Today’s guest post is written by a close friend of mine who has asked to remain anonymous. If you know me personally, it’s likely you know who the writer is. She asks that her name not be associated with the article, not because she wants the information to be kept secret but because controlling her online presence is important to her personally and to her career. You’re welcome to contact her privately to discuss the contents of her story.
CN: discussion of genitals and sex, women being dismissed by doctors, dieting and weight, mentions of pain
When I became sexually active at the age of twenty, I expected it might add some complications to my life. I expected this new layer in my romantic relationship might come with new challenges, feelings, and thoughts, which I hoped would bring me closer to my partner. I was excited for the physical pleasure, and I felt ready for the emotional growth and connection. I understood the risks because my liberal small town actually had pretty good sex education, and I knew about various forms of protection.
What my good schools, open parents, and more experienced friends had neglected to prepare me for was the way that doctors would treat me. Thus far in my life, doctors had always been responsive and helpful. I discovered that this trend changed when my concerns involved my vagina and sexuality.
The first form of birth control I tried was a pill. I was warned about the possibility of mood swings and nausea but was also told those side effects would probably pass in a few months. Sure enough, I spent about two and a half months experiencing all the symptoms of early pregnancy, which went away as promised. I was now having pain-free periods for the first time in my life, and sex was great, so I labeled it all “worth it” and moved on. But the positive experience didn’t last.
Soon, my vagina became extremely irritated. I thought I had a yeast infection, but there were no other symptoms. My doctor suggested I treat it as a yeast infection anyway, but the itchiness remained. I was scared it might be an STI even though I had been careful but all testing on my partner and me came back negative.
After a few weeks, the itchiness seemed to go away and I was thrilled, but it came back immediately when I had sex of any kind. I developed a strange sort of power-through mentality because my relationship was long-distance and we only had a few weeks of holiday to enjoy sexy time. I didn’t want to miss out. Looking back at it, I’m not sure how I decided that painful sex was less of missing out than no sex, but somehow I did.
At least my tough mentality didn’t stop me from going to my doctor to tell her about the problem. She said it was probably stress-related, it would be highly unusual for this to be linked to birth control, and suggested Epsom salt baths. They did make a difference. Epsom salt baths are amazing, and over the two years that I was on that pill, my body adjusted and the itching became a very rare problem. I didn’t think to question my doctor’s judgment and link the issue to the birth control.
About six months into taking the pill, I noticed I was gaining weight. Since I was twenty, my doctor said there was a good chance it was just my body growing up, and I was at a healthy weight, so there was no reason to worry. I still felt comfortable with my weight, so the unexpected weight gain didn’t bother me.
There was a brief interlude in the saga of pill one, in which my insurance decided it would only cover generic brands of birth control. In the five months that I was forced to try pill two, I had nine periods, and none of them followed my cycle properly. The doctor made me continue taking pill two for five months to see if the problem persisted because the insurance wouldn’t accept anything less before consenting to pay for the name brand pill. During that five months, I was constantly tired, often in pain, and very anxious. Thankfully, the doctor’s office convinced the insurance to start paying for the pill that worked for me, and I went back on it. That is, until it was discontinued.
Once pill one was no longer available, I was offered pill three, which was chewable, and for some reason, my insurance didn’t cover chewable birth control pills.
My bill suddenly went from $0 to $75 for a two-month supply. In response to the sudden price hike, the nurse I spoke with offered to get me the generic form of pill one– pill two. When I told her all the side effects I had suffered on that pill, she told me that my $75 bill was perhaps “the price of peace of mind,” and something I would have to live with in order to have just one period per month. Three months passed before I was able to see my doctor about trying something new.
At this point, I was almost twenty-three, and I had a new partner. I talked with him about my frustration, and he encouraged me to fight for a method that really worked for me. He suggested I might be happier with something I didn’t have to take at the same time every day anyway since my singing career had me working strange and variable hours. In the wait to see my doctor, the itching came back full time and the Epsom salt baths stopped helping. The doctor told me it was my sensitive body again.
I decided to try an Intrauterine Device (IUD), which are now known as Intrauterine Contraceptives. My doctor recommended the Skyla because it was designed to be smaller, for uteruses that have never been pregnant, and had a lower dose of hormones, for my “sensitive” body. Insertion was predictably awful, especially since they forgot to tell me to take a high dose of ibuprofen before I got there. The painkillers they gave me once I arrived still hadn’t kicked in at the time of insertion. I continued to have intense cramps for days after. They were so painful that I had to struggle to remain upright. I did my best to hide it when I was teaching because I didn’t want to explain IUDs to my young students, but I often couldn’t conceal a wince around my friends and family.
