Healthcare and Vulvodynia

10/06/2009 at 7:56 am | Posted in Uncategorized | 6 Comments
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As we speak the US is embroiled in a health care debate. President Barack Obama is pushing for health care reform in 2009, although there’s been backpedaling on the public option. Town hall meetings are degenerating into heckling & squabbling by attendants. There are a lot of questions & concerns about what health care reform really means. As of the beginning of November 2009, the health care reform is still pending and still splitting opinions.

Health care reform in the US is a big deal, because right now, not everyone has access to adequate health care. In the US, most insurance is provided through employers. Of course, not all employers offer health insurance benefits. And if health care reform is passed, a major goal is to get more people covered while reducing the high costs associated health care – or the high costs associated with a lack thereof.

One of my concerns about health care reform in the US is how it will impact sexual & reproductive health, the domain in which vulvodynia and other pelvic pain conditions are usually classified. As far rights directly related to reproduction and abortion in particular, it’s looking grim. My hope is that patients with pelvic pain conditions will be covered adequately as well.  This may not seem like the most pressing issue, since, frequently, sexual health problems will not be directly responsible for death. There are some definite exceptions, notably AIDS, and cancers.
For a few moments, I feel guilty thinking about sexual health in light of other deadly, catastrophic illnesses…
But then I remember that it’s not fair to minimize the very real suffering & misunderstanding that I and other pelvic pain patients go through. And I remember how hard it is to convince others, including doctors, of how very real it is & how difficult it can be to get an effective level of care.

What would my life be like if I did not have insurance? What if I was not able to seek help? Where would I be? What would I be doing right now? Would I have been able to complete college? Find & keep a job? Would I still be in pain right now? Would I be able to sit? Would I still be in the same romantic relationship I have been cultivating for almost a decade?
What new challenges would I face, if I were less privileged?

Vulvodynia and other pelvic pain conditions – pudendal neuralgia, interstitial cystitis, lichens sclerosis, even vaginimsus (any of which can overlap with various other health problems including but not limited to fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, etc) – these conditions can spill over into other areas of life besides sex. For many, it’s not just sex. These are chronic pain conditions.
The pain experienced with daily life and/or sexual activity can eat away at your vitality & chip away at your mental & emotional health. Your employer might have to make special accommodations to help you get through the day when you’re in pain. How do you explain to your employer what part of you is hurting, when that part is so taboo? If you miss work due to pain you can lose your job, or you might have to “Voluntarily” leave it. If you have a relationship or want to have one then you can be faced with nagging questions about how healthy your relationship really is if you aren’t having the dominant form of sex. When your doctors can’t or won’t help you and things become desperate, you become prey for unscrupulous snake-oil peddlers.

Vulvodynia and other pelvic pain disorders don’t necessarily have to be expensive to live with. There different treatment options available, which vary in their price and individual interactions for patients. But for me, and a lot of other women I’ve talked to, living with vulvodynia is expensive. Sometimes prohibitively so.

According to the Vulvodynia Survival Guide, 62% of vulvodynia patients had income over $50,000 – not because greater wealth increases your odds of developing pelvic pain, but because greater income means greater access to doctors and care. (And, as these were self-reported figures gathered from vulvodynia.com, greater income also meant internet access.) (Glazer, 33).  And Dr. Glazer further warns, if you don’t have insurance, or your insurance company sucks (like mine did,) you could wind up spending thousands of dollars on treatment out of pocket (72.) The NVA is currently conducting research on how much this pelvic pain condition costs.

And in my experience, there are a lot of costs associated with vulvodynia…

You have to find a doctor who is prepared to deal with you, and that means spending time searching one out. Not all gynecologists and doctors are created equal; far too many still dismiss pelvic pain & dyspareunia as “All in your head.” Others don’t keep up with current research and still have never heard of vulvodynia and related pain conditions. Others have heard of these chronic pain conditions, but do not feel confident in their ability to offer you relief, so they will refer you instead to a specialist – who might live miles & miles away and be out of your insurance network (if you have insurance.)
So finding a health professional who will work with you means spending time calling around  and using the internet to find a competent doctor, and then using gas & travel money to get to that doctor.

