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."

"Shame on You": A Disasterous Injection by Dr. Hah

A previous post had me hopeful that the Stanford Pain specialist would be of help. The "summary" of how it went is conveyed in a letter I wrote her after the injection. On my computer the document is titled "Dr. Hah Shame On You." (My last post I wrote has an update on what the MRI imaging showed). I did not send this letter (but did file a grievance through my insurance company.)

April 5, 2014

Dear Dr. Hah,

I writing because I don’t think we will have enough time to talk about this when we next meet. I find myself very upset in the many weeks since the injection.

To give you some context, I came to you with positive expectations. I also know that any given doctor will not “fix” my pain. I do expect however, as I expressed at the very beginning of my first appointment with you, to have a doctor who is engaged in my care.

From my point of view, the lead up to and the day of the actual injection were disastrous:

You did not reply to Stephanie Prendergrast’s communications regarding the location of the injection you planned. 

You asked that I have the UCSF and Stanford MRI imaging as a pre-requisite to the injection to give you more information. On the injection day, you had neither read the reports, nor looked at the MRI images, nor did you delay the injection until you could get hard-copy reports or a re-read by a radiologist. Instead you literally said, “Well, it doesn’t matter anyway.” When I asked you why, then, had I had them done, you said that they might be helpful in the future and then went ahead and did the same injection that had failed so many times in the past. Why?

As a patient, I signed forms stating that I understood that negative health effects could result from the MRIs, the imaging used during the procedure, and the injection. I would not have exposed myself to the possibility of injury to my nerves or to radiation for a useless procedure.

Next, I don’t actually know if this is something I can criticize as I don’t have enough information but I will mention it. During the injection procedure while doing the electrical conductivity testing, you asked if you were in the right place. I described where I felt the electricity, but that it was not hitting my vestibule. You said this was good enough. 

Right before the actual injection, you asked me what we were doing. I didn’t even understand the question at first until you gave me the choice of it being therapeutic or diagnostic. I thought to myself (and perhaps said out loud?) that this was a decision that should have been made already (not when I am about to have the injection), and that it shouldn’t be my call alone.  Perhaps you meant to be inclusive, but instead it undermined my confidence in your commitment to making a decision on my behalf. In retrospect, I should have called it off as soon as I understood that the MRI imaging information wasn’t going to be used. But there was a large staff, I was already prepped, and I was undressed. I wimped. 

Finally, when I discovered after the fact that Stanford imaging had not completed two out of the three MRIs that you ordered, you said that it didn’t matter as those were duplicate images of the UCSF images. Why order them then?

I had a lot of trouble with my insurance company and it boiled down you having used redundant CPT codes for the MRIs. According to the insurance company, they called you and you did not return the call. It was upsetting to spend nine weeks to get approval when a simple phone call from you would have resolved the issue of coverage.

Although I know you are super busy and have to handle both research and patient care, my take away is that my treatment didn’t matter enough to you to act with follow-through. 

I know that the success of any given injection is not a “sure thing”, but it seems that you could have taken care to increase the likelihood of its success. When you said you would use the MRI imaging to guide the placement of the injection, I was grateful because you were taking a different approach from previous efforts. And then you gave me the exact same injection without using the results of the MRI. Why waste our valuable time, Stanford’s resources, my money, my insurance provider’s money, and my confidence and trust?

I consider the care you gave me to be negligent.

Thank you,

Melissa Wilson

Update April 12, 2012

I fought the bill on this procedure for many months and was ultimately successful. They waived the charges. 

No comments:

Post a Comment