Blood, pain, frustration, loneliness, hopelessness, uncertainty.
These are just a few of the defining features that come with living with a health condition that is under-researched and misunderstood by doctors.
The gender health gap — the disparity in health between people assigned female at birth (AFAB) and people assigned male at birth (AMAB) — is wreaking devastating consequences.
Conditions like endometriosis, vaginismus, premenstrual dysphoric disorder (PMDD), and polycystic ovary syndrome (PCOS) remain shrouded in mystery due to a dearth of related scientific research.
The UK has the largest gender health gap in the G20, where it takes on average eight years to get an endometriosis diagnosis. Ten percent of women worldwide have endometriosis, but despite its prevalence, doctors still don't know what causes it. Add to that the fact that doctors don’t actually know what causes premenstrual syndrome (PMS), PMDD, or PCOS.
People with these conditions are dismissed by doctors, told to "go on the pill" or "lose weight," and left to figure out what's happening inside their bodies. Because of the lack of research into these conditions, even after receiving a diagnosis (after years fighting for one), there is little — if any — support, with some being entirely without a cure.
So, what is the human toll of the gender health gap? Mashable spoke to six people living with gynaecological conditions to hear about their experiences.
The period that lasted nine months
Natasha Petrou was in university when her period lasted nine months. She was tired and lethargic to the point where she was having to nap twice a day, exercise drained her energy, she experienced mood swings, gained weight, and joint pains impeded her ability to do her job. "I had to write my emails by doing voice notes because I couldn't actually type, it was that painful," she says.
She suspected her contraceptive implant might be the cause. After six months of bleeding, Natasha saw her doctor. She'd been meaning to, but between exams, moving house, and job-hunting, she had a lot on her mind. Her GP's suggestion? To "get a bit more sun" to help with the lethargy and to avoid her phone before bed. "I just felt really ignored," she says. "I almost had to just laugh and I just felt like giving up."
Natasha's symptoms continued. At work, she had to ask for special measures to carry out her duties. "I literally had to ask my boss to allow me to have desk naps," she says. At the time, she felt there was no hope. "I felt like I was going to end up living a life of pain and tiredness."
"I felt like I was going to end up living a life of pain and tiredness."
When Natasha moved, she saw a doctor who took her concerns seriously, scheduling urgent tests. "She was straight away like, ‘We need to get your implant out,'" she says. In an ultrasound, they found cysts in both ovaries, identifying it as quite a serious case of polycystic ovary syndrome (PCOS). The doctor removed Natasha’s implant and she felt an immediate improvement in her symptoms.
But her issues with getting adequate treatment for PCOS didn't end there — to date, the only thing she’s been prescribed is consultations with a dietician, who is thankfully sensitive to Natasha's history of disordered eating. But other than this, there's little else on offer. "I've literally just been told the only thing I can do is lose weight, which is hard as it is because I've got PCOS, and one of the things it does is makes it hard to lose weight," she says.
Information is scarce on related questions; when she asked doctors about how PCOS might affect her ability to conceive, Natasha was met with vague replies. "They've said that when the time comes, come back in and we'll help you out with some hormone treatment," she says. Other than that, there's been no follow-up. "I don't know how easy or hard it's going to be to get pregnant."
Natasha uses one word to describe her journey to diagnosis: frustration. "Frustration because it's taken that long to be taken seriously. Frustration because I know that I'll get the diagnosis and there isn't much I can do with it from there," she says. "And frustration at the fact that there isn't that much research into it. Our options are basically diet or go back on the pill."
The constant pain that took over her life
Radha Mistry was in her early twenties when she started experiencing irregular periods with heavy bleeding and severe pain. Her GP prescribed the contraceptive pill, which didn't help with her symptoms. "The side effects were horrendous. I was gaining weight, breaking out in spots, mood swings, and even passing out," she says.
After multiple pills, Radha tried an intrauterine device (IUD) or coil — and it went badly. "I bled for nine months solid," she says. "I kept calling my doctors and was advised that it was 'normal' and my body just needed time to adjust." But Radha couldn’t cope with the bleeding, was finding it difficult to function, and was forking out for sanitary pads on a weekly basis. The coil was taken out.
A few years later, Radha got a sharp, constant pain in her side. She was monitored overnight in the emergency room and sent home with little information. Days later, the pain intensified. "I couldn't stand and over-the-counter pain relief didn't seem to work," she says. Radha spent another night at the hospital. "The doctors again couldn't give me an answer...it could be appendicitis, PCOS, UTI, a bladder infection."
