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Three women share their story of living with endometriosis and polycystic ovary syndrome.
For all the strides that medicine has taken, the patriarchal bend has led to an absence of studies on women’s bodies. This has resulted in a lack of understanding for many conditions and diseases that women suffer. Endometriosis (endo) and polycystic ovary syndrome (PCOS) are two such conditions that still aren’t fully understood. People seeking treatment for endo or PCOS at Wellington Hospital will find themselves in the women’s health unit, where other women are getting advice on their pregnancies, having ultrasounds, miscarriages, or giving birth. It seems bizarre that so many patients with such varying reasons for being there were all lumped under the umbrella “women’s health.” Not only is it transphobic (not all women have uteruses, not all who have uteruses are women), but it is indicative of a culture that has failed to engage with the illnesses contained within the “women’s health” category, and has resulted in a lack of awareness making access to diagnoses for those with endo or PCOS difficult or impossible. Endo advocacy organisations report that up to 10% of women have endometriosis, but it is mooted that the real statistic may be even higher; as many people go through their lives unaware of cysts or endometrial issues until they try and have children—and even then it’s not always caught.
Endometriosis can be characterised as a disease or a chronic illness. Its cause is unknown, but it results in endometrial tissue (uterine lining) being flushed the wrong way out of the uterus and sitting in areas of the pelvis or torso where there shouldn’t be any endometrial tissue—e.g. on the ovaries, bowels, intestines, kidneys. The tissue continues to function like endometrial tissue and thus, when people get periods, the tissue will often bleed into the pelvis and be extremely painful. Instead of just having a period discharged the usual way, it is also discharged back into your body where it can form painful cysts.
As a teen, I had experienced varying levels of pain during and around my periods. Unluckily for me, no-one else in my immediate family experienced much period pain and so what I was experiencing was written off as mere cramps. This is an all too common event for women with endometriosis: their pain is written off as “normal” and women are expected to continue in their daily lives regardless of the pain. Even if I didn’t have endo, I would be annoyed if someone told me that the period pain I was experiencing was “normal” and just had to deal with it. Considering about half the population have periods, and many of those people experience some form of associated pain, “dealing with it” doesn’t really seem to be an acceptable solution. It is a diminution of the severity of “women’s issues” and thus an entrenched aspect of misogynistic culture.
I first saw a doctor about my period pain in second year. The pain was so bad it would give me migraines and I would be bedridden for the first day or two of my period every month. The freezing flat I lived in atop Brooklyn hill had never looked as bleak as it did the day I called my flatmate on his phone from the next room to ask him to find my ibuprofen from the cabinet as I couldn’t get out of bed.
At my first doctor’s appointment I was given bulk amounts of paracetamol and ibuprofen and asked to consider going onto a contraceptive pill—in the hope it would manage my period pain. There was no discussion of the possibility of it being endometriosis or anything other than regular period pain. I tried the pill a couple of months later. It was my first hormonal medication and, although it slightly lightened my bleeding, I found myself crying about strange events that would not normally affect me. I cried crossing the street because the light in Kelburn village looked so pretty and I knew I wouldn’t be able to capture it for posterity on my phone. I cried because we ran out of coffee beans. I was crying almost daily for a fortnight of my cycle. I stopped taking the pill and hoped that the period pain would go away.
I finally got a diagnosis in February of 2014. I had been away at Camp A Low Hum, and after having too much of a ~good time~ I put the extreme pain I was in down to the combination of period pain and hangover/come down. By the following tuesday, I couldn’t walk and was finally admitted to hospital with suspected appendicitis or a ruptured cyst.
I had tennis ball sized cysts around each ovary. Those in the business call them “chocolate cysts,” because the blood forms cysts outside of your uterus and as it ages turns the colour and texture of melted chocolate. I had an infection in my pelvis which had spread to my blood from one of the cysts rupturing. The validation I felt at getting a diagnosis was immense: finally, I wasn’t just a big baby/drama queen/attention seeker! And, all it had taken was five years of pain, two rectal examinations, and three internal examinations of my vagina! Relief!
