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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Blog Reactivated! My Journey to a Hysterectomy: Prologue

Hi, all. I’m back. It’s been a while, because I’ve been dealing with graduate school, a diagnosis of multiple sclerosis, and buying a condo.

It’s been a roller coaster ride.

Most recently, things are taking a wonderful upturn in that I’m scheduled to get a hysterectomy in early June. This might not sound at first like an upturn, but I have been trying to get this surgery for a little over a decade. It’s been a long journey to get to this point, and it’s going to be quite a trip going through the surgery and recovery.

Given the degree to which there are social justice issues of feminism and disability rights involved in my case, I’m going to blog it all here, among other entries, in the hope that perhaps someone else out there might not have to invent the same wheel. This entry can be considered a prologue of sorts: how I got here, what the last twenty years of my reproductive health have been like, why it is so important for people like me to be able to have access to this kind of care, and what has kept me from having it until now, and what finally made it possible.

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.

The Early Days

I started menstruating late for people my age, late age 13, almost 14. My parents went out of their way to make it an affirming, empowering experience. It might have worked if I hadn’t started displaying similar symptoms to my mother – heavy bleeding, awful cramps, nausea and illness, unreliable cycles – from the very beginning. I started taking hormone treatments before I was 15.

I don’t know when I first started missing classes because of period symptoms, but it was before college. It can be hard to tell, even in retrospect, because it was also around this time that my health in general started to decline. As my gynecological symptoms got worse, though, which they did gradually year by year and sometimes even month by month, I missed more classes. Fortunately, I attended a women’s college, where people usually understood this, but because I didn’t have an actual diagnosis for any of my health problems, I wasn’t able to receive any accommodations, and my grades suffered.

I was constantly faced with skepticism regarding my experiences, except by my fantastic primary care physician and gynecologist. Specialists were convinced I was exaggerating. Insurance companies refused to cover tests, because I was “too young” to be experiencing chronic pain. And, though my gynecologist tried to get me tested for a number of things, insurance companies would not even consider any kind of testing that could lead to an intervention, because I was now considered to be “of childbearing age,” once I was 15 years old.

College, Graduate School, and Getting Married

I made it through college – barely. My gynecological problems were just a subset of my larger health issues, which still had no names attached. I started to learn during my college years just how dismissive emergency room physicians could be of a woman’s pain.

During my senior year of college, I participated in a health study, designed to help improve the bedside manner of young male doctors working with female patients. I was asked to submit a recording of a detailed description of my menstrual symptoms for use in their training program, which I did, in exchange for $50 and the knowledge that perhaps it might make a difference.
Only it didn’t, because they rejected my sample on the grounds that my description might scare the young male doctors.

This was when I first started realizing how broken our system is. Here is a rough approximation of the description I gave:

“In the week before my period begins, I experience depression, mood swings, anger, anxiety, and general peak reactions to all stimuli. It feels as though, if there were a volume knob on the world, it has been turned all the way up. Colors are bright enough to hurt, everything sounds loud, my skin feels everything more sensitively, and I get overstimulated in minutes. This then becomes even more intense on the first day of my period, finally calming down around the third or fourth day. During the first few days of my period, I usually feel an intense need to close myself in a small space for safety.
I haven’t ruined a pair of underwear in years. In addition to getting plenty of warning from PMS, when I start menstruating, I know it, because I feel a tearing sensation deep inside me, just above the center of my pubic bone, followed by an intense nerve pain going all the way out along my pelvis. I then experience what feels very much like the entire contents of my abdomen falling out, along with more tearing. I start bleeding intensely, usually going through menstrual products at two to three times the rate listed on the box. I bleed for about a week, with these symptoms constant throughout. I experience intermittent nausea, headaches, full body aches as if I have the flu, spasms in my arms and legs, and dizziness and blurred vision. About once a year, the bleeding gets intense enough that I pass out, or the pain gets bad enough that I can’t hold back vocalizing it, and I go to the hospital.”

Apparently male doctors can’t handle this information. The word “traumatized” was actually used in the feedback I received from the program.

If the people in whose hands I must put my healthcare decisions might be “traumatized” by my experiences, and this is considered a valid reason to discard my testimony, I thought, this explains so much about everything that has happened to me so far.

I started watching for signs of this disregard in the system, and it immediately leapt out. I couldn’t un-see it. I worried that perhaps I was acting on confirmation bias, and I tried to un-see it. I must be overreacting, I thought. I was being overemotional, irrational, refusing to take responsibility for my own problems.

I started doing research, and found that, in fact, my case wasn’t even unusual, much less unique.

My health continued to decline as I completed an intensive Master’s degree program, and I started the work of educating the men in my life, most importantly my husband-to-be, about these problems. Initially, I ran headlong into the stigma surrounding women’s health, but he was fantastic about breaking down those barriers for himself as well as me. It took work, before he was able to go down the family planning and women’s health aisle of a pharmacy and get my products without being embarrassed, but he laughed at himself until he managed – and the effects of that work have lasted through today, when he can roll his eyes right along with me at guys looking furtively around or even apologizing to cashiers while buying boxes of tampons.

The other, even more important, support he gave me was these three words: “I believe you.” He didn’t necessarily understand, and it took some work to really make that communication happen, but he was willing to start from the assumption that I was telling the truth, which was more than most of the people in my life, and more than almost any health care professionals, were willing to do.

