One of our readers (who shall remain anonymous) asked if we could look into a topic: “Pudendal nerve pain-when is it endo and when is it not? Or is there even a way to know?”  So, here I go off to learn things and hopefully share a bit of that newfound knowledge.  And since this blog entry is Endometriosis-related, I’m going to keep the anatomy female (although men have a pudendal nerve and can also suffer from these symptoms).

Where’s the Pudendal Nerve?

The pudendal nerve is located back by the tailbone, and extends along the pelvic floor and around the pelvis, toward the rectal, gluteal, and clitoris areas.  There’s two: a right and a left pudendal nerve.  One or both pudendal nerves may cause issues, which we’ll get into right now!

Symptoms of Pudendal Nerve Pain or Issues

I’ve run into two types of pudendal nerve pain: pudendal neuropathy/neuralgia and pudendal nerve entrapment.  Depending on what is causing the pudendal nerve pain or issues, symptoms may include:

• Anal incontinence
• A sense of full bladder or bowel
• Bladder incontinence
• Chronic constipation
• Groin pain (vulva, labia, clitoris, and/or perineum)
• Pain during or after a bowel movement
• Pain during or after sex
• Pain in or around buttocks, legs, and feet
• Pain while sitting
• Rectal/anus pain
• Sexual dysfunction
• Urethra pain

The pain may feel like any or all of the following: aching, burning, like you’re being jabbed with a hot poker, increased sensitivity, numbness, stabbing/lightning pain, and twisting/pinching.  The skin in the areas of the genitals or anus can be incredibly hypersensitive, too.

These symptoms may start out small and unnoticeable (or even as a pins and needles sensation, like when your foot falls asleep), but may develop over time into a chronic condition.  Unfortunately, sometimes it’s only when the symptoms are unbearable that people seek the advice of their healthcare providers.

Causes of Pudendal Nerve Issues

There are a lot of theories about what may cause pudendal neuropathy, including inflammation or autoimmune illnesses.  (Sound familiar…?)  Tension on the nerve or nerve entrapment may also cause the nerve pain or other symptoms.  Surgeries, prolonged sitting (compressing the nerve), trauma or injury, and even childbirth may also be a cause.  Another theory is simply that you’re predisposed to pudendal neuropathy. Often times, pudendal neuralgia may be misdiagnosed as pelvic floor dysfunction because they are so similar, or even go hand-in-hand with one another.

And *ding ding ding*, according to the Health Organization for Pudendal Education, “women with severe endometriosis may develop scarring or inflammation if the endometriosis settles on the nerve.”  (We’ll get to more on that later…)

I have Pain; Now What?

Awww, testing! Let it all begin!  Likely, a detailed history of symptoms will be discussed, as well as any family and personal medical history.  Some physicians may conduct a physical examination as well.  And, there’s these (in no special order):

1. Pudendal Block Test: the pudendal nerve is injected with an anesthetic, analgesic, or a steroid either transvaginally or through the perineum tissue.  If the symptoms disappear, it may indicate that there’s nerve entrapment or that your pudendal nerve is a likely source of your agony.  Medscape.com offers a horrific image of what a transvaginal pudendal nerve block injection looks like…(I’m cringing).
2. Pudendal Motor Latency Test: may determine nerve damage by measuring the nerve’s motor function.
3. Pudendal Nerve MRI: an MRI of the nerve may be able to find anatomical anomalies with the nerve.
4. Ultrasound of the pelvic floor muscles: may help reveal any issues with the pelvic floor muscles.
5. Ultrasound of the sacroiliac joints: may reveal trauma to the tailbone and rule out other causes of pain.
6. Lifestyle changes in diet and exercise may help alleviate symptoms.  Yoga may help ease pelvic tension, too.
7. Pelvic floor therapy may also help lessen tension in the nerves and loosen up things, which may make you feel better.
8. Some people receive relief with a TENS unit.
9. Acupuncture may offer some relief from pudendal nerve pain.
10. And if all else fails: everyone’s favorite…surgery – pudendal nerve decompression surgery.

But…what about Endometriosis and the pudendal nerve?  Now that we know what the pudendal nerve does and what symptoms of pudendal nerve issues may feel like, as well as other causes of the pain, let’s look deeper into Endo and the pudendal nerve.

Endometriosis and the Pudendal Nerve

Let me start this off by saying: If you have these symptoms, you may have:

1. Pudendal neuropathy/neuralgia or pudendal nerve entrapment…
2. Endometriosis on, or nearby, your pudendal nerve…
3. Something completely unrelated…

What?!?  The one thing I want you go get out of reading all of this is: TALK TO YOUR PHYSICIAN.  Push for the healthcare you deserve.  Ask questions.  Get second, third, or fourth opinions. Push, push, push.  Do not feel brushed-off.  It may, or may not be, endometriosis-related.  But you have to start asking questions first!  And, unfortunately, the only way to truly know if Endometriosis is affecting your pudendal nerve is, you guessed it: exploratory surgery by someone who knows what they’re looking for…and knows how best to handle it.

