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.
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.
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 liter 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 from 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 that happens when endometriosis patches grow on or around the lungs.
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 from 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 a 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.
How to approach your GP if you think you might have endometriosis
Dr. Datta said it can be difficult to keep track of all the issues that come with endometriosis. Here are her top tips on how you should approach the issue with your GP.
Keep a diary: Note down when you experience pain and when it comes on in relation to your period. Specifically, note down when you experience symptoms in relation to your periods, whether they are getting worse and how they affect your daily activities.
Ask for a gynecologist: Asking for a referral to a gynecologist might help you to further explore your symptoms. From there you can request an ultrasound and with this information, you can discuss the risks and benefits of medication and an operation.
Treat your symptoms: To avoid suffering unnecessarily, try and treat your symptoms with simple measures such as heat, gentle exercise, pain relief or hormonal medication, before considering more invasive options such as surgery.
Look at your diet: Fish oil supplements and Vitamin B12 can help endometriosis-associated pain. A healthy balanced lifestyle with regular sleep patterns may also influence your symptoms.
Think about pregnancy: If you’re thinking about getting pregnant and having endometriosis, consult a gynecologist early. Start taking pregnancy supplements three months before you wish to conceive and make sure you have sex regularly when trying to conceive. Most people have no problems conceiving, but it’s worth seeking expert help early.
“I sometimes see a GP and I also go to an endometriosis center 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 fertilized 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.
“It was a big shock for me. I could see the fetus 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 begun 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 center 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.”
NORMALIZE ENDO
Because of the diagnosis wait, female wellness brand INTIMINA launched a campaign to increase the visibility of menstrual wellbeing across the world, normalize conversations about menstrual health, tackle stigma and bias and raise awareness of conditions like endometriosis.
INTIMINA UK 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.
“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.”
This story originally appeared on The Sun and has been reproduced here with permission.