I was officially diagnosed with endometriosis in April of 2014. I was 22 years old.
This diagnosis came after years of dealing with insanely painful menstrual cycles (which often landed me in the ER), an extremely poor immune system, an equally poor digestive system, and a number of other symptoms that I had simply learned to live with.
To say that endometriosis is a frustrating diagnosis is a massive understatement. For me, it was terrifying. This was largely due to a lack of available information as well as an uneducated physician who told me that at twenty-two years old that I probably wouldn’t be able to have children. One botched surgery, one nasty post-op infection, and one allergic reaction later, I finally found a new gynecologist who reassured me that although my illness was incurable, we would figure out a way to make it manageable.
While the cause is unknown, endometriosis is recognizable when the endometrial tissues that line the uterus are not properly shed during the menstrual cycle and instead grow outside the uterus. It is most often found on the ovaries, Fallopian tubes, or surface of the uterus. Ok, not too scary, pretty straightforward, right?
Well….
Due to an extreme lack of research and knowledge, endometriosis often takes years to diagnose. I personally spent several of those years in and out of emergency rooms and doctors’ offices, having ultrasounds done and catheters inserted, and being given morphine and Perkoset to “take the edge off” my pain. I heard a myriad of explanations and non-explanations, everything from possible cancer diagnosis to “it’s probably just stress”. Meanwhile my pain continued to worsen. At one point things were so bad that my mother thought I was having a miscarriage- despite knowing I was sexually inactive.
Endometriosis and its symptoms can be as varied as the women it inhabits.
Although there are commonalities such as incredibly heavy and painful periods, intense pelvic pain and cramping, and painful intercourse, many women report additional symptoms as well. For example, my dear friend H. is 23 and has endometriosis, and she only experiences cramping and pelvic pain during ovulation and the first few days of menstruation. I, on the other hand, experience the same symptoms with much more frequency even outside of my menstrual cycle- as well as additional symptoms including insomnia and chronic fatigue.
Unfortunately, since so little is known about this disease- despite affecting over 11% of the female population worldwide- treatment and results are inconsistent.
Depending on the severity of their endo, most women are put on hormonal therapy, usually in the form of birth control, or undergo various types of surgeries in an attempt to get rid of the disease via excision. Hysterectomies are also becoming an increasingly common “treatment” for endo, particularly for women in their 30s-40s.
Despite a wide range of personal experience with endo, women across the board seem to be unified in their frustration with these treatment methods. For example, since endometriosis is marked by an excess of estrogen in the body, using birth control as a form of treatment can often exacerbate symptoms already present- such as cramping, weight gain, and anxiety/depression-that are caused by excessive estrogen. For others, progesterone-based birth control introduces new unwanted side effects- such as mood swings, anger, hot flashes, etc- which are compounded by already-present endo symptoms. Even if any of these newly introduced hormones do lessen the effects of endo symptoms, in my personal experience, the patient simply winds up trading those symptoms for a new set of problems.
Hysterectomies for endometriosis were once used as a last resort, particularly among younger women, but doctors seem to be turning to them more and more within the last few years. While the idea of simply removing the root of the issue (aka the uterus) may sound like a no-brainer, as well as a welcome relief for women who have suffered from this disease for most of their lives, what many women often do not realize is that they will still undergo a natural menopause in their later years despite having already undergone a medically induced menopause. This means that all women who have a hysterectomy will go through menopause twice.
At the tender age of 22, I never even considered having a hysterectomy. Even now, at 27, I would only consider it under life-threatening circumstances. Thankfully I have access to a doctor who not only respects my decisions but who also has been very open about wanting major surgery to be a last resort. Unfortunately, that does mean that my options are extremely limited.
So what do you do when nothing works?
Well, after trying multiple birth controls and undergoing three surgeries, I finally started talking to my doctor about a more natural approach to healing. I had read various research articles as well as several blogs written by women who struggle with endo, and many of them talked about how switching from a medicinal to a natural approach when treating their endo had a tremendously positive effects on their lives. My doctor agreed that introducing some dietary and activity changes could only be good for me, and so I began my journey towards a non-medical treatment plan.
Stay tuned for part two of Living With A Chronic Illness as I talk about my personal journey towards healing from endo- the good, the bad, and the ugly!