Endometriosis: After my diagnosis

This post is also about menstruation. You’ve been warned.

Part one of this story can be found here.

My diagnosis was just the beginning. Because there is no cure for endometriosis. Nobody knows what causes it; without that knowledge, the best I can hope for is symptom management. Which is not as easy to achieve as it sounds; what works for one woman won’t necessarily work for another.

The search for relief

Somebody floated the idea that women didn’t have to bleed every month. What if they had 3-4 periods a year? That wouldn’t be so bad, would it? I talked to my doctor about it, and we decided to give it a try. Not using the spiffy (expensive) pill they’d made just for that purpose, but just with my normal pill. I merely threw out the placebo pills and started a new pack after 21 days. I had to get another note from my doctor, for the pharmacy, so I could get the new pill packs every 3 weeks as opposed to every 4 weeks. (The insurance company took umbrage, until my doctor explained that I was taking the pill for a medical condition, not so I could be promiscuous and get out of having periods.)

Though I took the placebo pills after 3 months, like I was supposed to, I didn’t have a period for 6 months. That one was a doozy; I missed a week of work. I began to suspect that this method wasn’t going to work so well for me. It was like I was making up for lost time with that period, like it was 6 months’ worth of periods rolled into one. And given the choice, I’d rather have my periods one at a time, thank you.

I also developed the worst breast cyst of my life. I woke up in the middle of the night with a golf ball of fire in one breast. It was benign, thankfully. But it’s never really gone away; I’ve had it drained three times since then.

So. Continual synthetic hormones are not for me. I went back to my monthly cycle.

I should take a moment to mention the costs associated with all of these medications. I truly was at the mercy of my insurance company. Sometimes my pills were $10 a month. More often, though, they were $35 and up. One year, I was spending $50 a month on them. And that’s just the birth control pills – there’s also the pain medication to consider. Drugs like naproxen, Mobic, Lyrica, Darvocet. Darvocet was the cheapest – $10 a month. But I couldn’t take Darvocet and drive, so I used it sparingly. Naproxen was the best for getting me back to my regularly scheduled life, but I quickly built up a tolerance to it, rendering it ineffective. So I also used it sparingly. Mobic was great until they took it off the market because of scary side effects. Lyrica didn’t do a thing for the pain, but it made me care a little less about it.

So my options were to writhe in pain on the couch with a buzz or without. That was the best modern medicine could do for me. And I paid dearly for the privilege – sometimes upwards of $100 a month.

I could’ve bought a car with the money I spent on this disease.

Because the pain was getting worse, and the medications were becoming more expensive and less effective, I started doing my own research and trying alternative treatments. Diet modifications. Fistfuls of supplements. Massage. Yoga. Meditation. I’d have tried acupuncture if I could have afforded it. I did manage to identify some triggers (soy in particular), and found some stretches that took the edge off the worst pains, but nothing really helped. I started buying heating pads two at a time so I had a backup in case one died. (And I used them so much that I did wear out several.) I kept a spare at the office, too, just in case.

In one of the books I read on the subject, the author asserted that menstruation should “never, ever hurt.” I burst into tears when I read that sentence. I’m misting up now, just writing about it. Because I’ve spent so much of my life in pain, and nobody has been able to do anything about it.

Pregnancy would most likely help, my doctor informed me. But it’s obviously not something to enter into lightly. Or at all, if you don’t have a father handy. Which I didn’t for much of my young adult life. Though I did research procuring some donor sperm at one point.

But finally, my chance at motherhood arrived.

The pregnancies

When I was 35, my partner and I decided to try for a baby. We’d been dating for three years, and felt it was a natural progression in our relationship. So I went off the pill, and almost immediately I noticed an improvement in my cycles. Within a few months, my formerly erratic cycle settled into a fairly regular 29-day pattern. (So much for the pill’s regulating effects.) My skin also cleared up, not that it was ever that bad to begin with. My periods were lighter, and less painful, and my PMS was less onerous. It was still no walk in the park, though. And because I was trying to get pregnant, I couldn’t take anything for the pain until I knew for certain I’d not conceived that month – until I saw blood, in other words. By this point, I typically experienced cramps and back pain from ovulation through day 3-4 of my cycle. And I couldn’t have so much as an aspirin.

Not that it would have helped anyway.

