Many of us with mast cell disease find we get worse during “that time of the month”, or, rather, “those times of the month” during both ovulation and menstruation.
But why? Why us? Aren’t we suffering enough?
We’re not the only ones. From the Mayo clinic:
Just before and during your period, progesterone and estrogen levels decrease. In some women, these hormone changes may worsen asthma. The relationship between hormones and asthma is complex, varies from person to person and isn’t fully understood.
They also had this to say about ways to treat it:
Hormone replacement with estrogen or progesterone may improve asthma symptoms in some women.. however hormone replacement appears to increase the risk for asthma symptoms in certain women.
Yes! In women like me! My wheezing gets much worse, along with everything else, but any type of exogenous hormones trigger me badly.
So what’s going on? Why do hormones, both endogenous and exogenous, trigger mast cell degranualtion in MCAS patients? I found a very thorough explanation from the experts here:
Female sex hormones have long been suspected to have an effect on mast cell (MC) behavior. This assumption is based on the expression of hormone receptors in MCs as well as on the fact that many MC-related pathophysiological alterations have a different prevalence in females than in males. Further, serum IgE levels are much higher in allergic female mice compared to male mice.
They specifically address how mast cell degranulation is triggered during ovulation by the female hormone estradiol:
Beyond the well-documented effects of estradiol and progesterone on MC function in MC-associated diseases, these hormones were further implicated in controlling different MC process under physiological conditions. For instance, estradiol was showed to be a potent inducer of ovarian MC degranulation, which seems to be a necessary factor during the process of oocyte ovulation.
And during menstruation? Here’s what the researchers are saying:
Extensive MC activation/degranulation, as judged by extracellular tryptase, was a common feature of the functionalis in specimens sampled just prior to and during menstruation.
In healthy, normal women, this degranulation stays confined to its proper place where with us it can trigger an avalanche of degranulation in all of our mast cells, from head to toe. Just like any other trigger can. Our mast cells are hyper-reactive and are looking for signals to react in every system.
What about women who only seem to have issues during hormone fluctuations? While most of us are reactive on a daily basis, there are those who are only experiencing reactions during ovulation and menstruation.
What’s going on with them? Here is an interesting exchange I found between an allergist and an expert over at the American Academy of Allergy, Asthma & Immunology:
We recently met a 16 year-old female who has had 6 menstrual related episodes of anaphylaxis for her past 6 cycles always occurring 2-4 hours after the onset of menstruation; clearly not prior to menstruation. The episodes generally resolve within 2-3 hours of epinephrine and antihistamines. She continues to take Benadryl regularly for 24 hours.
Interestingly, at the very onset of menstruation the patient takes 600 mg of ibuprofen and takes once or twice daily for the first 3 days of menstruation. She had been using ibuprofen regularly for 3 months prior to these episodes for a stress fracture of her foot and had no problems. Since these episodes have started she has not used ibuprofen outside the first 3 days of menstruation.
Are we likely dealing with catamenial anaphylaxis vs autoimmune progesterone dermatitis syndrome vs mast cell disorder vs idiopathic vs nsaid allergy?
In summary, I would favor catamenial anaphylaxis and not autoimmune progesterone dermatitis, idiopathic anaphylaxis, mast cell disorder or NSAID induced anaphylaxis.
I recently had an exchange with a lovely young woman who found out her “mast cell flares” during menstruation were kept completely at bay after receiving a diagnosis of “catamenial epilepsy” and being put on the proper medicines for that condition. I found that extremely interesting so I’ll be doing more research into this and will be writing on it in a future post.
As for those of us with definite mast cell disorders who struggle each month through ovulation and menstruation, we have few options. Hormone therapy generally makes us worse so increasing our doses of regular meds or even relying on rescue meds are our main options. For some of us, having a hysterectomy (or oophorectomy) may be the only thing that stops the female cycle MCAS flares but unfortunately, in some cases, it can also trigger us.
There are no easy answers.
Good luck, and gentle hugs.