Why the Process of Diagnosis is as Bad as Endometriosis
Hehe, that rhymes. For a long time I wanted to hold off talking about endometriosis on here until I had a solid diagnosis. But then I realized what I want to talk about is the process of going through this, not necessarily the disorder itself. This is not to seek advice. I just feel so alone in this process, and I don't want anyone else to feel like they're the only ones suffering with it.
For years I've dealt with excruciating stomach pain, usually related to my menstrual cycle. It starts with ovulation, stops for a couple days, then comes back from the time I'm pmsing until my bleeding has ended. So basically, theres like 10 days in the month where I'm not in pain. Some days are better than others and I'm able to just breathe through it. Others land me in the hospital and take hours of IV meds to get the pain levels down to where I'm able to go home. All the medical tests come back saying the scary things (liver, appendix, kidneys) are all super healthy. Because of that and how it relates to my cycle, the drs are leaning towards endometriosis.
Through this process I have learned that the medical world is very much male. The majority of doctors that I've seen in the ER are male. They know very well how to treat anything a man would experience. But go in with something distinctly female and it's a shot in the dark to how you're going to be treated. I've had everything from being told "it's in my head" to "go home and take some advil, sweetheart" to men who treat me with kindness, compassion and understanding. The impact that it's had on me is devastating - it's made me feel crazy, over dramatic, weak and worthless. It's gotten to the point where I'm am afraid to go in simply because I don't know if I'll be taken seriously or made to feel crazy. Keep in mind, this is pain where I physically can't walk or breathe in a spot where there could be a lot of other serious issues. When it gets that bad, it's safest to go in to rule out the appendix or anything else. I can't tell you the number of times Isaac has had to hold me after a hospital visit while I bawl my eyes because some doctor gave me the brush off.
Even the diagnosis of endometriosis itself is one we still don't know much about. I now have a team of awesome female doctors and nurse practitioners who've taken the time to explain that once the serious things are ruled out, pain in that area for women generally just gets lumped into endo. Something there is no recognized cure for, and the only current medical treatment is taking birth control or hormonal. The only way to diagnose it is with surgery, and even then they can't always find it. It boggles my mind that there isn't a better way of dealing with this yet.
I've got almost a year to wait until surgery. Until then, I'm going to be testing out a bunch of different alternative therapies to see what helps, what doesn't, and if anything makes it worse. Hopefully I'll find some tricks to managing the chronic pain. If not, at least I can say I've tried.