Finally, after a couple of miscarriages, I got pregnant. And it was glorious. Yes, I had morning sickness (and afternoon/evening/overnight sickness). Round ligament pain. Tender breasts. Dizziness. Headaches. Heartburn. Backaches. Swollen ankles. Carpal tunnel pain. But I didn’t have cramps.

It was the best I’d felt since childhood.

After I gave birth, I experienced postpartum hemorrhaging. But I didn’t realize it at first. Because I was told to expect heavy bleeding. Turns out they meant heavy like my periods are heavy, not “soak an overnight in 15 seconds” heavy.

For whatever reason (I suspect the hemorrhaging was a factor), I was unable to breastfeed my daughter; I simply did not produce enough milk. So my periods returned 3 months postpartum. They were heavier than normal (my black jeans saw more wear than they’d ever experienced), but not so painful at first. Then each passing cycle brought more pain, until I was back on the meds again. But not the pill, because who needs that noise? Also I’m old now, and they don’t like to give the pill to old women.

A couple of years passed, and we started talking about a second baby. I wanted there to be at least three years between the kids, because I didn’t want two kids in diapers at the same time. So we waited, and when my daughter was 2 and a half, we decided to try again.

The month we decided we’d start trying, I missed my period. I also missed the next two periods. Finally had to go to the doctor for a magic pill to start me again. Which is always unpleasant. But you can’t exactly try for a baby if you’re not having periods, now, can you?

A few months later, after a couple of chemical pregnancies, one finally stuck. I was pregnant with my son.

I had worse morning sickness this time around. Chills. Dizzy spells. Back pain and front pain and side pain. Anxiety attacks. Heartburn. Insanely itchy skin. But no cramps.

It was marvelous.

Breastfeeding and beyond

Four days after I gave birth to my son, I awoke to breasts the size of my face, and understood once and for all that my inability to breastfeed my daughter was through no fault of my own. I happily nursed my son, thankful for this second chance at breastfeeding.

My bleeding was already winding down before I left the hospital. (!) I was far more mobile and able-bodied than I’d been after my first cesarean: I was going for walks at 3 weeks, doing crunches at 6 weeks. Increases in activity would occasionally trigger another bout of bleeding, but I was pretty well done with pads by 8 weeks.

And I’ve not bled since. My son, now nearly 15 months, still nurses 4-5 times a day (including overnight), and that’s apparently enough to keep my cycles at bay.

I’m dreading their return. It’s been a wonderful couple of years. I’m already looking ahead to menopause with more anticipation than dread.Sometimes I think the best possible scenario is one in which I go straight from breastfeeding amenorrhea to menopause. But deep down, I know that won’t be how it goes. My period will have to have one last hurrah before it leaves me for good.

Probably just in time for my daughter to start having her own periods.

Still no cure

I wish I had better advice for my daughter. Do yoga. Meditate. Don’t eat soy. Keep a spare heating pad. Get pregnant. These are my pearls of wisdom. And they’re not enough. She (and I) will likely bleed until at least age 50. That’s 36 years of bleeding, over 430 periods (not including the missed cycles, of course) – around 8 years of our lives spent in agony, all together.

And there’s still no cure.

There’s not even really a decent treatment.

That’s unacceptable to me. The thought that my bright, vivacious daughter could be incapacitated for nearly a decade of her life by a natural bodily function. Whatever I can do to bring awareness to this condition, I will do.

No girl, no woman should have to endure this.

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5 thoughts on “Endometriosis: After my diagnosis

    1. I’m not sure of the statistical probability, but anecdotal evidence indicates that endometriosis goes back at least three generations in my family. Neither my mother nor my grandmother had sisters (and I’m an only child), so it’s hard to say exactly how prevalent it would have been otherwise…but still, I do not care much for the odds.

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      1. That’s hard. Let’s hope she defies the odds :-)

        I’ve been thinking since reading your posts. I recall a woman at work who suffered from endometriosis and who often needed time away from work. I was sympathetic yes, but really, I had no idea. It’s not a condition that’s much talked about is it… Exactly what you’ve been saying :-(

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      2. I once read that Marilyn Monroe had it, and that she refused to work during her period, even going so far as to put it in her contracts. The article in which I read this acted like she was being a diva for doing so. I don’t know if that is true or not, but if so, I totally understand why she would insist upon something like that. My job involves sitting on my butt and wiggling my fingers on a keyboard. I don’t know how women with more active jobs do it.

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