyoume was back to exercising every day, she could have intercourse without pain, and sitting was no longer an issue.  We emailed this week, Sheyoume has weaned off the Effexor and is almost completely weaned off of Lyrica. Typically physical therapy for pudendal neuralgia takes more than 7 visits. However, Sheyoume did have months of therapy prior to starting with us at PHRC and this therapy resolved issues such as pelvic floor dysfunction, allowing us to focus on what had not yet been addressed.

Here is what Sheyoume had to say about her treatment:

“Hi Stephanie,

Long time, no see! But for all good reasons! And I hope your new year is off to a great start too. I’m so happy to report I’m feeling wonderful- no pain, and back to my full and busy life!  I’m driving all over, exercising (training for a half-marathon!) and just opened in a new play this weekend- a comedy that has been so much fun!

I wanted to send you the letter I posted on Pudendal Hope a few months back (below) to give my fellow PN sufferers encouragement that this horrible condition can get better- and that you were a major part of my recovery journey!! I’m so delighted to see from your newsletter the growth if your centers throughout the country- you all are absolutely changing lives and I could not be more grateful for all you did for me.

Words can’t express my gratitude to you, Stephanie- You truly were a Godsend.”

Hi Everyone,

This is my first post. But I promised myself that if I ever recovered from my horrible PN symptoms I would share what helped me on this forum because this was truly my main source of information in those agonizing early days. I thank God Pudendal Hope was available for me. A year ago I was basically bedridden and in despair that I would ever have my life back as I knew it. I was weak,underweight, and in terrible pain all the time. I could not sit, drive, exercise or socialize. An ice pack was my constant companion 24/7. I truly felt life was not worth living. I had dragged myself in excruciating pain to a number of experienced pelvic therapists and spent many months in therapy, but it was not until I saw Stephanie Prendergast in Los Angeles at the Pelvic Health & Rehabilitation Center that my recovery really began. Weekly sessions with Stephanie and a home exercise program soon enabled me to resume my regular yoga practice. A small dose of Lyrica and Effexor ( which also treats nerve pain) were very effective in reducing pain. I also had several sessions with a professional hypnotist who taught me how I could myself reduce my pain wherever and whenever. Slowly, over a few months, I knew I was getting better. Daily walks, a nightly swim and jacuzzi soak complimented my regimen. In a period of 6 months I had moved from having to recline in the back seat of my car while my husband drove me to see Stephanie in LA ( a two hour drive) to calling her last week to say I didn’t need to come in for a session because I was pain free and busy living my life. I know everyone has their individual situation and more invasive procedures are sometimes needed. But please, please consider seeing Stephanie or any of her well qualified practitioners at one of her many centers. It was life changing for me and praying it will be for you too.

All my very best in your healing journey,

Sheyoume

Take Home Points from Sheyoume:

  • “I really believe the Lyrica and Effexor combination was a huge part of my recovery. Lyrica was life changing as far as the severe side effects I experienced from gabapentin. I was an absolute zombie on gabapentin but so much more functional on Lyrica. These drugs treat nerve pain very well and should really be utilized/explored in my opinion”.
  • “When I think I could not SIT without excruciating pain before I started seeing you and finding the right “cocktail: pelvic floor PT, Effexor, Lyrica”.
  • Especially on the ‘bad’ days, people need to remember bodies heal and theirs will too

Take Home Points from PHRC

  • Nerves heal differently than people often expect
  • Mechanical triggers can lead to nerve hypersensitivity, it is important to treat the triggers
  • When the trigger are removed nerve hypersensitivity may persist, pain management physicians can offer medications and/or procedures to assist with eliminating/reducing hypersensitivity
  • What works for one person may not work for another, everyone is different, a team approach with solid clinical reasoning is the most effective approach
  • Check out our Pudendal Neuralgia Archives for past posts on Pudendal Neuralgia and Pudendal Nerve Entrapment and our book, Pelvic Pain Explained

If you suspect you have pudendal neuralgia and would like an evaluation at the Pelvic Health and Rehabilitation Center we have nine locations in the United States: San Francisco, Berkeley, Los Gatos, Walnut Creek, Los Angeles, and Westlake Village, CA and Lexington and Natick, MA and Bedford, NH.

We hope you found her Sheyoume’s story and the information in this post helpful!

 

Comments

  1. So happy to hear someone got better from this awful condition! I’ve suffered from PN since 2011.. sure wish I had a clinic near me to go to. I live in Astoria, Oregon.

    1. Laura, I live in Eugene now and tried many different meds, therapies, nerve blocks, and Botox with minimal, temporary relief. After several consultation between Phoenix AZ, the Bay Area CA, and Bellevue WA, I went to Dr Heros at Spinal Diagnostics in Tualatin OR and did a trial of Dorsal Root Ganglion (DRG) neuromodulator. It was successful and I’ve had the permanent implant for 3 months now. The nerve pain is 90% gone. Amazing. I still have muscle issues but it’s manageable. Hope this helps. Lisa
      PS pelvic rehab and pain in Berkeley was a big help through some of my worst days.

  2. Thank you for this encouraging post! It took me 6 years to find someone to help me. I found Dr. Colleen Fitzgerald in Maywood, IL and I see a pelvic floor physical therapist I am finally getting my life back. Hypertonic pelvic floor with rectal pain and labia pain. It is a slow process for me, but I’m making progress.
    Stephanie, have you had patients recover who have had PFD with PN years before finding therapy and treatment?
    Thank you for all you do to educate and treat those who suffer from this debilitating condition.
    DM

  3. As always , great read , very informative and evidence based article
    Thank you both,

  4. Sheyoume’s story is so inspiring, thank you Stephanie for sharing it!
    I left a message on your website yesterday, hope to get a reply.
    Mainly, I’d like to know if you can recommend a therapist in the Toronto area?
    Many thanks!

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