Radha had an internal scan, which was extremely painful. "I remember the doctor being so rough with me, I came out of the room in tears. I just couldn't believe what happened," she says. Afterwards, she was assigned a gynaecologist who, again, tried to prescribe the pill or a hormonal injection, "which would put me into early menopause to 'reset' my hormones...I'm 25 and they want me to go through menopause?" Radha refused.
When Radha was 28, she decided to have keyhole surgery to determine what was going on. After six years of appointments, finally, she got her diagnosis. "I was told straight after surgery, still groggy from the anesthetic, that I have endometriosis," she says. Post-surgery, no support was offered, not even a leaflet. "There was no advice or physiotherapy, pelvic pain management or a plan moving forward. I was left to my own devices."
"Living with endometriosis isn't just a gynaecology issue — it affects every element in a woman's life."
During these years waiting for an answer, endometriosis had a significant impact on Radha's daily life. Over time, the pain proved too great to attend events the day before her period. "Missing out on theatre days, parties, museums really affected my mental health. I couldn't be that social butterfly anymore." Simply leaving her home was stressful. "I used to carry a 'Endo Survival Kit' everywhere, it contained a hot water bottle, TENS machine [a small battery-operated device that relieves pain with mild electrical currents], mix of painkillers, CBD balm, pads, knickers, heat patches — everything I have used to help ease the pain."
But it wasn’t just her social life that was taking a hit. The financial impact took a real toll, as Radha was paying for medication and alternative therapies. Endometriosis also affected her career. Taking time off work for appointments or feeling ill, Radha was open with her managers. "My boss had endometriosis as well so she was really supportive," she says. "I constantly felt guilty for taking time off...I felt I was letting the team down." Though her workplace had put in provisions, Radha had gone from taking codeine to morphine in months and was struggling, so made the hard decision to hand in her notice.
Dealing with doctors, Radha didn't feel taken seriously, repeated her story constantly, and even started to doubt herself. At every step she felt "like a lab rat being tested on every variation of medication," and left without adequate support. "Living with endometriosis isn't just a gynaecology issue — it affects every element in a woman's life. There needs to be a change in how women are being diagnosed and not just prescribing the pill or painkillers."
A painful and confusing adolescence
Jack, who would prefer not to use his real name, is a trans man with polycystic ovary syndrome (PCOS). He was diagnosed at age 27, he’s now 39. Jack never suspected he had PCOS because his periods were pretty regular and there were no outward signs of it other than a sprinkling of facial hair that he ascribed to genetics.
PCOS affects ovary functioning, resulting in irregular periods, polycystic ovaries, and excess androgens, which can cause excess facial or body hair. There's also a link between PCOS and insulin resistance as high insulin levels can make ovaries produce too much testosterone, resulting in follicle development issues and disrupted ovulation.
Jack had been seeing a GP for frequent thrush infections in 2010 and because of a family history of type 2 diabetes, his doctor ran blood tests that measured serum testosterone. "Turns out my androgen levels were pretty high and the scan showed cysts were present," he says.
The impact of Jack's PCOS diagnosis is something he's reflected on, particularly now as he's in the early stages of his transition. "I'd always struggled to lose weight," he says. "When I was about 16, I was encouraged to exercise more and eat less by a doctor based on my weight, despite being on my high school's varsity swim team." Jack feels furious looking back on that incident, but at the time he internalised it as "normal."
"The symptoms of it stirred up incredibly complex and painful feelings about my gender in adolescence."
Jack’s diagnosis also came at an emotionally complex time for him. "PCOS impacted what I now call Puberty 1.0," says Jack. He was taller and sweated more than others assigned female at birth, and experienced his voice breaking. "Thanks to genetics, I have broad shoulders, a pretty strong jawline, and no ass to speak of whatsoever," he explains. "I'm not saying that having PCOS and the hyperandrogenism that can come with it means you're automatically trans; there's a lot of cis women who find the masculinising symptoms of it very distressing, and there are a lot of transmasculine people without PCOS. But for me, the symptoms of it stirred up incredibly complex and painful feelings about my gender in adolescence." Being confronted with masculine physical changes during puberty was agony for Jack. "I felt so in-between, like I belonged nowhere. It hurt so much," he says. "I also had no idea why what was happening to me wasn't happening to my AFAB peers. At that point I'd just internalised the fact that I was ‘weird’ so profoundly."
