today’s appointment
Today’s doctor’s appointment left me with mixed feelings, and wanting to cry.
I had an appointment last week (I had to cancel my last one and move it to this date) with my gynecologist about positive effects of infliximab, my medication for my autoimmune diseases, on my cycle. I have PCOS and suspected endometriosis, and that has always caused symptoms like 60+ day cycle, intense menstrual pain, extreme blood loss, nausea, migraines, and my entire body feeling very bloated and inflamed during. But after my infliximab loading infusions of 300mg, those went away completely and I had the first ever normal cycle and symptomfree period of my life. I felt normal, no pain, no bloating, no inflammation. I talked about it in this post but periods are like a 3 week thing to me; it begins a week prior, then the actual period, then another week of recovery. So having absolutely no symptoms, no pain, normal cycle length was absolutely amazing. I felt like a person. But with now months on my 120mg autopen injections, that positive side effect went away month by month, slowly. Now everything is back to how it was.
My gynecologist, who’s a (cis) woman, was very happy for me and supportive of me talking to my gastroenterologist about possibly adjusting my dose to have these benefits again. For her, it was clear it was connected.
So I was there today. I usually absolutely love my gastroenterologist. So far, he took me seriously always, he listened, he was always available via email, he squeezed me in no matter when, he ran all kinds of tests and always tried hard to find a treatment that works. He diagnosed me correctly and saved me. I consider him to be what all doctors should be like and all visits have been pleasant. But not today.
Gynecology is obviously not his field and he is a (cis) man. So while he really listened and was torn about what to do, I still didn’t feel like he properly took it seriously. He initially misunderstood and asked “Well, what’s so bad about a longer cycle?” not understanding or knowing that that’s one of the symptoms of my gynecological illnesses. He didn’t seem to care much about the other symptoms, and how my period otherwise flares up my other stuff. He looked conflicted, but ultimately said he would only dose-adjust for Crohn’s related symptoms, not a positive gynecological side effect. :( I even had a flareup the last ~two weeks, last week being very severe, making me worry I stopped responding and built antibodies - but for now, he wants to continue monitoring it and if anything happens again, up the dose then.
And even though it happens only every second month, I honestly consider my period to be basically the same as my Crohn’s flare-ups in terms of severity and how disabling it is. I call in sick for my period every time except for when the higher dose of infliximab did its thing.
Is it guaranteed that a higher dose brings that effect back? No, of course not. It could have been a brief adjustment period of my body to the meds that I’ll never get back. And of course I am aware that higher doses mean higher risk for infections and antibodies. I’m not mad that he didn’t immediately increase the dose; better to be cautious than lose something that works for what it’s intended. I’m just disappointed at how difficult it is for people like him to take menstrual symptoms seriously and try to relate.
If you don’t have a uterus, think of it as gut cramps and being down with the flu, but without the snot and cough - that’s my life. It’s literally not that hard to imagine anything equivalent or at least try. I can imagine how it feels to be stabbed without having been stabbed. And even if you can’t, you usually don’t have to - my gastroenterologist doesn’t have Crohn’s or Bechterew’s disease, yet manages to empathize enough with those symptoms and take them seriously, and even when Bechterew’s is not in the bounds of gastroenterology at all.
It’s always menstrual stuff you have to fight to get taken seriously and that male doctors don’t feel the need to know anything about, not even basics, even while often having wife and daughter; even though the illnesses they diagnose and meds they prescribe absolutely affect that. The most they care about is potential fertility issues or making sure the patient takes BC during teratogenic treatments like methotrexate. It’s a puzzle piece of a wider medical problem where women are less believed, less tested on and tend to have different symptoms for the same disease and different side effects to the same medication.
I also hate playing telephone between doctors. I can neither professionally answer the questions my gynecologist has about my medication dosage and gastrointestinal stuff beyond my own, and I can’t be a professional gynecologist to my gastroenterologist. And between it all, I don’t wanna come across as a patient who knows too much or sounds like WebMD or convey something wrong accidentally. Ideally, those two would just get on a call and hash it out and tell me the result.
Currently getting my period again and I will sure as hell think about my gastroenterologist when I curl up in pain the next days.
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Published 27 Mar, 2025