The itchiness problem cleared up almost immediately, and I congratulated myself on conquering stress rather than connecting it to the change in birth control. I lost twenty pounds without changing my lifestyle, and my doctor admitted that maybe the pill did have something to do with the weight gain after all.
Although some people stop getting periods while on an IUD, I did not. In fact, my periods became longer (though thankfully very light) and every month, with the prolonged bleeding, came a few days of excruciating cramps. I take pride in being tough and didn’t want anyone to think I was weak, but they were bad enough to almost bring me to tears. I called my doctor after a couple of months and was once again told to wait and see if it got better. It did not.
I survived nine months of dreading my period and the pain that came with it. I tried to plan my life so I didn’t have to do anything challenging or public during those few days each month, but that wasn’t always possible. I had to rely on my acting training to keep my face blank when a cramp stabbed through the center of my body. I rehearsed and performed five operas, and I went on a traveling audition tour. When I had time to come home, I cried in my partner’s arms, instead of making love to him like I wanted to, because I hurt so much. I called my doctor’s office again and said it wasn’t getting better. Suddenly very sympathetic to my pain, they scheduled me to have the IUD removed as soon as possible. The earliest appointment was in three months. So I survived some more.
My next attempt at birth control was the NuvaRing. I had decided pills were too much hassle with my schedule, and I didn’t want to insert anything else into my sore uterus. I was relieved and happy to have normal cramps again, but, of course, the itching came right back.
I checked in with my doctor a few months later because I was gaining weight rather rapidly and my vagina was uncomfortable. She told me again that the weight gain was probably me growing out of my child body, and didn’t seem to remember that I had already shown a history of gaining weight on hormonal birth control. It didn’t occur to me that this discrepancy could be evidence that she might be wrong about other symptoms. Since I liked my body with a bit of extra squish, I decided not to worry about it. We were back to blaming my “sensitive body” for the irritation in my vagina, and I had no real tools to help with it. She suggested it might be connected to eating too much sugar.
I thought I was to blame for my ongoing discomfort. Not eating sugar didn’t make a noticeable difference in how my body felt, but it was the only helpful suggestion I had to maybe feel better some day. I spent my twenty-fourth birthday feeling very guilty because my dad took me out for gelato and wine. I did my best to enjoy the sugary celebrations since I reasoned that I might as well enjoy the moment if I was going to suffer later, and I mostly managed to have a fun birthday. My dad’s sense of humor and the wine helped, even though my dad didn’t know everything that was going on at the time. Even when I avoided sugar, there was no change in the irritation.
Several more months into using the NuvaRing, I had all the symptoms of a classic yeast infection. I was relieved because it was something I could treat, but the treatment didn’t work. Back to the doctor I went, and she prescribed a stronger anti-fungal and did a test to verify that it was yeast. It wasn’t.
The next thing we tried was boric acid suppositories to help adjust the pH of my vagina to a healthy acidity. Your pH can be affected by all kinds of things, including—wait for it—hormones like the ones in birth control. The boric acid helped a lot, but I was still often uncomfortable during intercourse, and this time I actually stopped doing things that hurt, which my partner fully supported and appreciated. Sex became infrequent.
The first time I had gained weight on birth control (pill one), I stopped around twenty pounds heavier and stayed there for a year or so. With the NuvaRing, I was thirty pounds up in nine months and showing no signs of slowing down. I was healthier than I ever had been in my life, running three times per week and eating baby kale for snacks. I often turned down dessert because I still thought sugar might be contributing to my vaginal itching. Not that I trust the Body Mass Index, but I was showing an unhealthily heavy BMI for the first time in my life, and that was confusing and upsetting.
Additionally, I got routine blood tests from my primary care doctor and had high cholesterol for the first time in my life. The nice nurse on the phone recommended nutrition choices that included exactly what I usually ate, and she was confused when I told her my normal diet. She asked about my exercise habits and was completely flummoxed to learn that I did more cardio than the minimum necessary. When I asked if it could be the birth control I was on, she said that the NuvaRing couldn’t cause those problems because it didn’t have estrogen in it (it does, but I didn’t know that yet).
Suddenly, one morning, it was all too much for me when my mom commented very kindly on my weight gain and asked if it could be the birth control.
I am wary of health information on the internet, but I was sick of my doctor’s office, so I put on my mental armor and searched NuvaRing side effects. Happily, the first result was from the NuvaRing manufacturers, and not a WebMD article diagnosing me with terminal cancer.
I found the list of common side effects on the official website. The very first one was vaginal/cervical tissue irritation.
I almost burst into tears of frustration right then and there. I had spent months looking for obscure remedies to this mysterious problem when it was not only a possible side effect of one of my medications, but the VERY FIRST one listed as MOST COMMON. Later on the list, I also saw weight gain, and that was enough. I called my doctor’s office immediately and said I was going to stop using it, and I wanted an appointment to find new birth control.
