185

The last few months have been incredible in their lack of physical pain. It's like magic. No cramps, no 'tummy troubles,' nothing. I feel so good it's almost scary. Looking back, I wonder how I ever put up with so much pain for so long.

My hot flashes have subsided. I still get one now and then, but I've stopped having them relentlessly throughout the day. I can sleep through the night most nights. The emotional fluctuations are still present, but I'm doing my best to manage them.

The weight gain is a huge problem. Pun intended.

When I started the BatShots, I weighed about 173. That was already too high for me; I wanted to lose at least ten pounds from that point. I knew that weight gain was a potential side effect of the BatShots, but I hoped fervently that it would pass me by.

Over the last few weeks, my clothes have gotten tighter. My face is getting rounder. I hate it. I bought two new T-shirts that don't fit and I refuse to send them back because I should fit into a Large. This is my rationale. Or should I say my irrationale.

This morning I stepped onto the scale, reluctantly, half-squinting. I now weigh 185.

I haven't drastically changed my eating habits. I walk to school most days. This summer has been emotionally draining, and school is making me stressed, but surely not 12 pounds of stress.

Food is just so goddamned delicious. I'm working ridiculous hours every day trying to meet my various obligations and I hate the thought of committing even more time to working out. But I can't stay at this weight. I'm full of so much self-loathing and I know it's not healthy.

I must have some energy in the reserves. Time to call it in.

Good News, Everyone! [Sept 2012 Edition]

I don't feel up to detailing more of my treatment side effects here--some days I like to vent, other days it makes me feel self-aggrandizing and whiny. There have been a few developments in endomees in the news recently and I decided to link them here as they appear.

First of all, a long-term study was just evaluated for the use of plasma (read: LASERS!) in treating endomees. The study focused on the participants' fertility, which isn't really my bag, baby, but the results seem encouraging. According to the article,

"[t]he study...included 55 patients who had unilateral or bilateral ovarian endometriomas removed by PlasmaJet® ablation. After a mean follow-up of 20 months (range 12-39 months), 67 percent of women who wished to become pregnant had conceived, 59 percent of them spontaneously." 

The "PlasmaJet®" symbol and company information features prominently in the article, so I don't know if they paid for the study or what. But the data seems to offer hope to women with endomees, especially ones trying to conceive.

Reading this article reminded me of the comments of Libby Bruce at the Democratic National Convention this month. She discussed her struggles with endomees--a familiar story to sufferers. Unexplained abdominal pain, doctors telling her it was normal/expected/all in her head, desperation and fear. A nurse at Planned Parenthood finally diagnosed her, helped her get treatment, and Bruce eventually conceived and gave birth to her daughter, Ruby. Once again, of course, endomees is conflated with infertility. It's not that I mind treatments focusing on fertility. It makes me feel pushed a bit to the back, that's all.

At the end of last month, GUT journal released a report that suggested women with endomees have a higher incidence of Inflammatory Bowel Disease (IBD). Now this is a study I can relate to. This is a heavy journal article filled with a lot of information I didn't understand (the article itself requires a subscription, but the abstract was weighty enough), but the authors' summary is pretty straightforward:

"The risk of IBD in women with endometriosis was increased even in the long term, hence suggesting a genuine association between the diseases, which may either reflect common immunological features or an impact of endometriosis treatment with oral contraceptives on risk of IBD."

 My own experiences certainly back up this conclusion. Hopefully the study leads to more investigation into, and maybe treatment for, endomees-related IBD symptoms.

Heat Wave!

So the hot flashes are in full force. At first I wasn't sure I was even having them. It's the middle of summer after all. Being hot is my default state.

Gradually I began to notice the difference between being outside-hot and inside-hot. When I'm hot because of the weather, my skin gets warm. When a hot flash hits, it's like a furnace clicks on in the center of my chest. Heat spreads out from my core and radiates off my skin. I feel like I could power a small town with the energy blasting from my body.

The flashes don't last too long, and at first they were kind of cool (no pun intended). Normal normal normal I'M A MINI SUN! normal normal normal. Now, though, they're happening ALL THE TIME.

I estimate I have about one an hour when I'm awake. Hot/spicy food or exercise seem to trigger flashes. Last night I woke up three times gasping for air and scrambling to turn on the fan.

The novelty has definitely worn off.

However, the hot flashes are infinitely preferable to the endomees. I feel physically excellent, and going supernova regularly seems a fair exchange.

Reading Resources

Last year I decided I would never be able to manage my endomees without educating myself. I've always been a focused learner, soaking up all the knowledge I can from all the books I can get my hands on. Unfortunately, books on endomees tend to be pretty dry. Still, I was able to get some good information from the following. 

Endometriosis: A Key to Healing Through Nutrition

I'm a bit of a hippie (but not super hippie--sort of a moderate hippie) and I wanted a nutritional/naturopathic guide to endo as well as one centered in western medicine. I liked this book because of the personal stories scattered throughout as well as the nutritional plan (yeast free, alcohol free, caffeine free--not that I did that, but I liked that it was there) and supplement suggestions.

