Journey to a Hysterectomy: The Last Month

Content Warning: Discussion of female anatomy, in graphic and unpleasant detail. Discussion of gynecological problems, in graphic and unpleasant detail. Description of medical abuse. Ableism, sexism, ageism, all of which are internalized, active, and institutional. Reminder: I refer to these things as “content warnings” rather than “trigger warnings,” because I do not take responsibility for the mental health of my readers, some of whom I do not know well. I have listed the warnings that jumped out at me, but I may have missed something. I do not take responsibility for knowing the inside of anyone’s mind other than my own. Also, all experiences are mine and mine alone, and may not be suitable for generalizing to any larger group.

A little over a month ago, I finally went to see a new gynecologist, the one recommended to me by my primary care doctor. I was nervous, because I’m always nervous when seeing a new medical professional, and because I’d never seen a male gynecologist before.

It turns out I found one of those rare gems in the profession: a male doctor who became a gynecologist because he realized that, being male, he would be able to get things done and be listened to in ways that a woman wouldn’t, and decided to use that to help women who needed medical help. As a result of this line of reasoning, he’s also predisposed to listen to his patients, which my primary care doctor had told me when recommending him.

My first fear was that it would take me months to get an appointment. As a new patient, trying to see a specialist, I have often had the following experience:

“Hi, this is Dr. [NAME]’s office, how can I help you?”
“I need to make an appointment.”
[Discussion of my problems and reason for needing an appointment urgently, and the fact that I’m a new patient.]
“We can work you in three months from now.”

This time, I got “Can you come in later this week? We have an opening.” And so it went.

The actual appointment

Everything happened shockingly fast. I went in, checked in, and gave all my data – height, weight, blood pressure, medical history rundown, medications taken, all the usual stuff – to the nurses. They were very welcoming, knowing I was a new patient, and explained that I would be getting a pelvic exam that day, though not a pap smear because I was menstruating.

I explained my anxieties surrounding pelvic exams, as a result of having been forced to receive them without consent from emergency doctors in the past. They assured me that a female nurse would be in the room at all times, as a witness to all practices, and asked if there was anything else that would help me be more comfortable, and asked me if I would be willing to sign a consent form before receiving the exam, so that everyone would be on the same page regarding that issue.

I responded that I need clarity and thorough explanations. I am very familiar with my own body and its issues, and I have had a LOT of examinations of various types. I know the basic procedures, but it helps me to know exactly what is going to be done, in what order, when, and why, and for how long. They were extremely accommodating, and never made me feel like my requests were burdensome or disrespectful – and that was when I started to feel like this might actually go somewhere positive.

Another experience common to both women and disabled people, and therefore particularly common to disabled women, is that of being treated as though we know nothing about our own health, and being treated as though self-advocacy in the doctor’s office is somehow disrespectful of the doctor’s own expertise. Now, obviously, it is possible to advocate in a manner that is disrespectful – but advocacy itself is not, by definition, disrespectful, and I have long believed that any doctor who treats it as such is not one whom any patient should trust with their health.

When I actually met the doctor, all of this was borne out: he started by telling me he was glad I was so involved in advocating for my own health, and was glad that I have taken the time to learn about my own conditions. He asked me clarifying questions, obviously not questioning the validity of my knowledge but just trying to get as much information as possible. His questions were beautifully formulated, because I could tell that if, by chance, I HAD made some huge mistake or knowledge gap regarding my health, his questions would have caught it, but their actual goal wasn’t to trip me up or find such things. He started his questioning from the assumption that my own information was all correct and based upon proper research and inquiry from other doctors who also knew what they were doing unless I said otherwise.
He then explained the exact procedure of the pelvic exam, the purposes of it, including identifying any reasons why I might not be a good candidate for a hysterectomy. A nurse entered the room, and at this point I signed the consent forms.

He left the room, and I changed into the medical wraps – you know the ones, the disposable paper robes – and arranged myself on the chair for the exam. The nurse entered first, asked if I was ready, and the doctor came back in only when I gave permission. He asked permission for every step of the process, from even before the very first time he touched my body.

This is what we should expect from this kind of examination.

The examination was painful, but it couldn’t really have been anything else: I experience pain in my pelvic region and reproductive system constantly. (A note about this: when someone who experiences chronic pain says they are in constant pain, this is not an exaggeration. I am in pain 100% of the time. If I am awake, I am in pain. End of story. Pelvic pain, in my reproductive system, is part of that, and has been for almost two decades.) Poking directly at it makes it worse, and there’s not much way around that. He did some very specific poking and questioning, and came to the conclusion that there is nothing else that could cause the specific symptoms I experience except endometriosis, and also that I am an excellent candidate for a minimally invasive hysterectomy, the latest procedure and the highest standard of surgical care of this variety.

I burst into tears on the spot. I was a little embarrassed afterward, but I just couldn’t help it. I’d entered the office more than half convinced that I would be told I wasn’t a candidate, or that we should try a bunch of other things first, possibly including some things I had already tried multiple times before. And here was a doctor telling me that exactly what I thought I needed, was what I in fact needed, and he was going to help me make it happen.

We started filling out paperwork, setting a surgery date, making lists of things that had to be done before it, getting insurance approval for the whole thing (which, it turned out, with a male doctor being very insistent, went quite smoothly).

The whole thing took less than an hour.

Pre-operative appointments
I needed four appointments: an ultrasound, a pre-operative appointment with my primary care physician to clear me for surgery, an appointment with my neurologist to discuss my risk factors regarding hormone replacements and therefore whether or not my ovaries should be removed as well, and a pre-operative appointment with the gynecologist, who will also be my surgeon, to give me more information. Additionally, I was told to expect a phone call from a hospital nurse.

The ultrasound was primarily to make sure there were no surprises lurking in my system that might mean the surgery could be more complicated than foreseen. Because I was still menstruating, I couldn’t complete the standard procedure of drinking huge amounts of water and not urinating for hours, without extreme pain, so I opted for a transvaginal ultrasound as, oddly enough, the less uncomfortable option. I’d had both before, so this decision came from experience. This is not to say that a TVU is pleasant; particularly during menstrual cramping, it was extremely painful, and again I had to run through all of my anxiety issues and consent issues with examinations, but fortunately I again was working with consummate professionals who understood exactly the gravity of the issues at hand. The procedure itself didn’t take tremendously long, fortunately, but the pain lasted for days. The images were forwarded directly to my gynecologist, and nothing surprising was found; fibroids in my ovaries, but we’d known about those.

The neurology appointment was very involved, going over familial and genetic risk factors of stroke, as well as my own complex seizure and migraine history. We eventually concluded that because the hormone replacements used after hysterectomy are natural hormones rather than synthetic, the risk factors are sufficiently lower that I should go ahead and have my ovaries out.

The pre-operative appointment with my primary care physician was a physical and some bloodwork, and nothing remotely unexpected came up.

Then came the nurse phone call, which was mostly an interview in which I gave every bit of information about my health history anyone could think to ask for.

The pre-operative appointment with the gynecologist involved bringing my husband with me, and getting kind of an infodump regarding the last few days of surgery preparation (which will be part of the next lovely entry), what to expect afterward, how the surgery itself will be performed, and a whole lot of other information.

I’m now in the stage of that final preparation, and will be posting more about that somewhere around Thursday.

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