In looking through the list later and with a calmer mind, I also found several other health problems that I hadn’t thought to link to my birth control. I had started showing signs of depression in addition to anxiety around when I started trying hormonal birth control. I had been dealing with on and off acid reflux since starting the NuvaRing.
I later learned that the NuvaRing is a mixed hormone method and does, in fact, contain estrogen, contrary to what the nice nurse had told me. I learned this information from an online magazine for singers, and I checked it in multiple places because I couldn’t believe that my doctor’s office knew less about a medication than a bunch of 20-something sopranos. My cholesterol went back to normal soon after halting use of the NuvaRing, where it has stayed ever since.
Earlier on, I had heard from other opera singers that hormonal birth control had affected their voices. Vocal development is so complex that I will never know for certain if my birth control was the reason, but it is true that I lost my super high notes around the time I started trying pill one, and that they started coming back during the time I used the Skyla, and that they returned and stayed after I stopped messing with hormonal birth control. I had mentioned this concern to my doctor when I started, and she, of course, said it was nothing to worry about.
I gave my body a rest from hormones for a while after stopping the NuvaRing. I wanted to reset, and it felt great! The weight didn’t fall off like the previous time, but my healthy exercise and eating finally had a noticeable effect on my appearance. I lost 20 pounds gradually and healthily over the next couple of years. Within one month, the itching went away and I was able to enjoy sex again. My voice got freer and stronger more quickly. The depression fog lightened slightly, and therapy was more effective than it had been before.
However, all of this progress came at the price of irregular, painful periods (just like my oh-so-fun high school days) and using condoms with my monogamous partner. I still needed a long-term solution. I swore to myself that I would be more assertive and vigilant this time, and fight for a method that worked for me. I went out of my way to research new methods. I did not go back to that doctor who kept telling me my symptoms were just “sensitivity.” I went to Planned Parenthood, and I did enough research that I was basically going in and telling them what I wanted.
When I had the Skyla, I only had unbearable pain during my period, so I reasoned that an IUD that stopped my period would also stop the pain. Most people stop getting periods with the Mirena, which motivated me to try that next. The thought of a life without period pain, and with safe sex that took no effort, was worth the pain of insertion and the risk that I was wrong. The nurse practitioner at Planned Parenthood agreed that my logic was good, and, unlike my previous doctor, used a topical numbing cream on my cervix to aid with insertion.
Insertion was still awful, but my partner came with me and spent the next day snuggling me and providing heating packs for my sore abdomen. I had gotten the Mirena during my period, which is recommended as the cervix is already dilated. The terrible cramping commenced and I soothed myself with the knowledge that it would probably stop soon.
Except it didn’t. I had the Mirena for two months, and in that time I never stopped bleeding. There were breaks in the pain when my uterus wasn’t contracting, and I had a lot of very enjoyable sex during those times, but the pain always came back. It was particularly excruciating when pain correlated with times that I needed to sing because I have to use so many of those pelvic muscles for my voice.
After two months, there was one especially awful night when I was crying with a combination of pain and despair that it would never stop. My partner asked me if he could offer a suggestion, and he asked that I consider letting this go instead of trying to fight through until the magical day when it got better. I agreed and got an appointment for that very week to have my IUD removed.
Only this time I decided to ask for help choosing a new method. The low dose hormones of Mirena and Skyla did not give me weight gain or vaginal irritation, and I liked the cycle control of hormonal methods, but daily pills were not sustainable for me and I was wary of all hormones at this point. I made a list of everything I had tried and the various side effects, and I hoped that someone with more medical knowledge than I could make a good recommendation based on this information. I went back to Planned Parenthood, where I had been treated with much more respect, and where not being on my parents’ insurance anymore wasn’t a problem.
I started my spiel about everything I had tried, and the nurse stopped me right away. She said it was pointless, and they couldn’t tell anything from that information. I was disappointed. I asked if she was telling me the only option was to guess and check, and she said yes. So I looked at her list of options and picked one to ask about: the Depo shot. The nurse told me it might be a good option, but if I had gained weight on the NuvaRing I would probably gain weight on the shot.
I stared at her for a moment, processing that she had just used information about my previous experiences to predict how I would react to other methods when she had explicitly told me that it was impossible to do just that. I decided it was more important to get information, and I continued to use this newly discovered method: I picked a specific option, voiced my concerns based on my past experiences, and let her tell me about that specific method and how it might affect me. We agreed that IUDs were simply a bad option for my body, and a comparable method in terms of hormones was the Nexplanon implant.
