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 began with my own personal history with these issues and continue the discussion below.
Continuing our discussion of the effects of mast cell activation syndrome on the female reproductive system, we now turn to the most recent research for elucidation on menstrual related complaints in women with the condition. Research points to a prevalence of mast cell activation syndrome (MCAS) in the general population, however this newly recognized group of conditions is thought to be massively underdiagnosed by leading researchers and clinicians. Are they missing a huge opportunity in gynecology to discover and properly treat unwitting sufferers of this complex condition? How does this help menstruating women who don’t have MCAS? Let’s find out.
Many of us with MCAS (including myself) like to think of MCAS primarily as a disease featuring histamine overload. It’s not unusual to hear one of us say something like “I’m allergic to my own period,” but it’s really a bit more complex. Let’s see if we can’t break it down into a language we can all understand and discuss some possible solutions while we’re at it!
In case you’ve never heard of mast cell activation syndrome, let’s do a quick review. MCAS is a mutlisystemic condition featuring chronic, inappropriate mast cell activation. Mast cells (immune modulating white blood cells which control the flux of dozens of chemicals in our bodies) begin to act erroneously, dumping excess amounts of chemical mediators, such as allergic reacting histamine, inflammation producing cytokines and significant quantities of heparin, which aids in the coagulation of blood. There are many other mediators which can be involved, but for the purpose of this discussion, they’re the most important.
During the diagnosis of certain gynecological conditions, are doctors missing MCAS (pronounced as “em-cahs”) patients by failing to recognize its menstrual related symptoms? Is medicine missing an opportunity to easily treat these symptoms? Doctors Afrin and Dempsey seem to think so, as it’s the central focus of their most recent research on the effects of antihistamines and mast cell stabilizers on dyspareunia (painful intercourse), dysfunctional uterine bleeding (DUB), and vaginitis (idiopathic inflammation of the uterus that results in discharge, itching and pain). These complaints are common and widespread among MCAS patients and the science is clear on the involvement of mast cells in the genitourinary system (the genital and urinary organs).
Like the Gastrointestinal system, the genitourinary system is a bigger target of increased mast cell activity due to its connection with the outside world. It’s within our bodies, but exposed to outside influences. Amber Walker notes in Mast Cell United that “some women with MCAD report allergic reaction with semen contact and/or allergies to condoms.” this is consistent with my own experiences and anecdotal reports I’ve heard from other MCAS patients.
Walker notes that “histamine is implicated in aspects of arousal-related sexual behavior” and tends to drive libido. Interestingly, anecdotal information indicates that female patients with MCADs may experience increased libido. However, some patients report a decrease in libido. This difference could possibly be accounted for by the influence of mast cell degranulation on the autonomic system and the vagus nerve, which is suspected to reach and interact with our reproductive organs. The influence of histamine can create neuralgia and contribute to the formation of autonomic dysfunction, such as POTS, a common comorbid condition to MCAS.
Human mast cells also have receptors for many sex hormones and they can exert a powerful influence on degranulation. Walker notes that estrogen, estradiol, luteinizing hormone and follicle-stimulating hormone all increase mast cell degranulation, while activation of progesterone and testosterone receptors have an inhibitory effect. Since these hormones vary throughout the 28 day cycle of growing the uterine lining, ovulation and then menstruation, it’s easy to see why certain periods of the menstrual cycle can increase degranulation and the symptoms of MCAS. It also explains why chemical birth control helps to attenuate some of these effects.
Furthermore, mast cell mediating prostaglandins have been implicated in premenstrual syndrome. The cramping and bloating associated by PMS may be associated with mast cell degranulation. Given how misbehaving mast cells like to go to extremes, this may account for the increased pain and bloating many women with MCAS experience.
Doctors Lawrence Afrin and Tania Dempsey feel it’s quite likely that women who suffer with premenstrual syndrome, premenstrual dysphoric disorder, dyspareunia and other common menstrual related health problems likely suffer from mast cell activation syndrome, especially if they have other classic symptoms of MCAS. These women could benefit from the treatment of their symptoms with systemic antihistamines and mast cell stabilizers, such as diphenhydramine (Benadryl), quercetin or cromolyn. Recently, they conducted a small study of women who suffer from these symptoms. Participants saw symptom improvement when using an intravaginal method of application.
