The Origin of Pain

Or, The Worst Thing That’s Ever Happened To Me – Yet!

Or, How the U.S. Health System Fucks You Up, Then Leaves You High and Dry

Or, The Insidious Ways Doctors Weaponize Women’s Strength Against Them, Because Women’s Pain Is Not Taken Seriously and Maybe It Never Will Be

 

Part I

How to begin.

That’s always the question with chronic health problems. Do I begin fifteen, twenty years ago? I could. Or I could start ten years ago, when my more recent issue began. Or eight weeks ago, when that issue became infected. Or I could start on the day I ended up in urgent care.

I’m already tired.

Where do I start when I’m already so fucking tired of telling this story?

Age: 14

I’ve been plagued with gynecological problems my entire life. When I got my period as a teen, it came every two weeks, for two full weeks at a time, leaving me perpetually exhausted. My mom took me to my first gynecologist, a kindly middle-aged woman who tutted sympathetically as I told her my woes. At the end of my spiel, she gave me a prescription for birth control pills.

“These will regulate your period and make you feel much better,” she promised me.

I left her office feeling so adult. Despite not even having been on a date yet, let alone had sex, I felt like I’d taken some important step towards womanhood. I knew other girls in my class who’d been on the pill for years already – whether for medical reasons or because they were actually having sex, I wasn’t sure, and therefore, I found them enormously mysterious and worldly.

Being on the pill felt like a badge of honor.

Age: 19-22

For the first time, the pill was giving me noticeable side effects. Or maybe I was just noticing the side effects for the first time.

I had a steady boyfriend I was crazy about, who I loved getting naked with, and who I wanted to have sex with.

My vagina, though… did not.

Looking back, there were signs it would be a problem. Despite being incredibly attracted to my boyfriend and having a great sex life (sans actual intercourse, which I knew I wasn’t ready for yet) I noticed at one point that I wasn’t getting as wet as I used to. I’d never been able to get very wet, a known side effect of the pill, but it was getting worse.

When I told my gynecologist (a new one, in a string of so many gynos I had over the years – they were always dropping off my health insurance network, never to be seen again), she changed my birth control pill brand. That was always the solution, apparently.

And for a little while, it worked. Sort of.

Later – maybe weeks, maybe months – I was making out with my boyfriend when I had what I now realize was one of my first ever panic attacks. It hit me out of nowhere, for no apparent reason. After that, my sex drive dropped dramatically and I started to feel panicky often, especially around the thought of doing anything sexual.

It was scary. I loved my boyfriend, and up until a couple of weeks earlier, I’d legitimately loved everything we did together. The sudden, inexplicable change made me feel crazy. Again, I went to my gyno (or a gyno, I’d stopped claiming them as mine), and again, she changed my pill brand. And again, for a little while, it worked. Sort of.

When my boyfriend and I finally decided to have sex, though? It simply did not work.

I’d had trouble with tampons for as long as I’d been using them – another sign – and a penis was, despite my fervent hopes, no fucking different.

It was like hitting a wall. A very painful wall.

Age: 26

I was crying in a plush white bed on my honeymoon.

My vagina – my vulva, my clit, everything – was so sensitive, I could barely let my husband touch it.

My husband. The thought simultaneously thrilled me and nearly killed me, because although my whole heart was in the relationship, my body refused to catch up.

It always had, but for some reason I thought – well, hoped against stupid hope – that things would magically fix themselves once I was married. I convinced myself they would, pretty much because I didn’t see any other option. I’d been to so many gynecologists, and none of them had done jack shit to help. One told me to “have a baby” because “sometimes that fixes it.” I was twenty years old at the time and had already mentioned that I never wanted to have kids.

Other than that, the doctor offered to prescribe a new birth control brand.

The guilt was overwhelming. We’d had sex a handful of times in the years leading up to our wedding, and every time it was painful (for me) to the point of being distressing (for both of us). We were pros at everything-but, but it wasn’t enough anymore. All I wanted was to do the thing that everyone else seemed to do so effortlessly, and to share it with the person I loved more than anything.

