When someone is diagnosed with a complicated disease, you don’t expect them to breathe a sigh of relief. But that’s exactly what I did when I finally learned that the mysterious pains I’d been plagued by for five years had a name: endometriosis.
I first noticed strange things happening with my body during the spring of 2006. I’d feel nauseous out of nowhere and experience sudden and sharp pains in my stomach. Both my menstrual cycles and my bowel movements became increasingly uncomfortable, I never seemed to get enough sleep, and I developed random food sensitivities that left me vomiting for days. It was hell.
Even planning a dinner out with my husband created a series of what-ifs. What if the food made me sick? What if I ended up too weak to go into work again? What if I landed in the hospital? I felt like I was losing control of my body — and my life.
In the beginning, I was convinced I had irritable bowel syndrome (IBS). I began keeping a food journal and avoided foods that my body no longer seemed to tolerate well. But when changing my diet didn’t make a difference, I headed to the doctor.
Over several appointments, I was told I had everything from IBS to chronic anxiety disorder. But no matter what treatment I tried, the symptoms persisted. Intuitively I knew my body was trying to tell me something, so I continued the quest for a different diagnosis.
This determination finally paid off in the summer of 2009. After some investigative work on the web, I thought it might be endometriosis and asked my doctor to check for it with a transvaginal ultrasound. It revealed large, bleeding cysts on my ovaries. I also discovered that my plan to start a family might be in jeopardy, since up to 40 percent of women who suffer from endometriosis can’t have children.
Sleuthing out the symptoms
Despite the fact that as many as one in 10 women suffer from it, endometriosis is a complicated, somewhat nebulous disorder that no one fully understands. Even the Endometriosis Association calls it one of the most puzzling conditions facing women today. “There are certain patterns of symptoms that may suggest endometriosis, but some women’s symptoms can fall outside those patterns and that can make diagnosis difficult,” says Dr. Catherine Allaire, acting medical director of the B.C. Women’s Chronic Pelvic Pain and Endometriosis Clinic in Vancouver.
Here’s what we do know: It’s a disease affecting a woman’s hormones, immune system and digestive tract. Symptoms include pelvic discomfort; pain before, during and after menstruation; severe menstrual cramps; heavy or irregular menstrual bleeding; pain during or after intercourse; intestinal distress; uncomfortable bowel movements; lower-back pain; and fatigue. “The challenge in coming to a diagnosis is that a woman does not necessarily experience every symptom. Some will have minimal or no signs at all,” says Dr. Kay I. Lie, a Toronto-based gynecologist.
When you have endometriosis, the tissue lining the inside of your uterus that’s shed every month during menstruation doesn’t leave your body the way it normally would. Instead, these cells attach to tissue outside your uterus, causing growths called endometrial implants. These implants usually form on the ovaries, the outer surfaces of the uterus, intestines or bladder, or the surface lining of the pelvic cavity. Since endometrial growths outside the uterus have no way of leaving your body, the result is a mix of internal bleeding, painful inflammation and eventual scarring. “The location of the implants has a great deal to do with the types of symptoms a woman will experience,” says Lie.
Like me, Susan Forint suddenly had symptoms appear out of nowhere about eight years ago. “It started with a nagging pain in my tailbone and abdominal discomfort,” the 41-year-old marketing manager from Toronto says. “Then I noticed the pain increasing before my period.” She tried acupuncture and chiropractic treatments, but nothing helped. “It’s surprising how much pain you can adapt to as your day-to-day activities tick along,” Susan says. “But now and then I’d realize I shouldn’t be in so much pain, that something was causing it — and something should be done to figure it out and treat it.”
Susan’s symptoms eventually began to affect her quality of life. “It even hurt when I rolled over in my sleep,” she says. “And throughout the day, I’d always have to adjust the way I was sitting because of the pain in my tailbone. I got really frustrated and was determined to find out what was happening to me.”
Making the diagnosis
“It can take six to 12 years to get a diagnosis for endometriosis,” says Lie. “This is because the disease mimics so many other conditions, such as IBS.” While doctors can guess a woman has endometriosis based on symptoms and ultrasound readings, the only way to know for sure is with laparoscopic surgery. (A laparoscope is a fibre optic instrument that is inserted into a tiny incision in the abdomen to help surgeons locate what they need to remove and repair.) Then, the severity of the condition can be categorized based on the location, type and extent of growths and scarring — from stage 1 (isolated areas of endometrial tissue growing outside the uterus) to stage 4 (both superficial and deep implants growing outside the uterus, as well as large adhesions in the pelvis and/or cysts on the ovaries).
My ultrasound revealed that my endometriosis seemed to be quite advanced and the cysts were growing, leaving my ovaries in poor condition. Laparoscopic surgery later revealed that my endometriosis was at stage 3 — and I was told it would make it almost impossible for me to conceive naturally.
The first question I had was “Why?” Of course, the “why” is just one of the many frustrating things about endometriosis. There’s no concrete evidence that points to a single reason, only theories. One of those theories suggests the condition is caused by retrograde menstruation — meaning that during your period some menstrual tissue backs up through the Fallopian tubes, implants in the abdomen and grows.
Research shows that most, if not all, women experience some menstrual tissue backup. Add that to a low immune system or hormonal imbalance and, some experts believe, this could be all it takes to allow the tissue to take root and develop into full-blown endometriosis.