These simple treatments seem by far preferable to the way my own symptoms were treated throughout my lifetime, which began with controlling my symptoms with the use of chemical birth control and finally at age 42, a total hysterectomy. My symptoms of DUB and dyspareunia were completely resolved after receiving a total hysterectomy. Total hysterectomy also helped to dramatically reduce my symptoms of PMDD, but was more of a half measure. I still struggled with mood swings around my ovulation cycle, but still experienced changes in my emotions and ability to control them. However once I started treating myself with quercetin (a mast cell mediator) and ample levels of Zyrtec (cetirizine), an antihistamine. I can’t imagine anything but a hysterectomy and the opportunity to remove all the scar tissue they found (not to mention having to separate most of my organs from each other and all that scar tissue) having fixed my dyspareunia.
Of course, we are finding out from the recent Afrin and Dempsey study that such a radical procedure is not necessary to control and treat MCAS related symptoms. I had my hysterectomy out of sheer desperation and the belief that I had endometriosis. After analyzing tissue sample after tissue sample, not a single cell of endometrial tissue was to be found among what they pulled from me, confirming my problem had never been endometriosis.
Despite giving up my uterus, mood swings around apparent cycle changes remained, even if they were greatly lessened. My bouts of recurrent vaginitis were not, at least not until I got my levels of antihistamine and mast cell mediators to an uptake level to calm these angry mast cells; a scenario consistent with Afrin and Dempsey’s findings.
Does MCAS cause Endometriosis? That is a question that doesn’t seem to yet be answered. While mast cells are implicated in the inflammation inherent in endometriosis (not to mention any other condition featuring inflammation), it is not yet clear if mast cells can actually cause endometriosis, though the question has been studies, at least by one research team.
Dennis Kirchhoff found that while he couldn’t quite answer whether mast cells could be implicated in the inception of EMS, they do play a role in the disease and targeted mast cell treatment could be beneficial to patients with EMS.
With both groups of patients benefiting from targeted mast cell treatment, it almost seems a moot point of whether one causes the other, but of course working toward prevention and possible cures demands these questions be asked and answered.
Why all the scar tissue?
You may be asking yourself at this point, if she didn’t have endometriosis, where did all that scar tissue come from? I don’t really have an answer, but of course I have a theory. My best guess is excessive retrograde menstruation, which could have been made worse by the release of heparin from my misbehaving mast cells. Heparin thins the blood and prevents clotting. Retrograde menstruation describes the phenomenon of menstrual blood flowing back into a woman’s body during menstruation and carrying with it tissue from the endometrium (uterine lining). It was a theory originally introduced to explain endometriosis, however it was later discovered that retrograde menstruation occurs in all women to varying degrees. Why endometriosis occurs in some women while not in others is still not clearly understood.
Interestingly, MCAS has also been found to cause hypercoagulability (too much clotting) and may contribute to the formation of large clots as a feature of dysfunctional uterine bleeding. Once again, I have experienced both. In my earlier years, clotting was a real issue, while as my MCAS problems grew; my blood became thinner and thinner. These things make me wonder if perhaps MCAS has disease stages or phases of some kind.
The effect of hormones on mast cell activation is well established. “Sex hormones modulate immune and inflammatory cell functions, including mast cell secretion, and are regarded as responsible for gender and menstrual cycle phase-associated differential susceptibility and severity of some autoimmune and inflammatory diseases. Chronic urticaria is approximately twice more frequent in women than in men.” (Kasperska-Zajac). It stands to reason that this natural bodily process would become heightened in women with MCAS.
It seems there are vastly more questions than answers on the subject, but one thing remains clear. MCAS can exert powerful influence on menstrual related symptoms. Until recently, these symptoms were often considered idiopathic or were attributed to endometriosis: However, based on recent research and my own experience, it is clear that these symptoms can and do exist in extremes in MCAS and may be considered symptoms of the condition.
Knowing this could help more women than those with MCAS. From these findings, it could benefit all women who experience bloating and cramping during the premenstrual portion of the cycle and exploring mast cell mediators or antihistamines with your doctor could be beneficial for all women.
Join us for our next post on MCAS and the female reproductive system as we delve into the topics of fertility and pregnancy. Does MCAS affect fertility? Is pregnancy complicated by MCAS? I hope to address these questions and more as the series continues throughout the month of October and beyond.
References and Related Resources
- Afrin, Lawrence and Dempsey, Tania. “Mast Cell Activation Syndrome (MCAS) Questions Answered.” Jul 24, 2018.
- Afrin, Lawrence and Dempsey, Tania. Taylor and Francis Online. “Successful Mast-Cell-Targeted Treatment of Chronic Dyspareunia, Vaginitis, and Dysfunctional Uterine Bleeding.” 9 Apr, 2019. doi.org/10.1080/01443615.2018.1550475. 10 Oct, 2019.
