Tonight, I am not going to a comedy show. It's not super out of character for me for the last year. I've had a lot going on. Hell, the last three years were kind of filled with the kind of upheavals that keep you from the things you love. So here's a refresher course:
1) Mom died
2) Received bipolar disorder diagnosis
3) Planned trip to Australia
4) Planned wedding
5) Actually followed through with wedding
6) PTSD diagnosis
7) Switched jobs
Getting diagnosed with bipolar disorder about a year and a half ago was somewhat akin to receiving my first pair of glasses. I didn't change. Everything about me and who I was stayed the same. The lens I viewed the world through, however, changed. It's been a hard road the last year and a half. Navigating medication and therapy and relationships while trying to hold down my job and my relationship and plan a trip to Australia without losing my mind was difficult.
Then I came back and got engaged.
Every milestone has seemed like a boulder or even a mountain, or a Hollywood sign screaming out "Hey! You're not dead yet!". And being Not Dead Yet has felt, most of the time, better than the alternative. This was and is a nice, new feeling for me. I have had some bouts with suicidal ideation, horrible set backs, a new medication that messes with my memory and gives me constantly tingling feet and hands, but ultimately, I am feeling good mentally.
What a fucking red flag.
About six months before I left for Australia, in between all of the comedy open mics I was skipping in the throes of my True Manic Episode that led to my being diagnosed with bipolar disorder, I started experiencing severe gastrointestinal distress. I wouldn't have described it as severe then, but every time I ate anything, I experienced nausea. I explained this to my boyfriend when I headed back to work from my lunch break every day, and he begged me to see a doctor. I refused, of course, because doctors cost money, and I had a trip coming up. I continued to ignore the stomach issues I had for many more months, including when I was actually in Australia. These included nausea, severe constipation and diarrhea (you're welcome!), and horrible heartburn and reflux.
I came back to the States and promptly got engaged, as one is wont to do. My fiance wouldn't let me ignore my issues any longer, so I went to the doctor who had bailed me out when I couldn't get in anywhere to get crisis medication when I was on the verge of a suicide attempt. She explained that what I described was essentially Irritable Bowel Syndrome (sexy!) and that I should see a GI.
"But hey, while you're here! When's the last time you had a pap smear?"
Ah yes. Now we're getting to the meat of this story. Aren't you excited? I sure as shit wasn't.
I'd had an IUD for about three years, which was actually responsible for my journey into the wild world of stand-up comedy. I hadn't had anyone poke around the region that is nether since that time. Reluctantly, I let my doctor take a gander.
As you may have guessed, things were not up to code. First, we thought that it may be my Mirena. The damn lazy thing had fallen a few millimeters, resting further south in my cervix than was normal. This was causing me significant pelvic pain. We set an appointment to remove it and reinstall a different, smaller brand, the oh so sexily named Kyleena. Kyleena sounds like a Milennial branded Barbie, but whatever, I digress. Much to my chagrin, at my follow up appointment, no change. I was referred to a specialist.
The whole experience has left me questioning my body (and a lot of my friends who have had similar experiences so thanks!). Here is the thing.
I've always had painful periods.
I've always had pain between periods.
I've always had pain with intercourse.
The first time I had pain with sex, I called my mom.
My mom told me that I was probably experiencing pain because I felt guilty, because it had been so important to me to wait for marriage before I had sex.
I never brought up pain during intercourse again, rarely even to my partners. It wasn't really until my husband that I felt comfortable saying HEY um, excuse me, uh, ouch, I'm sorry, but uh, ouch.
I was so ashamed of even having a period that I couldn't bring myself to buy tampons until college. And that was out of pure necessity. I was living with a man in college and couldn't talk about my period with him. I missed a period for six months my senior year of college. Then, I bled for a month straight. I couldn't talk to him about it because it was gross and shameful. As for the pain and the cramping, that was just normal.
Right?
Listen. I had no idea that pain that lasts throughout the entire day wasn't normal pain. I didn't realize that normal cramps were more likely to be intermittent. I've just been dealing with this. I didn't realize that normal pain doesn't take over your whole body. I didn't realize that normal sex shouldn't make your entire pelvis hurt down to your bones (yes it does that to mine, what?!) I didn't realize that sex shouldn't always be uncomfortable.
Because no one fucking talks about this shit.
Current symptoms include:
Radiating leg pain
Chronic constipation (haven't had a normal BM in a year hell yeah!)
debilitating cramps on and off period
pain during sex
intermittent deep vaginal pain for NO REASON!
pain with urination
pain with bowel movements
hip pain
sciatic pain
food sensitivities
I met with my specialist today for a follow up. I've been going to pelvic floor physical therapy for about five weeks now, where they're trying to retrain my body to stop being so fucking tense about all of this pain I am in. This involves intense exercises that soon will involve "internal stimulation" - that basically means clinical fingering. My doctor listened to me discuss how I'd been feeling and asked "how do you feel about a diagnostic laparoscopy"
There are two possible diagnoses, here. The first, endometriosis, is when the lining of the uterus sets up shop outside the uterus. Colonizing bitches. It essentially glues itself to your organs. This can cause gastrointestinal problems like chronic constipation, pain with urination, etc. It loves to grow on the bowels and between the uterus and bladder. It essentially loves to grow in all of the places I Have pain. I tell you what, the first pelvic exam I had with my new doctor was a REAL treat. I don't think I've felt pain like that. She was being gentle, but deliberate. She knows what she's doing, that's for sure.
The second diagnosis is interstitial cystitis, which is essentially chronic inflammation of the bladder. Of course since this is women's health, these diseases are little understood. Thankfully, I have a kickass doctor. We are coming up with a treatment plan to figure out how to get my abdomen and pelvis back into working condition.
In the meantime, none of my pants fit me. I am constantly bloated and inflamed. I haven't been able to lose weight for months in spite of an extremely limited diet. I cannot have gluten. I am supposed to drastically limit caffeine, alcohol, dairy,red meat and all manner of things I actually enjoy. Physical activity leaves me in much more pain than I started in. It is hard for me to do anything that involves standing up or sitting down for long periods of time.
I'm a fucking joy at parties.
Mostly I'm pissed because I finally got ahead of life a little, and my body was like "Nah, bitch. Not yet." I crossed a bunch of things off of my list, and my body had other ideas. It is incredibly frustrating to do the hard work of taking responsibility for your mental health, owning all of the things that entails, reaching stability, only to have your body, of all things, jeopardize that work. I am 100 percent used to emotional pain. Treating physical pain as a priority is new and annoying.
In January I will undergo treatment that includes, among other things, actual NEEDLES in my ACTUAL vagina. This shit is terrifying. Hopefully, I will be able to undergo a diagnostic laparoscopy simultaneously to evaluate for endometriosis so we can move forward with answers.
This shit doesn't have a cure. I thankfully have one of the best doctors in the state and I am confident she will do her best to get me to a pain-free place. But it could always come back. If it's CI, there is absolutely no cure, and few effective treatments. I wish I had pressed harder when I was in my early twenties for my ob to listen to me when I said I had painful irregular periods. It takes an average of seven years from the onset of symptoms for women to receive diagnosis. I hope medicine advances further in the next few years so that other women don't have to undergo vaginal needling to feel some relief and be capable of physical intimacy.
Tonight, I am not going to a comedy show because I am in too much physical pain to do anything but lay on this couch and write about it. Lay on this couch, write about it, and freak out about my medical future. This was a lot easier when it was just my brain.
