Ugh, Menstrual Hygiene

Like a lot of young girls, I started my journey into womanhood on the wings of a maxi pad. It was thick between my legs, I felt like I was sitting in a river of my own body fluids, and each month, for the longest time, I imagined everyone around me knew I was bleeding.

How could they not? *I* was beyond acutely aware of this fact.

I don’t remember making the switch to tampons, but here I am, decades later, unable to leave the house without a pouch full of a variety of tampon sizes, just in case. These days, I hardly think of the money that comes pouring out of my bank account and into the pockets of Big Tampon (that is, unless I’m raging about the tampon tax).

According to this Huffington Post article from 2015, in her lifetime, the average woman spends $1,773 on tampons, $443 on pantyliners, and $2,280 on new underwear.

Seriously, I have to imagine these numbers are somewhere around tripled for women with endometriosis, fibroids, and all those other fun conditions. I mean I pretty much spent a full year bleeding when I was at my sickest.

And money aside, none of it is particularly comfortable. After what is sometimes seven fun-filled days of wearing tampons, let’s just say, my vagina gets as irritable as I am the week before my period starts. Having been confirmed once or twice in the past by a well-timed annual gyno exam that falls right after my period, I am pretty sure the persistent tampon use leaves me with a low-key yeast infection to chase shark week.

First, I will acknowledge that I am lucky and grateful to have access to things like tampons and pads. But now I am going to also acknowledge that I am pretty over tampons. Over two decades of using them monthly (sometimes more than monthly) has been quite enough for my taste.

So earlier this year when the topic of menstrual cups came up during a Baltimore Flow meeting, I started asking questions. And then I heard more menstrual cup talk on one of my favorite podcasts. The host was talking about the environmental benefits of using them (they are reusable unlike tampons) but also how it felt so much more comfortable to her than tampons.

Environmentally friendly? Check. Cost savings? Check. Happier vagina? I am SOLD.

As someone who writes frequently on the internet and Instagram about my period, I did not have to look far or do much research to decide who I wanted to buy my period cup from, and I also treated myself to my first pair of period panties in that same order. I opted for Sustain Natural (#notanad) because:

1. Their products (which also include tampons, condoms, lube, and wipes) are all natural and organic.

2. I haven’t heard any crazy stories about their CEO sexually harassing employees like another period panty brand you may have heard of.

3. They are woman-owned.

4. They donate 10 percent of their profits to women in need of health services.

5. They create phenomenal pro-choice, feminist, sex-positive, body-positive content that I adore.

So that’s my little note/soapbox on how I chose Sustain. But if you’re like me, and you are new to the period cup game, you’re here to find out about how the cup and panties worked out.

I’ll start with the underwear since that’s a little less…complex. Sustain carries one cut (your standard bikini cut). The site says they can absorb up to one tampon’s worth of blood (of course, it doesn’t say if that is a super plus tampon or a regular, and my endo sisters know there is QUITE a difference). They fit and feel like regular underwear (as long as your regular underwear isn’t super skimpy). The crotch is thicker than regular underwear, but it doesn’t feel bulky like a pad or a diaper. Because they are not seamless, if you’re wearing pants or a skirt that shows panty lines, these would probably show (or at least on me they would; I have considerable junk in the trunk).

But if panty lines are not important to you (and they aren’t particularly important to me, especially when I have my period), then these are fantastic. My first few times using the cup, I wore these as backup since I wasn’t confident in my cup insertion technique. They would also be a good backup if you’re having one of those periods when you’re bleeding through a tampon faster than anyone should have to put up with. My other favorite way to use them is at night so I don’t have to deal with sleeping with a tampon in or a pad on. Love my period underwear.

The cup? Ah…that’s more of a mixed bag. Luckily I was warned by my Flow friends who use the cup that there is a learning curve when putting it in. I am glad they told me this because I STRUGGLED. To insert a period cup, you bend or fold it into a U-shape and insert it into your vagina. I wasn’t sure (and am still not sure) how far up it is supposed to go, I’ll be honest. This is most likely because I am weirdly spatially challenged and have an extremely hard time visualizing where the hell my cervix is despite a career in editing medical textbooks. Anatomical line drawings are one thing. Your own cervix is another. Like HOW FAR IS MY CERVIX FROM MY VAGINAL ENTRANCE? I DON’T KNOW.

