I should tell right you up front that despite all my sobbing, I'm actually one of the "lucky" ones - I'm insured, and I'm not dying. I don't even have cancer. I also don't have much quality of life right now and haven't for about two years, but I'm alive and expect to stay that way for some time to come.
I hope this is considered a proper topic for a diary - a healthcare company trying to force me to have treatments that research shows often don't work, rather than pay for surgery with an out of network specialist who regularly achieves excellent results. As a result, I'm looking at having to pay 100% of $10-20k out of pocket to have the surgery I need, and I'm still paying almost $450/month to COBRA my HMO insurance.
If you think it is, more below the jump... If you've think this is little more than a personal rant, please leave some criticism I can work with to fix it. What I'm going through happens to a huge number of women, and I'm sure I'm not only speaking for myself - I've got endometriosis.
My problem is that my doctors suspect I have a poorly understood chronic disease that my HMO in particular doesn't have a clue about. In endometriosis, endometrial tissue which should line the uterus grows in other places in the body. This is the tissue that grows and sheds with the monthly menstrual cycle, and when it's in your pelvic cavity, on your bowels, on your ureters or anywhere else it should not be, it keeps growing and shedding with the monthly menstrual cycle lacking anywhere for that blood and tissue to go. This can cause inflammation, pain, adhesions, bowel and bladder problems, nausea, vomiting, infertility, painful intercourse, fevers, fatigue, IBS symptoms, constipation, etc. Endo can cause extreme pain, equivalent to having acute appendicitis every day.
To complicate things further, the stage of the disease has no bearing on the amount of pain or symptoms a patient may experience.
I have HMO insurance COBRA'd from a teaching job last year - I pay almost $450/month to keep it. I've been too sick to take a regular classroom teaching job, so I'm substitute teaching and on what a sub makes that isn't easy.
This all started in April 2005. I had a horribly painful period - and at the time no health insurance at all. I'm not going to go into the ordeals I faced at the local teaching hospital, for example, not in this diary. Facing a disease like endo with no insurance at all deserves it's very own diary, and hopefully I will elaborate on it later. Let's just make it short by saying all I could get was a prescription for birth control pills and some vicodin. And it turned out they gave me the wrong kind of BCPs.
Finally last June (2006), I got insurance through a temporary teaching job.
Now I have to explain some things about the ways endo is treated. Essentially, there are medical treatments - none of which is a cure, and some of which have extreme side effects, and there is surgery. Lupron is a very expensive hormonal drug called a GnRH agonist which is commonly used to induce chemical menopause (also referred to as "chemical castration"), of course it also causes the symptoms associated with the lowered estrogen levels of menopause. It can only be used for two 6-month courses in a lifetime, mainly because it can reduce bone density and cause osteoporosis. After the Lupron is discontinued, pain most often returns with the menses. A number of women also say that Lupron gave them other side effects like joint pain, bone pain, depression and memory loss.
Lupron is also used as a hormonal treatment for advanced prostate cancer, and to castrate sex offenders, so it's a "serious" drug, and if you haven't guessed, one I am not interested in taking in the least:
http://archive.salon.com/...
Aside from medical treatments, surgery is the other way to treat endo. Most doctors do laparoscopies, which require only very small incisions, greatly decreasing risks and recover times. There are two main methods for removing endo - excision (cutting it out) and burning it off. Excision is highly preferred, giving the best results of all treatments - the experts have recurrence rates below 20% five years after surgery. The other way is to burn it off, also called ablation, fulgeration, and electrocoagulation is also a form of burning. Burning endo off doesn't give anywhere near the results that excision gives. Here's more info on excision and why it's preferred:
http://www.endoexcision.com/...
Once I had the insurance, I managed to find a doctor in network who doid excision, and she performed a laparoscopy on me, but she didn't find any endo. I should point out here that 35% of diagnostic laps fail to uncover the source of the patients' pain. However, when patient-assisted laps are done that number falls to 5%. Endo runs in my family, and my symptoms 9 months later are screaming "ENDO!!!" louder than ever.
Afterwards I had many GI tests at her recommendation, none of which found anything, but ruled out a lot of possibilities. The GI specialist said he felt it was a gynecological problem and sent me back to my PCP. My PCP was clueless. The OBGYN who did the lap was clueless. She wouldn't admit that she could have missed something, but couldn't suggest anything else to explain my symptoms.
I started looking for another excision doctor in network without any luck. After months of looking two of the doctors I tried told me I needed to go out of network, that there are no real endo specialists in my network. I found an endo specialist outside of my network, and one of my doctors made the request for authorization to go out of network to the specialist. Excision specialists routinely remove the disease from areas of the body that typical OBGYNs don't even look at.
I was turned down, and directed to another doctor in network, a Reproductive Endocrinologist. She tried to get me to take Lupron, and refused to help me with the request to go out of network because she says she can do the lap and electrocoagulate the endo then put me on Lupron and I'll be fine. But if the endo is on my bowels or bladder I'll have to have another surgery, because she can't deal with that and I've already read too much, I already know that if I have any endo lesions deeper than 5mm, she won't be about to remove them. So I have circled right back around to where I was - nowhere.
There are no doctors in my insurance network with the skills to do the surgery I need, but the insurance company won't admit that. If I do things their way, either I allow myself to be chemically castrated with Lupron, which only has about a 50% chance of relieving my pain and typically wears off when treatments are stopped, or I submit to surgery that has little chance of giving me any real relief - about 50% of patients who have their endo burned off have their pain return within two years. I think these odds stink, to put it nicely. I'll say it one more time - endo specialists who remove the disease by laparoscopic excision acheive recurrence rates below 20% five years after surgery. But the only way I can get to one is to pay for it all myself.
Even though I have insurance, even though it's $450/month, I can't get the care I need. That's what healthcare in this country has come to. No, I'm not dying - but I'm in pain every single day. The kind of pain they give you fentanyl patches and morphine for, because those are cheap. Actually, fentanyl patches are anything but cheap - a month's supply would run me over $300 retail if I didn't have insurance. So I try to look at it like at least my $450 month buys me a box of duragesic patches.
Too bad it doesn't buy me real health care. The only way out for me is to borrow money from my family. I already owe about $10k on student loans currently in deferrment (for that teaching credential I have learned to regret) and my credit card debt is finally down to about $4k. To have the surgery I need is going to be at least $10k and probably closer to $20k and my parents are the only option I have. This isn't easy for them - their plan is to put it on a credit card - at least they can get one with a low or 0 interest rate for the first year or so. And it isn't easy for me to ask them, but I can't be sick forever, I want my life back. I wanted to do it myself, I really did. Even with multiple doctor recommendations that I should go out of network to a specialist, the insurance won't let me go.
So you can add me to the list of the "underinsured" - the ones whose healthcare has managed them between a rock and a hard, cold, scary place.
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Updated the title to be a little more descriptive of the diary, I hope!