It wasn’t only the sex, either. The pain – the seemingly random but ever-present fucking pain – was getting worse.

I needed to take charge of the situation, but I had no idea what direction to go in, and I was so deeply, deeply embarrassed. I couldn’t talk about it. And the shame and ache of it all felt like it was crushing me.

Somehow, my husband pulled me together and we still had a good honeymoon. Despite everything, I knew I’d done at least one thing right.

I had him.

Age: 27

“That has to hurt.”

I was lying on a medical table with a pelvic pain specialist’s hand halfway up my hoo-ha, and she was pressing down on the rigid muscles that made up my tightly-wound pelvic floor.

I didn’t flinch. It hurt, but I’d felt worse.

I’d contacted the specialist after stumbling on a study about “birth-control-pill-provoked vulvodynia,” in the course of one of my many attempts to research my problems away. The symptoms all sounded like mine: chronic pain and extreme sensitivity in and around my vagina. A terrible burning sensation whenever I tried to have sex or insert anything – and sometimes when I was doing nothing at all.

And yet, I still wasn’t sure – because how had no doctor ever mentioned it before?

The specialist confirmed my suspicions, however, and told me something that no gynecologist had ever told me in the decade-plus they’d been blithely prescribing me birth control pills: that the pill is not meant for long-term use lasting more than about ten continuous years, and that starting the pill at a young age has been shown to increase one’s odds of developing vulvodynia later.

Most gynecologists seem to know nothing about vulvodynia being a potential side of effect of birth control. Others scoff at the possibility when I bring it up. And yet, I can personally attest to this happening to me and several other women I know – and the number keeps growing, the more I talk about it.

Funny, isn’t it?

My specialist prescribed a compounded hormone cream, to be applied locally, that would help “beef up” the hormones in the tissues of my vagina — which had been hormone-deprived basically since I started getting my period, due to the low-dose BCPs I was on — and help heal the area. I would also need pelvic floor physical therapy to deal with the vaginismus that was a by-product of my vulvodynia. My pelvic floor muscles had learned to associate penetration with pain, and so they were “guarding” me against that pain by closing up shop entirely.

I had to stop taking hormonal birth control of any kind in order to heal. My heavy, too-frequent periods returned not long after, because it turns out birth control pills only mask period problems, they do nothing to actually “regulate” or solve them. But the hormone cream worked, over time. Along with the PT, it took away the pain and eventually I didn’t need it anymore.

Finally, I got to have sex. Like, good sex.

I cannot even describe what that meant to me.

My body didn’t initially react well to the hormone cream, though, and it left me with one small souvenir: a Bartholin gland cyst that would stick around for nearly the next decade of my life.

Age: 27-35

The Bartholin glands are a pair of small glands on either side of the entrance to a woman’s vagina, at the 4 o’clock and 8 o’clock positions, and they secrete lubrication when she’s aroused, such as during sex or masturbation. For some reason, these little glands have an annoying habit, in some women, of getting clogged.

And once that little fucker’s clogged? It’s almost impossible to get rid of.

The clog creates a cyst at the side of the vagina’s entrance, which is usually small at first, but can grow much larger over time (think golf ball), especially if it gets infected. They also have a nasty habit of recurring. As you might imagine, this can cause a lot of discomfort and stress.

My specialist told me not to worry about it, to take a sitz bath every day, and to leave it alone. My pelvic floor PT told me that, with time and increased blood flow to the area, it would probably go away eventually.

At home, I googled Bartholin cysts, and like many things on Google, the results were alarming. Women recounted stories of getting their infected cysts sliced open and drained in the ER, describing it as the worst pain of their lives – worse than kidney stones, worse than childbirth according to some.

(I don’t mention childbirth to pit one woman’s pain against another – I mention it because it’s one of the very few experiences that society at large recognizes and validates as severely painful for women.)

I did sitz baths every day, multiple times per day, for at least a year. And while I sat soaking my pussy, yet a-fucking-gain, I worried about the worst case scenario, my new biggest fear. A shiny new anxiety to place atop the teetering tower of all my already-acquired anxieties.

