My journey with endometriosis perhaps began with my conception. Endometriosis has a suspected genetic link, and my family has a history of dysmenorrhea and suspected endometriosis; my mother had a hysterectomy and a confirmed diagnosis of adenomyosis, but they did not go looking for endometriosis lesions or adhesions during the surgery.
…But, even if the lining of my uterus began its wayward development with a genetic predisposition, I’m going to jump ahead in this story to more definable moments.
Every little girl has an odd relationship with menarche. This relationship starts with the first time they are told that once a month, for the majority of their lives, they will bleed; they will have to wear pads or use tampons, and they might have cramps; and at that time, they will be “women.” There is apprehension of this moment. Girls are both eager for the transition into womanhood and harbor a fear of the whole process. Menarche is almost a competition (of which none of the participants have any control) on who will start first, and who will start last. I remember feelings of inadequacy when my friends all began menses before me; if only someone could have scooped me up back then and promised me not to worry about when menses would begin and convinced me to enjoy those blissfully pain free years while I could.
For me, from menarche at thirteen and onward, menses has been a dark crimson flood full of clots, and pain, and lasting at least a week. I didn’t know then that what I was experiencing was not normal, since it was always normal for me and normal for my family. However, as the years progressed so did the problems. I never became “regular,” some months I would bleed for 7 days, some months for 14 days or more. If I stood up or moved without going straight to the bathroom I would ruin clothes, and I couldn’t sleep throughout the night without nightmares of waking up in what looked to be a murder scene. I’d get diaper rash from having to wear pads so often. The pain that had once been like a sucker punch to the gut spread to my right hip.
That was the first time I started birth-control, in 2009. My doctor at the time prescribed Yaz, and prescribed me to take it on a continuous three month basis. The Yaz helped to reduce the frequency of menses, but not the pain during menses; in fact the pain progressed to my bowels and shot down my right knee from my tail bone. When I became sexually active, the pain was immense, and regardless of the stage of my menstrual cycle I bled afterwards. In 2011, during a bought of chronic migraines I stopped taking the Yaz. Over the next two years things became even more irregular, and even more painful. The pain that shot down my right knee moved down through my right ankle and the pain in my bowels would reduce me to tears. Worse, I would have flares of fatigue so bad I felt like it was tremendous effort to lay still and flat; like my body was made of lead. I could barely think, let alone think clearly and at the level I needed to complete my Master’s degree.
At least by this time I had discovered menstrual cups and cloth pads; I could finally sleep through the night and manage throughout the day without the constant fear of ruining clothing; I finally didn’t get diaper rash even though I wore pads almost every day. When the symptoms became intolerable, I finally turned to a new doctor; that was four months ago. I had an ultrasound that showed a few small cysts on my left ovary, but there was nothing to be concerned about and no fibroids or masses that could be accounting for the torrential bleeding. Because of my history of migraines my new doctor started me on Norethindrone progesterone only pills. Exactly one month of taking the mini-pills I went to the emergency room with what I feared might be appendicitis. A CT scan showed I had a large cyst on my right ovary; the ovary that had be inactive just a month before. Finally medical professionals recognized the pain was more than just a complaint and prescribed me generic Norco.
It’s been a month since then, and I’ve been bleeding since August 21st; some days it’s light and spotty, some days its 15 ml blood clots. I’ve been in constant pain: pain in my abdomen, pain in my bowels, pain in my right hip, pain in my pelvis, pain shooting down to my right ankle. I have a slight limp when I walk and can barely stand to sit through my classes or at work; at home I recline or lay on the floor to take advantage of the slight relief that offers. My stomach has been unsettled so that I have to force myself to eat and worry constantly about throwing up. The normal mental fog I’ve been dealing with soars to new levels when I cave in and take a Norco… and the Norco only manages to take the edge off the pain in my hip if it is effective at all.
Next week I have a follow up appointment with my GYN, and we are going to schedule another ultrasound. She has mentioned wanting to start me on depo provera shots, but I am not willing to take on the serious potential side-effects. I’m going to ask her about a TENS unit to try to regulate the pain in my hip. I might even brave up and ask for the laproscopic surgery to confirm the diagnosis and excise lesions found, but I’m apprehensive about that especially since my mother almost bled to death following her hysterectomy. That event led to the suspicion of Von Willebrand’s disease in my family, but unfortunately Von Willebrand’s disease is notoriously difficult to accurately test for, and false negative test results occur frequently.
That has been my endometriosis journey thus far. There are many more details left to be shared, and many more struggles left to be had but I’m going to take things one day at a time.