Then, getting to that doctor can be a hardship depending on where you live and what resources you have at your disposal. I’m lucky (or more likely privileged) because I live in a fairly urban area, so I can get to New York City where my specialist works with relative ease.
But what if I was living in a rural area where gynecologists and specialists are miles away? What about people who have to drive for hours or possibly even book a flight to get to the doctor of their choice?
Would I face struggles finding care if I were living outside of the US?

Then, chances are your doctor works something similar to a 9-to-5 job, Monday through Friday. If you work, and your schedule is also 9-to-5 Monday through Friday, that means you have to take time off work just to get to the doctor. Hopefully your job offers sick or flex time to make up for lost income. Hopefully if your job doesn’t offer you sick or flex time, they won’t fire you for your absence.
And, since this is a chronic condition, sometimes accompanied by other chronic health problems, there’s a pretty good chance that one visit to the doctor won’t be enough. No, you’ll have to work it into your schedule to see your doctor multiple times, especially if you’re experiencing something acute, like a pain flare or a vaginal infection. Or else you’ll still be in the process of seeking out a competent, experienced doctor who can help you, and in the mean time, you’re stuck with someone who is ill-equipped to handle you, dragging the process out even longer. If your pain isn’t responding to whatever treatment the doctor prescribes, then you might have to return at a later date to let switch plans or follow up.

Not only that, but not all doctors take all insurance plans, if you have insurance. Some specialists don’t take insurance at all – the paperwork hassle of getting reimbursed at a discount isn’t worth it, so patients have to pay up front, potentially screening out lower income patients. If you do have insurance, you might be able to get reimbursed directly through your insurance company if you keep meticulous records and submit a claim directly, but, then you have to wait. And wait. And wait for insurance to review the claim and make a decision. Oh but wait they can’t review the claim because according to a telephone representative, they never received it. So you need to re-submit it and wait a few weeks while the process starts over again. Then after calling the insurance company, holding for up to 1 hour before getting to talk to a human being, and finally speaking to a surprisingly unprofessional representative, you find out you’re still getting nowhere because the claim went to the wrong department, or the insurance company needs paperwork that has been previously submitted, or that the doctor’s office has that you don’t have. So maybe you can get that extra paperwork together & submit it in hopes of getting some reimbursement for the cash that you had to outlay at the doctor’s office, meanwhile you have other bills to pay.
Then, finally, weeks later insurance gets back to you and either rejects the claim outright or sends you some piddling reimbursement that’s nowhere near what you actually had to pay. Thus you have to start the appeal process which is just as agonizing and time consuming as the first claim.

And, in the US, healthcare still isn’t a right. Even if you go to an emergency room where you theoretically can’t be turned away, the hospital is obligated only to get you stable. So even if the hospital gets you under control temporarily, whatever problem is underlying your symptoms could still be left lurking under the surface, given free reign to continue causing problems.

In the US, most people who have health insurance receive it as a benefit through their employers. So if you lose your job or your employer cuts health benefits, you could find yourself between a rock and a hard place. You may still be able to purchase insurance through a COBRA program – but this can be expensive, especially if you need to cover health care costs for your family.

And, if you are living with a life-threatening or chronic condition, you could lose your employer-provided coverage, or be ineligible for private insurance later on, due to pre-existing conditions. If you’re living with something that is expensive to treat, you could go into bankruptcy due to medical bills. These bills can become quite substantial.

I’ve been tracking my vulvodynia-related health care costs since this whole mess started, and I want to share what it’s like for me, living with and spending money on vulvodynia. I keep meticulous records for tax purposes. I don’t even own a home, don’t have a mortgage, and yet somehow I racked up enough health care costs to allow me to itemize on Schedule A.

For tax years 2007 & 2008, I know exactly how much money I’ve spent out-of-pocket for insurance and treatments for vulvodynia & pelvic floor dysfunction, to within +/- a few hundred dollars (I can’t deduct over-the-counter herbal & dietary supplements, cost of health-related books, etc.) I have to estimate for tax year 2006, since I didn’t itemize that year (I was just starting to seek out treatment.) And I have to estimate for tax year 2009 since I haven’t done my taxes for this year yet.

In 2006, I estimate that I spent $2,500-3,000. I was still covered on my parent’s insurance plan for most of that year, and I was just starting to seek treatment, so there were multiple doctor visits & tests involved.
This was the year I started the alternative medicine, which I kept up even in later years. The acupuncture, homoepathy, chiropractic. Alternative medicine is a long-term treatment, meaning it can take multiple visits just to see a small improvement. Each session ran $65-$100 after insurance, depending on which insurance policy I was on. You could buy a prepayment plan from the acupuncturist’s office, which would give you one or two “Free” visits, but you’d have to pay up front a few hundred dollars to do so.
The homoepathic treatment wasn’t covered by insurance at all.

