MCAS, Fertility & Pregnancy

This might be one of the shortest posts in history. I can find “infertility and endometriosis” listed just about everywhere for mast cell activation syndrome (MCAS) patients in online descriptions provided by doctors, scientists and other experts: However, I can’t find a single study that has worked to discover why infertility is an issue in MCAS and only a few studies or articles that discuss pregnancy, mostly for mastocytosis. Effectively, I could end the discussion right there, because everything else I write will largely be speculation. Of course, you know me. I can’t help but speculate, at least a little.

What could be the cause of infertility in women with MCAS? Does it have something to do with the scar tissue they found during my hysterectomy or are hormones at play? With mast cell activation disorders, it could be a few things at play.

Since getting endometriosis only happens to some women with MCAS and some without, as mentioned in my post Menstrual Related Symptoms and MCAS, I doubt the key lies there. I’m the perfect example of infertility related to MCAS and endometriosis was not part of the equation. One would think that when a surgeon has to excise several pounds of scar tissue during a total hysterectomy that endometriosis was a foregone conclusion .No one was more surprised than me when dozens of biopsies revealed there was no endometrial tissue to be found outside my uterus.

Was it the scar tissue that prevented me from conceiving? It isn’t likely, given that a hysterselpingogram revealed my fallopian tubes were open. I even showed plenty of evidence of proper egg formation and release, but they still labeled me with polycystic ovarian syndrome (PCOS) despite the total lack of evidence. I released eggs normally, there was no sign of ovarian cysts or multiple egg maturation and yet, I couldn’t conceive.

Could the key be in my PMDD and the severe mood swings I experienced like clockwork every month? These mood swings were likely indicative of wild hormonal swings, likely spurred on by my misbehaving mast cells. Personally, I feel its key to my own infertility. I have all the signs of some sort of metabolic dysfunction, but like many women with MCAS, these fluctuations happen so rapidly, it’s difficult to pin them down on tests. Not surprisingly, every time my TSH and T2-4 levels are checked, they vary greatly, but are somehow still in range. Of course if you’ve been in this game long enough, you begin to understand that while these ranges are ideal for healthy people, an individual with chronic illness can be affected greatly by slight variations in any and all levels of hormones and nutrients in the body. There really is no one size fits all when it comes to medicine.

I suppose if I were doing things over again, I would have pressed harder for my metabolic dysfunction to be taken seriously. I would have done an exploratory to see whether or not I actually had endometriosis, but this option was never offered to me, even if it was a possibility at the time. Had mast cell activation syndrome had been recognized as a real condition when I was still a young woman, who knows, maybe I’d have the child I always wanted.

All I can offer to women who are struggling with conceiving is hope. Hope that your complaints will be heard. Hope that your MCAD will be discovered and treated before your biological clock runs out or you resort to a hysterectomy to escape month long periods, severe pain and your part-time personality, Mr. Hyde. Don’t stop searching for answers. Don’t stop asking the important questions. Try mast cell stabilizers and antihistamines and everything else that works to avoid these unnatural hormonal fluctuations.

To be perfectly frank, I’m opting not to write about my pregnancy findings, which is half because there’s so little to offer and half because pregnancy isn’t something I’m really prepared to write about. However, I leave you with the research I did find, so you can explore these subjects on your own.

  1. Almudena Matito, MD, PhD. TMS for a Cure. “Mastocytosis and Pregnancy.” Accessed Oct 22, 2019.
  2. Kumaraswami, Sangeeta. “Management of a Parturient with Mast Cell Activation Syndrome: An Anesthesiologist’s Experience.” Case Reports in Anesthesiology. Volume 2018, Article ID 8920921. https://doi.org/10.1155/2018/8920921. Accessed Oct 22, 2019.
  3. Woidacki, Katja et al. “Mast cell-mediated and associated disorders in pregnancy: a risky game with an uncertain outcome?.” Frontiers in immunology vol. 5 231. 19 May. 2014, doi:10.3389/fimmu.2014.00231 Accessed Oct 22, 2019.

We learned a lot in this series about known menstrual symptoms associated with MCAS, but unfortunately, it seems to be the end of the line for our discussion on female reproductive issues arising from MCAS at this time. We need more information and I hope in time, we will see doctors studying the role MCAS plays in infertility.

2 thoughts on “MCAS, Fertility & Pregnancy

  1. Thank you for sharing your story Michelle. I’m sure you’re helping so many women who struggle with infertility and MCAD to start looking for answers. I hope that one day, more attention will be given to these issues and answers will be found. Sending hugs your way sweet friend.

    Liked by 1 person

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