So, I decided to go into menopause the other day . . .

At my visit to the NIH in December, the doctors recommended a three-month “medication vacation.” I would go off all my medications for three months and see what happened. The first month, I felt terrific! My rash was fairly mild, and I had hope that I may in fact be coming out of this state of cyclical rash on my own. Except for a couple of mornings waking up with an alarmingly swollen throat and tongue, I was managing pretty well without medications.

During this time, I also realized that I really, really hate antihistamines. I mean really. In the doses required to affect my symptoms, they make me groggy and grumpy and bloated. Those issues were side effects, not symptoms. This kind of discernment was one of the goals of the NIH-recommended (non) treatment plan. 

The second month, things were not so smooth. I was itchier. I wasn’t able to sleep. I was exhausted. Though I didn’t make it through the month without meds, I only took them as needed rather than as a preventative measure.

The third month (this one) has been rough. Taking antihistamines “as needed” hasn’t been working. I really need the round-the-clock antihistamine use that I have realized makes me miserable in a whole different way than constant intense itching.

A couple weeks ago, I had a routine scheduled appointment with my local allergist/immunologist, who, last November, performed the skin prick test that confirmed my progesterone allergy. At that time, he administered an Epi-pen due to this systemic reaction.

I chose not to take antihistamines the night before the appointment, and by the time I went to see him that afternoon, my entire back was covered in the usual awful rash. My eyes were red, my face was red and swollen, and my chest was flushed. Everywhere he touched, my skin was hot and inflamed. After the physical exam, he told me the NIH doctors were wrong and recommended more aggressive treatment.

A few days later, I received an email from my Endocrinologist asking if I was ready to begin Lupron. I have had really mixed feelings about this option for a while, but after this period of controlled chaos in my body and realizing that a treatment of regular antihistamines is a double-edged sword, I was ready to do something different. Whether it turned out to be good or bad, I needed different.

Basically, over a period of weeks, Lupron stops your body from producing any reproductive hormones. No estrogen. No progesterone. No testosterone. Nada. Essentially, a woman’s body goes into chemically-induced menopause for the duration of the treatment, with all the side effects of menopause plus the ones of a heavy-duty synthetic chemical surging through her veins.

Lupron is given by injection. In my case, it will be a once-monthly shot. We’ll do it for three months and re-evaluate. If my rash is gone, we’ll try “add-back” therapy, using synthetic estrogen to ameliorate many of the Lupron side effects, but this comes with its own set of problems.

This treatment is completely experimental. As far as I know, it isn’t even in the literature, which isn’t very surprising with only 50 reported cases and 0 major studies. My team of doctors came up with this idea, which the horribly disrespectful Endocrinologist at NIH called “clever,” as she cast doubt on the very existence of my condition. This could be an effective treatment or at least give them a clearer understanding of my condition. No one can tell me what to expect because no one has done this before.

So, I did it. On Tuesday, I received my first injection. Whether this is better or worse, it will no doubt be different. I haven’t noticed any changes yet. I’m still itchy and reliant upon antihistamines. I haven’t started weeping during commercials or fanning myself frantically in the midst of a hot flash. Yet, I feel like I’ve turned a curve. Or, more accurately, jumped blindly off a cliff. I may land safely with my health intact and new wisdom to share, or I may plummet to depths heretofore unimagined. I won’t know until I get there. The important thing for me right now is that I chose to take that first blind step knowingly and willingly. No one chased or pushed me to take this plunge. This was a choice I made from a place of strength, not fear.