As a general rule, I think prejudice is bad - I am greatly opposed to sexism, racism, ableism (duh), homophobia, etc. Go ahead and think of any sort of negative preconceived notion someone could have against a group of people, and it's a good bet that I'm going to think that having that negative preconceived notion is bad, and I'm going to search for it in myself and do my best to destroy it so I can be a more loving, accepting, understanding person. Except for male gynecologists. For the last seven years, I've thought male gynecologists could all go fuck themselves. I've had pretty bad experiences with three different male gynecologists in my life, which were:
With these experiences in mind, when Dr. Lady-Strange referred me to see a male urogynecologist who she said she trusted and thought was the best, I was skeptical. My skepticism grew when I saw his name and picture. Dr. Norbert Owen Body*. Dr. N. O. Body. Dr. Nobody. In his picture, his eyes seemed to bore through my skin, my organs, my bones, and into my soul, and then out through my back so ultimately he was looking at the wall behind me. That is some Batman villain shit. I had a follow-up appointment with Saint Claudia (my primary care provider who I literally trust with my life) anyway, so before scheduling with Dr. Nobody, I went to talk with her. She confirmed what Dr. Lady-Strange said: that Dr. Nobody was an expert and very well-respected and well-liked by his patients, and the best urogynecologist for me to see in the area. ...fuck. Fine. I'll schedule the appointment. As I mentioned in my last post, I've been going to pelvic floor physical therapy, which has been helping, and I've been hoping that the root issue I'm facing is Pelvic Floor Dysfunction rather than Interstitial Cystitis. I don't want to have to restrict my diet, and also I feel like I'll have more power to treat Pelvic Floor Dysfunction than Interstitial Cystitis. Also, I'm frightened of catheters. All of this adds up to me walking into this appointment with a lot of anxiety. ...which was refreshingly, blessedly, unneeded. When Dr. Nobody walked into the room, I was relieved to see that his photo was very unflattering because he had regular human eyes. The first thing he said was something like, "I understand that you're a complicated case, so I've made sure to clear extra time on my schedule to talk with you." He then allowed me to tell him, in my own words, what my symptoms are and their impact on my life, and what treatments I've tried. He did a great job of not interrupting me except to ask important clarifying questions, and really seemed to believe me and take everything I said at face value. Best of all, he knew a lot about hypermobile Ehlers-Danlos Syndrome. And I mean A LOT. Not in the "I saw that you have hEDS on your chart so I googled it before I walked in here" way. Not even in the "I watched a short lecture on youtube from a medical conference on hEDS" way. In the "I have actually studied this and understand it on a deep level" way. His nurse later mentioned to me that he has a particular fondness for complicated patients and enjoys the challenge, and that she could tell he was excited to be the doctor treating me and would definitely be researching my case on his own time. What a gift. And, the most delightful gift of all, he believes that my hEDS is at the root of these issues and that I do have Pelvic Floor Dysfunction. He explained that though I do have a diagnosis of Interstitial Cystitis, that there are different subtypes, and the subtype I have is called the "Pelvic Floor/Myofascial Pain Phenotype", which walks hand in hand with Pelvic Floor Dysfunction. This subtype shows less bladder inflammation than the other subtypes, and usually treatments involving bladder instillations don't work well (so, no catheters!). Also, usually patients with this subtype don't have many diet sensitivities (so, there is a very low likelihood that I'll have to restrict my diet!). Treatment involves a lot of pelvic floor physical therapy and controlling pain effectively to help calm down overactive nerves and muscles. Well, I'm always down for physical therapy and for feeling less pain. Sign me up, Dr. Nobody. The tall thin doctor and the glamourous primary care provider shake hands, while the glamorous primary care provider says, "Welcome to the club, Dr. Nobody." They are standing near a sign which reads "Grace's Healthcare Team Bi-Monthly Mixer", under which several other healthcare providers are gathered and chatting. Ultimately, the conclusion I've drawn from this experience is that prejudices are bad. Maybe Dr. Nobody will even defy the odds and get "canonized" one of these days. The other conclusion is to ask medical professionals you already trust to give you recommendations whenever possible, so that weird men don't tell you that your vagina is as snug as a bug in a rug. *Dr. Norbert Owen Body (Dr. Nobody) is not his real name. Out of respect, I try to avoid identifying anyone too specifically on this blog. I do assure you, though, that Dr. Nobody's real name is incredibly Batman-villain-esque.
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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. |
Grace Daly
I'm young, hot, and have multiple chronic illnesses. Come with me on this magical fucking journey. Archives
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