Endometriosis Discrimination

ENDOMETRIOSIS DISCRIMINATION

Emma H. 18/05/2018

There are many frustrations in an endo woman's life, and I've just added one more to the list.

There are many frustrations for a woman with endometriosis. If you’re the 1 out of 10 women who suffers the condition, you have most likely experienced several of the following:

Being sick and in a lot of pain regularly (probably for years), not knowing what’s going on with you, while the family and doctors keep telling you it’s normal and you’re just too sensitive.
Having to miss out on school, work, sports and social events and blaming yourself for slacking, or downright believing that you’re a wimp.
Trying out various conventional medications, only to find out that the side effects make your life miserable, and the disease comes back with a vengeance after you stop the “treatment”.
Dealing with pressure and threats of deteriorating health by conventional doctors who are not open to alternative approaches to healing. (Not all of them, though. My current OBGYN is great and has never put any pressure on me.)
Dealing with ignorance and lack of understanding of the (well-meaning) people around you. (See my article on 7 Things not to say to a woman with endometriosis.)
Battling demons in your head that relentlessly keep suggesting that you’re terminally ill and will never be well again. (Which you can be, trust me.) Being more and more afraid of the omnipresent pain. (See my articles When life has other plans for you and Moonprayer.)
Having to cope with frustrating emotions concerning your womanhood; from hating your periods, through wondering whether you’ll ever be able to have children (and possibly having to mourn their loss), to deeper emotional work on why your femininity is under attack. Feeling like a failure.
Putting in effort and struggling along as you embark on a healing journey through various alternative and complementary approaches. (Great resources are Angie Alt’s work within the Autoimmune Paleo movement, Steph Gaudreau’s personalized paleo, Aubree Deimler's and Melissa Turner’s natural approach to endo, or Heather Jacobsen’s private FB group on endo and adenomyosis.)

I’ve experienced most of them. And recently, I’ve added a new one to the list. I call it “discrimination by ignorance”. Both the discrimination and the ignorance came from a private health insurance company with which I was hoping to set up a policy.

As some of you may know, I work as an interpreter for the EU institutions. Recently, I’ve changed my status from a temporary official to a freelancer. Which means I needed to change my health insurance policy. Working for an international institution puts me in such a position that it is more advantageous for me to opt for a private health insurance, rather than a public one. I filled in the application form and diligently filled in the medical questionnaire. I did not hold back any information and on my own accord supplied a translation of my endometriosis surgery report (from over a year ago).

The insurance company was not satisfied with this info and asked for more documents. I was not able to get a discharge report from the hospital, but I asked my OBGYN (the surgeon who performed my excision surgery) to write a short report for me saying that my situation is stabilised and I only need to have regular check ups. At this point, I started suspecting that my application may not go through as smoothly as I hoped for.

When the insurance company asked yet for more details, namely a statement of the course of the disease by the doctor, I got quite frustrated. No one knows when the endometriosis “arose” or why. If someone asked me for a description of the course of my disease, and my surgery report and status update from the doctor was not enough, I’d need hours to tell them how it’s been developing ever since I was a teenager. I truly didn’t know what else to send them, which I explained in another email.

When I got a reply I was shocked to see that they wanted me to specify whether my endometriosis was benign or malignant. What? I’ve been digging into endo literature for the past three years and had never come across such endometriosis classification. After a brief Google search I was able to come across a scientific article discussing the (non)resemblance of endometrial cells to cancerous cells. And then it dawned on me: They thought endometriosis was (something like?) cancer.

Well, I do understand endometriosis is still a big unknown even in the medical community (even though 1 in 10 women are affected by it). I also do understand that insurance companies want to be thorough in researching the real health condition of their potential clients. But I can’t describe how defeated, ostracized and underprivileged I felt. My mind kept thinking (as many times in my life) how unfair it was to have endometriosis. Especially when I consider how much I’ve done to get better, and I never asked much from “the system”.

(I warmly recommend Angie Alt's article Four reasons endometriosis is a social justice issue where she talks about how inadequate diagnosis and treatment of endo costs us (the state, employers and patients) money. In addition to the emotional issues endo women have to go through, of course.)

In my particular case, this is what I cost “the system”:

One endoscopy to find out the reasons for my IBS and to rule out celiac.
One MRI to verify the possibility of having endometriosis (which was confirmed).
One 1h15min specialised excision surgery, 2 nights in the hospital.
(Possibly 13 years on the pill, though the primary reason was not “managing” endo. Plus women are now freely prescribed the pill for reasons like treating acne and “regulating” their cycle, just as hormonal therapies are freely given to women to “handle” menopause.)
Several sick days a year (around 6) that I take on my worst endo days. (I’m officially entitled to 12 for any medical reason.)

This is what recovering from endometriosis cost me, personally:

Time and effort invested in getting to know as much as possible about the disease. (Check out my Recommended books section.)
Time and effort invested in getting to know as much as possible about autoimmunity (as I kept coming across the information that endo can possibly be of autoimmune origin).
Time and effort invested in understanding female hormones and the human hormonal system in general (as they are interconnected).
Three years invested in getting to understand and implementing the Autoimmune Paleo Protocol (AIP), which was the main intervention that helped me to get better. A huge effort to follow a special anti-inflammatory diet, big changes in my lifestyle. (All worth it!)
Investment in quality food supplements. (Check out my Recommended products section.)
Private psychotherapy sessions going on for years. Regular private sessions with an osteopath. (All worth it.)
Time and effort invested in finding a good specialist to be able to proceed with a successful excision surgery.

All this means that over a year after the surgery, I do not take any medication (apart from a couple of painkillers every period as I still have adenomyosis and I refused to be pressured into a hysterectomy) and I hardly need to take any days off work.

This is what the majority of women with endometriosis, that are “treated” conventionally, cost:

Countless erroneous diagnoses.
Lifelong hormonal therapy (may it be the pill or stronger forms of hormones, including those inducing artificial menopause).
Repeated and unsuccessful excision or coagulation surgeries.
Hysterectomies followed by a hormone substitution therapy.
Emergency hospital visits (in some cases).
Repeated and prolonged sick leaves.

On the one hand, nothing major has really happened. I was forced to take the less advantageous of my health coverage options. I did put a lot of effort in healing my condition and my reward is feeling good, no need for better health insurance coverage. Why should I get any slack on the “administrative” side, right? I have a prestigious job anyway, so I can afford it. There are worse things going on in the world.

On the other hand, I still feel I need to speak up and talk about the “discrimination” or “social injustice” or anything you want to call it, that comes along with an endo diagnosis. I am not upset by the fact that the insurance company wants to be cautious and thorough. But I’m still amazed at the degree of ignorance in a body that should be qualified in such matters.

Obviously, endometriosis awareness raising is still lacking, and we all have a lot of work to do.