Mast Cell Disease Day is October 20th every year. Since I have a lot more to say than one day will hold, I’m breaking the rules and declaring October MCAS Awareness Month! This year, we’ll be focusing on bringing awareness of the effects of Mast Cell Activation Syndrome on the female reproductive system. We begin with my own personal story in this post.
The spoonie community is a glorious and sometimes mystical thing. I woke at 3 am and had no problem finding company. I found myself chatting with a friend from the UK and one from California and marveled at the difference. California is 3 hours behind me, while the UK is 5 ahead. You never know who you’ll find on at any given time due to insomnia, pain (painsomnia) or some other symptom and if you don’t find people in your own time zone, the spoonie community is vast and global. Just look for folks in other time zones to keep you company. It’s a real blessing when you’re feeling a bit down about something.
Sometimes my insomnia is more about what’s on my mind than the physical discomfort I experience so frequently. I woke last night in pain, with the kitten nagging me to feed him. He’s developed an infection after being neutered and we couldn’t get food down him for days. He is just skin and bones now, his hips jutting out like a starving savanna cat. He still can’t eat a lot at once, so he’s hungry ever hour or two and my heart breaks for broken things, so of course I’m giving him free-reign to dominate my life with his need. He is my child.
Of course as soon as he woke me, my appointment with the urogynecologist came storming back into my thoughts. I told my husband afterward that I’d already done all the grieving I needed to do, but my reaction to the memory says otherwise. Of course I’m still mourning. I may mourn this particular loss for the rest of my life.
Since my surgeon never gave me a straight answer on whether or not endometrial tissue was found in the buckets of scar tissue they pulled out along with my uterus and cervix in 2015, I had no way of knowing whether my gynecological woes could return or needed continued monitoring. I needed answers and Dr. W was kind enough to put through the records request so he could evaluate the findings.
The decision to have a total hysterectomy (everything except the ovaries and fallopian tubes) at age 43 was not one I made lightly. I knew that if I had endometriosis, it wouldn’t kill the disease, it would only slow it down. But drastic symptoms sometimes spur drastic solutions and my periods were making my life a living hell.
I was barely 10 when I started my period the spring of my Fifth grade year. By the time I was 13, my periods were wretchedly unbearable and it was pretty much a guarantee I’d miss school at least one day of my cycle, if not 2 or 3, depending on what I could negotiate with my mother. If the pain, bloating, diarrhea, insomnia, painful breasts and excessive bleeding, sometimes for over 7 days, wasn’t too much to deal with, the Jekyll and Hyde effect of my surging hormones certainly was. The worst part was no one would believe that my periods were torturing me.
My first gynecologist felt I was just adjusting to ovulation and that birth control was the best solution to these issues and to some small degree, it helped. It didn’t solve the problem, but it made life more bearable for me and the monster a little less gruesome. On birth control, the monster only lost control occasionally, rather than 14 of every 28 days. Even better was an intrauterine device called a Nuvaring. It delivered progesterone directly to the vagina and seemed most effective at keeping the monster that overtook me every 2 weeks on her leash. It certainly wasn’t a cure, but it was enough to maintain my sanity. Of course the Nuvaring didn’t come along until I was in my mid-twenties, but once it had, it provided the best solution.
Then I went off of my nuvaring in my mid-thirties to try to conceive. My husband and I were both so excited by the prospect of a baby, we didn’t even wait to get married before we started trying to conceive. We met late in life and knew we’d be playing beat the clock.
A couple of months in, the monster had grown and added several rows of teeth. December of 2005 found me on our honeymoon cruise, where I spent much of the trip curled on the bed with severe cramping, diarrhea, vomiting, and migraines. At one particularly tense moment, I found myself red with rage and screaming like a banshee at my husband-to-be while hurling everything in reach at the walls. Why? Because he didn’t want to go Key West and leave me so sick and miserable all alone. It was one of those moments I felt like I was standing outside of myself, powerless to reign that monster in.
The monster had gone from intolerable to absolutely unbearable, the pain from bad to the worst. When we realized I probably wasn’t going to get pregnant on my own and that we might end up divorced trying, I finally went to a fertility specialist. They didn’t know anymore than I did what was wrong. Endometriosis may have been the assumption, but doctors have a strange way of withholding such information from patients who want to have children, as if we’re too fragile to deal with the truth. Looking back, I may have been afraid to break the news to me, too.
A hystersalpingogram revealed clear fallopian tubes and an ultrasound revealed ample evidence of healthy egg release. My hormones seemed in normal range for where I was at in my cycle, as well. They could find nothing to indicate endo and if I wanted to work with fertility to go further, we’d be heading toward out-of-pocket territory and the expenses can be astronomical. So I went back on the nuvaring and our plans to conceive were put on the back burner until we could save a little.