The Last Ten Years

A few years into my marriage, in late 2006, I discovered I was pregnant, in just about the most traumatic way possible: I miscarried.

I thought at first it was just a really awful period; I was miscarrying early enough that the two were almost indistinguishable. I took a pregnancy test when it got bad enough that it was notably different from previous really bad periods, and it came back positive. And we went to the emergency room.

First, the people at the desk belittled my concerns, and I passed out on the emergency room floor from the bleeding.

I woke up in a bed in the emergency room, and the doctor proceeded to tell me I had fainted from the sight of my own blood, as if I hadn’t seen it every month for the previous twelve years.

He refused to let me see the hospital’s gynecologist, and said he would do the pelvic exam himself. I refused, and he told me I didn’t have a choice, and said he would have nurses hold me down while he performed the exam. Rather than do that, I let him – and it took almost a decade before I fully realized or admitted to myself that this was abuse and assault.

He then diagnosed me with hysteria.

Let me say that again.

He formally diagnosed me with hysteria. In 2006.

I was furious. I had connections with the hospital through my father-in-law, who ensured that this doctor lost his job. (Unfortunately, I discovered through a car accident about eighteen months later, he found a job at another hospital nearby. I made sure he lost that one too, because he handled my car accident about as well as he handled my miscarriage. I have no idea where he is now.)

About a year before this, my actual gynecologist had retired, after being diagnosed with breast cancer. She had done amazing work for many years, and earned her retirement, and I wish her all the best, but I still mourn the fact that I can’t work with her anymore.

I looked for a new gynecologist, and saw several, all with the same results: they see “fibromyalgia” on my chart, and immediately dismiss any and all claims I make. They would not give me painkillers for my symptoms, even non-opioid ones. They would not give me muscle relaxers for my cramps. They would not give me anti-nausea medications. And they certainly wouldn’t consider a hysterectomy, even though the final recommendation from my previous gynecologist had been to work toward one as soon as I turned 35, the age at which insurance companies would finally consider covering the surgery.

Where I Am Today

As a result of the MS and aftereffects of a concussion in 2013, I have a sleep disorder. I sleep a lot, and very deeply. One quirk of this is that pain sometimes shows up in my dreams, in some narrative form that interrupts whatever was happening.

I have had repeated dreams in the last year while menstruating, in which I get shot in the abdomen. Recently, there was a twist in this, that I had to have surgery, an emergency hysterectomy. I woke up sobbing, because it was not real. My husband held me while I cried for over an hour, repeating “I want it gone.”

By telling that dream to the my primary care physician at the right time, I finally managed to get a recommendation for a doctor who specializes in getting women the healthcare they need.

It turns out that doctors are faced with similar weaponized statistics as teachers: certain outcomes are categorized as “failures,” even if the patient feels otherwise, and a certain proportion of failures on a doctor’s record can put their license in jeopardy. (I am terrified of this happening to my primary care physician.) I have tried everything other than surgery, at this point, and even doctors who have admitted that it is probably what I need have then sent me away because they could not perform it.

I now work with a gynecologist who recently put together a practice entirely out of experienced doctors who can afford those “failures” on their records, and have decided as a group to take those on, in order to give patients the healthcare they need, and when they eventually build up enough failures that their licenses are revoked, they’ll be old enough for retirement. In the meantime, they’re racking up awards alongside the black marks, which means they’ll be able to last longer.

I have a hysterectomy scheduled at the beginning of June. I have never been happier about medical news.

It should not have taken me twenty years to get the surgery I need, first until some arbitrary group of insurers decided I was old enough that I might not change my mind, and then until I found a doctor who could afford to have “gave effective care to a patient in pain” on their record.

This attitude also further stigmatizes chronic health problems that can cause a woman to be unable to bear children, through hysterectomy or otherwise. In my case, literally the worst possible outcome was considered to be “woman is unable to have children.” Not “woman dies of excessive bleeding on emergency room floor,” which has nearly happened on several occasions, not “woman is disabled by gynecological symptoms,” which would be true even if my other health problems magically vanished tomorrow, or even “woman’s quality of life is drastically reduced by chronic pain.” My decisions about what should be prioritized in my health care were disregarded at every turn, until yesterday.

And now I still have to jump through administrative hoops to get everything covered, and make sure that I receive the care I need surrounding my surgery (e.g., make sure the hospital will give me painkillers afterward, since I have fibromyalgia and am therefore considered a drug seeker by definition, as I discovered the last time I was hospitalized).

This is, as my new gynecologist put it, “unconscionable.” And I am one of the lucky ones: I can afford my health care, I can advocate for myself, and I am supported.

I am thrilled and excited that this change in my life is about to happen. I want this so desperately I don’t have words for it. I cried all over my new gynecologist when he told me I could have the surgery. I am aware of the dangers and risks of surgery, but I have no qualms about this course of action.

This is right for me. It is so important that I be able to pursue it. It’s an amazingly novel feeling, being in control of such an important aspect of my health, and I am trying to remember to take the time to revel in it.

I am proud of this accomplishment. It has been a long road to get here, and I’m not done yet.

I am not a failure on the part of my doctor.

I am not broken.

I am not incomplete.

I am not a tragedy.

I will bear my battle scars proudly.