“Are you in pain today?” the nurse asks looking up from the computer screen.
“A four,” I say, anticipating her request to “rate the pain on a scale of 1-10”.
She reads the next question, “Do you feel safe at home?
“Well, I live alone with my poodles, so yes… except when one of them farts and I think I’m going to die of asphyxiation.” I laugh at my own joke. The nurse does not. Had she heard that one before?
The nurse continues, “When was the last day of your first period?”
“2013,” I grin. This time I’m not joking.
“Are you on some kind of treatment?” the nurse asks.
I consider telling her I have a five-year-old fetus growing inside of me, but I’m too tired to explain what humor is. The truth is hard enough to believe anyway. “Yes. I’m allergic to my periods.”
She takes my blood pressure and then flees the room.
*****
Five years ago, I didn’t believe anyone could be allergic to their own hormones. How can you be allergic to yourself? Doesn’t an allergic reaction entail hives and sneezing? I did, however, understand that hormone fluctuations could ruin a woman’s life. With the help of the internet, I realized I was experiencing premenstrual dysphoric disorder (PMDD).
PMDD was my most severe mast cell activation symptom from age 15 (when I got my first period) to age 27 (when I started taking continuous hormone pills). In fact, aside from my reactions to hormones, I felt healthy. Like MCAS, at that time, PMDD was relatively unheard of and provoked a lot of skepticism. No lab test can diagnose PMDD. Women with PMDD have the same levels of hormones as women without PMDD.
I wish I had a heartwarmingly funny way of describing PMDD to you, but the truth is it is living hell. Imagine a panic attack that lasts several days every month. Imagine being overwhelmed by impending doom, even though nothing has happened. Thoughts of hopelessness and paranoia cloud your mind, as your body becomes heavy and exhausted from crying. Your mind suggests death as a better option, while you try to pretend you’re okay for your job and your relationships.
For twelve years, I sought relief from this torture. I tried antidepressants, therapy, and supplements. Finally, a compassionate midwife worked with me to find a hormone pill that my body tolerated continuously. I learned no hormone fluctuations equaled no PMDD. The curse was over.
When I met my mast cell specialist several years later, he asked me to list my medical history. I told him that I was on continuous hormones for PMDD.
“Premenstrual dysphoric disorder,” I explained. He nodded, knowingly. His familiarity was curious, so I added, “I attempted suicide a couple times.”
He nodded again, completely unfazed. Had he heard me correctly?
Soon after, I learned that hormones can trigger mast cell reactions and many women with mast cell activation syndrome (MCAS) use medication to suppress hormone fluctuations. I learned doom is a hallmark sign of a severe allergic reaction. These days, when I’m anxious, I increase my antihistamines and it often helps. It makes sense my brain can’t work properly, like any other organ in my body, when it’s drowning in mast cell chemicals like histamine and prostaglandins.
I wish I had known about MCAS sooner and gotten tested. Not only would it have probably decreased the severity of my PMDD episodes, which can take an incredible toll on your mental health, but it also probably would have prevented damage to my body caused by chronic inflammation.
I wish more people understood that you don’t have to have rashes or anaphylaxis to have MCAS. IBS, anxiety, migraine, and dizziness are all symptoms as well. Learn more about MCAS testing and treatment.
*****
As a final note, I’d like to share my biggest pet peeve of all time: women calling all birth control pills “the pill.”
When women tell me “the pill” made their PMDD worse, I want to ask, “Which fucking pill?”
For me, some birth control pills absolutely made my PMDD worse.
What helped me personally:
- Monophasic, not multiphasic
- Low dose, not ultra-low dose
- Continuous use (no inactive pills)
- Taking it at the exact same time every day
- Being patient as my body adjusted to the new medication
The number one rule of MCAS is every patient is different. What works for my body may be dangerous for your body. Learn more about trial and error with MCAS.
As always, this is not medical advice and I am not a doctor. Talk to your doctor about any concerns or questions you may have. Working with a MCAS specialist may be especially helpful.
Resources
- Role of female sex hormones, estradiol and progesterone, in mast cell behavior
- Histamine could be a key player in depression
- Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases
- Successful mast-cell-targeted treatment of chronic dyspareunia, vaginitis, and dysfunctional uterine bleeding
- Estradiol and progesterone regulate the migration of mast cells from the periphery to the uterus and induce their maturation and degranulation
This is so interesting! I have mast cell and extremely bad cycles; both my periods and I get ovarian cysts. I never thought the two could be connected! I am on Depo Provera for period prevention and so far it’s working very well.
