What is your diagnosis?

There are many causes of pelvic pain. Do you know yours?

Have you been diagnosed by a specialist? Several specialists?

Have you ruled out gynecological pain caused by such problems as endometriosis, fibroids, cysts?

Or do you have urinary symptoms, such as frequency, urgency, or pain with urination? Have you seen a urologist?

Depending on your symptoms and the type of doctor you have been seeing, you may have been diagnosed with a number of conditions. It seems like pelvic pain is rarely one thing. Many of us have multiple diagnoses. Women may experience vulvodynia, which is pain on the surface of the vulva, labia or entrance to the vagina. Men and women can suffer from interstitial cystitis, which is pain in the bladder and urinary system.

Sometime the start of your symptoms can be linked to a specific event, such as a fall, or difficult childbirth. Some of us have buttock or rectal pain, often the result of nerve impingement from a fall or other injury.

Have you been diagnosed with pudendal neuralgia or pudendal nerve entrapment?

Have you tried everything, yet you are still in pain? By “everything” I mean every non-invasive treatment out there — from medication to physical therapy to nerve blocks and botox injections.

Medications I have tried include:

Neurontin, aka Gabapentin

Lyrica

Valium and other muscle relaxers

Physical Therapy

Suppositories – there are pharmacists who will custom make vaginal suppositories for pelvic pain.. I have tried ones with valium and with baclofen and gabapentin. I noticed some relief, but not enough to justify the hassle or cost.

Botox

By botox, I don’t mean the cosmetic treatment for wrinkles in your face, but the botox injected into the pelvic floor with the goal of loosening tight muscles that may be impinging on nerves and causing pain. The goal was release of “trigger points” within the muscles

Surgery

Are you at the point where surgery looks like the next option? I know what that is like. I went 17 years in pain, trying the next treatment, and the next, until only the more invasive treatments were left. Finally, I began researching PNE surgery. Even though success rates were extremely low, and the best outcomes were questionable, I needed something to hope for. 

We are in a pioneering time with pelvic nerve surgery, so it is to be expected that there is a lot of controversy. However, I believe the main reason is that the recovery rates are so low. Less than one-third of surgeries prove successful, and many patients experience more pain and lower quality of life after surgery.

I have had three PNE surgeries, called pudendal neurolysis. The goal of these surgeries is the “release” of the pudendal nerve and/or its branches, where it has become entrapped deep within the pelvis.

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