I usually like to humble-brag that it is impossible for me to procrastinate. If I try to avoid doing something, the knowledge that I have to do it will weigh on me, heavier and heavier, until it is easier for me to just do the thing I don't want to do than it is to carry the weight of the guilt about not actually doing the thing I know I should do. I must have been working out my guilt-carrying muscles though, because you lovely folks are overdue for an update about the results of my surgery, and I have been procrastinating writing up this post like a goddamn guilt-powerlifting champion. I'm not 100% certain why I've been avoiding telling you about my surgery results. I've been telling myself that it's because I've been busy - which I have been! I've been going to lots of follow-up appointments, and physical therapy, and doing paperwork for my disability leave, and my husband and I are in the process buying a little house and moving. However, I've also had time to write a detailed account of my poopsplosion and to read the entire Harry Potter series (including the Cursed Child, which is not as bad as I remembered it being), so obviously I could've written this up if I was so inclined. And I didn't. The results of the surgery are as follows:
Instead, the ending I got was something along the lines of, "ok, well, the good news is your uterus looks SPIFFY, but also now you've got ANOTHER incurable chronic pain-causing syndrome and you're going to have to stop eating all your favorite foods like tea and chocolate and alcohol and spices and citrus for probably forever, and also I don't really treat that, so here's a referral to a different doctor, his next opening is in March." This was a less-than-satisfying ending, and I confess that I have been resisting it and still eating my citrus fruits, even though I generally advise people to trust their doctors and to trust scientific consensus. But see, here's the thing: I don't really have the right symptoms for interstitial cystitis. Yea, yea, I pee all the time like a goddamn racehorse, but I also drink a crapton (like 100-120 fluid oz) of liquid a day to keep from feeling dizzy due to POTS. My pelvic pain is located more at the sides of my pelvis, in and around my hip joints - not in my bladder like it is for typical interstitial cystitis. I don't have the burning pain while urinating, or any relief when my bladder is empty. Obviously, my bladder bled with the scope and hydrodistension, which indicates inflammation, but that inflammation could be a response to something else being wrong, rather than being the source of my pain. So I started to fall down that most inadvisable of rabbit-holes - self-diagnosing using the internet. Dr. Lady-Strange had previously remarked that my pelvic floor muscles seemed too tight and that I'd need pelvic floor physical therapy anyways, so I started there. I found something called Pelvic Floor Dysfunction, where the pelvic floor muscles are too tight and can't relax. This causes all sorts of symptoms that I have, such as chronic constipation, bladder inflammation, pelvic pain, hip pain, low back pain, pain with intercourse, and on and on. In fact, Dr. Kenneth Peters (Chair of Urology at Beaumont Hospital in Michigan) has even written this gem: “Only a fraction of patients with the key symptoms of IC/BPS – urinary frequency, urgency, and pelvic pain – have ulcers within the bladder. And many of the patients who are diagnosed with IC/BPS are found not to have bladder pathology as the name implies, but rather pelvic floor dysfunction.” And so, since I had to wait until March to see the new urogynecologist anyways, I decided to take matters into my own hands and find a pelvic floor physical therapist who could examine me and tell me what they thought, and start treating me if they agreed my pelvic floor seemed to be dysfunction-ing. I did me some intense internet searching, and found a group of pelvic floor physical therapists nearby who not only kick ass, but also accept my health insurance. On my first meeting with the pelvic floor physical therapist, the heavens opened and angels sang as the therapist said that pelvic floor dysfunction is common in people with Ehlers-Danlos Syndrome, and that she had seen many patients with exactly my symptoms, and that she was able to help them and that she was certain that she could help me. Thus, I have started going twice a week to the most awkward physical therapy that I can conceive of. And, like a molasses-slow miracle, I am doing a bit better. I have a little less pain, a little more energy, and a lot more hope.
We'll see what the urogynecologist has to say, of course - maybe he won't agree that pelvic floor dysfunction is at the root of so many of my issues. But I hope it is. I really want a satisfying end to this chapter. I also want to eat citrus fruits.
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Grace Daly
I'm young, hot, and have multiple chronic illnesses. Come with me on this magical fucking journey. Archives
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