Anyway, once you stick the cup up there, it unfolds on its own and suctions onto your cervix where it promptly starts to catch your period blood. Another piece of real talk? Despite my best efforts and my willingness to write about this shit, I am NOT as body-positive as Sustain. Endometriosis is chronically traumatic and I hate my period. I don’t care if it is “natural” and a “healthy part of life.” Aside from causing me literal years of pain, my period is fucking gross, dudes. It has gotten significantly better since my second surgery, but heavy flow, clots, ugh, you name it. I have pulled out some really appalling-looking tampons, so TBH, I wasn’t at all sure that I wanted to see what my period looked like poured into a tiny cup.

So I was surprised that it wasn’t nearly as gross as a used tampon, which can sometimes look like you accidentally pulled out a small organ instead of a tampon. That said, I did not use and have not used my period cup on my heaviest days. It’s not that I don’t think it can get the job done (actually, Sustain offers two sizes if I wanted a larger one for heavier days). It’s actually that, several months later, I am still struggling with inserting it, and because I’m having trouble, doing so requires a level of ::ahem:: intimacy with my own body that I frankly cannot deal with on Days 2, 3, and sometimes 4.

If I was more comfortable with my period, maybe it wouldn’t bother me as much, but I also find it physically difficult. Sometimes my period makes me feel like I have been punched in the vulva. Really that is the only way I can describe it (although thanks to pelvic PT, I have this sensation less frequently). And when I feel that way, the last thing I want to do is shove a little cup up there. And yes, tampons are different because I use ones with applicators for this very reason.

Guys, I WANT to make the cup work. But in the interest of transparency, I’ll admit I haven’t used it during my last two periods. The last time I tried, I somehow ended up inserting it sideways and getting it out was a BITCH. And even when you insert it properly and it suctions to your cervix the way it is supposed to, getting it to UNsuction freaks me out a tiny bit. The pulling sensation doesn’t hurt exactly, but it is…not something I’m used to. It kind of feels like it could take my whole uterus with it (not sure that would be the worst thing though).

Since I haven’t gotten comfortable with it, I only want to use it on my lighter days and when I know I am going to be at home for the day. The last thing I want to do is find myself rooting around in my vagina trying to break the seal of something stuck to my cervix in the stall of the shared bathrooms in my office. Sustain does offer a full refund if the cup is not your cup of tea (see what I did there?), but I REALLY WANT TO MAKE THIS WORK.

Who are my period cup aficionados out there? Teach me your ways! Have your tried the period cup or period panties? What has your experience been like? Are you tired of tampons too? Should we all just free-bleed at work? Tell me your thoughts in the comments or over on Instagram — I can’t wait to hear from you!

xo,
S

Staci vs. Endo: Round 2

One of the biggest problems with endometriosis is the severe lack of doctors who can properly treat it. There are only about 200 endometriosis specialists in the WORLD, even though one in 10 women has it.

This is why most women who have endometriosis end up having more than one surgery to treat it and why I experienced no relief after my first surgery. My doctor, perfectly capable of prescribing birth control pills and delivering babies, simply wasn't trained to properly treat endometriosis. Like most general gynecologists, she performed an ablation surgery, burning away the rogue tissue.

But what I later learned is that ablation surgery only removes the tissue she could easily see. It's akin to melting the tip of the iceberg but not the majority, which is underneath, attached to and continuously growing over my organs. Additionally, it caused scar tissue and adhesions, worsening my pain. 

Though unrecognized as a different procedure by the American College of Gynecologists and insurance companies alike, excision, not ablation, is an endometriosis patient's best chance at long-term relief. It's not a cure, but a surgeon who is specially trained to cut away, not burn, the endometriosis lesions and adhesions can give a patient a better quality of life, improved fertility, and a chance at not having to have surgery every other year. 

So when my symptoms returned in 2016 and rapidly worsened, I didn't even bother with my general gyno. With the help of my friends at Endo Warriors and Nancy's Nook, I did extensive research and found the closest specialist to me who was approved by both groups was in New York City. So in April of 2017, my mom and I took a day trip up for a consultation.

I had diligently sent this new doctor all my records, and in turn, she had diligently read them all before my visit. But the first thing she did was ask me to describe my experience to her. It shouldn't have been a surprise, but I immediately began crying as I recounted not what was in my records but my lived experience of endometriosis up to that point.

I experienced all the usual emotions I have become accustomed to when talking about endo -- self-pity, frustration, sadness, rage, hopelessness -- but for the first time when talking to a doctor about it, I experienced a flood of relief and validation. She had tissues at the ready and she assured me that by the time women got to her, they were usually at the end of their ropes and crying was normal. She didn't suggest antidepressants (like many doctors before her had at the first sign of tears), and she didn't tell me she was stumped since she couldn't prescribe birth control to me. Rather, without minimizing my experience, she told me that my story sounded like a textbook case of endometriosis -- complete with failed surgeries, stymied doctors, and ever-worsening pain.