I’ve now had two laparoscopies (keyhole surgeries) for removal of cysts and endometrial tissue around my bowels, intestines, and ovaries. I have an hormonal IUD in place and I’ve been hospitalised three times in the last two years for endometriosis. After my most recent endo flare-up, where I had yet another cyst rupture and subsequent pelvic infection, my GP (Cathy, bless her soul, I want to be her best friend and she has been so good to me over the last couple of years) talked to me about children; whether I want them, and if I do, how I need to think about starting a family immediately. I have effectively exhausted my treatment solutions for a while, as my specialist will not operate on me to remove further cysts as too much surgery will result in too much scar tissue, impeding my fertility further. My mirena was put in during my first surgery, and doctors led me to believe that it was going to be a great cure for my endo pain and that it may even cease my periods altogether. Unfortunately, it took six months of constant bleeding before I had any noticeable decrease in pain. Two years on, I’m happy with my mirena. I bleed less frequently than I used to and the pain is slightly lessened, but it is by no means a miracle cure. Enduring six months of hell post-insertion was not worth the benefits I receive. I have found the most relief I get from the pain is acupuncture. For the first time in as long as I can remember, I have just had my first entirely pain-free period after seeing an acupuncturist weekly for two months.
My baby-making situation is complicated further by virtue of me currently being in a serious relationship with a woman; even if I were to start the process of having children immediately there are already significant fertility hurdles in place—for once it’s not just my beat-up body getting in the way.
I have always known I want to have children, and having endometriosis has only reinforced that. I worry about reconciling my wish to have a career that makes use of my degrees with my desire to have children. Something that most people have to worry about eventually, but it’s not often such a glaringly immediate and pervasive concern.
Sometimes when I’m having an endo flare I pretend my uterus is its own sentient being, because that’s how it seems. It will be a pain a lot of the time, to the point where it effectively controls how I live my life, but most of the time I just feel sorry for my poor little uterus which just doesn’t know how to function like a normal uterus should. Endo flares make me bloated, tired and they lower my immunity, so I often get other viruses or bugs that if I were healthier I wouldn’t get.
I had pneumonia and legionnaires’ disease last year, and when I was hospitalised with it I got so angry with my “scarred pus-sack of a body” that I considered trying out religion so that I could ask God for a refund and a new body—or at the absolute least, be turned into one of those talking heads from Futurama.
It’s annoying and frustrating, but I find if I get too caught up in my own head about how this disease may stay with me for life then I get too dejected when thinking about my future. Having endo hasn’t stopped me loving my body or even my uterus. It’s made me think about how as an able bodied person I take my body for granted, and how little support there is for people with chronic illnesses who can’t always work or study all the time. I admit that in most pained moments I have threatened my own uterus with performing a hysterectomy on myself with a kitchen knife and a soup spoon. It didn’t stop the pain, so I took a tramadol, slathered my torso in deep heat, and watched Gilmore Girls.
How would you describe your body/uterus?
I would describe my uterus as cooperative but under resourced, it tries its best but it just can’t keep up.
Half of the world’s population (roughly) have a vagina. Yet we get embarrassed talking about the organ, and hide behind fluffy euphemisms. Tampon ads are all pink and happy, when having a period is anything but. Advertising campaigns make having a period seem like such a uniform experience; one or two days of heavy bleeding, then four days of continually easing blood flow. Nothing that should be too painful to inhibit you from jumping in a pool or wearing a goddamn g-string. As women with vaginas, we need a better vocabulary for pain, to dispel the embarrassment surrounding our bleeding organs and be able to talk freely about our experiences.
I had started menstruating on April Fools Day; looking back at it now, it was a pretty cruel joke. I was eleven, the standard age that the women in my family had experienced their first period. I took a week off school; the pain was so excruciating that I could barely walk. I lay on the couch with a wheat bag on my tummy and was force-fed paracetamol by my mum. Painkillers never really helped me personally, so I usually just forwent them, weathering the pain.
I would often skip school because of the pain, and after having such bad periods that I couldn’t stand up without fainting, I finally went to the GP. My GP was very sympathetic. The gynecologist that she referred me to however, was not. A brusque lady named Ruth disregarded my symptoms, handing me a pamphlet explaining what a period was. I was mortified and discouraged by this initial encounter—knowing deep down that there was more to it. I remember crying to my mum, just wanting some validation for what I was experiencing.
I had more success with my now-gynaecologist, a nice German man with cold hands, who explained that I was lucky to be diagnosed with endometriosis early. I was put on a contraceptive pill at first, continuously taking the “active” pills and discarding the “sugar” pills so that I wouldn’t (theoretically) have a period. With the blood flow restricted to the endometrium, the tissue growing as cysts on my fallopian tubes would dry out and unlikely to cause more harm. But my uterus had other ideas. I bled for two weeks straight. I stained a pair of my friend’s shorts and had a tampon stuck on my abnormal hymen—it was a traumatic event. My own body had humiliated me—I was a freak, unclean, and in an unfathomable amount of pain. I decided I was over the pill, and after a LOT of snotty crying in the doctor’s office, I decided to have a laparoscopy.