Jack remembers the moment he was diagnosed with PCOS. "I just felt this massive warm feeling of relief come over me," he says. "I finally had an explanation for my desire to be male so badly. I remember sitting on the bus ride home from the hospital with a grin slapped across my face; totally normal for someone who's just been told they will struggle to lose weight and might have difficulty having children, right?” This was long before Jack came out as trans and he would later come to grips with the idea that his transness was not predicated by hormone levels. "That moment was what let me take the tiniest first step towards confronting my feelings about my gender," he says.
As a trans person with PCOS, being able to access resources presents a challenge. "Most of the PCOS-oriented spaces online tend to be heavily gendered, or largely focused on fertility concerns and use very gendered language," says Jack, who still has learned so much more about the condition from his own research than anything a doctor ever told him.
As Jack is early on in his transition, he wonders how PCOS will affect him later. "I am still registered on the NHS [the UK’s National Health Service] as female because of said health problems — I hate it, but I also don't want those records to be lost or to miss out on invitations for appropriate screenings," he says. Jack is in the years-long queue to be seen by a NHS gender identity clinic, but has pursued gender-affirming treatments privately. "Given the state of trans healthcare in this country, I don't have much confidence in trusting in the system to do its thing in that regard, either."
The condition that stole her sense of self
Kimberley Bond started having difficulties when she was around 14. "Sometimes I would be absolutely fine, a regular teenager," she says. "But there were also other times where I would feel so low, I'd hate myself, I'd get so angry with myself, I'd wish I was dead."
Kimberley found the ruminations particularly difficult, and she would also self-harm. "Someone could say a mean joke or a bitchy comment and I would obsess about it for weeks, using it as a stick to beat myself with," she says. "I'd go through these dark phases and then my mood would just lift and I was feeling fine again."
School was tough, Kimberley says. "Neither my classmates nor my teachers could fathom how I could jump from such extremes so quickly, so I was labelled as a 'psycho' and an 'attention-seeker.'" When she was 15, Kimberley was referred to a psychologist who dismissed her feelings as "teenage angst." "The fluctuations in mood really affected my confidence and battered my self-esteem," she says. "I felt unable to cope — it was frustrating to wake up in the morning and not know what mood I was going to be in."
She never considered that how she was feeling was linked to her period, but when Kimberley was 19, she noticed her moods changed intensely three days either side of the start of her period. Around 22, Kimberley felt her symptoms worsening, withdrawing from her friends and having specific suicidal urges. "I suffered from huge bouts of anger and rage, at myself and friends. I indulged in hugely reckless behaviours," she says. "I felt guilty as well, feeling like I was being ridiculous when people have it so much worse."
"These are crucial times in your life at building a sense of identity, and PMDD snatched that from me."
Kimberley was 24 when her boss spotted she'd been self-harming. She was sent to hospital, referred to a crisis team, spoke to psychologists, and was diagnosed with premenstrual dysphoric disorder (PMDD) — something she'd never heard of before. "It took nearly two years, and a suicide attempt in January 2020 for me to finally get to grips with it," she says.
PMDD has had a massive impact on Kimberley's life. She says the disorder “set me back around 10 years in terms of socialising and development,” with those school labels weighing on her mind. "I talked myself down all the time. I was cripplingly shy. I got into toxic relationships," she says. Kimberley was convinced she'd fail her A-Levels so didn’t bother looking at universities, but ended up doing far better than she expected. "These are crucial times in your life at building a sense of identity, and PMDD snatched that from me," she says. "A part of me is in mourning for the happy teenager I could have been — but never was — because of this crippling, chronic condition."
A truly painful test
Elegy, who prefers to use her first name only, was 15 years old when she was having issues related to a pituitary tumour. In order to go on a birth control pill to deal with heavy periods, she was required to have a PAP smear test, but it was a painful ordeal. "I was not able to get through it and fainted from the pain," she says. "My OBGYN suggested I try breathing more during the exam."
A year later, Elegy had another smear because doctors described it as a "necessary" step in continuing her birth control. "I could not get through this second one, and vomited during it from the pain. I was told I would be given birth control again for a year, but I would have to be able to get through the exam the following year or they would not prescribe it to me again."
In the UK, smear tests are conducted every three years if you're aged between 25 and 49. If your test detects you have HPV (human papillomavirus — a common virus that causes warts and can, in some cases, lead to cervical cancer), you'll be invited for another smear test the following year. People aged between 50 and 64 get tested every five years, and over-65s will only be tested if one of their past three tests was abnormal. In the U.S. it is recommended that everyone with a cervix aged between 25 and 65 be tested every five years.
"I was not able to get through it and fainted from the pain."
The following year, it was time for the ‘necessary’ smear. "They immediately told me I had vaginismus," she says. "They said since I was only 17, identifying as a lesbian, and not sexually active, they would make a note in my file that I had this condition and to not perform the internal exam portion on me."
