I’m exhausted. And I don’t even feel like I’ve had to self advocate as hard as some people in this sub have.
I took hormonal contraceptives on&off for 12yrs. The first doctor that I told about my abdominal pain sent me for an ultrasound without hesitation. Ultrasound showed nothing. Fast forward a couple years and I’ve decided to go off hormonal contraceptives and it took almost a year of pain-induced delirium every time I menstruate before I realised that’s not normal. Because period pain, and pain for AFAB people in general is so normalised. So I go back to the doctor, she believes me, prescribes anti-inflammatories w/mefenamic acid. Then when that doesn’t work, doc prescribes codeine. So far, medical treatment is better than expected.
Then I get into a specialist. Gyno seems great at first. Sends me for a pelvic ultrasound to look for endo. Nothing shows up in that. But the ultrasound outcome doesn’t mean I definitely don’t have it.
So what if I do have it?
The ultrasound results that don’t show endo are not indicative of severity of disease.
Pain levels are not indicative of severity of disease.
Duration of symptoms are not indicative of severity of disease.
Surgery is the only way to know severity of disease. But surgery is already inherently taxing on the body, before you account for the reason for surgery.
So the gyno doesn't recommend surgery but says she’ll operate if that’s what I want. She suggests I take HRT but is kind enough to hear my concerns about it and doesn’t push it on me. Offers some advice on dietary changes (turmeric, fish oil). Then apologises on behalf of modern medicine for the lack of options it has for me and how little it knows about my condition.
But I’ve seen stories of people getting endo grow back despite taking HRT.
And we all know that surgery is not a one and done, subsequent surgeries are the norm.
So what the fuck do I do now?
a) Maybe go into surgery and hope that the negative impacts of surgery generally will be outweighed by a positive endo diagnosis and removal?
b) Try and find HRT that doesn’t have terrible side effects?
but choosing option b doesn’t preclude me from having to take option a.
If I pick an option, How the fuck do I know if either of these choices were effective if the symptoms aren’t indicative of severity? Am I just expected to live with the possibility that this disease may or may not be fusing my insides together?
We live in the dark ages of ovarian-adjacent health. People in the future will look back on this with bewilderment at the historical acceptance of our suffering and oversight by the medical community.