The cyst never went away. For eight years, it did not go away.

Sometimes it got a little smaller — and sometimes it got a little bigger — but it was always there. It only seemed to move higher up the side of my vagina, until eventually, it was a problem. It hurt when I walked. It got irritated and often caused yeast infections, which had never been an issue for me before. Ironically, it didn’t really cause a problem during sex, but even so, after all these years it was wearing on me.

* * *

There aren’t a lot of options for treating a Bartholin cyst.

A doctor can drain it, then insert something called a word catheter; a little balloon that sits inside the drained cyst pocket with a tube sticking out, with the aim of allowing the area to continue draining for about four weeks, at which point the catheter is removed. Or you can go with marsupialization, in which the doctor makes a cut along the gland, pulls the skin back on either side and sews it open, creating a new, permanent hole through which the gland can drain.

Most women are cleared to go back to work only two or three days after having either of these procedures done, and yet many women describe the experience of having a word catheter as excruciating and unmanageable. Some women report returning to their doctors after only a few days to have their catheters removed because they can’t even sit, nor stand, without extreme pain. For many others, the catheter falls out too soon and the hole closes up, making the likelihood of recurrence rise precipitously.

And yet, doctors continue to describe a word catheter — essentially a little straw hanging out of a wound in one’s vagina for four weeks — as a “mild annoyance” that women can easily work through, despite numerous stories that prove that is not always the case.

The recovery period for marsupialization is generally easier than with a word catheter, but is still riddled with problems: a Google search brings up a depressing number of unsuccessful marsupialization stories, some in which the doctors simply failed to cut large enough incisions, causing the holes to close up after only a few days or weeks, rather than remaining perpetually open as they’re meant to. (Once again, if the hole closes, the recurrence rate rises.) Even when the hole does function as it should, it can become a cause of chronic pain. Some women also express dissatisfaction and distress with the “giant,” “ugly” hole they are left with, permanently.

Many medical websites tout high success rates for both the word catheter and marsupialization procedures, often citing small studies from fifteen years ago or more. Granted, there’s not much to go on (there appear to be few studies checking in on current statistics regarding the efficacy of these dated procedures), but do a quick search on Reddit and you will find hundreds of women’s stories recounting their recurring issues with Bartholin cysts, and the relative lack of viable solutions.

The subreddit “r/BartholinCyst” gets new posts from users every day, many of whom are dealing with recurring cysts. Members give one another advice, both medical and homeopathic, for living with Bartholin cysts, particularly in situations where doctors have been no help. A large portion of the posts are devoted to trading tips on how to get an infected cyst to burst at home – a frightening prospect that, for many, is still preferable to going to the ER, where only local anesthetic is used in a meager attempt to numb the area before it’s sliced open, to do a procedure that, for many, does not work even upon multiple, agonizing attempts.

(Despite the fact that having a Bartholin cyst lanced and drained is, according to my own doctor, “one of the more painful problems a woman may deal with in her life,” general anesthesia is rarely, if ever, offered, even when the gland is infected and doctors know that local anesthesia will do little to nothing to dull the pain for the woman experiencing it.)

A sampling of subject lines from some recent Reddit posts on the topic:

• I just want to vent about my recurring Bartholin’s Abscesses for a moment
• Dealing with a recurring Bartholin’s gland cyst, asking for advice and experience
• Recurring BC not sure what to do
• i can’t deal with this anymore. i’m losing my mind!!! (bartholins cyst)
• Treating a Bartholin cyst that’s been around for years?
• Bartholin cyst/abscess has ruined my sex life
• Recurrent Bartholin/vulvar cyst, failed treatment and not sure what to do next
• Bartholin cyst hell
• Bartholin Cyst Recurring after Two Procedures

For centuries, women have traded wisdom, intimate knowledge that we know in our bones to be true, despite the (often willful) ignorance of doctors. Women (and I include queer folks under that umbrella here, especially when the topic is medical inequity) have always had whisper networks. Reddit is just the current mode of distribution.

These stories may be anecdotal, but they are many, and they are real. And like so many other experiences recounted by women, they go largely unacknowledged.