In 2007, I spent $11,500.00. That year I had to start paying for my own insurance instead of being covered on my parents’ plan. The biggest expense was the surgery, at about $7,000 plus facility fees & an anesthesiologist. All out-of-network.
How much would you say a vagina is worth? Because according to my insurance company at the time, it’s only worth $1,000. That is all insurance ever reimbursed me for surgery, even though the surgery was medical in nature rather than cosmetic (not that I would personally judge anyone who does undergo purely cosmetic surgery,) pre-approved, pre-certified, all paperwork submitted. But no, since there’s no charge code for a vulvar vestibulectomy it has to be classified as “General female surgery” which could mean anything – and the insurance company interprets it to mean something that conveniently doesn’t cost them as much. Even though I try to explain to them with paperwork & journal articles & charts & diagrams what it actually is and why I needed it.
It should be noted here that the insurance debacle described above (when I was talking about how hard it can be to find a doctor & get care,) that was my insurance debacle.  I fought & continue to fight for greater reimbursement but every time I call or write a letter I get a major runaround. It is absolutely exhausting dealing with insurance companies.

Another notable cost that year was the $500 dildoes.

A few weeks after surgery, my surgeon wanted me to start dilating.
It is possible to have dildoes covered by insurance – if they are for a legitimate medical purpose, and if your insurance company isn’t jerky. So my doctor prescribed a set of five solid glass dilators.
They are heavy, beautiful and effective… and expensive, at over $100/each. Although looking online, it’s actually pretty normal for glass toys to run up to that high of a price.

Unfortunately for me, my insurance company refused to pay for the dilators, so I was out another $500. I’m still not understanding why they rejected that claim.
We could have used a different dilator kit. In retrospect, I could have bought a plastic kit, or a set of silicone dildoes. And, I did eventually buy a plastic dilator set anyway, which was cheaper. But first we tried it this way.

In 2008, I spent $5,400. I was still paying for my own insurance, and started physical therapy.
That’s another long term treatment. I saw initial results soon after starting, but it still took many PT sessions before I the mysterious pelvic pain decreased, and many sessions before I started to learn how to consciously control my pelvic muscles.
Each physical therapy appointment cost me between $30-$70 out of pocket, depending on which insurance plan I was on. And I was going in for physical therapy between once or twice a week.

So far for 2009 my estimate is so far I’ve spent $2,000. This is my least accurate figure for now since I haven’t done the tax return yet.

What do I spend the least on?
Drugs.
I take very few drugs. What do I have, a few refills on oral Diflucan (just in case,) and an expired prescription for oral Valium. When I need antibiotics, I get antibiotics, generic ones, for usually a few bucks. The most expensive antibiotic I was on in the last two years was the Levaquin for $40, since that was a brand-name. I need some prescription strength ibuprofen after surgery and some topical estrogen gel before that.

Now some will say that it’s worth it to be off of medication, since all medicine can carry side effects, and side effects can be dangerous.
But it is expensive to be drug-free. Expensive enough so that there are times where I have questioned whether it’s really better for me, long term, to be leaking out so much money that I could be investing towards a home and retirement. Is it worth it to be drug free? I could have probably saved several thousand dollars if I only needed to pop a pill every day.

At what point would the cost of medication match and then exceed the costs of being drug-free? How much time would have to pass, how many pills would I have to take, before the lines cross, and the drugs would cost more than what I’ve already spent? Or would the side effects of medication eventually be too strong for me to handle? Or would I feel so stigmatized for having to take medication that I would eventually cave in to peer pressure & stop using them?

