By Rebecca Crockett
Coming home on a train from Leeds after visiting some friends, Ashleigh Russell was suddenly gripped with pain. “I was throwing up constantly, I couldn’t breathe, and I had a fever. It got to the point where I was in so much pain that I had to call an ambulance,” she said.
At 29 years old, she had been the picture of health. As a police link officer for the deaf and a national-level dodgeball player, becoming hospitalised so suddenly was a complete shock.
Russell said: “I thought, surely this is a red flag that somebody who otherwise is perfectly healthy is complaining about problems that they’ve never experienced before. But doctors just didn’t see it that way.”
After three days in the hospital, Russell was sent home without a scan and told it had been a simple case of gastroenteritis, but Russell was confused. None of her friends had experienced the same symptoms, and a month later, she was still suffering from painful bloating.
She was told she just had bad periods, IBS, or perhaps lactose intolerance before finally receiving the scan she’d begged for: “I think the doctor got so fed up seeing me that I ended up just getting a referral. That’s when they found I had a dermoid cyst on my left ovary.”
A life spent in the doctor’s waiting room
The NHS recommends that anyone aged 40 and above should go for health check-ups at least every five years. Aside from the odd broken bone or a particularly stubborn cold, the average man can go half his life without needing to visit a doctor.
In comparison, women are regularly in their doctor’s waiting room as soon as they become sexually active. The responsibility of contraception is quickly placed on their shoulders, as is the ordeal of getting pap smears every three years.
Although the average woman lives longer than the average man, multiple studies have shown that women spend a greater portion of their lives unwell.
Yet, stories of unsympathetic doctors, uninformed consent, and a disregard for pain are becoming more and more common.
Alex Hardy, a 22-year-old psychology student originally from Spain, began experiencing endometriosis symptoms at 12 years old.
Endometriosis is a chronic condition in which the womb lining forms growths that can attach to other organs. Hardy said, “I was fainting and throwing up from the pain. I got anaemia because of how much I bled, to the point that I had to buy adult diapers.”
By 14, the pain was debilitating and forced her to seek the advice of her doctor: “I remember this one time I fainted in a bathtub and the door was closed. My mom freaked out. I then went to the gynaecologist for the first time ever.”
Endometriosis adhesions cannot be detected on ultrasounds; however, Hardy’s condition was so advanced that they could see the damage left behind. She was unofficially diagnosed with suspected stage two endometriosis and prescribed Desogestrel, a pill that induces a mini menopause.
While it helped to ease her symptoms for five years, Hardy said she felt unprepared for the host of new symptoms that came with the mini menopause.
The medical obsession with fertility
“They didn’t tell me the name of the pill; they didn’t tell me what it did. I just found out a couple of months ago how it reduces oestrogen levels. They didn’t tell me how it would affect my body or the side effects. They only wanted to talk about how it would affect the fertility that I didn’t really have.”
Hardy, who is open about not wanting children, continued to go for check-ups and deal with her condition, but the issue of fertility became a sticking point with doctors.
“I’ve always told my doctors that if they have to take out an organ to make me feel less pain or to feel better, I don’t care how it affects my fertility, do it, but they’re always like, ‘Oh, you’re going to change your mind’.”
Russell had a similar experience. After finding a dermoid cyst the size of a grapefruit on her left ovary, she had it removed. At the time, she asked if she could be sterilised to lower the risk of any more issues, but her request was denied.
“I’ve never wanted children, but they refused to do it because I haven’t got kids already. Why can’t I have a hysterectomy? Why not get sterilised to help stop some of these problems that are going on? It’s problems with my reproductive system that I don’t even want or need.”
The medical system has always been obsessed with when and how a woman chooses to procreate. In the 16th century, doctors would be called to check a woman for witch’s marks if she didn’t have children, but in modern times, there is another extreme. Feeling pressured into birth control.
Sarah*, a 22-year-old English student at the University of Stirling, was forcibly put on hormonal contraception when her stepmother discovered she was sexually active at 16.
Sarah said the experience has led her to distrust medical professionals, and she now fears what the effects will mean for her fertility in the future: “I get called a hippy all the time about my opinions on these things. But I genuinely don’t think a lot of contraception has been around long enough to know what impact it’s going to have hormonally and fertility-wise.”
At the time, Sarah says she felt “cornered” by her doctor and her stepmother into getting the Minerva coil. As one of the most popular brands of hormonal contraception, the Minerva coil releases a low amount of progesterone into the womb, so it is often preferred by medical professionals.