Another theory revolves around our increasing exposure to chemicals and pollutants that can cause free radicals (destructive molecules that can disrupt hormone function) to run rampant in the body. Animal research sponsored by the Endometriosis Association found a link between dioxin exposure and endometriosis. “Whatever the cause of endometriosis may be, I don’t think it’s a coincidence that with the increase of chemicals introduced in our environments, we have seen an increase in hormone-related illnesses,” says Lie.
Women with endometriosis are usually encouraged to start a family sooner rather than later, as infertility is more likely the longer the disease persists. As a bonus, pregnancy can also relieve symptoms in some women because of the hormones released. Although it can temporarily help regulate the disease and offer some relief, pregnancy is not a cure. If endometriosis isn’t treated, the symptoms could recur shortly after the return of menstruation, says Allaire.
Finding a treatment that works
While there is no definitive cure for endometriosis, Allaire says the most effective therapies stop the menstrual cycle to decrease hormonal stimulation from estrogen (which your ovaries naturally produce each month) on endometriosis deposits. These therapies include oral contraceptive pills and progestins (oral, injectable or in IUD form) that suppress reproductive hormones altogether and halt the menstrual cycle to give your body a break from the symptoms.
When Susan’s transvaginal ultrasound didn’t reveal any large masses, a gynecologist recommended she start taking continuous birth control (back to back, without a break). “I achieved some pain relief from taking the pill,” Susan says. “But it wasn’t a significant reduction.”
My doctor also prescribed birth control pills, but since we were hoping to beat the odds and start a family, I decided instead to go on a “natural feel-good crusade,” educating myself on ways to manage the disease and increase my fertility. I chose biweekly reflexology treatments and a diet that included eating organic foods and cutting out alcohol and caffeine. I also started taking supplements and exercising regularly. Although I did feel better, it wasn’t enough to convince me that I had the disease under control.
Meanwhile, Susan’s gynecologist suggested laparoscopic surgery to remove the implants. “Pain can be very effectively treated this way,” says Dr. Nicholas Leyland, chair of obstetrics and gynecology at McMaster University in Hamilton, Ont. “These minimally invasive, or keyhole, surgeries can even be done as day procedures.”
Studies show that laparoscopy can reduce pain for 50 to 90 percent of women — and over half are able to get pregnant afterwards. Lie agrees that laparoscopy is a good option for many women, but he also recommends life- style changes, including a controlled diet, exercise and breathing techniques to help cope with pain.
Susan’s doctor guessed that she had stage 2 endometriosis, and surgery revealed she had small growths on her left ovary and on the ligament down the left side of her tailbone, all of which were successfully removed. Since her surgery, she’s kept the disease in check with birth control pills. Susan was glad she sought out a full team of health care professionals, including her GP, chiropractor, gynecologist and naturopath, to help her get the best treatment. “It’s been three years since my surgery and at times I have to stop and really try to remember what the pain felt like, as I experience so little now,” she says. “Sometimes, it takes coming at a challenge from a few directions to find the right solution.”
I also chose to have laparoscopic surgery — and it was a success. Over three hours, doctors removed scar tissue and a large number of endometrial implants in my pelvic area, along with the cysts on my ovaries. After about a week, I was able to return to a fairly normal routine, but it took about eight weeks to recover completely. It was then I noticed that I had more energy and less pain.
With a new sense of confidence, I started back on a strict diet, supplements and plenty of exercise and rest — it had been a long journey and I wanted to keep the condition under control naturally, as best I could. For the first time in years, I felt amazing and greeted each day with optimism.
Then, just three months after the surgery, I became pregnant, even though I’d been told after my operation that my chances of conceiving would be slim due to the extent of my endometriosis. Today, I’m happy to report I’m feeling great and recently celebrated the birth of a healthy baby girl. I can’t wait to see what the future holds for both of us.
Five ways to take charge
Suspect you have endometriosis? Acting quickly may help you get the disease under control.
1. Don’t ignore your symptoms. Keep a record of when you feel discomfort, rate your pain between one and 10, pinpoint where it occurs, and give all that information to your doctor.
2. Ask your doctor for a pelvic exam. A health care professional can determine the size and position of the pelvic organs and feel for any abnormal growths.
3. Ask to see a specialist, such as a gynecologist, right away. They will be more knowledgeable about the condition.
4. Ask for a transvaginal ultrasound. This is a pelvic ultrasound that uses an internal probe to get a closer look at your reproductive organs.
5. Explore your options. Hormone therapy, birth control pills, over- the-counter medication, surgery and lifestyle changes all might make a difference.
How healthy habits can help
Go on your own natural feel-good crusade with these lifestyle changes that can help relieve the symptoms of endometriosis.
Exercise: Working out at least three times a week can help reduce pain and cramping. Begin with low-impact activities, such as walking, cycling, swimming or stair climbing.
Nutrition: “Eating well can play a key role in keeping endometriosis under control,” says Natasha Paroutis, a Toronto-based dietitian. A healthy diet rich in raw fruits and vegetables, particularly dark green vegetables, such as spinach, rapini and broccoli, is key to helping control symptoms of the disease, she says. And drink plenty of water and increase your fibre intake to help decrease any related inflammation in your bowel.
Supplements: “In a perfect world, the best source of vitamins is a well-balanced diet,” says Paroutis. But she recommends taking supplements to boost your intake of omega-3 fatty acids. Omega-3s are important because they help regulate hormonal imbalances and can help decrease the severity of endometriosis symptoms by reducing inflammatory responses in your body.