I got the implant inserted in my arm, which was much less painful than having an IUD placed in my cervix. I did not experience any extra periods or spotting, and my mood was fairly stable, but the itching came back during intercourse. It was definitely better than the NuvaRing, but it was there. I waited a few months to be sure it wasn’t a passing thing, and then checked off yet another method that didn’t work for me.
I went back to get the Nexplanon removed, and I was handed an informed consent that listed potential side-effects of the procedure, including possible scarring at the site of the implant. I was shocked because I couldn’t remember having been told at the time of insertion that a scar was a possibility. It would not have changed my decision, but it seemed odd not to make a point of it at the beginning. After all, what was any potential patient supposed to do after having one inserted if they didn’t want a removal scar? Leave it in forever?
I later found a note on the informed consent for insertion that mentioned possible discoloration or scarring at the insertion site, but it said nothing about the potential consequences of removal, which requires a larger incision. If I had not come from such a long process of medical professionals misleading me about possible consequences of my birth control, I would assume in good faith that I simply didn’t remember them telling me about the scarring possibility. However, I have absolutely zero evidence that I can rely on doctors to be forthcoming with information about birth control side effects and I have a lifetime of evidence that I have an excellent memory for details.
When I became sexually active, I did not know that I was starting a journey that would take almost ten years and eight birth control methods before I realized how many of my health problems were hormonal side-effects, and how many symptoms my doctors had disregarded.
Even now, I am shocked that these sex-positive, seemingly woman-friendly practitioners could be so dismissive of me. I believed them when they said my body was “just sensitive” or my symptoms were “just part of growing up.” These symptoms affected my whole life and career. As a singer, my body is my instrument, and it became unreliable and unpredictable. As a human, I was miserable and unhealthy, both physically and mentally.
When I stopped using hormonal methods, I had an anxiety in the back of my mind that I really was “just sensitive” and my symptoms wouldn’t go away. But the symptoms did go away. The itching hasn’t come back at all, either during sex or in regular life, and my weight has remained in a healthy place that makes sense with my lifestyle. My mood didn’t magically become totally stable, and I still have mental health issues, but I feel more grounded and functional now. My voice grows more freely and consistently, and I am currently performing music that once seemed impossible.
I could have saved years of self-blame and discomfort if my doctor had listened to my concerns with the first pill, or if I had believed my body the first time it told me something was wrong. Instead, we both assumed I was to blame, and not the medication.
I am telling my story now because I hope no other people with vaginas will have to take this long to realize the cause of their problems. I hope people will read this piece and be more prepared to advocate for themselves in matters of reproductive health and pelvic health because this is apparently an area in which otherwise trustworthy healthcare practitioners suddenly let us down.
I also want to mention that my experience contains layers of privilege: I am white, able-bodied, cisgender, educated, and from a middle-class family. My parents’ health insurance covered me until last year. I have access to doctors that (usually) listen to me. I can only imagine how difficult and terrifying these experiences would be for someone with fewer resources, or for someone whom doctors automatically dismiss even more because of bias.
I stick to barrier methods like the diaphragm and condoms for now, and I very much hope that I have better options in the future. My periods are painful, but not as painful as the physical and mental discomfort I suffered on all the hormonal methods I’ve tried so far.
I’m not advocating for no hormonal birth control ever. I am advocating for people with uteruses to fight for real information, and to take our bodies seriously. I hate that it’s a fight. Doctors should be able to offer us good information and help, but that is not always the case. My hope is that, if you see yourself in any of this story, you will believe yourself the first time. If you are in any way uncomfortable or in pain, that’s not “just your normal,” and you don’t have to live like that. If you have unexplained mood changes or weight changes, that might not be “just life.”
Birth control side effects are real, and for some reason, health care providers are very unreliable about them. It is my hope that birth control will continue to get less mysterious, and people with uteruses will be informed going into it that these kinds of side effects are possible. It is my hope that doctors will take us all more seriously, and especially listen to women talking about sexual health. I’m sure there is prejudice that makes it hard for trans folx with uteruses to be taken seriously, though I don’t have personal experience with that. I hope we keep demanding better until this level of treatment is normal.
In the meantime, I offer my story with the hope that it will help at least one person. You deserve to have a happy and healthy sex life, and you deserve a birth control method that allows you to feel happy and healthy in the rest of your life.
About the Guest Blogger: Code Name Cassandra is a performer and educator in the Pacific Northwest. She reads and thinks a lot, and sometimes that turns into writing. Her accomplishments with the written word include several notebooks of fiction on a closet shelf, occasionally playing Banana Grams, and an award-winning undergraduate honors thesis that covered interdisciplinary examinations of mythology in music. Her life mission is to empower others through art. In her free time, she rereads Tamara
Pierce books again.