I want there to be a nice, easy oral pill I can take to address pelvic pain. Right now two options I have for prescription medication for pelvic pain are tricyclic antidepressants and anti-seizure medication – both used off label.
This is why I don’t understand why there’s so much backlash against Big Pharma for researching female sexual dysfunction. Supposedly Big Pharma has been trying to create a female version of Viagra for years, but I’m still not seeing it. Where is it? I don’t feel threatened by Big Pharma, because Big Pharma has very little interest in me. I want to be able to take a pill and make it all go away.
But pelvic pain must not be a very lucrative area of business. So much for Big Pharma being interested in female sexual dysfunction.
Nonetheless, one of the very first graphics I see on the New View Campaign website is an anti-pill picture. This terrifies me in light of the fact that I know other women who really do need prescription medication to express their sexualities with minimal (or preferably, zero) pain, as well as women who need prescription medication just to make it through the day because the pelvic & genital pain is so pervasive. Or because there is an active vaginal infection and not all pelvic pain patients can handle vaginal gel medications, so they will use oral pills instead.

Still, that’s several thousand dollars on my healthcare since 2006. And that’s just the out of pocket costs.
Now imagine how much more the actual billing was for. Imagine all the costs I didn’t see, but that my doctor offices did when they were filling out paperwork for reimbursement.

Now imagine that I had to ask my parents to help me pay for some of these big bills, since as a poor college kid, I couldn’t have afforded a lot of these treatments without their help. Because that’s what happened.
I have insurance.
It just doesn’t work for me.
But I can’t afford not to have it, on the off chance that something major and unpleasant does happen.
What would it be like if I didn’t have the support of my parents at those critical moments? What if I had my own family to raise? What if my job didn’t offer health insurance? What if I lost my job and my health benefits with it? What if I tried to apply for COBRA coverage and couldn’t afford the monthly out-of-pocket expenses? What if I couldn’t get back to work because the pain was too much? What if I couldn’t have afforded the treatments I picked? What if I had a health condition that could be potentially lethal?

What would it be like if I my bills were high enough so that I eventually had to weigh the cost of insurance premiums with very little return on them? At what point would I be faced with the choice of saving a few hundred dollars a month on insurance premiums, gambling on the chance that I will not develop a catastrophic illness or get into a major accident?

There are so many what-ifs. The way health care is set up right now, it is already rationed. For all the fears of government intervention determining who gets care, socio-economic status, health insurance and its costs already do that for many families and individuals. Pre-existing conditions keep others off the insurance rosters. So far, I’ve been largely spared from the worst financial backlash when health care fails. I’ve got enough coverage and savings (so far) so that I haven’t been forced out of work and into bankruptcy.

But it’s more grim for others. Something has to be done, to provide better access to healthcare, for more people. I don’t know if the public option is still fesiable, with all the information & misinformation & voting & not voting & all – but I’d like very much for a public option to be feasible. A few links of interest, to explain what’s going on, what’s at stake, and what you can do: Health Care for America Now! MoveOn.org and yes, even AARP.org. I’m only in my 20s and I read AARP bulletins.

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6 Comments »

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  1. […] wrote an article about Healthcare and Vulvodynia last week. But then, this blog is micro-small, so it’s not likely that many people […]

  2. IS THIS RELATED TO VUVLAR VESTIBULITIS??
    I am having a sugery for this in a week.
    I have IC , AND CHRONIC PELVIC PAIN.
    I AM ABOUT TO LOSE MY JOB .
    WHICH MEANS NO INSURANCE.
    WHAT DO WE DO .
    KNOW ONE UNDERSTANDS THIS DISEASE OF CHRONIC PAIN.
    NOR DO THEY WANNA TALK ABOUT IT.
    WHAT CAN WE DO ??

    • Yes this is related to VVS. The surgery to which I refer was for VVS. Good luck with yours; I understand the frustration with a lack of information re: chronic pain, esp. with regard to chronic pelvic pain.

  3. […] Healthcare and Vulvodynia – Timely in light of US health care reform, this is what it was really like for me, […]

  4. […] Health care, and healthcare, is a feminist issue! I wrote about my experiences dealing with vulvodynia and healthcare months ago! How is that not a mingling of sexuality, sexual health and health […]

  5. […] So if you can’t afford medical treatment, then that’s good, right? Now you must focus on non-medical interventions, which have fewer side effects. Hold that thought – remember that it is possible to seek non-medical intervention for sexual dysfunctions, such as talk therapy with a licensed sex therapist or psychologist, and to have such costs be partly covered by insurance. The blogger Minority Report has written about taking this route, and she’s done some math. Talk therapy can become pricey, and even sex therapists themselves express disappointment with the outcomes. I have no doubt that there’s a connection between deregulation and the privatization of healthcare (insurance,) but I do doubt that I can explain it here. (That hasn’t stopped me from trying, though.) […]


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