She's the one who explained why the ablation surgery didn't work and why Lupron was not the "cure" I had been promised. With a five-minute manual exam, she told me my uterus was being dragged back and to the left by endometriosis tissue and that I was a good candidate for another surgery. She also said my pelvic muscles were extremely tight from years of pain and recommended pelvic floor physical therapy both before surgery and after.

The catch was that my doctor did not participate with any insurance plans. The reality is most specialists do not. They spend years training to be able to operate on any number of organs without knowing what they're going to find when they begin since there is currently no imaging technology that can reliably detect endometriosis. The ACOG issue mentioned previously is a huge problem because this surgery is not at all similar to ablation, and insurance companies should not be allowed to compensate it as such. When they do not compensate the more difficult surgery properly, it gives specialists no incentive to participate with insurance plans.

Me during this period of time. Except without the smile.

But where does this leave endometriosis patients? Either suffering or in medical debt. Luckily, I am in medical debt only to my generous parents. When I found out that the surgeon charges $15,000 for the surgery up front -- two weeks before without taking credit cards and without being willing to work out payment plans -- I called my parents crying and told them I would not be able to have the surgery because I couldn't afford it. This $15,000 did not cover hospital fees, anesthesia, the appendectomy I ended up having while I was under, the numerous appointments before and after, the preop physical, the physical therapy, the MRI and ultrasound, the travel to New York and back, etc. etc.

But the financials of endo and the battle I am STILL doing with UnitedHealthcare is a story for another day.

What followed my consultation was weeks of tests, appointments, trips to New York, extreme stress and anxiety, and tears. In short, I was a fucking wreck. Nowhere close to forgetting my breakup after my first surgery, my current boyfriend, Scott, was constantly reassuring me he wasn't going anywhere and he didn't feel burdened by everything my chronic illness and upcoming surgery suddenly demanded of him. My parents were always on the phone with me, telling me they weren't worried about me paying them back at all -- they just wanted me to be happy and healthy again. My best friend was on Gchat with me every day when I just wanted to quit and not have the surgery, giving me pep talks about persisting through the stress and prep, reminding me surgery was in my future whether it was now or later, and it was better to get it finished now. My friends in NYC made the trips back and forth better, meeting me for meals and saving me hotel expenses.

Finally, the time had arrived. The Friday night before I headed up to New York, Scott and I went shopping for the bowel prep items I was to take the day before the surgery. Nothing says romance like a bottle of laxatives, an enema, and Desitin.

This is how you treat yo'self, last-meal style.

We spent Saturday getting drinks and food with my friends; sometimes I even forgot the reason I was there and could pretend it was one of my usual NYC visits. Sunday was Father's Day, and my parents and brother joined us. We had a Father's Day brunch, visited the 9/11 Memorial, and then I had a Father's Day dinner of lemon-flavored laxatives while I pushed Scott out of the hotel room to go meet up with a friend.

As luck would have it, the laxatives took effect when Scott RETURNED, and I spent the whole night running to the bathroom. My surgery was the first one on the books for that Monday, and the laxatives did not appear to be finished with me by the time we arrived at the hospital. 

I seriously started to wonder if it was possible to shit yourself on the operating table whilst under anesthesia. (I asked my surgeon if this was possible. She patted my shoulder and said everyone worries about this but notably did *not* tell me if it was possible or not.)

Soon it didn't matter.* I was out. 

When I woke up in the postanesthesia unit, my abdomen was incredibly sore. My surgeon had made four incisions this time and had called in a general surgeon to remove my appendix, which she said looked "thickened." (Two for the price of one! Except not literally, they charged for both.)

I didn't have my glasses, and I couldn't see anything, which was just as well, since all I wanted to do was sleep. But at some point, the nurses wanted me to go to the bathroom, so they could measure my fluid output. Two nurses helped me up, and suddenly I felt like I was going to throw up. The pain in my abdomen was so extreme, their voices began to sound far away and my vision tunneled. I don't know what I said to them, but they put me back in bed before I passed out. I had never passed out before.

And when they gave me more meds and took me to the bathroom sometime later, I peed into a measuring cup with a nurse in the room with me. I had never peed with someone else in the bathroom before. The indignities of medical care are boundless.

