“P” is for pain and prostaglandins

My accomplishment this week was learning to say “prostaglandins”. When you have a rare disease, you have to learn all the big words. It’s not particularly helpful to tell a doctor, “I have excessive proglasta-thingies.” Trust me; I tried it three times. Luckily, my medical file is more convincing than my pronunciation. I miss the days when “rheumatology” was my greatest spelling challenge.

Prostaglandins are one of the dozens of kinds of sh*t (okay, mediators) my mast cells pump into my bloodstream. I have double the normal amount of prostaglandins in my body– on a good day. What does this feel like? A heart attack or childbirth depending on the time of day.

I am not exaggerating. Prostaglandins are used to induce labor.

For the past year, my uterus has jolted me awake almost every night to give birth to an imaginary baby. The contractions literally paralyze me with pain ­– far worse than passing a 5mm kidney stone. As if the pain isn’t enough, the sleep deprivation is torture. Some days, I am reduced to the emotional stability of a two-year-old at naptime.

The chest pain is less painful, but more concerning. When I say less painful, I mean – when my dog presses his paw on my ribs, I scream and the pain feels as permanent as a handprint in concrete. I only stopped worrying (aloud) about heart attacks, because I’m pretty sure they don’t last several weeks.

And then everything changed last week. I tried a new medicine* and it worked. Immediately. I’ve been free of fake heart attacks and childbirth for a week. I sleep so soundly I wake up wondering if I’m dead.

For almost a year, I have diligently tried new medications each month. MCAS patients are allergic to the fillers in many medications. My last two trials almost killed me. My mom had to peel me off the bathroom floor from a supplement reaction that left me unable to lift my arms.

So this feels like an overdue miracle.

One mediator down; dozens more to go.

*Aspirin – it’s a prostaglandin inhibitor. But do not try it without doctor guidance. I do not want you to bleed to death. I’m trying to increase readership here.

6 thoughts on ““P” is for pain and prostaglandins

  1. Is the prostigladin test considered one of the positives needed for diagnosing mcas? I can’t seem to find out if it is or not. I did my first set of tests and had one “postive” (histamine plasma) so I need to do more tests, but looking my prostigladin is also high. This is all so confusing!

    1. Prostaglandin D2 is one of the mast cell mediators that can be tested for diagnosis. It is measured through a chilled urine and/or blood test. Have you completed the 24 chilled urine test? NSAIDs inhibit prostaglandins and consequently they can affect test results.

      1. Yes i did that, and mine was high. I just contacted my doctor i guess she hadn’t got the results yet (I did them at a closer clinic since i had to go off some medications before) and copied the results i had from the other clinic. Here’s hoping i don’t have to do all the tests again!

  2. My prostaglandins were more than double normal when I had MCAS testing done. Pain is something that feels “normal”. The question is usually not am I in pain but how much pain. It is extremely worse just before and during menses. Can you tell me what dose you began with for aspirin? I have to get these prostaglandins under control. I see it’s protocol for MCAS treatment according to Dr. Afrin.

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