Freja’s Adenomyosis Story
“I have this feeling that if the doctors stopped separating me and my body, they might get further quicker.”
Blinding period pain
Freja has suffered with heavy periods since her teens.
When she was eighteen, she developed an eating disorder, which she didn’t recover from until she was twenty-six. Menstrual irregularities are very often an accompanying complication in eating disorders (MacNeil, 2022). When Freja started to recover in her twenties, she noticed her periods getting heavier.
‘I assumed that was a normal part of my body healing. It felt like a good thing,’ she says.
Not long after her periods came back regularly, Freja was in the shower when she was struck with such a blinding pain that she fell over, hitting her head as she fell.
‘I was really shaken up because the pain was so bad, but I didn’t know where it was coming from,’ Freja says. ‘Strokes run in my family, so I assumed I was having a stroke.’
She rang her boyfriend and asked him to come home.
‘Where is the pain coming from?’ her boyfriend asked.
‘I don’t know,’ she told him.
He helped her into bed and called an ambulance. While Freja waited two hours for an ambulance she was screaming out in pain.
‘It was like you were in a fever dream,’ her boyfriend later recounted.
‘I kept passing out and coming to,’ Freja says, ‘I’d always had painful cramps, but this was beyond anything I’d experienced. I imagine labour might feel like that, it was indescribable.’
Finally, the paramedic arrived and carried out some tests including her blood pressure and a urine sample.
‘I don’t know what to tell you,’ he told Freja, ‘I think it’s just your period.’
‘This is not a period,’ Freja replied. ‘This is something else, I need you to call my GP.’
The paramedic called Freja’s GP, put them on loudspeaker, and asked for a medical history.
‘She has a history of mental health,’ the GP said, seemingly not aware that Freja could hear him.
‘This is not in my head,’ Freja shouted with frustration.
‘I’m sorry,’ the paramedic quickly said, taking the phone off loudspeaker. ‘I can give you some painkillers,’ he offered.
By this time, hours had passed, and the pain was beginning to subside.
‘We can take you to accident and emergency,’ the paramedic offered, ‘but you could be there for hours.’
By this point Freja was starting to question herself. Had she just imagined it? The pain is fading now, and the paramedic couldn’t find anything wrong, so maybe it was just in my head, Freja thought. She accepted the offer of painkillers, and the paramedic left her with her shaken-up boyfriend.
‘I had recently started taking antidepressants, which also make changes to your body. I was gaining weight, which was supposed to be positive, but my body hurt so much. It was all really confusing,’ she says. ‘And on top of it all, I was too embarrassed to tell anyone about the ambulance as I was convinced I’d called 999 for nothing.’
The period pain is becoming more painful
Each month became more painful, but she continued to deal with it.
‘Now these episodes are a regular occurrence, happening every month; however, back then they happened less often.’
Freja went to see her GP, who referred her as an outpatient for a transvaginal scan. This revealed she had fibroids, fluid in her pelvis, and cysts, for which she was prescribed mefenamic acid.
Attending the A&E became a regular occurrence. During these episodes, she would suffer from diarrhoea, vomiting, and pain up and down her legs and back, limiting her ability to walk. Every time she went to the A&E, she was told the same thing. They suspected endometriosis, cysts, and fluid in her pelvis.
‘One of these incidents happened while I was at work,’ she says. ‘I couldn’t stand up and had to call a taxi, but was still unable to make it home because the pain was so severe. Thankfully, I had a friend who lived between my house and my work. I stopped at the friend’s house where she let me lie down until I felt able to move again.’
During a transvaginal scan, adenomyosis was detected. Freja googled the disease and discovered: ‘With adenomyosis, endometrial tissue grows into the muscular wall of the womb, thickening it and distorting the blood vessels. This can create heavy, extended and very painful menstruation. It may also lead to pain during sex and is associated with fertility problems. (Fertility Academy, 2026). She also learned that in up to half of all cases, fertility will be a problem.
‘I rang my mum crying when I read what it could mean for my fertility,’ Freja says. ‘I want children and Mum said I needed to push for more answers, however, there was so much going on at the time. I was completing my PhD and had close friends in Palestine who I was concerned about due to the ongoing genocide. ‘
In Autumn 2024 the pain of Freja’s periods increased.
‘I was inconsolable,’ she says, ‘physically unwell in my body with unbearable pain, vomiting, diarrhoea, which caused me to lose the ability to walk again. The depression really intensified everything.’
No help with her excruciating periods
Freja and her partner decided they wanted to save for a house, so they moved in with Freja’s in-laws. After the move, the episodes continued to get worse.
‘But now I live in the middle of nowhere, so it’s not easy to get to a doctor,’ she says.
Freja contacted her GP via their online NHS portal as her excruciating periods have continued.
‘As the NHS is overrun the GP never considered me as an urgent case, which meant that in order to get an appointment, I had to call the GP every morning at 8 am to try and get an appointment.’
After a slurry of rejections, she gave up for a while.
‘I decided to try again a few months later, as I just couldn’t ignore the pain anymore, but still found no answers.’
A confirmed adenomyosis diagnosis
‘No one ever called me back,’ she says. ‘I was at a dead end and had no idea what to do. I eventually spoke to Majken (founder at Freja’s), who suggested I submit an official complaint, which I did. I finally got a call back where I felt like they were taking me seriously.’
Freja was eventually seen about her painful periods, after years of pursuing and asking and hospital visits.
‘My GP was amazing, and they conducted some blood tests and scans. They told me my ovaries were unmovable and static during the scan.’
She was also given a confirmed adenomyosis diagnosis and told she was low on testosterone. This was followed by more blood tests and urine samples, which were sent to a fertility clinic.
‘I was hoping for a laparoscopy so I could think about my options moving forward,’ Freja says. ‘However, my most recent scan left me really wobbly emotionally.’
She goes on to say, ‘I’m constantly fatigued due to the painful mid-cycle, and this is a progressive illness that won’t stop until menopause or choosing to have a hysterectomy. Having a baby might help, and I do want a baby, but that isn’t an appropriate answer for everyone.’
‘Also,’ she continues, ‘what if I try to have a baby and I’m not successful? It’s just not a solution. There isn’t enough research for this to be a sensible answer.’
‘I have this feeling that if the doctors stopped separating me and my body, they might get further quicker.’
A pregnancy or a hysterectomy?
‘It’s now been seven years since I first went to the doctor, and I’ve been given two possible routes. I can see a gynaecologist and get a laparoscopy right away, or I can go via the fertility clinic, which would mean running other tests before the laparoscopy,’ she says. ‘I obviously chose the first one as it’s a no-brainer.’
However, the doctor then informed Freja that, beyond the age of 35, people can’t access the fertility clinic via the NHS in her region of the UK.
‘If you’re thinking of having children, we need to get you in there now as you’re 33 and the process takes a while,’ the doctor told her.
Freja doesn’t feel her life is together enough yet to have a baby, however this language suggests her time is running out, and once she’s 35 she feels as though she’ll become a write off. Adding to the stress of this whole situation is this deadline she’s had imposed upon her:
‘I’m fed up with my body,’ Freja says. ‘I’ve been told to go on hormonal birth control as it’s one of the only things that can help with adenomyosis. This doesn’t make any sense, as I might want to get pregnant, as advised to do by medical professionals. The only other option is a hysterectomy.’
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