Years of debilitating pain, fertility issues, fighting to have their symptoms recognised – even being called “a drama queen” – women in Tayside lift the lid on what living with endometriosis means.
The shocking revelations of two women from a 500-strong support group give an insight into the struggles women face on a daily basis.
They tell us those with the condition often:
- Fight through years of pain to be diagnosed
- Are forced to make a choice between quality of life and having kids
- Struggle to be heard or believed about their symptoms
They’re both members of the Endometriosis UK Dundee Support group and are calling for more awareness so others can be supported earlier.
‘Treatment or a family’
Vicky Chapman, 33, from Arbroath, was diagnosed four years ago. She says: “I started my period at 11, so when I was diagnosed the endometriosis had been growing for 18 years.
“I don’t know how my fertility has been affected. Sadly, all too often you have to choose between being on treatment for endometriosis or trying for a family.
“For quality of life, at the moment, I’m choosing treatment.”
‘You can’t have a job when you’re curled up in a ball on the floor’
Natasha Braid, 29, from Fettercairn is also a member of the group. She’s tried several rounds of IVF and suffered miscarriage because of endometriosis.
After years of painfully heavy periods, cramping and nausea from the age of 11, she was given the combination pill only to be taken off aged 21 when she developed migraines.
She says: “Before I had an official diagnosis it was thought I had irritable bowel syndrome or Coeliac.
“I had one doctor tell me I was being a drama queen.
“But over the years it got to the point I was in pain 24/7. I wasn’t working – you can’t have a job when you’re curled up in a ball on the floor.”
‘I was riddled…so surgery was a relief’
A change of GP meant she finally felt heard and he referred her to a gynaecologist.
After an examination, Natasha was told she’d need to have a laparoscopy – an operation in which a camera is inserted into the pelvis via a small cut near the navel.
“They opened me up and found I was riddled with it. So they took away what they could to do biopsies but said I’d need a specialist to treat me as it was too complex.
“I was absolutely terrified but it was a relief to be getting it done and it was a success.
“They cleared away as much as possible and told me to try and fall pregnant as soon as I could because that was my best chance whilst there was so little of the endometriosis left.
“So I didn’t go onto any medication because I wanted to try for a baby.”
But starting a family has proved a challenge after diagnosis for Natasha.
“At my four month follow up, I’d started to experience pain again and they said there might be microscopic bits left and they’d never be able to remove every single bit.
Seven rounds of IVF
“Then, back in 2017, they referred me to the fertility clinic.
“I have been going ever since then and having treatment, but because I’m still on no medication to help with endometriosis it has really come back now.”
Natasha has now been through seven rounds of IVF and suffered two miscarriages, but carries on, despite being told she has few or no eggs left to collect.
She will need to have a donor egg implanted to have a baby.
“Hopefully it will be worth putting my body and myself through it.
“I feel it’s important to talk about what I’ve been through – although I’m young, my ability to have children has been massively impacted by endometriosis.
“It’s not talked about, I didn’t even know what a gynaecological condition was when I was younger.
“But I feel it should be taught in schools, so young woman don’t have to go through what I have and know it’s not OK to be in pain.”
‘You’re not alone’
It was having such valuable support that led Vicky to set up Endometriosis UK Dundee Support group in 2019. She’d had to travel hundreds of miles back and forward to Fife for peer support after her diagnosis.
“There’s nothing quite like being in a room with other people who just get it.
“The group has been going almost three years, had 33 meetings and offers a safe and supportive environment – no subject is off limits.
“We’ve almost 500 in the closed Facebook group covering the whole of Tayside and we are on Twitter and Instagram as well.
“But I don’t think that’s even near representative of the number of women living with the condition in the area.
Whilst awareness of #Endometriosis has certainly gotten better over the last few years, there's always room for improvement… right?!😊
Please feel free to RT🤞 pic.twitter.com/aU3feK9m9b
— Endometriosis UK Dundee Support Group (@EndoDundee) June 27, 2021
“It’s a common thing to hear members say they have been called things like a drama queen or not believed.
“I’ve been made to feel bad for asking for medication in the past.
“I’d say to any woman out there – source local support. You’re not alone and there’s no such thing as a silly question – don’t be afraid to reach out and ask for help.”
The group’s next support meeting is being held online on Wednesday September 22 from 6.30 pm until 8 pm.