If the pudendal nerve is affected by Endometriosis, any or all of the above-symptoms can occur.   Unfortunately, it is often misdiagnosed as pelvic floor disorders, musculoskeletal disorders, or interstitial cystitis.  AND add to that the fact that you (may) already have an Endometriosis diagnosis – and these “new” symptoms are just getting brushed off as part of your already-diagnosed Endometriosis. According to several doctor’s webpages, the treatment of Endometriosis on nerves cannot be conducted like a regular excision surgery (scoop and remove).  Extreme skill and care must be practice since the surgeries are so complex and the nerves are so teeny-tiny.

In a 2010 letter to the editor, physicians presented a case study of a 32-year-old woman who complained of pelvic pain, constipation, painful periods, and pain around her anus and genitals, which extended down her right leg.  Pain medications weren’t helping.  So, after undergoing some tests and imaging studies found they that she had a nodule along her recto-vaginal septum, as well as suffered from hypersensitivity in some pelvic areas, and a decreased sensitivity in others.  It was suspected that whatever was going on involved her right pudendal nerve.  Investigative laparoscopic surgery was performed and they discovered Endometriosis had infiltrated her Pouch of Douglas, the right side of her parametrium (tissue between cervix and bladder), as well as other areas inside her pelvis, and her recto-sigmoid colon.  Of interest, “[t]he disease reached and compressed the parietal fascia covering the right sacral plexus and sacral roots at the level of S1–S3 and the right pudendal nerve and vessels at the entrance into Alcock’s canal.”  Yep…pudendal nerve and vessels…The “disease” had compressed her nerves.  They excised the Endometriosis that they could, resected some of her bowel, and restored her bits and pieces.  Surgery was 3.5 hours and she endured a seven-day hospital stay.  She was given six months of GnRH-analogue therapy, followed by a continuous birth control pill.  Even a year later, she was “very satisfied” with her quality of life.  The authors stated:

“Endometriosis of somatic nerves, and particularly of the pudendal nerve, is a rare condition that may impair visceral and motor functions and is associated with severe drug-resistant pain.”  (I, of course, added the bold font for a bit of emphasis.)

A 2010 study (which mirrors much of the language of the aforementioned letter to the editor, leading me to believe they later published an actual study) also discusses Endometriosis involving the somatic nerves, including the pudendal nerve.  It discusses how the nerves may actually be infiltrated with Endometriosis, or simply compressed by the presence of the disease and/or inflammation, how those lesions can be removed (often sparing the nerves and vessels), and how such excision of the disease may lead to symptom relief.

In 2011, a Swiss study was published about 213 patients seen between 2004 and 2010 for treatment of sciatica or pudendal/gluteal pain.  All of them had no known reason for the pain and all had spinal cord issues previously ruled out.  Anyone who had sacral plexus damage due to injury was excluded from the study.  Data was taken about motor skill dysfunctions (hips, knees, legs) due to the symptoms, as well as bowel and bladder issues.  Each patient underwent a laparoscopy, and the following may be interesting for you to read:

• 27 patients had an isolated endometrial cyst of the sciatic nerve with no other indications of Endometriosis anywhere;
• 148 patients had deep-infiltrating Endometriosis which affected their sacral plexus with inflammation, which included the S2-S4 sacral nerve roots (also where the pudendal nerve sprouts from); and,
• 37 patients had nerve entrapment due to Endometriosis of the sacral plexus

I didn’t find a lot of studies relating directly to the pudendal nerve and Endometriosis…

Wrapping it All Up

Well, today I learned a lot about the pudendal nerve and the pain associated with pudendal neuralgia and pudendal nerve entrapment.  It can be one hell of a painful mess!  And…it can be caused by many different things.  But how do YOU know if the pain that you’re feeling is Endometriosis symptoms, Endometriosis influencing your nerves, pudendal neuralgia, pudendal nerve entrapment, or something completely different?

Simple…well, not so simple.  But Step One is simple:  pick up the phone.

Track your symptoms and pain.  Make a doctor’s appointment.  Have full, lengthy conversations.  It may be a long road before you’re able to figure out answers, but there are steps to rule out concerns…and steps to confirm suspicions.

And remain calm. ❤

If you’ve had procedures regarding pudendal nerve neuropathy/neuralgia or entrapment, and want to share your experiences, please let us know!  And was any of it related to your Endometriosis?

(Updated March 18, 2019)

Resources:

Current Bladder Dysfunction Reports – (2012, Article) Voiding Dysfunction Associated with Pudendal Nerve Entrapment

Endometriosis Australia

European Journal of Obstetrics & Gynecology and Reproductive Biology – (2010, Letter to Editor)

Fertility & Sterility – (2011, Article) Laparoscopic Therapy for Endometriosis and Vascular Entrapment of Sacral Plexus

Healthline.com

Health Organization for Pudendal Education – Pudendal Neuralgia Symptoms

Hirslanden Private Hospital Group – Refractory Endometriosis

Medscape.com

Merriam-Webster.com

Nezhat.org – Nerve Damage Caused by Endometriosis

OB/GYN.net – Taking the Shame Out of Pudendal Neuralgia

Radiopaedia.com

Surgical and Radiologic Anatomy – (2010, Article) Laparoscopic Nerve-Sparing Transperitoneal Approach for Endometriosis Infiltrating the Pelvic Wall and Somatic Nerves: Anatomical Considerations and Surgical Technique

Vital Health Endometriosis Center

Women’s Health and Research Institute of Australia – Pudendal Neuralgia

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa