Keeled over in the London Underground on her way to work, Morag Smith was asked by a stranger if she was okay. The 27-year-old had just moved to the capital with a new job working for a charity and had been menstrually bleeding every day for weeks - which ended up being for 11 months straight - and was in extreme pain.
"I remember being like 'No' and this is awful and I don't know what I'm doing to myself. This cannot be the rest of my life," Morag remembers. She'd dealt with heavy periods as soon as she started them at 16, which saw her miss school and vomit up to four times a day over the excruciating cramps.
Morag, originally from Scotland, bled for 10-14 days each month and would often leak through her clothes up until she had the hormonal coil fitted in a bid to stop them - which then caused it to turn into one year-long period. She describes how it was like having to care for a baby; not being able to leave the house without her supplies.
"I had to carry extra pants, extra tights, an emergency £20 so I could go to Primark and buy jeans in case," she lists. "I had so many extra things to carry and prepare for.
"I had wet through my clothes a couple of times. Then I started to be like 'Oh my God, it can happen, it does happen' so I was causing extra worry for myself, always thinking, 'Has it happened?'"
Doctors told her it was just something she had to deal with and that she was one of the unlucky ones, she claims. They put her on the contraceptive pill in the hope it would lighten the blood flow and prescribed her anti-nausea medication so she could get through her school exams.
Having always been on the slender side, Morag was underweight, which doctors credited as a contributing factor for her horrific periods and without giving a hard diagnosis, assured they would get better with time and age.
Once she hit Glasgow University to study events management, doctors decided she had been on the pill for far too long, she says, and recommended she came off it, which then caused her regular periods to fluctuate.
It was a lonely time for the student because as well as not knowing why it was happening to her, she didn't know anyone else going through it.
"My family and friends were brilliant and understood if I wasn't feeling well and had to cancel. At the same time, most women understand your period is a nightmare and it can be quite awful at times, but not to the extent I was experiencing," she says.
"It was really difficult hearing doctors say it's just one of those things where I have to learn to live with it".
When she graduated at 21, she started an internship before her full-time job.
Her problems persisted, and she had to take two weeks off.
But it was when she was apologising to a colleague for missing work she realised what could be wrong with her - which led to her eventual diagnosis.
"I was chatting to one of the women and explained that my period was a nightmare and she's like, 'Don't ever apologise - I have Endometriosis and I really appreciate it. I had to have surgery, take whatever time you need," Morag recalls.
"And I was like, 'Oh, if you don't mind me asking, what is that?'
"She explained and it was exactly what I'd been dealing with for the last six years. So I thought I need to remember that name and need to research it."
She adds: "It's really hard to not be resentful of that first GP I went to at 16. It was brushed under, 'Here is the pill you'll be fine.'
"Fair enough if they didn't know. 10 or 11 years ago, nobody really talked about it. Nobody really talked about women's gynae health.
"But that eight-year period of my life could have been hugely different".
Morag went back to her doctor's surgery and saw a new GP, who agreed it could be Endometriosis but was clear that the only way to determine if she had it would be with surgery.
They ruled out ovarian cancer with an ultrasound and recommended Morag to have the hormonal coil fitted as the first step in treatment as it can stop periods and therefore symptoms altogether.
But a week or so after it was fitted, she didn't stop bleeding.
Whilst waiting for her referral to see a specialist, she started her new job in London in June 2018 and was worried about how ill she was getting.
"In Glasgow, the sick pay was different and I lost about £400 a month because I was off so much and then moving to London and getting this job, I had to be in the office every day," Morag explains.
"It was a nightmare for 11 months. I bled every day - I was always on a period.
"They were heavy; I got anaemic; I lost quite a lot of weight that I didn't want to lose really; I was so chronically tired; the pain was severe.
"And I had to have heat pads on my belly every day to the point where there were burns."
Despite being confident she was on a path to being helped, in December of 2018, at her appointment that she had waited months for, the gynaecologist told her she didn't have Endometriosis.
"She said I had a very brave GP in Glasgow that diagnosed me and said it was just one of those things. 'It sucks to be me.'
"She did an exam and said, 'If you had Endo your womb would be a lot harder because it would be covered in lesions and yours isn't, it's a bit like a stale fruitcake, so, take that as a good thing'.
"For the best part of 18 months I thought, 'Okay, I have an answer.' And then in one 12-minute appointment, I had that taken away from me and she's just gone, 'Get over it' basically."