I was two weeks away from my fifteenth birthday when I was wheeled into the operating theatre. I was poked and prodded, even asked if med students could watch the procedure. No one had even ever seen my vagina, apart from my mother when I was a baby, and I was still at the awkward stage of puberty of being deathly embarrassed by my own body. But I had hope, hope that the insertion of a Mirena would give me some reprieve from my endometriosis allowing me to be a normal member of society.
During my surgery, they had made incisions in my belly button and on my bikini line to insert a camera and forceps into my pelvis to look at my uterus. From there, they dilated my cervix and scraped the lining of my womb off using a curette (this procedure is coming referred to as a D and C), inserting the mirena and taking photos of the endometriosis in the process. The tissue was mainly wrapped around my fallopian tubes, and thus was too risky to remove without risking damage to the tubes. The surgeon also removed my hymen, that had developed abnormally as a thick band of muscle blocking my vaginal opening like a stop sign. I had always found this funny, as if my body had put a no-entry sign en route to my uterus.
However, I only remember three things about waking up post-surgery: the blood-stained white fishermans’ gumboots the surgeon wore; laying in a bed of my own blood from the D and C; and having my cotton underwear returned to me in a non-descript brown paper bag.
Endometriosis is a condition that, if left untreated, can render a woman infertile. In the uterus, there is the endometrium lining which during menstruation sheds due to a hormone called progesterone. This shedding prevents the fertilised egg from implanting itself and sprouting a baby. When a woman has endometriosis, the tissue that makes up this lining is found outside of the uterus and can grow in various areas such as around the ovaries, outer walls of the uterus, bladder, and any area in the pelvic area. When a woman with endometriosis has her period, the areas of tissues bleed, causing pain, inflammation, and sometimes scarring. The most common symptoms of this condition are pelvic pain, heavy and/or long periods, and difficulty falling pregnant.
No one really knows a heck of a lot about endometriosis. For years, it had been exclusively placed under the label of a “women’s issue”—an issue that was taboo to talk about. For years, the only other person I knew that had the same condition as me was the daughter of a family friend. “It’s really rather tragic, especially now that she has such a lovely man-friend,” my mother had whispered to me. Mum doesn’t think that anyone under 21 can be labelled a ‘girlfriend’ or ‘boyfriend’, and rarely uses the word ‘partner’. I wondered if this is how other people would talk about me. No matter how well-educated, kind, or successful in my career; I would be “unfortunate” because my own body may compromise my child-bearing ability.
I remember being ten and so confused when my eccentric brother’s girlfriend asked if I had started bleeding yet. I had never even heard anyone call menstruation anything other than a period, and didn’t even really know what happened when you ‘became a woman’. Cringe. I have always hated the idea that sexual maturity and fertility equates to womanhood. It seeks to alienate women who weren’t born female, or struggle to get pregnant. When a large portion of a woman’s identity is considered to be her ability to reproduce then it’s scarring for those who choose not to procreate and for those struggling with fertility. Our white-bread, homogenous society is so obsessed with reproduction. Why? We don’t need more humans on this earth. My ability and desire to have children should not be assumed. I am not a less valuable member of society.
I was told by a doctor that I should have children by 25, and compromise my career to become a mother. My older sister even offered to have my child for me, to be my surrogate. It’s a pretty heavy conversation to have with someone, to think about the worst case scenario, and discuss your potential infertility. I was always slightly bitter towards my sister, with her normal periods and two days of light bleeding: a “pretty” experience compared to the R18 gore-fest that was my monthly reality.
I didn’t have any bleeding for three years following the Mirena insertion. This year, I am due to have another laparoscopy, to inspect the extent of the damage, and replace my IUD. Although this method doesn’t work for everyone, it has managed my symptoms adequately. You shouldn’t have to shoulder the pain; and plucking up the courage to talk to a doctor about your vagina may be the thing that allows you to keep all your options open.
How would you describe your body/uterus?
Strong, temperamental, bitch, resilient.
PCOS is a hormonal condition that can affect women from puberty onwards. It’s thought that 5-10% of premenopausal women have PCOS (this vague statistic is due to the fact that many women don’t know they have the condition). PCOS is usually characterised by cysts on one or both of the ovaries. Basically, an overproduction of androgens (the male hormone), disrupts the ovulation process. I’ll let the Southern Cross Healthcare Group describe exactly what happens: “An egg begins to develop but does not fully mature and therefore is not released. Instead, the follicle in which the immature egg is contained becomes a fluid-filled cyst. Each cyst is usually between two to six millimetres in diameter, and, over time, multiple cysts can cover the ovary.”
There are a number of symptoms associated with PCOS, including: irregular periods, excessively painful periods, weight gain, acne and oily skin, excess hair growth, and even hair loss. Some women may have only one or two of these symptoms, while others may exhibit a few.
The implications of PCOS can, however, be wider ranging: there is an increased risk of diabetes due to the insulin resistance associated with PCOS; an increased risk of endometrial (uterine) cancer; and, most commonly, fertility problems. In some cases, ovarian cysts will rupture, which can be extremely painful. On the mental health end of things, a recent study suggests up to 60% of women with PCOS experience depression and anxiety.
While the presence of the aforementioned symptoms indicates PCOS, the condition is usually formally diagnosed by an ultrasound examination of the ovaries. PCOS cannot be cured, but there are a variety of ways in which it can be managed. The causes of PCOS are not fully understood, but a gene contributing to the development of the condition has been identified, indicating that it could be hereditary.
Right from when I got my first period at age 12, something was off. They were infrequent, and when they did arrive, they were often accompanied by a pain that was raw and sharp—I’d never felt anything like it. Was this what it was like to be a woman? If so, I felt quite firmly that it wasn’t for me. Our family GP asserted that it was just par for the course with puberty, and that things would settle down and become regular. This seemed to make sense, because puberty is such a crazy time anyway, and everybody has a different experience.
There was about six years where I thought that my irregular cycle, and the unpredictable pain, was ‘normal’, if inconvenient. At 17, with no improvement, I was booked in to see a gynecologist who worked out of Family Planning. She was the first to suggest PCOS, and prescribed a contraceptive pill that also functions as an androgen blocker for women with PCOS. The pill would eliminate any cysts on my ovaries, so there would be no risk of a cyst rupturing, and being on contraception meant I could have a regular cycle, with less pain. In retrospect, that horrible pain I felt could have been from ruptured cysts—it’s scary to think I didn’t know what was going on in my own body.
The cysts were described to me as looking like a “string of pearls”—a quaint descriptor that belied their possible menacing presence in my body. For a formal diagnosis of the condition, I would need to have an ultrasound that would confirm the presence of the cysts. Around two years later I had the ultrasound, and there they were, the promised pearls, all my own.
Perhaps the weirdest thing to learn about PCOS, however, was the effect that it could have on my fertility. As a teenager, children were a foggy presence lurking somewhere far in the distance, something that I didn’t even need to think about thinking about. But, when I was told that having children may be more difficult for me than it is for others, I felt abruptly cut off from something which is assumed to be so innately female. I felt ripped off, and sad, and confused about why I felt sad. If I wanted to have children, I would need to start planning for it sooner than other women, so that I had a better chance. That’s a strange thing to be confronted with as a teenager.
Some women with PCOS have little to no trouble with conceiving; some will consult fertility specialists, undergo IVF treatment; others will not be able to conceive at all. There’s no real way to know until you try. But this idea that the ability to bear children is a given for women is inaccurate. Getting pregnant can be difficult for lots of women, for a variety of reasons. PCOS is just one piece in the weird fertility puzzle.
Initially, I felt a lot of shame connected to having PCOS. I had never heard of the condition before, and certainly didn’t know of anyone else who had it, so I assumed it was something bizarre and freakish that I’d been lumped with. That couldn’t be further from the truth, and as I came to realise how common the condition is, I felt less alone. We are isolated when we don’t talk about women’s health issues, and the best way to combat this is by opening up to those around us.
Each woman has a different experience of PCOS, it’s the nature of the condition, so asking questions and doing your own research is important. The first answer isn’t the final answer, and this particularly applies to women’s health, where there are often large information gaps. If you feel that one doctor isn’t giving you the right answers, try another. Seek out others in the same club, and compare experiences.
For me, managing my weight is important for managing my PCOS, both now and in the long-term. But, there are many other avenues that can be explored (such as herbal remedies, acupuncture), and what works for one will not necessarily work for another. The most crucial thing is to know your own body, know when something isn’t right, and empower yourself with knowledge.
How would you describe your body/uterus?
Occasionally misbehaves, but we’re learning to be friends.