On Endometriosis

I'm posting this today because, on Facebook, at least, its Yellow Shirt Day, where people wear a yellow shirt to honor people with endometriosis. I am just one person with endo, but I hate this disease. Its debilitating, exhausting, frustrating. Doctors are usually no help. Right now its under control. more or less, by my having gone gluten-free. But I was one of the lucky ones, as I was diagnosed relatively early in my life.

This is my story. Its longer than my usual posts, and has some TMI moments. Just warning you.

So, I've always had horrible periods. Truly horrible, first-day sick, periods. Periods that were so bad I would have to take massive amounts of Advil just to survive... People can still, to this day, tell when I have my period. I'll show up for work looking white and exhausted... but back to the saga of my endo.

I was 18, in my freshman year in college. I started having severe abdominal pain. And feeling absolutely exhausted. Went to the health center. They were no help. Went to a couple of drs. No help there. The health center started telling me that it was all in my head, and I should go see a shrink. *grrrrrrrrrrrrrrrrrrrr* um, no, this pain is real, thank you. My parents and sister came over from Egypt for Christmas, to try to help me get diagnosed. Now endo can really only be diagnosed through surgery, through a laparoscope.

So, I had the surgery, and yay! They found endo! At least now I could feel vindicated, although I never appreciated the surgeons' little comment about 'well, if you really want to cure it, you should get pregnant'. ha, freaking, ha. At 18! A freshman in college? (And a virgin at the time, too). I don't think so, Dr Doofus. So then I went on the Pill, full time, to stop having periods at all. This I liked. I was functional. The only problem was, I gained weight on the pill. Big time (or so I thought, at the time). But otherwise, I was functional. Then the doctor decided I should start having periods again.

GAAAAAAAAAAAH. It wasn't any better. I was right back with severe, incapacitating pain. So I took the logical next step, asked the doctor what to do next? (This was the summer between my junior and senior years). And the answer was to simulate menopause (or go on a male hormone that would essentially do the same thing, but have some permanent side effects). I opted for the simulated menopause. NOT a good idea.

Mood swings, night sweats, lack of ability to concentrate... I basically flunked out my senior year because of this drug. It was all menopause, all the time. All the symptoms, all at once. Fortunately, I had good enough grades from the previous three years that i was able to transfer in enough credits to graduate later on. I missed graduating with my peers. I never wore the cap and gown.. and that is something I'll always regret.

In Baltimore, I was living with someone. (I just felt I didn't have another option to get away, to try to make my own choices). What they didn't tell me about the menopause drug is that it also was a fertility drug. I got knocked up.

Now on the one hand, I was overjoyed. i'd had five years, at this point, of doctors telling me, "The best cure for endo is to be pregnant, but it also causes infertility, so you may not be able to become pregnant'. On the other, I was essentially alone, in the city, with no-one to talk to. I couldn't talk to my parents, or any of my family. I couldn't talk to any of my friends from college, because I was ashamed of not having graduated with them. The father shut down and wouldn't talk to me at all. I have never felt so alone, and so terrified, and so angry. I had an abortion. It was a horrible experience, and one I regret every day as I pass out of my thirties without ever having another chance to be pregnant. Without having had other kids.

Anyway, back to the saga of the endo... so about two years later, the endo was getting really bad. It hurt to go to the bathroom because things were so twisted and adhered inside... I remember crying because it hurt so much, not wanting to have a bowel movement... (yes, TMI, I know) I found a wonderful surgeon (who, unfortunately, retired) who did a lap, found that my ovary was twisted up behind my uterus, between that and the bowel, and covered in so much endometrioma that it was the size of a grapefruit. He had to remove part of the ovary, but he cleaned up as many adhesions as he could... and put things back the way they were supposed to be.

So I came out of that, recovered...and then started to try various dietary approaches. Because surgery is a last resort. You don't want to have regular surgery for the rest of your life, unless you are Joan Rivers. I tried adding soy. I tried eliminating soy. I tried going vegetarian... I tried a lot of supplements, herbs... and a lot of it was still just survival...

I dated, moved in with someone, lived with him, dumped his sorry ass after a few years, and got back on track with my health. I had gained a ton of weight with the ex as he insisted that what I really needed for the cramps was alcohol. So he medicated me with large glasses of grain alcohol in fruit juice every 23 days (my cycle has always been regular, 28 days). I ballooned up to a size 22/24 because I had no energy (one of the effects of endo on me, was having killer cramps, and was having all this alcohol poured into me one week every month).

So, after getting rid of the ex, moved up to MA to detox. I bought a book on Endometriosis and nutrition. And one of the things it suggested, among other things, was that the majority of women with endo are allergic to wheat, dairy, or both. I went on an elimination diet, discovered I had a wheat allergy. I stopped using tampons, and started using washable pads to try to eliminate some of the toxins in women's feminine products. I started going to a gyn who was into supplements and natural healing, which helped some.

I still have horrible periods. I am probably never going to have a kid, as much as I would have loved to. I use some natural cramp bark and supplements to try to manage the endo, but eventually I am going to have to find a surgeon.

The things I wish I could change about the treatment of endo? The drs need to learn sympathy. I can't tell you how many doctors made the crack about 'haha, all you need is to get pregnant and your endo will go away'. WRONG. And the 'cures' are basically the same things they have been using for about fifty years. The pill, simulated menopause, and then "ok those didn't work, lets take everything out". But then they put you on hormones because you are still too young, and the nedo responds to the hormones......

Some of the things I have gone through with endo...pain with my periods that is overwhelming. Pain with sex. Hormonal fluctuations. Frustration with doctors and the traditional methods of dealing with endo...one surgical technique is to sever the nerves to the uterus to minimize the pain... and yes, I was desperate enough to authorize it, although it wasn't done. In my support groups, women have gone through horrible things, undergone quack remedies, because they were not getting relief from the traditional treatments. The traditional treatments are almost as bad as the disease. You end up assessing how functional your life is before going in.... and there are still shade of a story I read, in high school, of the room with the yellow wallpaper, to the treatment. That if you remove the offending organ, the uterus, all will be cured. It won't. And we need new treatments, new approaches, and a cure for this debilitating disease.