The rest was a blur. At some point they transferred me to another room where a television was on with news about Donald Trump. Someone brought carrot cake in for the nurses. I was waiting for the surgeon, and at some point I heard the nurses say "How long can this go on for?" in response to the news. At that point I said something belligerent and possibly profane about Trump. The nurse offered me some carrot cake.

My surgeon came in and told me she was pleased with the surgery. My ovaries weren't compromised and the only extra organ she had to remove was my appendix. She was confident she had gotten ALL of the endometriosis tissue and was sending it all to be biopsied. 

I was adamant about going home that same day. I didn't want to spend my first night postop in a hotel room, and since the surgeon cleared it, Scott and my mom drove us back. Scott pulled the car around with my favorite tea, pastries, soup, flowers, and cough drops since he anticipated my throat would be sore from the breathing tube. I've never been afraid he would pull a Nicky since.

My recovery was significantly worse than it was following the ablation surgery. I woke up several nights in a row with stabbing pains in my vagina that my doctor said were likely pelvic floor spasms. I couldn't manage a five-minute walk around the building until about a week following surgery. And I couldn't work out until five weeks later (despite having tried to negotiate pre-surgery to get the doctor to tell me I could work out two weeks after).

Now it's been exactly a year. My quality of life has significantly improved. I rarely have pain in between periods, and when I do, it is manageable. I've gone through several periods without needing prescription painkillers, though I am not (yet) rid of them for good. I've progressed in physical therapy (which I will write more about at length soon), and I've returned to my previous levels of physical fitness.

But ultimately, endo IS still a chronic illness. While excision surgery has helped me immensely, it is not a cure, and no one ever promised it would be. I think about my endo every day. I am learning more about managing my symptoms with dietary and lifestyle changes and researching everything I can about balancing my hormones. I still have constant anxiety about needing surgery again; every painful period comes with it insomnia and depression, not just from the pain but from the paralyzing fear of the prospect of another surgery, another $20,000, an ugly new normal, a lifetime without relief. I am STILL battling with the insurance company to get them to reimburse me *some* portion of that $15K since ultimately, their network has failed me by having no specialists in-network (that's a real treat, which I promise to write about at length sometime soon).

But now that my incisions are healed and I am healing internally, I'm newly motivated to work toward not just improving my symptoms, but fixing the system for other women. No one should feel like an isolated freak that doctors don't know how to fix, especially if she has a disease that is actually quite common. No one should have to choose between debt and debilitating illness. I am a white, middle-to-upper class woman -- it's not lost on me that if it was *this* difficult for me to receive care, it is a thousand times more difficult for someone who is more marginalized. Frankly, no one should have to cross state lines to get adequate care. Women should never be dismissed and told their pain is normal. 

So I'm learning as much as I can, never shutting up about my period and endo, and locally have created the Baltimore Flow for women with endo and related illnesses to find credible information, resources, companionship, and advocacy. And of course, I'm running the New York Marathon and raising money for the Endometriosis Foundation (please donate!).

Sure, endo is a chronic illness, but it's also now my life's purpose, for better or worse. Anxiety about worsening symptoms, watching the precarious balance of my hormones, and dealing with monthly pain is my new normal, at least for now. But I've learned about myself -- my body, my resilience, my support network. And I have so much more to do and tell you about.

So thanks for coming along for the ride.

xo,
S

*No one ever told me if I shit myself on the operating table.

Endometriosis 101: A Crash Course

It's possible that everyone visiting this blog at this point already knows me and therefore knows allllll about endometriosis since, frankly, I feel like I never shut up about it. But on the off-chance that some of you are new friends (hi!), and since March is endometriosis awareness month, I figured it would be best to get this blog going with a crash course in endo. If you already know everything, then...I guess move along. But since most doctors don't even understand it...

I saw this meme last night on the @endostrong Instagram account and have not stopped laughing.

Here are the basics (in not-too-clinical terms):

I am 99 percent sure this Bitmoji was created by someone who has endo.