Those dreams were never to be fulfilled. My lower spine soon began causing me endless trouble, my fatigue was growing by the day and my overall health continued to deteriorate. When I went in to renew my prescription for the nuvaring, I was denied due to my age and health. My health went from bad to worse and the monster inside me was constantly slipping off her leash. I begged to have my nuvaring back, but to no avail. I even switched doctors, but no one would prescribe it for me, citing my age, weight and tobacco use as too high risk. Even quitting smoking, they still denied me. Desperation built as did the accumulation of my diagnoses. Suspecting strongly that I had a genetic disorder and realizing I would likely never be healthy enough to carry a child ever again, I opted for a hysterectomy.
My hysterectomy was a laparoscopic surgery meant to last only 90 minutes to 2 hours. After going in, they knew it was going to be a long one. They had to separate my bladder from my bowel and my uterus both before removing it. They then proceeded to clean out all of the scar tissue. It took 3 1/2 hours.
The relief was immediate. Not only was I no longer burdened by buckets of blood, back pain, abdominal pain, leg pain and all the rest, the hormonal fluctuations that tortured me and my husband both mentally and physically vanished within the first 90 days. It was a whole new world.
I thought the problem was endometriosis and while my surgeon never answered whether there was endometrial tissue in the biopsies they took from my tissues, I assumed that’s what it was despite her odd stammering and shifting of papers when I asked for confirmation. She seemed more interested in understanding why I would have so much scar tissue. She speculated that perhaps the abuse I had endured created the scar tissue. I had been punched in the stomach, raped, but those experiences never resulted in significant injury.
Then I was introduced to literature on MCAS during my induction to zebrahood and heard about how women can actually be allergic to their own period. My curiosity about my own circumstances grew and so my old records were dug out and re-examined.
Back at my latest urogyn appointment, Dr. W tells me, “There wasn’t a single sample of endometrial tissue found among all that scar tissue. You’re home free.”
I gaped at him for a second. “I guess I really was allergic to my own period. I knew. I read about it, but I just didn’t believe it could possibly cause all that scar tissue.”
“It sounds crazy, but it makes sense to me. Spring is by far the busiest times to do bladder instillations. Histamine can do nasty things.”
Ahhh. So refreshing when doctors get it.
But now I’m left with this unsettling feeling about having given up my uterus to escape those decades of torture. The sad fact is that there are successful treatments which target intrauterine mast cells being developed, treatments that could have improved the symptoms that made 2 of every 4 weeks a living hell for 3 decades. All without giving up my uterus and signing away my motherhood.
Even had I only just found them, I still may have been able to conceive. While I’m 47, I’m still ovulating. If I follow in my mother’s footsteps in usual fashion, I will likely be in my mid-fifties before being past the point of no return, especially in today’s world of fertility treatments and pregnancy well over forty.
I could take this information and use it to destroy myself with all of the what if’s, gnashing my teeth over the past. I could recount how creating my own family and raising my children right has been a personal mission of mine since I was a teen. I could talk about other failed attempts in past relationships and how in one case it destroyed the very fabric of who we were together. I could tell you how many nights, so many nights, I cried when I knew I had no choice but to put those dreams away.
But the fact of the matter is none of those things would return my uterus to me or get me what I spent a lifetime dreaming about. Even if I could conceive and carry a child, at this point, having one would probably be a pretty miserable affair for both of us at this stage in my life. Besides, like so many women with genetic disorders, I’ve always had my doubts about passing my genetic material onto a new generation and letting the chips fall where they may. I don’t regret my own existence and can’t imagine ever regretting any child, but I think watching my own child suffer the way I have would probably break me in a way my infertility never could.
Whether or not any woman decides to have children should always remain in her own hands. Getting treated for MCAS related fertility and menstruation problems is of paramount importance to women with mast cell activation disorders of all kinds, regardless of their family plans. It’s important to know that dyspareunia, vaginitis, dysfunctional uterine bleeding and perhaps even infertility associated with these conditions can be treated successfully and it’s imperative that we do so for the improved quality of life and mental health of every woman with one of these disorders.
Through out the month of Mast Cell Activation Syndrome/Disorder Awareness Month, the Zebra Pit will be doing a deep dive into the subject. I hope it helps give the next generation some of the opportunities that were denied mine, from improved mental health and quality of life to retaining the choice to conceive and become mothers if that’s what we choose.
The hell I went through during my childbearing years is absolutely unacceptable for any person to have to bear. General Practitioners and Gynocologists alike need to know about the phenomenon of mast cell activation and how it can affect the reproductive system, our hormones and conception. I hope you’ll join me as we go through each condition and what the literature says about treatment throughout the month of October and beyond.