VIEWS FROM THE VALLEY
SUSAN BOLAN

My Endo Story

At age 58, I never thought I would still be battling endometriosis, a debilitating disease that affects women. Yet here I am, just having had another surgery because of it. It has been a long road.

What is endometriosis?

Endometrial cells normally grow inside the uterus (womb) and respond to hormones as the female goes through her reproductive cycle. The hormones tell the cell tissue to bleed and that blood ultimately becomes the menses that sheds each month. In some women, for some reason, endometrial cells grow in other places besides the inside of the uterus. They can grow on the Fallopian tubes or ovaries. They can grow on the external uterine walls, in the abdomen or on any internal organ. Rarely, they can even grow on the heart, lungs or brain.

Although there are theories, no one has been able to figure out why endometrial cells might migrate to other parts of the body or how to keep them from doing so. When they do, it becomes very problematic for the woman. During the menstrual period, the wayward endometrial cell tissue responds to hormones and bleeds. However, due to its inappropriate location, the blood has nowhere to go and is trapped. Each month, this fluid is partially absorbed back into the body but some of it is left behind, causing increased toxins in the abdomen and elsewhere. The result of months and years of excessive fluid build-up can result in mild symptoms of “just not feeling well” and abdominal discomfort to debilitating symptoms of extreme pain and inability to function in daily life. In my case, my stage 1 endometriosis resulted in general malaise most days, low energy, nausea, extreme abdominal bloating “basketball tummy,” very painful elimination, intermittent dull and stabbing pain, and panic attacks.

At age 25, when I first started having symptoms, I had no idea that the unbearable pain I was experiencing was related to my menstrual cycle. I tried to explain it to doctors but had trouble articulating exactly what was going on. The doctors, unfamiliar with the condition, couldn’t figure it out either and several treated me for digestive issues, bladder infections and sexually transmitted diseases ­– none of which I had. I had one doctor tell me that I had a urinary condition that would need to be “treated” for my entire life. No kidding. Absolutely nothing helped and the medical professionals seemed to just throw up their hands at the mystery condition. I was told on more than one occasion that perhaps what I was experiencing was all in my head or more likely the result of stress. Really?

Three years into diagnosis with no hard answers, one doctor finally asked the question, “Do you feel more pain during your period?” I replied, “Why, yes I do!” I was promptly referred to a new OB/GYN who had expertise in endometriosis. I didn’t know what that was but was so grateful that I might finally have a pathway to wellness.

Within a month, I had met the new doctor, a very kind man who arranged for me to have laparoscopic surgery. This involved a small incision in the belly button, filling the abdomen with CO² gas and using a laser to remove anything untoward. The doctor found eight lesions in my lower abdomen and zapped them. After a weekend recovery, I felt immediate relief. In fact, I felt great. The surgery had worked! I was symptom-free and soon I had a nice, slim belly again. I didn’t have any more problems with endometriosis until a couple of years later when my husband and I were thinking about starting a family. I began to feel the twinges of endometriosis coming back and I became concerned about being infertile. However, my anxiety was quieted after eight months of trying when I had a positive test for pregnancy, confirming I was expecting our first baby. The endo symptoms were relieved during pregnancy, birth and breastfeeding due to the halt in menstruation but soon after my periods resumed so did the pain. I had a few months of discomfort then happily got pregnant with baby number two. I had endo relief again through breastfeeding but again it returned, this time with more intense pain and bloating. Clearly, pregnancy had not cured my endometriosis. Before too long, I was back in the hospital having another laparoscopy to get relief from the pain.

Right around this same time, my sister was also having some female-related problems. Her symptoms seemed similar to mine so I encouraged her to seek help. Unfortunately, her doctors did not take her seriously either and treated her symptoms as if she was hysterical. They gave her anti-anxiety medications and sent her away, telling her she did not need a laparoscopy. She begged them to do something about the pain and they gave in and scheduled exploratory surgery. The surgeon did find spots of endometriosis but decided not to burn them or carve them out. Instead, she was closed up without anything being done other than writing her a prescription for a drug that simulates menopause. For the next six months, she suffered unbearable hot flashes and other uncomfortable side effects while the drug did nothing to control her pain. She continued to suffer another couple of years while getting strange test results for things like ascites on her spleen and liver. Out of desperation and no longer able to tolerate the pain, my sister eventually told the doctors to just yank out her uterus and accepted the fact that she would never have children. The doctors did a hysterectomy but left her ovaries in place, which in turn continued to stimulate the endometrial sites.

Over the course of the next decade, I had another child and endometriosis continued to be present in my life but I was more determined than ever that it wouldn’t beat me. At that point, most of my symptoms were pain-free so I dealt with it. In 2011, over the course of a couple of months, I started to feel really horrible and I finally landed in the emergency room with a high fever and abdominal pain. A quick diagnosis determined that I had a perforated appendix and needed immediate surgery, a third laparoscopy. That week in the hospital was a long one as I had some unpleasant complications. The pathology report afterward indicated that endometriosis had basically eaten my appendix.

Due to the nature of endometriosis, most women find relief upon entering menopause. That is what the doctors told me on at least three occasions. I looked forward to it, actually. However, the evil endo continued to plague my internal organs with pain and bleeding eight years in and I was worried about my cancer risk. I had the perfect storm to develop it. Over the years, my bladder and uterus had become fused with adhesions, my ovary had become embedded in my abdominal wall and I had developed polyps, fibroids and adenomyosis, a hardening of the uterus. I was a mess. A fourth laparoscopy took my female reproductive parts and I bade them a fond farewell. I will be forever grateful for the babies they gave me and am hopeful that my medical nightmare is at long last gone. I also pray that my daughter will be spared its fury.

Endometriosis affects every woman differently but there is hope. In recent years, there is more awareness of the debilitating effects of the disease and further research into its causes. Healthcare providers are getting savvier in asking the right questions and women are growing more proactive about their own health.

If you think you or someone you know might have endometriosis, check out the information that is available through the Endometriosis Association at https://endometriosisassn.org/. Knowledge is power.

Susan Bolan

susanbolan710@gmail.com

  Susan BOLAN