Some chapters of the book are more heavily technical, while others are more conversational in tone. Two chapters focus on fertility. Meal plans and blank record charts (to track periods, medication, and symptoms) are included in the appendices. Altogether I found it readable and informative.

"Endometriosis is a jigsaw puzzle of symptoms. You need to fit all the pieces together to provide clues as to what is happening within your body. This book will try to give you some of the pieces of the jigsaw, but you have to put them together yourself," (p 1).

Endometriosis: Current Management and Future Trends

To complement the nutritional book, I wanted a medical textbook to read. I got one in this hefty tome. The book was published in 2009, so the "current management" it refers to is probably 2005 and earlier. Still, it has a lot of detailed medical information on how endo starts (as best we know), how it develops, and what treatments exist.

What struck me about this book is the compassion the authors have for women who suffer for the condition. While the material is complex and dry, the writers strive to make the information personal and caring. It's not what I expected.

The book has lots of color pictures--squeamish, take note--and lists of academic references. Information is divided into eight sections: epidemiology, pathogenesis, diagnostic dilemmas, clinical relevance and treatment options, surgical treatment, classical medical treatments, new medical treatments, and future trends.

"From a woman's perspective...endometriosis is a disease of many illnesses which is surrounded by taboos, myths, delayed diagnosis, hit-and-miss treatments, and a lack of awareness, overlaid on a wide variety of symptoms that embody a stubborn, frustrating and, for some, chronic condition. These women are given a life sentence and are trapped by endometriosis," (p 3).

I'm currently reading Reclaim Your Life--Your Guide to Aid Healing of Endometriosis by Carolyn Levett. Once I'm done I'll toss up a review.

My friend sent me this picture.

No comment needed. Thanks, Bee.

Cautious Optimism

It's been two weeks since I started my treatment (NB: I have to think of a better term than "treatment." Maybe...the BatShots? I just saw Dark Knight Rises and it was awesome. Yeah, I like that.) 

Typing "bat syringe" into Google Images is even more horrifying than typing in "female robot." Don't do it.

It's been two weeks since I had my first BatShot. Maybe it's psychological, but up until yesterday I was feeling good. Really good. No tummy troubles, just a minor backache one day and a few strange cramps another. I was pretty excited.

Then three days ago I got my period, which the nurse said might happen the first month. I was a little miffed, but it wasn't so bad at first. Yesterday was the worst day, and it was a curl-up-under-the-covers and eat a lot of candy day. With my trusty Magic Bag and Advil. No need for Buscopan, though. I must say, out of all the crazy side effects I'm expecting, not having another period for 5 months is the most appealing. 

Least appealing? Hot flashes.
Image by Yizreel

I've also felt extremely fragile emotionally. If I had a TV, I'm sure I'd be crying at Hallmark commercials. And for all the people who didn't win gold at the Olympics. They tried so hard!

Hopefully my emotions will even out and my good days will continue to increase while my bad days fade away. Fingers crossed.

MENOPAUSE WHAT?? Seriously??

That was the text my friend Bee sent me after I told her what I'd be doing this summer.

I went to my doctor expecting to talk about surgery, birth control, and/or pain management. Instead he suggested menopause. Temporarily. 

"Let's shut everything down for six months," he said. "See if that helps." 

While part of me was intrigued by the mental image of myself as a cyborg fembot who can shut down bits here and there at will, most of me was taken up with a silent internal scream of, "But I don't want to go through menopause!"

I'm 34!

I went to find a picture of a female robot (turn on SafeSearch first) so I could make a joke about Rosie never having to worry about menopause. Then I discovered that "sexy Rosie Hallowe'en costume" was a thing. So there's that.

After some adjustment and a serious cry at Bee's house, I've gotten more comfortable with the idea of the Summer of Menopause. I'll be taking monthly injections of Lupron Depot to suppress my estrogen levels. I had my first one on the 18th of July and will continue through till the 18th of December. I'm still worried about the changes my body will go through, but I'm keeping up a mantra of, "It's only 6 months and you'll feel much better after."

The idea is that without estrogen, all my endomees will starve and shrink away, and I'll be left symptom-free for at least a few years. When the endomees do start growing back, we'll be able to manage them more easily than now, when they're allovertheplace.

So far I haven't experienced any side effects from the shot, other than feeling wicked tired these last few days (but that might be because I'm extremely busy at the moment). But it's only been a week. It can apparently take 2-3 weeks before the first side effects from the shot materialize. Here's hoping that when they do come, they're a minor irritation on my way to feeling healthier all the time.

Angry Meatwad

Alright, so: medical definition of endometriosis. 

Endometrium is the lining of the uterus, the stuff women slough off during their periods. In endometriosis, that lining grows on the outside of the uterus instead of the inside. I know, it's crazy! In Stage I endo, a little bit of lining grows outside the uterus, being all badass and like "I'm not going to play by your rules, uterus. You don't control me!" The severity progresses along to Stage IV, where the lining grows all over the place, and you get lesions and adhesions (where the growths sort of glue organs and tissue together), and big endometrioma (cysts) that grow on the ovaries and wherever else they want.

