Along with abdominal pain, I have Pelvic Floor Dysfunction flares. They are what I call banana flares, because it knocks me off my feet (Ha! get it?). The one I had last Friday was a doozy but I am developing the strength to get through them without it becoming a catastrophe. I would normally have a panic attack and get upset that it was happening again but this time I remained calm and told myself “it’s just a flare, it will pass”, and it did. To get relief, I used ice, put the bath going, started doing some pelvic floor stretches, used tennis balls to release the muscles and then stuck a Valium compound suppository in my lady bits and then got in to the tub. Within 20 minutes I thought the worst was over but then this happened…
My insurance company called and I was told that I am not being approved for long term disability and getting my short term cut. This shocked me since I’m still in pain with no confirmed diagnosis. I even asked her how that’s possible since I have no improvement and still waiting for 2 important appts + diagnostics. She then told me I can appeal and explained the process. At this point, I am feeling prettayyy loopy from the suppository so I asked her to send me an email with that information she spoke about so I have a copy (I definitely was not going to remember much of it since I was in such a daze/high from the medication I took). Of course they would call on a Friday afternoon before the Victoria Day long weekend and… right in the middle of a banana flare.
I hate to say it, but this is a common reality for many of us when dealing with insurance. Even though I knew it could come to this, I was still super upset and annoyed that on top of my pain, I had to worry about this. I would love to go back to work right now but if I do, I will be laying in the boardroom for half the day or calling in sick again. I saw my family doctor as soon as I could and he told me he had sent 35 pages of reports to the insurance company that explains medically why I am off work still and even goes over the wait time issues. Since there wasn’t much he could do, I went to my physiotherapists and asked for their reports as support. I also went back to my specialist who was the one who assessed me and told me he believes I am dealing with IC/BPS, Endo, and PFD. I walked into his office hunched over, in pain, with the donut seat in hand and we chatted about how I’m feeling and I told him about my Insurance is being cut and he, without hesitation, wrote them a note that pretty much said:
“this woman is unable to work and complete her duties because she feels like someone is placing a stick of fire up her crotch and saying ‘surprise I’m baaack!'”
Ok maybe not those exact words…but you get it. I was in tears, not because of my pain, but because for the first time in my life, a doctor was supporting me and MY needs and is aware of how much my pain has effected my quality of life. I walked out of his office with a note and a new prescription in hand and got home asap to send the notes to my Insurance case manager.
Long story short, a week later, I magically was given back my Short Term support and a few hours after that call, I was approved for Long-term. It seems like the doctors notes helped my claim. I completely understand that the Insurance is pushing me to go back because they don’t want to pay for my leave. It’s business, I get it. But there needs to be less following company protocol when making a decision on disability cases, and more research on the best outcome and treatment for the patient, especially when it comes to chronic pelvic pain. It’s not “just period pain” or “chronic UTI’s” when the tests come back negative or “not of much concern”. Something is wrong. Our pain is real and we should be taken seriously.
I read that IC + PFD can be just as or if not more painful as Cancer. I understand it is not life threatening, but it does take lives. People with chronic pain are more likely to have depression and anxiety and are 2-3 times more likely to commit suicide than the people without chronic pain. So why is there not more research being done around female pelvic health? And why aren’t insurance companies up to date on the severity of the pain a woman feels with chronic pelvic pain? I wonder if a man who complains of pelvic pain has to jump through just as many hoops as we do, to get care and support they need. I read an article in Marie Claire about sexism in medicine that I thought was extremely interesting. Link is here.
Please comment below if you have been denied Disability for your pelvic pain. I’d love to hear how you coped and managed through that time. xoxo