Do you care to share what pill has worked for you- what dosage?
I use Apri continuously (no inactive pills).
Is this something your MCAS doctor recommended or do you’d have an OB/GYN who is MCAS knowledgeable? I have to have the hormone connection conversation with someone soon and want to suggest continuous birth control with no off days. My allergist diagnosed my MCAS. My pcp doesn’t even really know what it is. I’ve never discussed it with my OB. The week before my period and days of are horrid. Crying. Doom. Want to quit everything. Pain like labor contractions. Bad news bears. I react to anything with dyes. Especially yellow.
Both. I definitely recommend discussing it with your OBGYN. Thanks for reading.
Hi I am curious to learn more about your advice on BC. I take lo Loestrin. It’s three weeks of yellow pills and then a week of brown. I’m sorry, I’m not sure what that means ? Is that Mutlipahsic or monophasic? And is this kind a really low dose?
I’ve been thinking of changing it or going off of it because I have been on it for years and wonder if it’s actually making my PMDD worse or at the very least not improving it. I also am worried about it affecting my nutrition overall. Thanks so much for your time
Monophasic. It may be too low dose, but the only way to find out is trial and error. Do you take it continuously?
I take LoLoestrin FE. Twenty-four full-dose, two lower dose, two inactive. Cut my reactivity in half and stopped my periods completely after about five months (the first five months were very light and fairly asymptomatic, though). The initial adjustment to them landed me in the hospital but I opted to hang on and continue since this was looking to be a one-shot deal for me. Turned out to be well-worth it in my case.
I do have to be very careful to avoid triggers during the low dose and inactive pills, though. Some months I coast right through, others not so much.
Personally, Loestrin FE made me miserable for the six months I attempted it several years ago. Made my already excruciating cramps worse by dragging them out over more days. This was in the days before I had full-blown MCAS. Things were already in motion (seven years of hives, horrible periods, vague GI problems, new allergies) but MCAS hadn’t been coined yet and at the time I wouldn’t have met the criteria for either that or Systemic Mastocytosis, anyway.
YMMV, of course. Just thought I’d throw it out there that there can be similar formulations that are more successful than others (or even show drastically different results) in a particular patient.
Now, if my insurance carrier would just cover them…
Zero inactive pills for me – or else! 😬
Only testosterone could save my from the PMDD. Hats off to anyone who tries to manage that shit without becoming a man!
Only testosterone could save me from the PMDD. Hats off to anyone who is still dealing with that shit…after 17 years of ruining my life every single month, no matter how hard I tried to be sane the rest of the month, I just gave up and became a man.
That’s not giving up – that’s doing what’s best for you! PMDD is a monster!
I can relate the testo did help me for a while..but i had to lower dose and the PMDD monstor is BACK ..also I noticed once when my thyroid dose was really “different” the PMDD monstor went away.. trying to get back to that sweet spot.. Not a man yet from the T and not sure i will ever be..but too afraid to add “the pill” with the T . more money really needs to go into womens health . thank you for taking the time to share all your info with us. I can relate to the nurses that dont get or even pay attention to our jokes.
Your mcas doctor sounds just like my mcas doctor. We also have the ” but that is normal” / ” not normal ” conversation. I too wish I had known what this was decades ago.
I have said for years to any health professional that will listen…I think I am allergic to my hormones!! I stumbled across PMDD last year bingo and then this week it has led me to MCAS which would explain my allergy symptoms! Don’t know what caused it, been happening for years. It’s crap, utter crap! So now I am going to ask about MCAS! Liver function test always out, thyroid issues, gallbladder out, parotid gland out, tonsils out all possibly connected in some way!! Thanks for the info😊
Thanks for reading!
I’ve had my tonsils and gallbladder out…. definitely got my attention with the gallbladder because who the hell has that taken out under 60 lol
i am on a b.c. for it. I am guessing the dr prescribed a wrong kind. Alyse it is called i think. I heard yaz is good. It makes my cycle a lot shorter and i am thankful i am only living ith the symptoms for a lot less time i think but my symptoms are still here ! On another note to help you out, i am reading simply taking clairitin is supposed to do wonders so i just bought it and took it an hour ago and so far i feel a bit better but i really cant tell at this point.. especially since today i purposely am manipulating my cycle to come with the b.c. to stop all these horid symptoms i am going through all over again.
seems it will be a lot better option then birth control for me anyway if this works out.
I take several antihistamines daily to block histamine and prevent life threatening reaction, but it is not enough to block additional histamine release during ovulation. Check out my about me section.
What are the inactive ingredients? Are you treating prostaglandins?
