What it's like to be a mom with endometriosis

One in 10 Canadian women suffers from endometriosis—a painful, chronic and often misdiagnosed disease that causes internal bleeding and scarring during your period.

“You’re having a girl!”

On our drive home from the 20-week ultrasound, my mind was whirling with excitement. I pictured my future daughter wearing the red flowered dress my mom had made for me when I was four. My husband and I imagined walking her down the aisle at her wedding someday. I briefly felt relieved we would avoid the whole circumcision debate, but then another thought hit me: I really hope she doesn’t have endometriosis.

An estimated one in 10 Canadian women of reproductive age—or 176 million women worldwide—suffers from endometriosis, and I’m one of them.

It’s an often-painful, always-puzzling disease, where tissue closely resembling endometrial tissue (which should only be found inside the uterus) is found outside the uterus, within the abdominal cavity, where it definitely should not be. This tissue often sticks to the bowel, bladder, Fallopian tubes, uterus, ovaries, or ligaments and muscle tissue within the pelvis. The tissue bleeds inside the abdominal cavity, likely through something called retrograde menstruation, in which menstrual blood backs up through the Fallopian tubes, and the immune system doesn’t find and destroy the cells of that rogue tissue as it should. This can result in scarring, cysts, fertility problems and pain that ranges from mild to excruciating.

Doctors believe there is some kind of genetic link to endometriosis—you are about seven times more likely to develop it if you have a mother or sister with the disease, which is why I was fretting about whether my daughter would grow up to have it. Some women experience few or no symptoms, while others have profound pain, gastro­intestinal problems such as constipation or diarrhea, or bladder issues like painful peeing. Some have no trouble getting pregnant; for others, like me, it takes years.

“There’s a misconception that a very painful period is normal, that it’s just a part of life and you need to deal with it,” says gynaecologist Herb Wong, who specializes in endometriosis surgery at Toronto’s Sunnybrook Health Sciences Centre. “It’s an attitude that may get handed down from mothers to daughters.” That misinformation, combined with the need to sometimes rule out other conditions, such as ovarian cysts or pelvic inflammatory disease, or physicians who aren’t familiar with endometriosis and may dismiss symptoms, is often why it takes an appalling average of seven to 12 years to be diagnosed.

Endometriosis usually can’t be detected through a test like an ultrasound. Laparoscopy, a day surgery, may be necessary for diagnosis (or for ruling out the disease). Under general anaesthetic, small five- to 10-millimetre incisions are made in the abdomen, and the surgeon uses a tiny high-definition camera to look at the pelvic area and identify endometriosis (patches called lesions), scar tissue (or adhesions) and endometriomas (dark-coloured cysts, also known as “chocolate cysts,” in the ovaries).

It used to be that you almost never heard about endometriosis unless you had it. That seems to be changing, though, thanks in part, perhaps, to some vocal celebrities—Lena Dunham made headlines when she announced she’d be skipping the press tour for the latest season of Girls because of a rough patch with her endometriosis, and Padma Lakshmi regularly advocates for awareness and research after a 20-year struggle with the disease. (Jillian Michaels, Cyndi Lauper, Hillary Clinton, Whoopi Goldberg, Susan Sarandon, Julianne Hough and Dolly Parton are also in the endo club.) For such a common women’s health issue, there hasn’t been nearly enough research or support.

While there are a variety of treatments available, there is no cure for endometriosis (unless you consider menopause a cure). In addition to offering pain medication, doctors usually start by prescribing estrogen-progesterone therapy in the form of a patch, vaginal ring or birth control pills, which are sometimes used continuously (that is, without a one-week break) to stop periods. Estrogen stimulates endometriosis; the goal is to tip the hormonal balance so there’s more progesterone than estrogen. Progestin-only therapies (progestin is a form of progesterone) include a Mirena IUD, or oral or injectable birth control such as Visanne or Depo-Provera. Then there are heavy-duty hormone treatments, such as Lupron or Danazol: Lupron will lower estrogen and progesterone to menopausal levels, but it can also cause menopausal symptoms. Danazol can have androgenic effects, such as unwanted hair growth, acne and deepening of the voice (sometimes irreversible).

If those prescriptions aren’t helping the symptoms or you are having trouble getting pregnant, the next step can be laparoscopic surgery, in which a surgeon makes small incisions in the abdomen, and endometriosis lesions and cysts are removed by excision (cutting them out) or ablation (burning or cauterizing the top layer). “If you just ablate superficially, you may miss a lot of underlying endometriosis [so pain may come back]. When we excise lesions, we cut out the abnormal part until we get to normal tissue,” says Wong. I got lucky: When I had surgery at age 27, I had one of Canada’s top surgeons, who excised my endometriosis. Today the procedure is more common, but depending on where they live, too many Canadian women still have access only to ablation surgery.

