So far, I have been somewhat vague on here about what illnesses I do or don’t have. I had originally kind of wanted to wait until I had more definitive answers, but after more thought, I’ve decided I don’t want to wait. I don’t know how long it will take to get more definitive answers, or whether I will ever have a definitive answer on certain symptoms. And (as my husband pointed out) there is some validation and sense of community that I feel in having answers and diagnoses for what is going on, which makes me want to ‘own’ them even if it’s not certain, and also open myself up to the community of undiagnosed chronic illness sufferers. 

For about a year, my only diagnosis was PCOS (polycystic ovarian syndrome). For those of you who don’t know, PCOS is mostly considered a hormonal disorder (although the exact cause isn’t known) that affects pubescent and post-pubescent individuals born with a uterus and ovaries. The primary symptoms are irregular menstrual cycles (caused by irregular ovulation or anovulation), increased androgens, and as the name would suggest polycystic ovaries, although for diagnosis you only need two of those three. It can also cause weight gain, excess hair growth, acne, fatigue, mood changes, and other unpleasant symptoms, and the abnormal ovulation can lead to fertility issues.

I was diagnosed by an endocrinologist based on my elevated androgens and highly irregular cycle. Of course, this was after me telling my former primary care doctor for years that my cycles were irregular. I kept being told first that they would get regular when I got older, and then that they were probably more regular than I realized (even though I had been tracking them since I got my first period). After years of what were probably symptoms through high school and college, I eventually got a new primary care doc who after my first appointment referred me to an endocrinologist.

Since then, I have had other symptoms that two gynecologists recently put together to clinically diagnose me with endometriosis. For those of you who might not know what that is, it is when tissue similar to (not identical to) the lining of the uterus (the endometrium) grows outside of the uterus. Usually it is found elsewhere in the pelvis, such as the outside of the uterus and ovaries, as well as not infrequently around the GI tract and bladder. However, it has also been known to rarely be found in other more remote places, such as the diaphragm or even the brain (very very very rare), and has even been found very rarely in people born without a uterus and ovaries (and can occur even after the reproductive organs have been removed). It often causes pain that may or may not be tied to the menstrual cycle, fatigue, and can cause infertility, along with other symptoms or even more serious complications depending on where it is growing and how deeply it has penetrated.

For me, endometriosis seems to be causing pelvic and vulvar pain, gastrointestinal pain and symptoms like diarrhea or bowel movement urgency, frequent urination and some urine retention, some cyclical bloody stool, and probably other things. Unfortunately, the only way to definitively diagnose endometriosis is to perform surgery, find endometrial implants, and confirm with a biopsy. However, endometrial implants could reside in places the surgeons don’t look (making false negatives very possible), and most doctors won’t perform surgery until more conservative treatment methods have been tried (i.e. various hormonal medications, frequently referred to as hormonal birth control).

So for now, I am leaning towards trying this conservative hormonal treatment. Even though last time I tried hormonal contraceptives I got all kinds of weird side effects, and even though I’m honestly not crazy about messing with my body’s hormones. Hopefully it will go a bit better this time.

I’ll talk about some of my other issues in a part two. To be continued…