One of the weird things about endometriosis is that the staging of the disease does not correlate to pain experienced. A woman with Stage I could have really horrible pain and bleeding all the time, whereas other women (like me) have Stage IV but not much pain. Until recently, I hardly had any pain at all, even with such severe endo and having one ovary taken out due to endometrioma (word of the day: ovary removal has the incredibly fun title of 'oophorectomy'!)

Dan Savage once wrote a column where he imagined tiny gnomes stomping on barrels of champagne grapes  as the origin of vaginal secretions. I've always liked that image. In the same way, I always imagine my endomees as puffy pink, vaguely hostile blobs, sort of like a Pepto-Bismol colored Meatwad.  

If you don't watch Aqua Teen Hunger Force, well, you should. Go watch it now.

Endo is unusually mysterious given that it affects an estimated 40-60% of women with painful periods. No one really knows why it happens or why some women have pain when others don't. There's no cure for endo, but it's not fatal either. So that's something.

Since I'm not worried about fertility, more treatment options are open to me. I'll talk about my current crazy treatment in my next post.

Quality of Life

When I had surgery a few years ago, my doctor told me I might have to make a choice between preserving my fertility and getting a clean bill of health. "I want to be well," I told him. In that moment I knew for certain that I was never going to have children.

My husband and I had always leaned strongly towards remaining childless, so this was not a major sacrifice for me. It was more like the final stamp on a package already wrapped and waiting to be mailed. The choice was made and done with.

That choice shifted my focus on my endo, though. For many women, endo is the barrier between them and motherhood (a struggle made all the crueler given that pregnancy often relieves the symptoms of endo, sometimes permanently). For me, the standard became "quality of life."

At first, I could tell myself I was lucky--endo didn't affect my quality of life. I didn't have to worry about surgery again, because my quality of life was good. If I wound up on the futon with a Magic Bag watching Nostalgia Critic one or two days a month, that was a small price to pay for my overall good quality of life.

Slowly, though, those one or two days a month became four or five days a month. I had to cancel plans more frequently. The question became, "What is quality of life?" Is three days of illness a month okay, but four too much? How many times do I have to postpone my plans before it becomes unacceptable? I was often in pain, but not a lot of pain, and I knew so many people "had it worse." I started trying to quantify my quality of life mathematically: on a scale of 1 to 10, with 1 being hardly any pain at all, four days at 5 is equivalent to two days at 7, and last month I had that 8 but it was only for a few hours...then again, a whole week of 3 is exhausting...

Last year I wound up in the emergency room after a week of on-again off-again pain and constipation. That day marked the beginning of the downward slide until, finally, I was forced to admit that "quality of life" is a myth. There's just life. My life was one that involved pain and isolation, and I decided it didn't matter how mild the pain was or how infrequent the isolation. It's my life and I want to live it the best I can.

So no more mental math. No more brushing aside the bad days. No more comparing my pain to other peoples' and deciding things aren't so bad. I'm not going to discount myself by discounting my reality. 

Abandoning "quality of life" doesn't mean wallowing, or dwelling on my problems endlessly (that's what this blog is for). It means that I'm no longer willing to accept less than the best for myself. Whatever needs doing to make my life the best it can be, I'll do it.

Endomees, you are going down.

Covert Ops

I was going to do this right. Write up a week's or a month's worth of posts, all carefully structured to communicate a single theme or topic, before firing up this blog. This first post would be dryly witty, a touch self-deprecating, and contain a medical definition of endometriosis ("the disease spellcheck doesn't recognize!") and some background on me. Ambee. Oh and also an explanation of the title.

That is, after all, the way the books and eHow sites tell you to do it. Pick a target audience. Refine your message. What does your target audience need to know and want to hear? What do you want to tell them?

Then today I wound up, once again, soaking in a hot bath despite the record temperatures this summer, popping Buscopan and cancelling important plans. I thought: I am so tired of my body being a battleground. I hate that it's my own self against me. My little endomees grow so crazily. So many of my finite resources go to trying to keep my own insides in check.

Maybe that's why I don't want to think about a target audience while I'm fighting my personal battle against endo. I'm sick of being in a war. A wee civil war, just one soldier, and a covert war at that. All the words surrounding endo are ones you generally don't use in public. I've developed polite code. My back hurts (I'm constipated). My tummy hurts (I have cramps). I don't feel well today (I'll be on the toilet for the next hour). Even the medical terminology surrounding endo--uterus, ovaries, menstruation, bowels, adhesions--is taboo. One can speak frankly about a broken leg or influenza, but try bringing up how your uterine lining grows on your bowels and makes it hard to poop. Watch everyone try to keep a straight face. It's easier to wage a secret, silent war on your own.

It's not fatal, but it's wearing.

If you're here, you either love me or have endomees yourself. If it's the former, I'll try to ignore you. Otherwise I'll start self-censoring out of guilt and embarrassment. If it's the latter, welcome. I hope my experiences will help arm you for your own covert ops.