But it was a decision Sarah feels was made for her rather than with her informed consent.
“I feel like the worst part was I had to go get fitted by myself. It’s a very intrusive procedure but they said it wouldn’t hurt. Such a lie, like it hurts. They’re clamping something to your inside. That’s never going to be nice.”
The dismissal of women’s pain
The experience has had lasting consequences for Sarah, who now struggles with medical trauma. Almost six years after the procedure, Sarah wants her coil taken out but doesn’t want to relive her first experience.
“I actively want to have kids at some point. It’s just a very scary thought that I have a little piece of metal stuck to the inside of my body, and I know I need it out. I’m so scared to go and get it out. I’m scared to sit in that chair and experience the same thing I did when I was 16.”
It’s a valid concern; women everywhere struggle with being believed about the pain they experience. Following Russell’s surgery to remove the dermoid cyst, she enjoyed five months of good health. She returned to work and went back to the gym. That was until she began feeling a familiar pain. She returned to her GP but ran into problems when trying to describe what she was feeling.
Russell said: “He wasn’t a GP who was a regular to the practice, but I knew the second I walked in that he was not going to take me seriously. He was not bothered at all.
“I explained that I had a dermoid cyst removed and that I thought it was something similar because I was getting very similar pain, but just on the other side. And he was like, ‘No, it’s not going to be that.’
“I just don’t know what you want me to do’ – those were his exact words. I said I want you to refer me. He begrudgingly put the referral in.”
Russell raises a recurring problem in women’s healthcare: the dismissal of pain. It’s hard to measure something so subjective, but women seem to be repeatedly told that their pain level isn’t that bad or simply doesn’t exist.
When Vicky*, 40, had her son Tom* in December 2013 at Forth Valley Royal Hospital in Stirling, she had to be induced as she was two weeks overdue. But when she began having irregular contractions, she was written off by her nurses.
She said, “I kept buzzing the nurse every half hour, telling her that I thought something didn’t feel right. She was coming in and getting really annoyed with me. It felt like it was an inconvenience for me to be there.”
Eventually, after requesting to be examined properly, the nurse put a heart monitor on her and the baby. That’s when the nurse discovered Tom’s heartbeat was going down rapidly.
“She hit an emergency button. One nurse ripped the necklace from me, ripped the earrings from my ears, stuck a cannula in my arm and said you’re going straight to theatre, we need to get your baby out, there’s a problem.”
Tom had had an allergic reaction to the pessary, a small device used to help prepare the cervix for labour. Thankfully, a midwife was able to flush this out of Vicky’s system instead of having an emergency c-section, and she was able to be taken to the labour ward.
But this wasn’t the end of Vicky’s problems. During the night, she started having contractions, but the night shift flat-out dismissed her pain, even denying her requests for pain relief.
“By this point, I was getting contractions every five minutes, but I was shattered. I asked the nurse, is there anything you can give me to even take the pain off a wee bit? And she was like, ‘No, there’s nothing, there’s no point giving you anything just now because when it really ramps up, that’s when you’ll need stuff.’
“I’m sitting there, and I was crying my eyes out because you don’t know what to say.”
When Vicky finally succumbed to sleep, her mother noticed she began pushing. Concerned, she called a nurse for her daughter to be examined.
“She came back and checked my chart, saying, ‘you’re not in active labour, I don’t know what you’re talking about.’ Then she examined me, and Luke’s head was coming out.
“She hit the emergency button again, and this room filled with like 20 nurses, midwives, doctors, students, the lot. Everybody was in. She had to start manually getting me to 10 centimetres. He was losing oxygen, and his heartbeat was going down again. They had to put oxygen on me because I was passing out.”
Vicky describes the traumatic experience of a doctor having to help her deliver her son using a ventouse, a suction-like device that is attached to the baby’s head.
“When he was coming out, I had to push, so she was pulling as I was pushing, and the thing snapped. She was covered head to toe in blood, and I was covered head to toe in blood. I think my mum nearly collapsed because she thought she was going to lose one of us.”
At the time, Vicky was asked whether she would like to make a complaint against the nurses who ignored her pleas for help, but she declined, saying she was just glad it hadn’t gotten worse. But the fear of what-ifs still haunts her today.
