20 Years of Mysterious Pain: How I Was Finally Diagnosed with Endometriosis

Excruciating cramps, heavy periods, chronic fatigue, nausea -- my list of symptoms went on and on. But none of my doctors could figure out what was wrong with me. Until one of them finally did.
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I couldn't take it anymore. I'd spent all night in the ER of a busy Atlanta hospital, thinking I had food poisoning. Terrible stomach pain, cramping, diarrhea, nausea and vomiting -- I felt like I was exploding inside. Plus I was so tired I could barely move. But the doctors couldn't find anything wrong with me. They told me to stay hydrated and sent me home.

It was 2005, just two months after my second daughter, Ryan, was born, and I needed some answers. Was I just an exhausted mother? Was it something I ate? Granted, for years I'd had gut pain that seriously limited what I could eat. I hadn't had a slice of pizza, a cupcake or French fries in ages -- and believe me, I love them! Anything with too much fat, sugar or caffeine could set off cramping, nausea and diarrhea. I couldn't drink alcohol at all. I always needed to be near a bathroom. I'd undergone countless medical tests, and by process of elimination my gastroenterologist determined I probably had irritable bowel syndrome. But believe me, this was way more than irritating.

There's more to the story of My Life in Symptoms: I also had super-painful, heavy periods, something that started when I was a teenager. In college I remember feeling so sick during my period I'd be in bed for three days, thinking, "This sucks." Ibuprofen didn't help much; neither did birth control pills. The frustrating part was that my ob-gyn couldn't find a reason for it, either. So I figured it was just my lot in life. My gut troubles seemed to ramp up during my period, too -- and the symptoms got much worse after my pregnancies. I wondered whether all my symptoms could be related. Maybe my doctors had been missing something.

The day after my ER incident, I marched into my ob-gyn's office, determined to get some answers. My doctor told me she couldn't see me since I didn't have an appointment. So much for female empathy. I broke down and started sobbing. A senior doctor who heard me crying came out and said, "Come with me." After he asked me about my symptoms and did an exam, he said, "I think you might have endometriosis."

Sure, I'd heard of it. I'd been doing online research about women who had the same symptoms I did. I knew it's basically when the tissue that lines the inside of your uterus (which thickens and sheds every month during your period) doesn't leave your body but somehow grows outside your uterus. That tissue can then attach, or implant itself, on anything inside your pelvis -- the bowel, bladder or other organs. It can cause pain, scar tissue, infertility and all kinds of other problems, including the gut symptoms I'd had for years. But none of my doctors had ever brought it up before. I've since learned that my experience is common. In fact, a recent study showed that as many as 11 percent of women have undiagnosed endometriosis. Some say part of the reason may be that it's just not on doctors' radars -- plus, it's so hard to diagnose. In fact, it takes surgery to know for sure that you have it.

The doctor suggested that I get laparoscopic surgery to look inside my abdomen. The test was positive: I had endometriosis. Whew, right? So I'd get some treatment and be all better? Well, not exactly. Turns out there aren't many gynecologists out there who are trained experts in endometriosis treatment and excision. I learned that some ob-gyns who do laparoscopies for endometriosis simply "shave" down the implants with a laser, which can leave behind tendrils of growth. Like the roots of a weed, the implants may grow back. In fact, the recurrence rate of symptoms within five years after surgery can be as high as 50 percent. Sure enough, my relief was only temporary. Within a year my pain and stomach troubles returned, worse than before. At that point my doctor told me there wasn't much more he could do.

I hated not being able to eat the foods I loved. I hated hearing my kids say, "Oh, Mommy's sick today. She can't play with us." I felt guilty that sometimes I couldn't even drag myself out of bed to cook dinner for my family. I endured the pain for several more years. It was a very difficult time that caused a lot of stress in my marriage and probably contributed to my divorce.

Determined to find someone who could help me, I did more research online. When I read about the Center for Endometriosis Care right here in Atlanta, I felt new hope. The kind of surgery they did there was definitely aggressive, but I was ready to try anything. So I made an appointment for a consultation with the medical director, Ken Sinervo, M.D., an ob-gyn and expert in endometriosis excision. He and his staff were so kind and understanding I almost cried: They'd seen thousands of patients just like me, from all over the world. Dr. Sinervo explained that while viewing my insides in high magnification on a 27-inch high-definition color screen, he would use a laser to carefully cut out each area of diseased tissue, including some tissue left behind by my previous surgery. He told me there was a chance I would lose my uterus, part of my bowel and my appendix, based on where the disease was located. I felt a mash-up of emotions: scared, excited, hopeful and skeptical. The idea that this surgery could end 20-plus years of pain seemed too good to be true.

The procedure lasted about two hours, and when I woke up in the recovery room, Dr. Sinervo was there to explain everything he had done. He had removed my appendix but he was able to keep my uterus. And he didn't have to remove any of my bowel, which was amazing because the endometriosis had grown back on my colon, creating scar tissue and adhesions and causing it to kink like a garden hose. No wonder my gastrointestinal tract hadn't been working properly!

The recovery was pretty brutal. I was out of commission for three solid weeks and could barely sit up or walk. Luckily I had wonderful friends and family to help out with meals and carpool runs. Gradually my insides started to heal and I regained my appetite. Little by little I tested the waters by trying foods that used to make me feel sick. Now, about a year later, I can enjoy weekly pizza nights with my kids and plan trips I never thought I'd be able to go on. I can drink wine. I can go out with my friends without falling asleep on them. I can run around and play with my daughters. My periods now are regular and (a word I absolutely love to hear) normal.

I feel better than I ever have in my life. I'm so thankful I finally found the answers to my mystery symptoms, but yes, I'm frustrated that it took so long. As a mother of two girls, I pray that they don't get this disease. But because I took charge of my own health and learned everything I could, I know the signs to look for and how to help them -- and that gives me power.

A Few Words from Adina's Doctor

We don't know for sure why a woman gets endometriosis, but the likely theory is that she's born with it. The pain can start from the time of your first period, which is what happened to Adina. If your symptoms improve when you take non-steroidal anti-inflammatories (like ibuprofen) or when you're on birth control pills, then you probably don't have endometriosis.

About two-thirds of patients with endometriosis also have GI symptoms: constipation, diarrhea, intestinal cramping and painful bowel movements. So they often get referred to a gastroenterologist who finds nothing wrong and may say it's irritable bowel syndrome. Colonoscopies are an inadequate tool for diagnosing endometriosis because the disease lies on the outside of the colon, not the inside. Other symptoms include painful intercourse, back or side pain and bladder urgency. About 40 percent of women with endometriosis have problems with fertility. And it takes an average of seven to nine years for women to get a proper diagnosis, so if you're having symptoms that are affecting the quality of your life, ask your doctor about endometriosis.

-- Ken Sinervo, M.D.

Adina Kalish Neufeld lives in Atlanta with her girls Talia, 11, and Ryan, 8. She loves tap dancing and working on My Kitchen Chaos, her cooking blog for busy parents.

For more information, including a list of endometriosis excision specialists in your area, visit the Endometriosis Research Center or the Center for Endometriosis Care.

 

 

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