Menstrual Related Symptoms and MCAS

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.

An exploration of the connections between mast cell activation syndrome and the symptoms of PMS, PMDD, dyspareunia, dysfunctional uterine bleeding, and vaginitis. Believe it or not, addressing your period woes, no matter how extreme, may be helped with the use of the same antihistamines and mast cell stabilizers used in allergy and mast cell conditions!

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.

Human Mast Cells from under a microscope, Image: Flickr
Human Mast Cells, Flickr

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

4 thoughts on “Menstrual Related Symptoms and MCAS

  1. Great article, thank you. They still no very little about endometriosis I’ve realised. I had my womb removed fifteen years but they left my ovaries as I was so young. They still found endo tissue last year. The main thing the hysterectomy fixed was the night sweats, until last year. As I went through menopause the sweats came back at fifty years old. I find how I’m treated medically very frustrating . I feel much could be achieved by a doctor using a microscope to check us out more. I’m very fed up of how women are treated by the medical professional generally. I have Ehlers Danlos Classical hypermobile with vascular tendencies as have heart and lung disease so suffer with POTS. Smear tests are an example, they could collect the sample via a tampon that the woman installs for a few hours previously…the skene gland is similar to the male prostate gland and can become infected, sore etc but most women aren’t even aware they have one…I wasn’t until this year! Women are kept dumb and so are doctors.

    Liked by 1 person

    1. I agree that there’s an incredible amount of misogyny in medicine and a whole lot of doctors would rather call us hysterical or somatic than deal with our mysteries and complexities. It’s a broken system and a lot of doctors could care less about it’s brokenness, but there are doctors who care, too. You just have to work to find them and build a rapport. It took me over a decade. The most important thing, is that we fill those gaps in our knowledge and learn to advocate for ourselves with all doctors and reject those invested in a broken system. We can’t rely on anyone to fix us but us alone. No one will ever be more invested than you.

      Liked by 1 person

  2. Scar tissue can be quite the nightmare! Lack of it can be dangerous, too much can be dangerous. I had no idea about what scar tissue is like and what it causes internally until my own surgeries, discovering it can basically stick things together that shouldn’t be stuck together! I knew very little (read: next to nothing) about the relationship with menstruation & MCAS, so this has certainly taught me a few things. Have you found many side effects with quercetin, has it been relatively effective? Very thorough, educational post, brilliantly written!
    Caz xx

    Liked by 1 person

    1. Thanks, Caz. It really is fascinating isn’t it? I like quercetin a lot. I’ve never experienced any side effects and tolerate it very well. I’ve been very happy with it. Just make sure you get a reliable brand and read reviews on it. Not sure if any of the ones I recommend are in the UK or not. xx

      Liked by 1 person

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