* * *

There has been one promising development in the treatment of Bartholin cysts: CO2 laser ablation.

In this procedure, a surgeon uses a CO2 laser to make a small incision at the site of the cyst, and then to vaporize the cyst itself without affecting the gland (setting the procedure apart from the option of removing the gland completely, which comes with a greater chance of adverse side effects). The doctor then injects platelet-rich plasma (a solution made from the patient’s own blood that helps the proliferation of reparative cells and aids in the healing process) into the wound before stitching it closed with dissolvable stitches.

It’s a groundbreaking development for the treatment of Bartholin cysts, particularly for recurring cases where other treatments have already failed. Dr. Ghozland, a doctor who performs the procedure in Los Angeles, has done the procedure over 450 times without adverse side effects and at a 95% success rate.

CO2 laser ablation is also markedly less painful and significantly more humane than traditional methods. Laser ablation can be done in an outpatient setting with minimal discomfort – and in about seven minutes.

The only drawback? Money, honey.

CO2 laser treatment costs thousands of dollars, making it prohibitively expensive for many women. It’s only performed by a handful of doctors throughout the United States, which means undergoing the procedure and attending follow-up appointments could also involve travel costs. And like so many medical treatments needed exclusively by women, it’s not covered by medical insurance.

With the CO2 laser’s impressive success rates and minimal invasiveness, though, it is frankly mind-boggling that women are still subjected to the brutally painful lancing and drainage of badly infected cysts, without the option of general anesthesia, to only middling chances of success. And often, they are subjected to such treatment over and over again. Not only does it take an enormous mental and physical toll on the patient when these cysts continue to recur and have to be lanced over and over again (and healed over and over again), but studies have shown that laser treatment may actually be more cost effective than other treatments, precisely because it gets the job done the first time with relatively no side effects.

And yet, most gynecologists seem to have no idea that any strides have been made in this area, despite CO2 laser treatments showing promise over 15 years ago, and despite Bartholin cysts being such a persistent and distressing problem for so many women.

I spoke to multiple gynos to hear their opinions on CO2 laser treatments for BCs, and not a single one had any clue what I was talking about.

* * *

I was going to do the CO2 laser ablation, I decided.

I’d figure out a way to pay for it – what was the difference, I told myself. I’d already paid incalculable amounts for pelvic pain specialists and pelvic floor PT, none of which was covered by insurance. This was the toll for having a vagina, apparently.

The doctor was knowledgeable and professional. He explained the procedure and reiterated its success rates, but spoke honestly about all the possible outcomes. He put me at ease, at least as much as one can be at ease with their legs in the stirrups.

For years, it felt like I had a ticking time bomb sitting inside me, waiting to explode. Although the cyst had never become infected in all the time I’d had it, I knew it always could, and that the longer I had it, the more likely the possibility became. It terrified me. I wanted to get it out.

Nothing turned out the way I hoped it would, though.

 

Part II

“You don’t understand, I can’t give another urine sample.”

I was a subhuman lump of molten pain, on the verge of tears, but so exhausted I could barely repeat the words. Again.

No one was listening to me.

My cyst had gotten infected four days earlier, exactly one week before my scheduled CO2 laser ablation.

Have I ever felt like the universe was laughing at me more? No, I have not.

The pain had gotten steadily worse each day, to the point where I could barely move and needed my husband to constantly bring me heating pads that were never quite hot enough (weeks later, I would still have burns on the insides of my thighs), to the point where I couldn’t pee without yelping in pain, because I had to take the heating pad off for thirty seconds. I’d tried to take hot baths to encourage the cyst to burst on its own, but I couldn’t stand being in the tub for more than a minute before I was crying hysterically.

Still, I’d held onto hope through the weekend that the antibiotics my doctor had prescribed would suddenly kick in and I might still make it to my scheduled procedure. The good one, with the high success rate, not one of the other, terrifying ones that women recalled as the worst pain of their lives.

Things only got worse, though, and two days before my scheduled procedure, I ended up in urgent care. Pain had become my entire world in the last 96 hours, and all I wanted was for it to stop.