I had TIA on low dose pill so i cant take anything. Suspect could be allergic to hormones not sure. Getting worse. Nausea, bloating, intense heat for hours in evening, dizzy, exhaustion. Been diagnosed pots but as always around cycle just wonder.
Why should we avoid low-dose forms of BC? I was told by my POTS and MCAS specialists that higher doses of hormones would make me sicker.
That’s not what this post recommends. This post says for me avoiding ultra low dose was helpful. Low dose and ultra low dose are different. Stabilization of hormones is the reason. There was absolutely an adjustment period.
I know the agony of PMDD; it haunted me for 20 years and was mis-diagnosed so many times as so many different things. Eventually I found a great reproductive endocrinologist. First she tried BC, but we couldn’t find any dose or type of BC pill that helped, so she put me on Lupron injections, once per month. The Lupron completely suppresses ovarian function, in essence, shutting down the hormones completely. So, she also put me on hormone replacement therapy; I get a controlled dose of estrogen (patch) and progesterone (pill) – same level every day of the month. This was the miracle cure for me, allowing me to live a happy normal life for the first time in 20 years.
I’m entering the menopause now and have developed Mcas in the last two years leading up to this.
I want to try HRT but when I tried the oestrogen gel, it flared my Mcas but improved my mood. I haven’t yet tried the progesterone pill as I’m scared I’ll react to it.
Do you think I need both to help prevent reactions to the oestrogen gel ? I believe the gel has alcohol in it and other excipients I might be reacting to so it’s hard to tell.
I’ve got a painful bladder which kicks off all the time too and has just done so with the oestrogen gel. I presume it’s either the alcohol in it or the oestrogen flaring histamine in me.
I’m lost 😞
With MCAS, every patient is different and you’ll need to work with your doctor to find out what works for you. See my post on Trial and Error.
I’m also allergic to my hormones! I hate to feel happy that I’m not alone, but this is so validating.
I have MCAS and HaT (Hyper Alpha Tryptasemia), and my most aggravating symptom is that, for 5 years now, I break out in hives during the same part of my cycle. In 2020, I was also in the process of being diagnosed for PMDD. I have menorrhagia and was unable to conceive for over 6 years before having my child in 2015. My cycles were 23 days with 13 days on my period. I also had multiple polyps removed before I could conceive. I’m now on Yaz continuously, but losing any amount of weight, even just a missed meal, causes all those symptoms to reappear thanks to the flood of stored sex hormones in my fat metabolizing as I lose weight. I’m now at my heaviest and attempting to diet again. As well as the Yaz and a low histamine, low carb diet, I’m on a cocktail of antihistamines, xolair injections, and mast cell stabilizers like cromolyn sodium and quercitin to maintain any semblance of health. I woke up this morning with hives on my thighs, uppers arms, and belly (bassically, where I’m chubby), but I haven’t noticed the intense mood swings, feelings of abandonment and hopelessness, etc., that normally also occur with weight loss. It’s a hell of a lot to manage, but I’m hoping for the best.
I’m so sorry you are also going through this hell.
Thanks for reading! Check out my remission posts. MCAS inflammation caused a lot of my weight issues.
I was reading a 2008 study recently where 92% of autistic women in the survey had PMDD, but only around 12% of the non-autistic women.
And another that said autustic women are 3x more likely to get hyperemesis from an allergy to pregnancy hormones. The connections between autism, hyper mobility and MAST seems deeper every day!
Yes, I would bet MCAS is at the root of these health conditions. Have you read the Theoharides paper on mast cells and autism? “Stimulation of brain mast cells and/or microglia by a combination of environmental and stress triggers may disrupt neuronal connectivity in the amygdala, thereby altering the normal “fear threshold”. This process could explain at least part of the pathogenesis of ASD.”
I was on a man made hormone contraceptive and it worked great – until they stopped making it. Then I tried literally every contraceptive pill. None of them helped. Some made me more depressed and ANGRY and some made me manic never sleeping. I started bleeding one day and it didn’t stop for 4 months. 2 weeks break and the bleeding started again.
I found relief with an IUD that has a small amount of hormone release. I just want to share that for anyone with mcas who is running out of options.
Thank for sharing. It can be really difficult when medication is discontinued. Sometimes medication that is discontinued can be compounded instead.
I’ve decided to switch over to using birth control to stop triggering my MCAS and help with PMDD so thank you for this great post! I was curious how long it took for your body to adjust tho. I’m worried about introducing the BC and triggering my mast cells (which of course will happen as it always does). Do you remember how long it took for you to adjust?
A few months