Non-medical and non-surgical approaches are also an increasingly important part of treatment. “Many endometriosis patients respond well to surgery and medications, but others, probably because they’ve been in pain for a long time or haven’t had adequate treatment early enough, can develop a lot of coexisting pain conditions that require the help of physiotherapy, counselling, pain management education or mindfulness exercises,” says gynaecologist Catherine Allaire, the medical director of the BC Women’s Centre for Pelvic Pain & Endometriosis in Vancouver.

Because there is evidence that endometriosis is an inflammatory condition, Allaire recommends trying an anti-inflammatory diet, such as Dr. Weil’s Anti-inflammatory Food Pyramid (available free online), that emphasizes fruit, vegetable, fish, beans, legumes and healthy fats. She adds that removing gluten and dairy can help some endo patients with bowel problems.

There’s a lot going on with endometriosis—the uncertainty about fertility, the effects of pain and treatments, the love-hate relationship with a reproductive system that creates both life and pain. So what is it like to be a mom with endometriosis?

Fertility and Pregnancy

“When you start reading about endometriosis, infertility and chronic pain online, it can get a little terrifying,” says Allaire. “Of course, those things do happen with endometriosis, but the majority of women still get pregnant, and the majority still have functional lives and manage their pain well.”

About a third of women with endometriosis have trouble conceiving. The problem may be structural, like scarring that blocks the Fallopian tubes; another possibility is that active endometriosis lesions release inflammatory substances, making the environment hostile for conception, says Wong. Allaire points to a recent large, long-term study in Scotland that found women with endometriosis had an increased rate of miscarriage and ectopic pregnancy, as well as complications like preterm birth and bleeding during and after pregnancy, although the exact reasons are not yet known.

Jenn Gates-MacKinnon of Ottawa, who was diagnosed in her early 20s, had her daughter, Maddie, now almost six, after five years of trying to conceive, with four miscarriages along the way. Her case is severe and complicated, and at her six-week postpartum appointment, she was told she should not get pregnant again. “I feel so sad and angry about that because we really wanted to have more than one child,” Gates-MacKinnon says. “At the same time, we have our beautiful daughter, and eventually we may adopt.

Some women, like Heather Zimmer of Toronto, only discover they have endometriosis when they’re trying to get pregnant. Zimmer and her husband, Michael, visited a fertility clinic when she was 35, after many months of trying to conceive. A battery of tests revealed a variety of reproductive issues, including endometriosis. “I had never heard of endometriosis before,” she says. “I thought the pain I had during my period and during sex was just what women were supposed to go through.” Shaken by the diagnosis and awaiting surgery, Zimmer nonetheless found herself staring at a positive pregnancy test just a few months later, through a blur of happy tears. Her son, Wilhelm (“my miracle child!” she says, only half-jokingly), is now four. They considered a second but ultimately decided they were happy with “one and done.”

If having sex hurts (and hurts more during ovulation) that obviously means baby making will be more involved than tossing away the contraception and opening a bottle of wine. I had used birth control pills for years to control my symptoms (in addition to suppressing your body’s estrogen levels, hormonal birth control prevents ovulation and can make periods lighter and more regular), so the idea of not taking the pill was unsettling—I didn’t know if my endo would return. As it turned out, I was mostly OK during the four years it took to get pregnant.

Endometriosis patients sometimes also get the “it’s now or never” advice, with doctors counselling them to have a child sooner than planned. Ashley Romanko of Edmonton was diagnosed with endometriosis when she was 20 and underwent surgery but continued to have near-constant pain. She asked her doctor what the next step was. He answered, “get pregnant”—an old-school strategy that’s now been debunked. Because pregnancy brings higher progesterone levels, it often suppresses endometriosis symptoms, but it’s not a cure, and the pain will almost certainly come back after you give birth. Romanko and her husband talked it over, and even though it was a few years earlier than they had planned to havechildren, they decided to go for it, in case the endometriosis affected her fertility. She conceived quickly and is now the mom of Alexandra, 8, and William, 4. Romanko’s pain continued throughout her pregnancies, but she did get a break for a year while she was breastfeeding her son—estrogen levels are lower when you’re nursing.

Chronic Pain

Why do some women, including Romanko, have significant daily pain and not just during their periods? Women with endometriosis produce more prostaglandins—hormone-like compounds that cause cramping in the uterus. The lesions can produce extra nerve tissue, as well as substances that cause inflammation and pain outside of menstruation. If endometriosis isn’t treated and there’s long-term pain and nerve stimulation, it can lead to what doctors call “referred pain,” which means pain is felt in nearby organs, skin and muscles. Finally, scarring can deform pelvic anatomy, like an ovary or part of the bowel stuck to the abdominal wall with scar tissue.

Leslee Klinck of Winnipeg found that her pain seriously affected her relationship with her kids. After agonizing symptoms, countless tests and referrals to specialists, she was diagnosed with endometriosis at age 42, when her kids, Andrew and Ally, were seven and 10. “For two and a half years before I was diagnosed, I would come home from work and go to bed with a heating pad. I couldn’t function at the end of the day, and I missed out on so much of my kids’ lives,” she says. “They would come to talk with me, but I’d be short with them or I’d lie there with my eyes closed, not paying attention. I was in constant pain.”