“I just gave a urine sample five minutes ago. I’m in extreme pain right now. I can’t do it again.” I started to cry, looking at the nurse’s face for any semblance of compassion.

“That was the lab. This is gyno. We need our own sample, it’s procedure.”

It was the same thing she’d said the last five times.

“I’m not doing it.” I turned to my husband, feeling frantic. “I can’t do it.”

I’d been patient and ridiculously polite for hours, with nothing but a stupid stuffed manatee heating pad clutched against my crotch as a painkiller. They were kind enough to put my heating pad in the microwave for me when I asked, but my repeated requests for any other sort of pain management were ignored entirely.

“Look, I’m just off my lunch break,” the nurse said, as if that explained why my pain was not her problem. “I’ll find the doctor.”

Please, I thought.

* * *

“She didn’t give a urine sample.”

“Oh, that’s fine, we don’t need one,” said the doctor, her tone chipper.

I would’ve rolled my eyes, but I was too scared. The gynecologist had explained what she was about to do, though I already knew from reading about cyst marsupialization online. It was my worst case scenario, basically, and it was about to happen.

Then she left the room to answer a phone call. You know, just to stretch out the tension a little longer.

“Sorry about that,” the doctor said, returning. As she did so, she laughed and grabbed my knees with her gloved hands, shaking them back and forth.

Her laugh was so jarring, and her inexplicable choice to shake my legs — legs which, must I remind you, were framing an extremely infected and tender vagina at that very moment — was so completely divorced from the experience I was having, I felt almost insane.

She was not only ignoring my pain, she was fucking laughing. It was like being in some nightmare that only grew more surreal by the moment.

I stared up at my husband, the one trustworthy face in the room, and clutched his hand harder in mine. Then the doctor injected the local anesthetic.

It was like being stabbed slowly, over and over again. In the vagina. With one of those long, metal fondue sticks. And it’s on fire.

She did it three times.

I wish I could say I passed out from the pain, but I didn’t. I remember every moment.

I remember screaming the word fuck, and then apologizing for screaming the word fuck.

I remember realizing it wasn’t over yet.

I remember trying to leave my body, to get away from what was, without a doubt, the worst pain I’d ever experienced in my life, even after 96 hours of agony.

I remember I couldn’t.

I remember making sounds I’d never, ever made before.

I remember the doctor saying, “You need to stay still or I won’t be able to continue.”

And so I forced myself to stay still, even as my body tried to jump off the table, because I knew I had to get through it. I stayed still while she lanced the skin open – something I wasn’t supposed to be able to feel, but which I absolutely felt. I stayed still while she pinched and squeezed the wound, pinched and squeezed, again and again and again, making sure to get everything out, a process for which I won’t even bother trying to describe the pain I felt.

I stayed still because there was no other option, but the entire time I felt less than human, like an animal stuck in a trap.

The only thought filling my entire brain was, “This is the worst thing that has ever happened to me.”

* * *

The recovery from this entire process has been, to put it lightly, less than simple.

The urgent care doctor sent me home with a prescription for antibiotics and exactly three hydrocodone pills, which she only gave me after I begged her for something stronger than ibuprofen to get me through the next day or two.

“You should be fine, just have a follow-up appointment in two weeks, and don’t have sex for three to four weeks.”

It’s been over seven weeks now, and I am nowhere near back to normal, let alone having sex.

In the days and weeks following the procedure, I routinely had panic attacks. Even thinking about my time on that urgent care table gave me vivid flashbacks of the pain, so vivid I could barely breathe. I was terrified by my newfound understanding of my body’s capacity to feel pain, and terrified of a medical system that had put me in the position to feel that pain at all.

I felt traumatized. And I felt stupid for feeling traumatized, because every doctor I interacted with was downplaying, or outright rejecting, the severity of what I’d been through.

In the days after the procedure, I felt like I would never be okay again, mentally or physically. I was told it would take less than two weeks for my stitches to dissolve, and that they wouldn’t hurt. In reality, it was six weeks before they disappeared, and they hurt me every day (and far worse when I got my period).