- Endometriosis Foundation of America. “Sampson’s Theory of Retrograde Menstruation.” 10 Oct. 2019.
- Kasperska-Zajac, A, et al. Journal of Dermatological Science. “Sex Hormones and Urticaria.” 16 May 2008. DOI: 10.1016/j.jdermsci.2008.04.002 10 Oct. 2019.
- Kirchhoff, Dennis, et al. Taylor & Francis Online. “Mast Cells in Endometriosis: Guilty or Innocent Bystanders?” doi.org/10.1517/14728222.2012.661415
- Walker, Amber. Kindle Direct Publishing. Mast Cells United: A Holistic Approach to Mast Cell Activation Syndrome. Mar, 2019. Pgs 159-163.
I haven’t posted in a while because I’ve been a salty mess the past week or so and by salty, I don’t mean in the way most of us POTSies hope for. Those who have MCAS know all too well that anxiety and depression are par for the course when you’re in a flare, and if you have POTS to boot, hide the fucking knives. We can be pure evil bitches to ourselves and others.
Yep. I had to take a big time out from the interwebs before I started taking hostages. As it is, I had a lot of apologizing to do to my husband. Luckily, he’s a very forgiving guy with enough autonomic demons to be supremely empathetic.
Every time this happens, I decide it’s time to escape. Of course, the things I want to escape don’t actually have an exit. So my brain starts searching for any little imperfection that I can change. I feel small, alone and hateful. I feel completely disconnected from my husband and everything that comes out of his mouth, no matter how innocent or innocuous, becomes a judgment about me, my illness or our marriage. This time the poor guy wasn’t listening or responding fast enough for my liking when I was complaining about how hot and itchy my respirator is, so I decided he was like everyone else, he didn’t give a damn about how I felt or what I was going through and I screamed as much at him all the way home from the grocery. This is all absolutely ludicrous and I fully recognize that now, but in the moment and for two full days after, it’s truly what I felt and believed to be true despite a decade of solid evidence to the contrary.
The thing is I went through this for decades without knowing why I had such a Jekyll and Hyde personality or went through periods where I felt completely unable to control my emotions and yet was perfectly level headed and pleasant the rest of the time. I wrecked entire relationships because of my anxiety fueled rages and depression. I remember my mother throwing her hands up and demanding to know where her sweet daughter went when I was a teen. In my mind, I was just fed up with taking all the abuse and wasn’t going to stand for it anymore, but I knew deep down that much of the time I couldn’t really control my behavior anymore than I could control the weather. Part of me enjoyed this new found voice and the response I got to it. Part of me was terrified by it.
In my twenties, I began to question if it was premenstrual dysphoric disorder (PMDD) as these mood swings mostly revolved around my periods. It wasn’t until the last several weeks that I learned that a lot of women with MCAS have a terrible reaction to menstruation. Hormonal fluctuations can be a real bitch in the first place. Add degranulated mast cells and they’re positively explosive. There’s always been a direct correlation between my declining health the severity of my periods and I’m not at all surprised to find that MCAS is probably the reason behind that. Of course it wasn’t my period alone that was the problem. While I didn’t have my ovaries removed when I had my hysterectomy, I’ve seen vast improvements, but obviously I still struggle.
Now my anxiety and depression rise and fall with flare ups, such as I’m going through this spring. It’s really been the first time that I could definitively say, “this is an MCAS flare” because I finally have everything else under control. I wasn’t aware that I had a big problem with pollen, but looking back, I have had an allergic reaction to several flowers, so it makes sense. And look what surrounds my apartment, so close you can nearly touch it:
I also have big issues with mold and since it’s been a really wet spring here in the Ohio River Valley, I’m sure it’s everywhere. Everything is causing me to flare, from foods I used to be able to eat without an issue to my regular hair products I’ve been using for over a year.
Of all the symptoms from all the conditions I have, the ones I hate the most are my anxiety and depression because they make me someone else. I detest being mostly housebound, but I can handle it and find ways to make my life interesting and worthwhile. I can handle the pain of migraines, frequent subluxations, IC and GI issues, I have for decades. I can even take the nausea, though I will grumble about it an awful lot. But not being myself, being incapable of rational thought and understanding, having a hair trigger and losing that deep well of empathy that’s so integral to who I am, that I still don’t know quite how to deal with, even though it may be one of my oldest symptoms.
I am glad that I’m finally understanding that it’s not my fault and while I still apologize (because that’s simply what any polite person should do), I know I can give myself a break when I do lose it and be super proud every time I manage to win a battle with the anxious mega bitch even if I can’t win the war.