By the time of this appointment and being denied a diagnosis, she had had the coil for six months, which is how long it usually takes to settle, she was told, so she kept it in.
And she was working for Breast Cancer Care, with a role in empowering women.
She was telling women to be heard, to stand up for themselves, and to go back for a second opinion if they didn't agree or feel comfortable with their doctor.
Morag felt like a hypocrite.
"I was telling women to do that and I wasn't doing it," she adds.
"I thought even if it isn't Endo, I deserve an answer because this isn't normal. It's not my normal. It's not anyone else's normal that I know. So I asked for a second opinion."
She went back to the same hospital clinic in London to see a new gynae doctor in April 2019.
By then, she had done more research, coming across the charity Endometriosis UK and had heard about a special unit at St Mary's Hospital.
The charity events worker, who now works for The Kensington and Chelsea Foundation, was determined to not leave the room until she had a referral.
Her new specialist refuted the latest opinion, adding: "No, it's Endometriosis 100 per cent".
Morag needed surgery to prove it, and underwent a Laparoscopic procedure in July 2019.
They found tissue similar to the lining of the womb growing in other places, which was lasered, and she received a formal Endometriosis diagnosis the following month.
"It was life-changing," she affirms.
"It felt like it was like finally over."
Morag, who chose to keep the hormonal coil after she finally stopped bleeding with it just before the surgery, now only gets a period every six months, with limited pain, whilst they are a lot lighter.
"I can live a normal life for the first time in eight years," she adds.
"I'm not dictated by my period anymore - had I not had the surgery, it's impossible to say where I'd be now.
"I feel I'm no longer worried about my body betraying me."
If it does get worse again, she feels confident she will be taken seriously by medical professionals due to the surgery and having a label on her condition.
And amid Gynaecological Cancer Awareness Month this September, she encourages others who are experiencing abnormal gynae issues to persevere with answers.
"It's possibly the hardest thing you'll have to do is to keep going," Morag admits, who advises those struggling to keep a symptoms diary, which she hails as one of the best things she did through the process and asked doctors to add it to her medical notes.
"It's really hard to go up against a medical professional. But there are some incredible people in the NHS.
"Unfortunately it takes a lot of time sometimes and a lot of resilience to stand up for yourself and say, 'No, you need to listen'.
"Once I got to the unit, I felt so heard and seen, I felt like there was a plan.
"Just keep going. It shouldn’t be this hard, but we know our bodies and there is never a better advocate for our bodies than ourselves."
New research shows an 18 per cent decrease in patients reporting abnormal gynaecological bleeding since before Covid, according to LPD electronic medical record data, and the trend is also seen with patients reporting pain, lumps, or irritation (including on the vulva, vagina and labia), with a 12 per cent decrease in patients reporting these symptoms since before the pandemic.
Meanwhile, one in four people have felt not listened to in a gynae health appointment, according to a YouGov survey by charity The Eve Appeal. This Gynaecological Cancer Awareness Month, they're working in partnership with pharmaceutical company GSK with 'Be Gyane Aware' - a campaign which aims to raise awareness of gynaecological health to help people understand what is normal for them and to feel confident visiting their doctor for advice if they have any worries.
Athena Lamnisos, chief executive of The Eve Appeal, comments: "While efforts are being made to improve women's health, this medical record data shows that many women and people with gynae organs are not visiting their GP when they experience 'red flag' gynae symptoms.
"It is so important for people to feel confident to visit their GP, knowing that they will be listened to, and any embarrassment or nervousness can be overcome with the right support.
"We hope these Be Gynae Aware discussion guides will help people prepare for their appointments and give healthcare teams some helpful suggestions too."
Dr Hilary Jones MBE, GP who is supporting the campaign, adds: "I want to reassure anyone with a gynae concern that healthcare professionals are here to help. No topic is off limits, regardless of the gender of the GP you are speaking to – trust me, we have heard and seen it all before!
"As soon as you have a concern, no matter how small you think it might be, please make an appointment with your GP. Don't delay; the earlier we see you, the better we will be able to help you if something isn't right."
For more information and to read the full discussion guides and checklists, head to https://eveappeal.org.uk/news-awareness/be-gynae-aware/
Do you have a health story you'd like to share? Please get in touch at saffron.otter@reachplc.com