“I think about it, and it still upsets me because if it had gone differently, how bad could it have been? If my mum hadn’t been there, would I have had him in that bed? Would he have gotten stuck? Would he have choked? Would something have happened to me? I think at one point there was going to be a decision made of who is surviving this?”
Vicky did not believe in her own body. She talked about how she felt something was wrong, but because it didn’t match the average experience, it was shrugged off.
Left in the dark
Russell spoke about this after visiting her GP a second time looking for answers about her condition, She said: “I’m not overreacting. I’m not hysterical. I haven’t got a low pain threshold. Why are you not believing in my pain scale? Just because I’m not sitting here wailing doesn’t mean that I’m not in pain; people show pain differently. I’m telling you, I am. So, you should believe me.”
Before she even received her referral, Russell was taken to the hospital after experiencing pain at work; here, her suspicions were confirmed. She had another cyst on her left ovary, an enlarged right ovary, and a cyst rupture.
“It was nice to have a doctor at the hospital come out and say I was right,” she said.
“I don’t think anybody really prepares you for how traumatic it is when you have something that could potentially be life-threatening. I do think that as a woman, your pain is dismissed far easier than if a man went. Because you are a woman, and it’s almost somewhat expected. You’re just kind of left to deal with it.”
The psychological effects of being “left to deal with it” are just as important but are often ignored. Particularly for women past their reproductive peak.
Caroline Spalding, co-founder of Menopause Warriors, was 42 when she says her personality completely changed and she began to experience low moods, “I got to see that my anger was so severe that I could have been a hit woman. You could have paid me a fortune, and I wouldn’t have cared because my anger was so bad. It started to scare me.”
Realising there was a problem, she began looking for help: “I went to my GP and, this is how I was introduced to the menopause. I went and explained my situation with anger, depression, and everything. The words I got back were, ‘Well Caroline, you’re 45, I think you’re in menopause. There is nothing I can do for you, and I can’t give you Hormone Replacement Therapy.’”
“I walked out of that surgery that day, at 45 years old, absolutely devastated.”
Menopause and depression
Menopause is when a woman permanently stops having periods, and the levels of oestrogen and progesterone in the system go into decline. It’s this drop in hormone levels which can bring symptoms like mood swings, hot flashes, vaginal dryness, and a loss of identity.
Treatment can take the form of Hormone Replacement Therapy (HRT), which works by replacing the naturally decreasing hormones like oestrogen and combining it with progesterone. However, studies in the 2000s led people to believe that there was a link between breast cancer and HRT. Recent evidence has shown this link was overstated, yet the fear remains for patients and doctors.
Testosterone has also been shown to help restore lowered libidos, but as of yet, the hormone is not licenced for use by Women in the UK. The fact is, every person born with a uterus will be touched by the effects of menopause, yet very little is offered to those crippled by symptoms.
Spalding said, “I couldn’t find any joy in anything I did. That’s never been me. I’ve always been quite an upbeat person. So, for me to get into that slump was quite a big shock. There was nowhere to turn. You had no signposting, nothing at that time to explain to us what was going on.”
The drastic change in Spalding’s mood was so bad that it became a danger to her life. “I came home one night in the car, and it had just been a normal day. The only way I can describe it was like someone had unplugged me and took all the happy thoughts away and bombarded me with everybody’s grief and sadness. I wanted to drive the car off in that split second.”
Eventually, Spalding came to realise that her depression was due to a severe drop in her hormone levels. After finding support and discovering ways to manage her symptoms, the original anger disappeared, and she was left with righteous fury.
“What makes me angry is that it was a hormonal dip that caused that emotion for me. If we had the information readily available, just think of how many women could be saved because they are aware of menopause, HRT, and other resources.” Spalding said.
“What is happening to me?”
‘What is happening to me?’ At some point, every one of these women has asked themselves this question. ‘Why can I no longer do the things I enjoy?’, ‘Why do I hurt?’, ‘Why can’t I get better?’ But instead of getting the answers they deserve from the institution that was set up to care, they are being left in the dark.
Women in this country, and around the world, are having their health thrown into jeopardy because of historic and ingrained misogyny in the healthcare system. It’s in plain sight for all the world to see. You just have to listen to believe.
*Some names have been changed to protect individuals’ identities.
This article is part of the series Fobbed Off and Female: A series on medical misogyny. To read more inspiring stories of everyday women making a real difference in the world, be sure to check out the latest edition of Wempower magazine or listen to our podcast.