Elegy says she doesn't feel informed by doctors. Her first gynaecologist never mentioned vaginismus and even suggested she become sexually active with a partner or herself in order to "prepare for the exam." Another OBGYN told her the name, but "did not mention treatment options, reassure me, or offer support," says Elegy.
Vaginismus has a big impact on Elegy’s sex life. "I have been unable to be sexually intimate with my partners," she says. "I am in a polyamorous relationship with five other people, four of which are sexually active. They do not pressure me or make me feel bad about myself or my condition, but it is difficult for me regardless."
Elegy has repeatedly asked OBGYNs to get the smear performed under anaesthesia, but has been refused. The fact Elegy’s never been able to complete a smear test concerns her, particularly as members of her family have been diagnosed with reproductive health conditions.
Vaginismus is typically treated with the use of a series of dilators varying in size, which are inserted into the vagina. "I personally do not want the treatment for vaginismus," says Elegy, "for personal reasons, but I do not feel that I would be supported in my decision by the medical community."
Overall, Elegy feels failed by the medical industry. "As a teenager, I thought I was broken, and as an adult I have been trying to break away from that mindset with little support," she says.
A blow to self-confidence
Sophie, who prefers to use her first name only, has had problems with her periods and skin since she was a teenager, but always assumed it was normal. "I had severe acne so was given various topical treatments [benzoyl peroxide] that bleached my clothes, and was put on the pill, and eventually it became manageable," she says. "I remember joining a swimming gala at school, and a teacher put her hand on my shoulder and recoiled, asking what I'd done to myself, not realising it was acne."
As Sophie progressed through her twenties, she started noticing more facial hair, her hair thinned, and she was gaining weight. "My moods were really intense, my skin still looked like a teenager's with pretty bad acne, and I was overall very self-conscious," she says. Sophie had extremely heavy, painful periods, and was told by doctors that because of her weight she could not go on the pill.
In 2018, Sophie told her doctor she suspected she had PCOS. Thankfully, the general practitioner took her seriously and sent her for an ultrasound scan, which came back clear. "Nothing else was done about it," she says. "I just presumed this meant it was the end of the road and carried on as normal, presuming that I had some kind of hormone imbalance."
This year, Sophie was talking about period-related issues with friends who suggested that Sophie might be deficient in progesterone, so she requested a blood test from her doctor. Initially dismissive, the doctor arranged for Sophie to have one along with an ultrasound. "She diagnosed me with PCOS purely on the results of my blood test — my testosterone levels were way out — which is a good thing because the [ultrasound] scan came back normal again (although they did find a fibroid)," she says. A fibroid is a non-cancerous growth that can develop in or around the uterus.
Sophie will now have annual diabetes tests. Post-diagnosis, she feels reassured to know "my instincts were right all along." In hindsight, she feels she should have gone to the doctor sooner. "I just presumed we were all meant to have issues with our periods," she says. "I should also have fought harder when they didn't do a blood test last time. I should have done my research."
Sophie feels frustrated that she wasn't recommended to have a blood test earlier by her doctor. "I do feel like womens' health is easily explained away by other things, particularly when you are overweight," she says. "I have had to fight to have the right tests done, but once they have been done, I feel like things have moved quite quickly and in the right direction." That being said, she’s had no follow-up support from the general practitioner.
PCOS has had a huge impact on Sophie’s life. "It's severely impacted my self confidence, and I feel like it's intrinsically linked to my anxiety and depression," she says. "The thinning hair on my head has made me really sad and self conscious, although I've found that taking Vitamin D supplements has helped a little. The facial hair is manageable at the moment, as I can keep on top of it, and I have managed to find some decent products to help manage my acne," she adds. "I feel like PCOS has unknowingly affected so much of my life, and so much makes sense now."
"We are just conditioned to believe that pain and discomfort are normal."
The main impact has been the heaviness of her periods, with debilitating pain and nausea. "When I was younger and less good at managing them, I frequently bled through my clothes because I wasn't using the right products for me," she says. "I have to sleep on a duvet on top of my mattress to prevent stains, I don't like sleeping elsewhere when I'm on my period, although I have got better at managing this now I'm older and have discovered period pants!"
Sophie might have never realised she had PCOS had she not returned to the GP. "With womens' health, the emphasis is on the individual to know that something is wrong and act on instinct," she says. "We are just conditioned to believe that pain and discomfort are normal. Not everyone will fight for a diagnosis."
via Tech News Digest
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