OpenHealth Q&A

Seeking Guidance for My Wife's Pudendal Neuralgia and Traction Relief Discovery

Hello Reddit Medical Community, my wife and I find ourselves in a state of urgency, seeking guidance as her condition has proven to be a puzzle to those who are meant to help her. The fear that I may lose her if her pain is not managed is ever-present. **Quick Summary:** 34 years old, female, 5 feet 8 inches, 210 pounds, Caucasian. She has suffered from severe right-sided Pudendal Neuralgia (PN) since March 2024. Despite following a pain management regimen, including home ketamine and various interventions, she experiences only fleeting relief. Recently, we discovered that applying traction to her right leg at an angle of roughly 15-25 degrees alleviates all her PN symptoms temporarily. However, neither our primary pain management team nor another specialist at a regional university hospital knows how to proceed with this finding. Who should we consult? What should we advocate for? **Medical History:** Before 2019, she was suspected to have mild Hashimoto’s Thyroiditis along with anxiety, depression, and mild IBS, as well as an ovarian cyst. - **June 2020:** Underwent a neurectomy on her right foot after a year of assuming it was a stress fracture healing improperly. - **October 2020:** Had a second neurectomy for another neuroma, resulting in Complex Regional Pain Syndrome (CRPS). A Spinal Cord Stimulator (SCS) was implanted in May 2021. - **June 2022:** Diagnosed with Long-COVID accompanied by symptoms resembling ME/CFS, leaving her unable to work. - **May 2023:** Total hysterectomy was performed to remove a large fibroid causing severe abdominal discomfort. - **November 2023:** Had a lipomatous neoplasm removed from her right axilla, which also caused significant arm pain. - **December 2023:** Developed CRPS in her right arm post-surgery. A second SCS was inserted in September 2024. - **February 2024:** Experienced worsening abdominal pain similar to that from the earlier fibroid, with negative imaging studies leading to suspicion of adhesions. - **October 2024:** An exploratory laparotomy did not find any adhesions, leading to a therapeutic right oophorectomy with no pain relief, followed by a referral to Pain Medicine for suspected PN. - **October 2024:** Received a pudendal nerve block resulting in almost complete pain relief for about six weeks, before symptoms returned. Official diagnosis of PN made. - **March 2025:** Required a cholecystectomy for symptomatic biliary dyskinesia. **Symptom Overview:** Due to the variety of issues my wife faces, I will focus on her PN symptoms. The pain began as a sharp tugging near her appendix, escalating into an intolerable sensation during vaginal penetration. Eventually, she developed severe neuropathic pain affecting her right vaginal side, labia, perineum, anal sphincter, and lower right glute. This pain can peak at 10 out of 10, eclipsing her worst CRPS episodes. The PN induces spasms in her urethra, anal sphincter, and colon, severely impacting her gastrointestinal motility. Before experiencing PN, she had daily bowel movements. Currently, despite fiber and Miralax, she deals with small, loose stools over several days, leading to abdominal tenderness and bloating, culminating in a large, hard stool. Both urination and defecation are intensely painful. Additionally, she often suffers from significant nausea due to decreased GI motility, and sitting for over 30 minutes—despite high-quality pelvic cushions—intensifies her PN symptoms for days. The only position she can maintain for an extended time is reclining or laying down. **Treatment Attempts:** Since PN was diagnosed, she has undergone several pudendal nerve blocks that offer about six weeks of near-total pain relief each time. Each block allows her to tolerate palpation in sensitive areas, vaginal penetration (though not full intimacy), and regular bowel movements without pain or nausea prompts. Strikingly, after each pudendal nerve block, she quickly passes multiple days’ worth of stool. Interventions including Pulsed Radiofrequency Ablation, Cryoneurolysis, and ketamine infusions haven’t been effective. Although she has seen a pelvic floor PT, gains have been minimal. Currently, her medications include: - Pregabalin - Duloxetine - Cyclobenzaprine - Tizanidine - Ketamine - Turmeric - Nortriptyline (discontinued) Ketamine, in both intranasal and oral forms, has been a critical element of managing her unbearable pain. No other treatment regimen, whether prescription or over-the-counter, has matched the relief provided by ketamine. Beyond nerve blocks and ketamine, the only other intervention delivering measurable pain relief is targeted massage therapy, particularly for her right glute and nearby muscles. **Seeking Assistance:** In an unexpected finding during massage therapy, we observed that elevating her rib cage from her hips resolved her pain as long as applied pressure continued. Remarkably, we found that maintaining traction on her right leg in a supine position also eradicates her PN discomfort. This effect is reproducible whether her pain is active or not. She can achieve similar relief at times by lying on a back extension machine where her upper body hangs freely. We also noticed that traction during urination completely alleviates any dyuria. However, our inquiry about whether this approach could apply to the bathroom experience was outright refused. This discovery suggests that her PN may not stem from nerve damage or irritation but instead might be related to some form of entrapment or compression. We brought this matter up with her Pain Medicine specialists, but they appeared perplexed by the information. Attempts to get insight from the Pain Clinic at the state university also yielded no concrete answers. One complication is that, due to having two SCS devices, MRI options are limited since their safety in such cases has not been confirmed. We asked our primary care physician for a referral to a physical therapist to investigate possible SI joint dysfunction, an issue she does have. We are also attempting to connect with another Pain Clinic where specialists are double board-certified in both Pain Medicine and Physiatry, unlike her current care team. **Any advice or recommendations for specialists or clinics that could provide us with assistance would be incredibly appreciated!**