• In normally functioning reproductive systems, when a woman has her period every month, she is shedding her uterine lining (the endometrium). When a woman has endometriosis, tissue similar to the endometrium grows outside of her uterus.
• Outside could mean anywhere -- around the bowel, ovaries, uterus, and around the peritoneum, the thin membrane that I suppose we can basically just call an organ sack. But the tissue doesn't just have to remain in the abdomen; rogue tissue has been found in some patients as far away as the lungs or the brain (wtf).
• Endometriosis is chronic and cumulative. This means there is no cure, and with every menstrual cycle it worsens. The tissue causes scarring, and the organs around it may become stuck to each other and the peritoneum.
• Some women may experience nothing at all. But for others, the pain is excruciating. It starts with painful periods, progresses to pain in between periods, and eventually some women have only a few pain-free days a month.
• Other symptoms include abnormally long and heavy periods, painful sex, crazy bloating (endo belly), bowel and urinary problems, neuropathy (nerve pain in the legs), infertility, and fatigue (it's exhausting being in pain all the time). 
• No one knows the cause, and it is regularly misdiagnosed for YEARS despite the fact that it is estimated that 176 million women have it worldwide (that's one in 10).
• There is evidence that the best treatment option for women with endo is laparoscopic excision, in which a trained specialist cuts the evil tissue away. Yet the majority of women are treated with hormonal contraceptives or by general gynecologists who perform ablation, in which they burn the tissue away. The end result is women with endometriosis wind up having multiple surgeries over the courses of their lives with the hope of only having some relief for at least a few months at a time.

OK, so why am I writing about it? Wouldn't I rather be writing about other things lifestyle bloggers are writing about? Fun things, like food, accessories, workouts? Well yes, and I'm going to. But endo is the linchpin of Cramped Style, and here's why.

For starters, IDGAF about people who are squeamish over periods anymore. In fact, I'm on a mission to get everyone to GET OVER IT and start talking about these things. Endometriosis is extremely under-researched, under-diagnosed, and under-treated in this country and around the world, and I am over it. The first step in finding a cure is to get people to listen, to raise awareness, and to dispel the myths around it.

Secondly, I selfishly need a silver lining, and it can't just be "well it could be worse." Because sure, my endo COULD be worse. I could have something worse than endo. It could ALWAYS BE WORSE. But since people seem to like my writing, I may as well put my voice and my lemon body to use and relentlessly talk about what it's like living with this chronic, debilitating disease.

So please feel free to share my stories you read here. Follow me on Instagram @crampedstyleblog. Come tell me YOUR stories. I want to hear them because I remember how isolating it was when the doctors seemed mystified why my first surgery didn't help. Tell everyone you know, male and female. Nothing about being a woman should be stigmatized anymore, least of all, abnormal menstrual cycles.

LET'S MAKE PERIODS GREAT AGAIN.

Big thanks to my homegirl Sarah for this amazing #MPGA bag that she sent me after my second surgery. Photo by Ryan Detter.

If you haven't read my Medium series from 2016 on my life with endo, please start here, with "My Hormones Hate Me." But ever the editor, I have to tell you there are a few errors in these essays I'd like to clear up. I've learned a lot since 2016, including that many of the things my doctors told me then were false. And I don't want to be someone who continues to spread endo myths, however small or nuanced they may seem. So corrections by essay:

• In My Hormones Hate Me, I said: "For those who don’t know, endometriosis is a condition in which tissue that grows inside of the uterus begins to grow outside of it." As noted above, this is not exactly true; the tissue that grows outside of the uterus is SIMILAR to that which grows inside of it. It is not the same.
• Not endo-related, but in He's Just Not That Into Your Endometriosis, I said: "I still don’t think Nicky is the bad guy he said he was, but suddenly I stopped seeing him as some poor, misunderstood guy plagued by an easily curable case of self-doubt and clearly saw him as a scared, immature little boy who had buckled under the weight of self-induced pressure to be “perfect” when all I needed was for him to simply be there." It turns out I was wrong x 2. It wasn't self-doubt and immaturity. I found out after publishing this essay that he had actually cheated on me the week I had surgery, so maybe he IS the bad guy he said he was.
• In He's Just Not That Into Your Endometriosis, I said: "Hell, Donald Trump might come along and make a serious run at becoming leader of the free world." WELL SHIT.
• In Are You There, Doctors?, I said: "But I was convinced something was wrong with my hormones; she had fixed everything structurally during the surgery, so it must be hormonal." My first surgery was an ablation surgery, in which the doctor burns away the tissue. This leaves the tissue stuck to your organs behind and causes additional scarring. So the doctor did not, in fact, fix ANYTHING structurally.
• In Are You There, Doctors?, I said, "He planned to give me two three-month injections of a pituitary gland hormone that would put me in menopause temporarily without putting me at risk for another clot. This, he said, would burn away the microscopic tissue and give my distraught ovaries a well-deserved break." While this drug, Lupron, does give you a break in the form of menopause, it DOES NOT burn away endometriosis tissue. This is patently a lie, and I have a LOT to say about that, so I will address it in more detail in a later post.

But for now, I'm off to continue plotting ways to make periods great again. 

xo,
S