dealing with pain and dysfunction



Letter to the Insurance Folks.

Wow, two updates in one day. Kickass.

So, I’ve had quite the adventure trying to get a biofeedback machine covered by my insurance. With pelvic floor dysfunction, there’s not much I can do other than biofeedback, but it’s still considered an “alternative treatment”.

…Even though it’s the only one. I will never understand how these people think. I spent some time with my mother over spring break, and we put together a letter that outlined the previous care I had received for my vulvodynia. My mother hadn’t even heard of most of the doctors on there, and had no idea what I had been through to get a diagnosis. It was great to be able to talk to her about it. Anyway, here’s the letter. Most of the doctors I have seen are not on there, as many of them were incredibly repetitive (and a few of them I just plain forgot, seeing as how once they got out “it’s all in your he–” I was dressed and out the door).

Dear _______,

Per your attached request, the purpose of this communication is to provide additional information about previous treatments and physician visits for my daughter, Lindsey ______________. This is regarding her recurring pelvic pain issues, which have thus far not been successfully addressed or resolved by various doctors.

Roberta Frost (?), Planned Parenthood, ___________, MI. Ms. Frost (?), as a Planned Parenthood practitioner, was unable to prescribe a tricyclic antidepressant, and therefore recommended Lindsey see a gynecologist in a private practice. (See below regarding additional information about tricyclic antidepressants.)

Dawn Applegate, DayOne, ___________, MI. Dr. Applegate did not prescribe anything and told Lindsey “the pain was all in her head.” This was clearly ineffective, although it is noted that Lindsey was also seeing a therapist at the time. The therapist has made no mention of the pain being in Lindsey’s head.

Rose Lovio, DayOne, _____________, MI. Dr. Lovio did not prescribe anything and told Lindsey “the pain was all in her head.” This was clearly ineffective, although it is noted that Lindsey was also seeing a therapist at the time. The therapist has made no mention of the pain being in Lindsey’s head.

Nadine Weisser, ____________, MI. Dr. Weisser did not prescribe anything and told Lindsey “the pain was all in her head.” This was clearly ineffective, although it is noted that Lindsey was also seeing a therapist at the time. The therapist has made no mention of the pain being in Lindsey’s head.

Dr. Roxanne Cornelius, Pro-Med Physicians Family Practice, ___________, MI. Dr. Cornelius recommended that Lindsey “live her life at the foot of the cross” and not engage in sexual activity or any other activity that could cause pain (bikeriding, walking long distances, sitting for long periods of time). Please note Dr. Cornelius is no longer employed by Pro-Med.

Dr. Laura Kooy, Pro-Med Physicians Family Practice, ___________, MI. Dr. Kooy ordered both abdominal and vaginal ultrasounds because she believed that the pain could be caused by a retroverted uterus. This was incorrect.

Rachel Yankama, _____________, MI. Dr. Yankama prescribed estrogen cream, which was ineffective in alleviating pelvic pain. This was followed by 2% Lidocaine topical cream, which was also ineffective. This was followed by Elavil, a tricyclic antidepressant, which is used to treat overactive nerves in the pelvic region. This was ineffective and made Lindsey overly tired while not addressing the pain.

Kenneth Levey, New York Pelvic Pain, NYU. Dr. Levey, a trained specialist in pelvic plain, has diagnosed Lindsey with vulvodynia. Please note that vulvodynia is a real and common condition. A Harvard prevalence study shows that as many six million American women suffer from this condition. Almost 60% of patients report visiting three or more health care providers to obtain a diagnosis and 40% remain undiagnosed [Harlow BL, Stewart EG, Journal of the American Medical Women’s Association, 2003 Spring 58(2):82-88]. The National Institutes of Health recently launched the first ever national vulvodynia awareness campaign in order to educate health care providers about the condition so that other women can be more readily diagnosed and properly treated for this condition. Dr. Levey ordered pelvic floor physical therapy twice weekly (see below for additional information). Dr. Levey also prescribed a combination topical cream of aspirin and lidocaine which has been minimally effective.

Christine Feely, Cayuga Medical Physical Therapy. Ms. Feely is the only pelvic floor physical therapist in the Ithaca area where Lindsey resides. As such, Ms. Feely’s calendar is extremely booked and does not offer available appointments at times Lindsey is not attending classes. As prescribed, Lindsey is supposed to attend physical therapy twice weekly. Unfortunately, Lindsey does not have transportation and has to take a cab to and from the appointments, which is both costly and time consuming. Moreover, her schedule prevents her from being able to attend appointments.

We are requesting that NGS reimburse us for the purchase of a home use biofeedback machine and accompanying software. Ms. Feely will provide additional information about these products. It is believed that the cost of this equipment would be offset within less than one year of attending physical therapy sessions on a twice weekly basis as prescribed.

Please do not hesitate to call if you have any questions or you would like additional information, please contact Lindsey ___________ directly at ___________. Thanks!

Sincerely,

————————

Here’s to hoping this works.

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Comments

  1. * elah42 says:

    I just saw your comment on Feministing. I’m a fellow vulvodynia sufferer and just thought I’d pop in and say, “Hi.” I have vulvar vestibulitis and was luckily diagnosed by the first doctor I worked up enough nerve to mention the pain to. I haven’t had such bad experiences as yours, though I’ve had a lot of doctors shrug their shoulders and say they didn’t have a clue how to help me.

    Posted 9 years, 3 months ago
  2. * gingerakimbo says:

    I also found your blog through feministing.

    I have had pain with intercourse for the past two years and have done the second-third-fourth-fifth-
    opinion thing as well. Diagnoses have included PID, genital warts, BV (at least 3x), possible endometriosis, and it “all being in my head” too many times to count. Finally I found a nurse who is considered to be the vaginal pain expert in my area (I live in Maine) and was diagnosed with dyspareunia and vulvodynia. It’s very nice to have names for my condition, but treatment has been another process entirely. Currently I am doing the tricyclic anti-depressant thing, and I laughed out loud when I came to the part in the letter where is says they “made Lindsey overly tired while not addressing the pain.” I am totally there right now. I am a fucking student and cannot accommodate a medication that involves needing 12 hours of sleep a night. Plus this shit isn’t working very well.

    As you can tell, I am very frustrated with this ordeal, but it is so nice to know there are other young people going through similar bullshit. Thank you so much for writing this blog.

    Posted 9 years, 3 months ago
  3. * AimeeLynn says:

    Hi, you responded to my comment on feministing so I checked out your blog and I’m wondering if you can help me. My OBGyn has mentioned vaginismus to me before, but from what I understand from my own research, since I can use a tampon or insert things into my vagina about 1-2 inches with no pain (the pain is only wih insertion deeper than 1-2 inches, like a barrier) then vaginismus would probably not be the problem? I don’t know if you know the answer, but it would be great to get some advice. If you wanted to email me at aimeelynn06@sbcglobal.net, it would really help me trying to figure out my problem. Thanks.

    Posted 9 years, 3 months ago
  4. * traveltothesky says:

    AimeeLynn,

    I tried to send you an email but received an error message, so I’ve put up an entry for you! Hope you get to it!

    Posted 9 years, 3 months ago


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