My ‘period pains’ and breathing problems turned out to be endometriosis that spread to my LUNGS

STUCK in her bed vomiting and struck down with unbearable pain, Nadine Lewis knew something wasn’t right.

She was just 14 years old when she started to struggle with her periods, but she had no idea they would plague her for the next 20 years.

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The pain gradually got worse over time and Nadine would also go on to suffer hot flushes, fits and nightmares.

After seeing her GP, Nadine says she was told it was just period pain.

Speaking to The Sun, the 33-year-old, says after 12 years of agony, she finally managed to get answers, when a specialist diagnosed endometriosis.

Throughout her battle with the condition, Nadine says that every part of her body has been impacted - with the condition also making it hard for Nadine to start a family of her own.

While most people associate endometriosis with painful periods, Nadine said her condition got so bad, that it actually meant it spread to her lungs.

Five years after Nadine's initial diagnosis in 2007, in 2012 she was diagnosed with thoracic endometriosis, meaning that the condition had spread to her lungs.

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She suffered breathing symptoms with the condition and had to have her lungs drained of fluid.

“I couldn’t do anything for myself, and it turned out that I had a bowel obstruction and my lung had also collapsed,” she says.

“I had to have over a litre of fluid removed, this was a major surgery where they had to cut into my abdomen and I ended up having a colostomy bag for a year.”

Speaking out as part of Endometriosis Awareness Week, Nadine is sharing her story to help others who are suffering with the debilitating condition.

One in 10 women worldwide have endometriosis, yet despite the seriousness of the disease, it takes on average eight years just to get a diagnosis. 

Common symptoms include pain during intercourse, heavy periods, infertility and excessive menstrual cramps.

“I felt trapped in my own body, it’s constantly under attack,” says Nadine.

“I’d be stuck in bed for four or five days at a time with pain.

“My male GP said it was just period pain and I felt as though I wasn’t being taken seriously.”

The pain continued and in 2007 Nadine’s parents decided enough was enough.

Nadine, from London said it was only when her dad went to the doctors with her at the age of 20, and demanded she be referred to a specialist, that she felt as though she was finally moving in the right direction.

“I was given a laparoscopy and I was just frustrated that it took so long,” she says.

“I wasn’t surprised though, I had to do a lot of my own research.

“I was too young to have the endo removed even though I'd been diagnosed with stage four endometriosis.”

It took Nadine, who worked as a careers consultant, another seven years to then be diagnosed with thoracic endometriosis.

This is a rare condition which happens when endometriosis patches grow on or around the lungs.

No one should have to go through this. It should not take this long to be taken seriously

Nadine Lewis

It can cause shortness of breath, chest pain, coughs, and in some cases a collapsed lung.

Treatment for the condition includes medications that suppress the female reproductive hormones and surgery.

“I have had countless A&E admissions, investigations and surgeries and been medically gaslighted. 

“I had three diagnostic laparoscopies with no endometriosis removed,” she says.

“Endometriosis has affected my mental health, fertility, bowel and respiratory health. 

“No one should have to go through this. It should not take this long to be taken seriously.”

Nadine is telling her story as she wants to give a voice to those who are suffering with endometriosis and who are struggling to get treatment.

ENDO SPREAD

In 2010 Nadine says she had another surgery in a private hospital and that no endometriosis was removed then either.

When she asked for a follow up, she was told the surgeon who had done the keyhole surgery had actually left.

By 2012 her endometriosis had gotten so bad that Nadine was “unable to get out of bed”.

She had a bowel obstruction and her lung collapsed, meaning she had to have colostomy bag.

Nadine had the procedure reversed a year later, but again didn’t have any endometriosis removed.

“I’ve spent the last eight years managing my condition the best I could.

“I sometimes see a GP and I also go to an endometriosis centre every six months.

“The specialists there understand my condition but aren’t keen for me to go under again.

“I’ve been having zoladex injections for two and a half years which have put me into early menopause,” she says.

As a result, Nadine is also struggling with hot flushes, mood swings and depression.

“Endometriosis is a whole body disease for me, in the early years it was just abdominal pain and not being able to urinate properly, but now it’s impacted every part of my life,” she says.

Nadine wants to be a mum and in 2017 started with IVF treatment, which she says the endometriosis experts claimed would be the best option for her.

It has been a tough journey that Nadine is still on.

“When I went for the IVF it wasn’t really tailored to someone with endometriosis and we’ve had so many setbacks,” she says.

Sadly Nadine experienced an ectopic pregnancy.

The NHS says that an ectopic pregnancy is when a fertilised egg implants itself outside of the womb, usually in one of the fallopian tubes.

Fallopian tubes are the tubes connecting the ovaries to the womb and if an egg gets stuck in them, it won't develop into a baby and your health may be at risk if the pregnancy continues.

Don't give up, everything you’re experiencing does matter

Nadine Lewis

“It was a big shock for me. I could see the foetus and the heartbeat but they were in the wrong place and it was potentially life threatening,” says Nadine.

In 2018 she had to have her right fallopian tube removed and was told she might also have to have one of her ovaries removed because of the impact of endometriosis.

It was discovered that Nadine actually had endometriosis in her fallopian tube and she had to have more treatment, but her body was struggling to cope.

In 2019 Nadine’s thoracic endometriosis symptoms reared their ugly head once more and specialists found the endometriosis had spread to her diaphragm, and her lungs and that December she had to have more surgery to repair her diaphragm.

Since March 2020 though, her symptoms have finally began to ease and were easier for her to manage.

In November 2021, Nadine did a third egg collection which was successful and she is now pursuing surrogacy.

However, since December Nadine’s endometriosis has worsened once more and she’s now waiting for a consultation with her endometriosis centre to discuss treatment options.

LONG JOURNEY 

Nadine is still battling with endometriosis, despite it not being as intense as it once was.

“If there are any young people that are reading my story and feel like they are the symptoms they are having, then I just want them to know their pain is real and valid,” she says.

“Don’t give up, everything you’re experiencing does matter.

“See a different GP, take a partner or a parent to advocate on your behalf if you don’t feel like you can.

“I had countless admissions to A&E and really suffered so much, it was unbearable.

“Endometriosis has caused me bowel obstructions, a collapsed lung and has impacted my fertility.

“I’ve been on my IVF journey for over four years now, I've had two egg collections, seven embryo transfers and one ectopic pregnancy, all because of endometriosis.” 

NORMALISE ENDO

Because of the diagnosis wait, female wellness brand to increase the visibility of menstrual wellbeing across the world, normalise conversations about menstrual health, tackle stigma and bias and raise awareness of conditions like endometriosis.

expert Gynaecologist Dr Shree Datta said: “Healthcare professionals may assume painful periods are normal, if they are unclear on its severity and whether pain relief is required. 

“What’s more, it can be especially difficult examining young teenagers for endometriosis as the findings are not specific and the disease presents differently from person-to-person. 

“As such, it may take longer to refer people to the correct specialist for further investigation and treatment. 

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“From a patient perspective it can also be uncomfortable taking that first step and speaking to a doctor about issues such as pain during sex - or challenging to describe the symptoms they have.”

Dr Datta continued: “The reasons behind the [diagnosis] delay are wide-ranging, but nevertheless, every possible action needs to be taken to drive down the wait time for people suffering with endometriosis, and education and awareness is vital to make a commitment to ensure this happens.”

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