Answers (1)

8/16/2025, 5:41:12 PM

OpenHealth AI

I'm truly sorry to hear about the challenges your wife is facing with Pudendal Neuralgia (PN) and the distress it brings to both of you. It’s commendable that you’re seeking solutions and advocating for her care. I'll guide you through the next steps based on the information you've provided.

Main Points:

1. Traction Relief Discovery: The temporary relief from traction suggests a possible compressive issue rather than straightforward nerve damage.
2. Need for Specialized Care: Finding healthcare providers experienced in complex pain issues and pelvic conditions is crucial.
3. Importance of Advocacy: Continue advocating for investigations that align with her symptomatology.

Explanation:

Pudendal Neuralgia can have multifactorial causes, including nerve entrapment, muscle tension, and pelvic floor dysfunction. The traction alleviating her pain indicates that there might be physical elements contributing to her symptoms. Given the complexity of her case, it is essential to seek out specialists who can explore these avenues, particularly those familiar with pelvic pain syndromes.

Next Steps:

1. Explore Pelvic Pain Specialists: Look for pain management clinics that have experience with pelvic pain, nerve entrapment syndromes, and are proficient in physical medicine and rehabilitation (physiatry). Local academic medical centers that specialize in pain management or pelvic health might have valuable resources.

2. Consult with a Physiotherapist: Since you mentioned possible SI joint dysfunction, finding a physical therapist specializing in pelvic floor therapy could provide targeted treatments. They can assess her biomechanics and teach her strategies to manage pain through specific exercises.

3. Investigate Nerve Conduction Studies: If not already done, consider asking for evaluations on nerve conduction to assess the behavior of the pudendal nerve. This can help distinguish between nerve damage and possible entrapment.

4. Document Everything: Keep a detailed symptom diary alongside a note of when traction provides relief. This information could guide specialists during consultations to understand the variance in her symptoms.

5. Seek Alternative Opinions: If the current specialists are not addressing your findings, do not hesitate to seek a second opinion, preferably from those who have an interdisciplinary approach to pain management in complex cases.

6. Consider Research Studies: Investigate clinical trials focused on Pudendal Neuralgia or related conditions. Engaging in research could provide access to advanced treatments and therapies.

By pursuing these options, you will align with medical professionals who can appreciate the complexities of her condition. Remember, your advocacy and close attention to her symptoms are powerful tools in navigating her care. Please keep me updated on her progress or if you need further information.