The story of Roberta, 48. Years and years of hope and futile treatment. Then, finally, the meeting with a “special” osteopath. And, finally, rebirth
Roberta, your story begins very early, at age 24. Do you remember how the first signs of what would become a decades-long nightmare appeared?
It started almost trivially: the first discomfort would appear a day or two after intercourse. I decided to go to the gynecologist, but the answer was always the same: a urinoculture, if that was okay, or antibiotics prescribed “by default,” often without even a culture test. For years, various specialists dismissed everything as simple post-coital bacterial infections. Meanwhile, however, the burning became a constant, day and night
At that point began what you describe as a true “pilgrimage.” How did you feel about not finding answers despite constant consultations?
It was wearisome. At age 40, I found myself knocking tearfully on the doors of those who called themselves the leading experts in vulvodinia. The diagnosis finally came, but not the solution. I spent huge amounts of money on drugs, supplements and remedies of all kinds. After six months without results, a doctor came to tell me that, at that point, I could only go to Lourdes. I felt abandoned. I tried “hope trips” out of the region, tried therapeutic cannabis, radiofrequency… but nothing changed
There was a time when the situation deteriorated further, becoming disabling. What was your daily life like at that time?
I no longer had a life. I had to stop working. I was walking around with a donut to be able to sit up; the pain was uninterrupted. To get by, between emergency room visits, I was taking massive dosages of gabapentin and amitriptyline. I was constantly “reeling” from the side effects, but the pain remained there, still. A pelvic floor physiotherapist later discovered that there was also pudendal nerve impairment. The picture was complete, but it was the worst possible scenario
Then, the turning point came from an unexpected direction: osteopathy and dentistry.
My husband proposed that I meet Professor Ernesto Di Pietro as a last resort; we had heard about him in the various medical offices we had attended. “What does osteopathy have to do with vulvodinia?”, I asked myself. But I had nothing to lose. When I met him, I was struck by his humanity. He told me something that sounded crazy: he could not help me until I extracted my wisdom teeth and put on braces. My dentist tried to talk me out of it, but I felt I had to trust him. I extracted the teeth and, amazingly, after only a month I started to feel better. After years of darkness, I caught a glimpse of light. I followed a course of sessions (one a month, initially, for ten times; then more spaced out for maintenance) and orthodontic treatment for two years. I finished the path with the teeth just these days
In this journey of rebirth, however, you faced another terrible challenge: breast cancer. Yet, you make a comparison that leaves one speechless.
Yes, I faced chemo, surgery, and radiation. Today I am fine, but I say this with conviction: the cancer journey was “almost nothing” compared to the years I spent with vulvodinia. Cancer is a recognized, visible disease. The vulvodinia, on the other hand, destroys you psychologically because you are not believed. You hear that you are stressed, that you have to go on vacation, while inside you are going crazy with pain
Roberta, what do you feel like saying today to those who are going through the same ordeal?
To not stop looking for people who have, in addition to competence, empathy and humanity. I will never stop thanking Professor Di Pietro and his team: they were “magic” for me. They gave me back my dignity as a patient and, finally, my life.