Edit: I WAS CURED AFTER 22 YEARS! I had a vestibulectomy Dec. 2016. The recovery was easier for me than having sex ever was. It took about 5 weeks. I have included my recovery photos. Look for the blogpost "I'm Cured!" and "My Vestibulectomy".

I’m a great woman with a pissed-off vulva. I have “primary vestibulitis." Most people are uncomfortable discussing their genital pain in public. My hope is that my obsession to find help for myself will make your experience shorter, easier, and less painful. P.S. Recently "vestibulitis" has been renamed to "vestibulodynia."

Pelvic Congestion Syndrome

Pelvic Congestion Syndrome or Pelvic Venous Congestion Syndrome is not a "go-to" diagnosis for pelvic pain (including vestibulodynia), but it can mimic many of the symptoms. It is having varicose-like veins in the pelvis that are causing pelvic pain. The kinds of doctor one might consult would be an interventional radiologist, a physiatrist or physical medicine doctor who has a pelvic specialty, a vascular doctor, or maybe a urogynecologist (this would be the kind of doctor easiest to find.)

From this website: Pelvic Venous Congestion Syndrome

For some women, the cause of their pelvic pain is a condition known as pelvic congestion syndrome (PCS). It may go undiagnosed simply because physicians are often unfamiliar with it or fail to look for it.

  • Pelvic pain or aching around the pelvis and lower abdomen 
  • Dragging sensation or pain in the pelvis 
  • Feeling of fullness in the legs 
  • Worsening of stress incontinence 
  • Worsening in the symptoms associated with irritable bowel syndrome 
Pain is usually commonest symptom and present for over 6 months duration. The pain is usually on one side but can affect both sides. The pain is worse on standing, lifting, when you are tired, during pregnancy and during or after sexual intercourse. The veins are also affected by the menstrual cycle/hormones and therefore the pain can increase during the time of menstruation. The pain usually is improved by lying down.

Causes of pelvic congestion syndrome 

Pelvic congestion syndrome occurs when varicose veins develop around the ovaries, similar to varicose veins that occur in the legs. Then:
The valves in the veins no longer function normally.
This causes blood to back up.
The veins become engorged or “congested,” which can be very painful.

Treatment for pelvic congestion syndrome 

Treatments for PCS include:
Hormonal medications
Embolization, a minimally invasive catheter procedure to “plug” the varicose vein

The term is easily google-able. It is something you consider when nothing else seems to make sense.