I was told I would be “fine” to have sex again in three to four weeks. Almost eight weeks out, and I’m still extremely tender where my stitches were, making sex impossible. Assuming that heals eventually, it’s still very likely I’ll need pelvic floor PT again before I can expect to get back to any sort of normal. It’s a roll of the dice whether my insurance will cover it this time or not.

I feel alone, because so few people understand. It’s not just this injury, or this one thing that happened – it’s my whole life. Specifically, my sex life, which has never come easy and has always felt scarily temporary to me. It’s the fact that I finally felt safe in my body, safe to feel pleasure in it, and once again, that’s been taken from me. And I don’t know for how long, because there seems to be no accurate measuring stick for this kind of recovery.

I’m still terrified that, as happens with so many other women, the cyst is going to come back, and I’ll be at square one with this entire healing process, again. And then, maybe again.

At my two-week follow-up appointment, I found out that the marsupialization hole the urgent care doctor had made was too small and had already closed up, greatly increasing the odds of recurrence.

* * *

Women’s pain is rarely validated for what it is, by doctors or by society in general.

Take IUD insertion, for example. For years, women have spoken out about the severe pain that many women experience during an IUD insertion, despite doctors insisting on continuing to describe it as “lots and lots of pressure” or “severe discomfort.”

You know what “lots and lots of pressure” really is? Pain.

You know what “severe discomfort” really is? Pain.

And yet, it took a TikTok trend and years of women describing, then filming, their IUD insertions in order to get doctors to notice or listen.

Today, the Washington Post applauds women for speaking out and getting the issue some much-needed attention. Doctors are beginning to take notice, and some are even starting to offer general anesthesia as an option for the procedure. Less than two years ago, though, journalists were interviewing gynecologists about the “dangers” of women discussing their pain on TikTok, because the videos were too “negative” and showed a “mistrust in medical professionals.”

They’re right about one thing: many of us don’t trust doctors, and I think by now it should glaringly clear why.

How bad does our pain have to be to be noticed? To be acknowledged? To be made real.

When I went to urgent care, every single one of my requests for pain management that day was flat-out talked-over and ignored. The local anesthetic had little to no effect, and was the most painful part of the entire ordeal anyway. If I had been given the option of general anesthesia, I would have paid any amount of money to get it.

But I was given zero options, and they knew there was nothing I could do about it.

Apparently, women have to literally film themselves on the table in excruciating pain — and then it has to become a social media trend for years — before the medical establishment will give their experiences any credence.

* * *

I’m angry.

I’m angry that doctors put me on a hormone-altering drug for over a decade of my life with little to no proper oversight regarding the things it was doing to my developing body.

I’m angry that I had to pay thousands of dollars, out of pocket, to cover the many doctors and specialists — which I had to seek out entirely on my own — to fix these chronic, life-altering problems. I’m angry that my health insurance didn’t even know what pelvic floor physical therapy was when I needed it, let alone cover any of the costs.

I’m angry at a healthcare system that ensures I will never have a steady doctor who actually knows me, my body, and my history, but instead merely provides a string of new doctors, constantly falling in and out of my “network,” with no consistency of care whatsoever.

I’m angry that nearly every problem I have was caused by the carelessness or lack of awareness of a doctor who was supposed to be helping me. 

I’m angry that not only is women’s pain not taken seriously, it is willfully ignored and disbelieved, year after year, decade after decade. Despite us screaming our stories out loud for everyone else to gawk at and consume in a desperate bid to be acknowledged.

But most of all, I’m angry that this recitation of all my pain — an entire lifetime of it — is not enough, on its own, to change anything.

* * *

This is the point where I would usually try to muster up some sort of inspiring call-to-action. Something to reiterate that, despite everything, hope is not lost.

You know what, though? I don’t fucking have it in me today.

I don’t know what the solution is for a system that is so broken, in so many ways. Maybe a man will think of something, and then someone will actually listen.

But right now? I have to figure out how to live with the way things are.

We all do.

 

 

 

Header image via Unsplash.