Klinck had ablation surgery at 40, which helped for three months, but then the pain returned, and she had a hysterectomy at 43. “I was desperate to get my life back,” she says bluntly. “We had already decided not to have any more kids—that made the decision a little easier. But I was emotional afterward. It sinks in that there’s no going back.”

Depending on a woman’s age, a hysterectomy (surgical removal of the uterus) isn’t the go-to solution for endo that it used to be. “This procedure has a place in the management of many gynaecological conditions, but its place is getting less and less prominent,” says Allaire. “Now we reserve it for when there’s a failure of more conservative treatments [like hormones or surgery], or if the side effects of the conservative options are intolerable, or when a woman has completed her child-bearing and really wants some definitive treatment to address cramps and abnormal bleeding.” Adenomyosis, a condition related to endometriosis in which the tissue invades the muscles inside the uterus, causing tenderness and pain during periods and sex, is another reason to consider hysterectomy, says Wong.

After Klink’s hysterectomy three years ago, her pain is much improved, but she suspects the endometriosis on her bladder, which her surgeon was not able to remove, is starting to flare up. “A hysterectomy is not a cure,” she says. If your surgeon removes the uterus but not every bit of endometriosis tissue elsewhere, you can still have discomfort. The fallout from the years she was in agony lingers, too. “All those years of not being very approachable still affects my family,” she says. “My kids got used to going to my husband. They still look to him; they don’t come to me first. That can hurt.” Klinck thinks her children are starting to understand more as they get older, though. In May, the kids helped her plan an endometriosis awareness rally.

Gates-MacKinnon visits a pain clinic every six weeks to have a nerve block, an injection into her hip, to help control her suffering. A complication with the nerve block last year left her with limited use of the left side of her body, so she walks with a cane and takes a variety of steroids and pain medications. “I take my pills to walk and function, and to be the energetic mom I need to be,” she says. “My family deserves that and so do I.” Her mother-in-law worries about how her condition affects Maddie, but Gates-MacKinnon says her daughter is handling it well. “She’s incredibly empathetic. Other moms in my endometriosis support group say the same thing: Their kids are being raised to be compassionate and aware that people aren’t always healthy, and that it’s OK to offer help.”

Like me, endo moms raising girls worry about the genetic link. “It’s definitely a big fear of mine,” say Klinck, whose daughter is 16. “One of the good things about going through this is that I do know what to look for. And I can advocate for Ally if we need to.”

Endometriosis is a complex, frustrating disease. It touches some women lightly while others stagger under its weight. “It’s important to have hope and to take steps with lifestyle changes to manage inflammation, so women don’t feel endometriosis is a kind of monster invading them,” says Allaire. “And it’s important to find support, because there is often a sense of overwhelming loneliness.”

Hope and support—and informed doctors who did not dismiss my symptoms when I started looking for answers in my 20s—have done a lot for me. I keep my fingers crossed that the excellent excision surgery I had 16 years ago completely removed the majority of my endometriosis lesions and that I’ll have no future flare-ups. I still have pain near my cervix that no treatment has been able to fix—it’s a daily discomfort, but it’s not debilitating. I have a Mirena IUD that slowly releases endometriosis-suppressing progestin, and my husband and I are happy to be a family of three. I try to eat well, exercise and see a physiotherapist once a month, which has been remarkably helpful. She applies pressure to the tight muscles and ligaments in my hips, pelvis and belly that have been tensing against pain for all these years (for a long time, it felt like someone was pressing the point of a screwdriver into my pubic bone).And I play with my sweet, smart six-year-old daughter, Jane. I may have endometriosis, but I’m so grateful to be a mom with endometriosis.

Symptoms of endometriosis include:

– painful periods that don’t respond to pain medication

– heavy menstrual bleeding

– fatigue

– chronic pain between the belly button and pubic bone

– pain during ovulation

– pain during sex

– painful bowel movements during periods or all the time

– bloating, diarrhea or constipation during periods

– infertility

Additional Resources:

The Endometriosis Network Canada – A not-for-profit organization that provides information about symptoms, diagnosis and treatment; online resources for finding a specialist; questions to ask at medical appointments; and links to Canadian support groups. endometriosisnetwork.com

BC Women’s Centre for Pelvic Pain & Endometriosis – Up-to-date info about treatment and research via webinars, videos and information sheets. In May 2017, they’re hosting the World Congress on Endometriosis in Vancouver. womenspelvicpainendo.com

International Pelvic Pain Society – Click on the “Patients” tab to find a physiotherapist or other health care provider who is experienced in treating pelvic pain. pelvicpain.org

Endo What? – This documentary premiered in spring 2016 and looks at the physical, emotional and financial impact of the disease and advocates activism for research and awareness. endowhat.com

A version of this article appeared in our Summer 2016 issue, titled “A vicious cycle,” pg. 28-31.

Read more:
Your period after baby
Medical discovery: why multiple miscarriages happen
I’m not ashamed of my infertility

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