My insurance coverage for vulvodynia

The cost of medical care is a frequent topic on the Vestibulectomy & Vestibulodynia Support group on Facebook. It is a valid concern as medical care can be very expensive, especially when you have to pay for it out of pocket. From the conversations I’ve had with other patients, it seems that there are a wide range of responses from insurance companies to women’s insurance claims for care for vulvodynia. I’ve heard everything from 100% covered with no questions, to 100% rejected on grounds of “cosmetic procedures aren’t covered.” Cosmetic?! Wow. :facepalm:

The lack of understanding by insurance companies (and many doctors!) is a result of the current lack of research and understanding of the biology of vulvodynia. The more we can support sexual medicine specialists doing good research, the better! It will require high quality clinical studies that show treatments are effective for insurance companies to view them as valid and cover the expense without pause. Hopefully, someday, a vestibulectomy will be as well known and accepted as a treatment for vestibulodynia as a cast is for a broken arm.

I have vestibulodynia and saw three different kinds of doctors: a sexual medicine specialist, a pelvic floor physical therapist, and a psychologist (AKA sex therapist). I also had surgery: a full vestibulectomy. Those are the types of appointments and claims I’ve dealt with personally.

In my experience, very little of my treatment has been covered by my insurance, but it was not because the company viewed my claims as invalid. I do not know why some people have claims rejected because the procedure itself is not covered. It could be difference in insurance companies, individual plans, or both. If this happens to you, I encourage you to call and speak to a representative. I had a rejected claim once, and it turned out to be a simple error with the address for the practice being registered in their system as a pharmacy, so they rejected my claim for a doctor’s visit at a pharmacy. The representative was nice and we got it fixed.

It is also possible that the individual diagnosis codes play a role in whether or not a claim is rejected. Medical conditions have an assigned code that is universally used by doctors and insurance companies to identify diagnoses. I used diagnosis codes that were not vulvodynia-related for my physical therapy and psychology claims. I was seeing the physical therapist for muscle pain, muscle spasm, and muscle tension, so those were the diagnosis codes on my claims. I was seeing the psychologist for anxiety, so that was the reason provided. Although my muscle spasms and anxiety were caused by vulvodynia, that wasn’t the diagnosis I gave as my reason for the appointment. It very well may be standard practice to report the diagnosis codes the same way that I have, but I do not know, so I wanted to mention it in case it could be a source of problems with insurance for you. But again, you can call the insurance company to ask why a particular claim was rejected.

My trouble with insurance has been because all of the specialists I’ve seen, the sexual medicine practice, the pelvic floor physical therapist, and the psychologist, are all out of network providers. This means that they are not participating with my insurance plan and do not submit claims to the company for me after each appointment. I can still submit the claims myself, and do, but it is considered out of network.

My insurance plan, like most plans, does not offer as much coverage for out of network care as they do for in network care. It makes sense because the insurance company would prefer you to use the doctors they are in an agreement with, and therefore make that the simpler, and less expensive, option for you. And typically, when you have a long list of doctors to choose from, you can find one that is in network. In my case, I wanted the best doctors to treat my vulvodynia, and if those specialists were out of network, so be it. I wanted the best. I spent too long seeing doctors that didn’t understand me.

My insurance plan is a high deductible, low monthly premium plan. This means that I pay less out of my paycheck for the plan, but have a higher deductible to reach before the plan starts to cover expenses. Also, the out of network deductible is higher than the in network deductible. (In 2018) I pay $72.46 per paycheck (for myself and my husband), or $1,883.96 per year for my plan. I have an in network deductible of $3,000 and out of network deductible of $6,000 that I have to pay before the insurance company will start helping with the cost. (Importantly, my plan counts out of network costs toward both deductibles, which ended up saving me a few thousand dollars!) Once the deductible is reached, the plan will pay 90% of in network costs and 80% of out of network costs.

I know insurance is confusing. Honestly, before my diagnosis, I hardly ever went to the doctor and had no idea how my insurance worked. Once I started submitting the claims myself, I started paying a lot more attention. Let me walk you through what this looked like for me in the first year after my diagnosis.

My largest cost was pelvic floor physical therapy. I went (almost) weekly for about 8 months, from my diagnosis until I decided to have the vestibulectomy surgery. At each appointment, I paid $175 up front, out of pocket. I then sent the receipt to the insurance company with the appropriate forms (online, which was easier!). After a couple of weeks, I’d get a response. They decided that the appointment SHOULD HAVE cost me $87, and therefore, I now had $87 counted toward my deductible. Repeat weekly.

I had a very similar experience with the psychologist. Each visit, I paid $140 up front, out of pocket. I sent the receipt and forms to the insurance company. A few weeks later, they would say I had $100 counted toward my deductible. Repeat biweekly.

With my main doctor, the sexual medicine specialist, it was also similar. I would pay up front, out of pocket anywhere from $130-200, send the receipt, and get some portion counted toward my deductible. Repeat every few months.

When I had my vestibulectomy at the end of the year, I paid for the surgeon out of pocket because the insurance company would not cover the out of network provider. This was $4,000, with $2,000 due before the surgery. I’m currently on a payment plan for the second half, which began at my post-op appointment, 4 weeks after surgery. I’m not bothering to send these receipts to the insurance company, because I was told they wouldn’t count them anyway.

Because the insurance company was only counting a fraction of the actual cost, I barely reached the in network deductible of $3,000, and did not even get close to the out of network deductible of $6,000. The plan has out of pocket maximums for the year ($6,850 in network, $14,200 out of network), but this is also calculated based on the cost I “should have” paid, not what was actually paid. I have actually paid about $10,000 out of pocket this year, but according to the insurance company, it was about $3,000. Fortunately, the hospital bill was the ONE THING that was in network. I had just reached the in network deductible, so the hospital bill was covered 90%. I only got a bill for about $1,000, even though the original total was over $16,000. (I paid a little less than 10% of $16,000 because insurance companies get discounts.)

I did have another option for my insurance plan - a more traditional PPO plan. With PPO plans you pay a flat fee, called a co-pay, when you see in network doctors, rather than a percentage of the bill. With these plans you’ll pay less each visit, but they cost a lot more out of each paycheck (double, in my case). For me, this was not a better option because the out of network coverage was not much better with this plan: $1,200 deductible, then 70% covered. In the long run, it would have been more expensive overall, due to the higher monthly premium and similar coverage for all the out of network appointments.

I realize that these numbers might be shocking. When I added it all up, I was a little shocked myself. But I hope it doesn’t discourage you from seeking treatment. Of course I was frustrated and stressed out sometimes by the amount of money we were spending on my medical treatment. And a lot of the time, I wondered if it was worth it, if I was worth it. Is sex really that good? Are you sure it is worth this? Maybe we should just decide to live with a celibate marriage...

But I tried not to linger in that headspace too long. Our society teaches that women aren’t worth it. That our health and wellness and sexuality aren’t important. But ladies, our pleasure is worth it, and it is equally as important as men’s. No one blinks an eye when men get prescriptions for Viagra, do they?  Also, as a general rule in life, I try not to worry about money too much. I think about money as a game that we have to play, even though we don’t want to. Having a lot of money has never been important to me - if it were, I wouldn’t have decided to be a scientist or a teacher. Being happy and healthy is more important than having money, and I don’t want to sacrifice my health because of the cost. It is a worthy investment.

I hope this information was helpful to you. If nothing else, I hope that your experience is easier and less traumatic than mine, even if it’s only because you had an idea of what the expect and know you’re not alone. As always, feel free to contact me if you have any questions or want to know more.