Stuck in her bed throwing up and in unbearable pain, Nadine Lewis knew something was wrong.
She was only 14 when she started menstruating, but little did she know she would have for the next 20 years.
The pain gradually got worse over time and Nadine also had hot flashes, seizures and nightmares.
After seeing her GP, Nadine said she was told it was just period pain.
Speaking to The Sun, the 33-year-old said following 12 years of pain she was finally able to get some answers when a specialist diagnosed her with endometriosis.
Throughout her battle with the disease, Nadine says every part of her body has been affected – with the disease making it difficult for Nadine to start her own family.
While most people associate endometriosis with painful periods, Nadine said her condition got so bad it actually spread to her lungs.
Five years following Nadine’s initial diagnosis in 2007, she was diagnosed with endometriosis in 2012, meaning the disease had spread to her lungs.
She experienced respiratory symptoms with this condition and had to empty her lungs of fluid.
“I mightn’t do anything on my own, and it turned out that I had a bowel obstruction and my lung had also collapsed,” she says.
“I had to remove over a liter of fluid, and it was major surgery because they had to cut my stomach and I ended up having a colostomy bag for a year. »
Nadine spoke as part of Endometriosis Awareness Week, where she shares her story to help others struggling with this debilitating disease.
One in 10 women worldwide suffer from endometriosis, but despite the severity of the disease, it takes an average of eight years to diagnose.
Common symptoms include pain during intercourse, heavy periods, infertility, and excessive menstrual cramps.
“I felt trapped in my body, it is constantly attacked,” says Nadine.
“I stayed in bed for four or five days in a row while I was in pain.
“My GP told me it was just menstrual pain and I felt like I wasn’t taken seriously. »
The pain continued, and in 2007 Nadine’s parents decided enough was enough.
Nadine, from London, said it wasn’t until her father went to the doctor with her when she was 20 and asked him to refer her to a specialist that she felt finally going in the right direction.
“I just had a laparoscopy and I was frustrated because it was taking 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 an endolectomy even though I was diagnosed with stage 4 endometriosis.”
It took Nadine, who was working as a professional counsellor, another seven years to be diagnosed with endometriosis.
This is a rare condition that occurs when patches of endometriosis develop in or around the lungs.
It can cause shortness of breath, chest pain, coughing, and in some cases collapsed lungs.
Treatment for the disease includes drugs that suppress female reproductive hormones and surgery.
“I’ve had countless A&E admissions, investigations, surgeries and been medically gassed.
“I had three diagnostic laparoscopies without endometrial ablation,” she says.
“The endometrium has affected my mental health, fertility, gut and respiratory health.
“No one should go through this. It shouldn’t take that long to be taken seriously. »
Nadine tells her story because she wants to give a voice to people with endometriosis who are struggling to get treatment.
Endo propagation
In 2010, Nadine said she had another surgery at a private hospital and didn’t have endometriosis following that either.
When she asked for a follow up, she was told that the surgeon who performed the keyhole surgery had already 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 had collapsed, which meant she had to put on a colostomy bag.
Nadine reversed the procedure a year later, but once more no endometriosis was removed.
“I’ve spent the past eight years managing my condition as best I might.
How to see your GP if you think you have endometriosis
It can be difficult to keep track of all the problems with endometriosis, Dr. Datta said. Here are his top tips on how to deal with the problem with your GP.
Keep notes: Note when you feel pain and when it occurs in relation to your period. Specifically, note when you have symptoms related to your period, if they get worse, and how they affect your daily activities.
Ask a gynecologist: Asking for a referral to a gynecologist can help you explore your symptoms further. From there you can order an ultrasound and with that information you can discuss the risks and benefits of the medications and the process.
Treat the symptoms: To avoid unnecessary suffering, try treating your symptoms with simple measures such as heat, light exercise, pain relief, or hormonal medications, before considering more invasive options such as surgery.
Watch your diet: Fish oil and vitamin B12 supplements can help relieve pain associated with endometriosis. A healthy, balanced lifestyle with regular sleep patterns can also affect your symptoms.
Consider pregnancy: If you are planning a pregnancy and you suffer from endometriosis, consult your gynecologist as soon as possible. Start taking pregnancy supplements three months before you want to conceive and make sure you have regular sex when trying to conceive. Most people have no problems conceiving, but it’s worth seeking expert help early on.
“I sometimes see a GP and I also go to the endometriosis center every six months.
“The specialists there understand my condition but do not want me to come back.
“I’ve had Zoladex injections for two and a half years, which put me into early menopause,” she says.
As a result, Nadine also suffers from hot flashes, mood swings and depression.
“Endometriosis is a whole body disease for me, in the early years it was just abdominal pain and the inability to urinate properly, but now it has affected every part of my life,” says- she.
Nadine wants to be a mother and in 2017 started IVF treatment, which experts say would be the best option for her.
Nadine’s journey has been difficult.
“When I went to IVF, it wasn’t really designed for someone with endometriosis and we had a lot of relapses,” she says.
Unfortunately, Nadine had an ectopic pregnancy.
The NHS says an ectopic pregnancy occurs when a fertilized egg implants outside the uterus, usually in one of the fallopian tubes.
The fallopian tubes are the tubes that connect the ovaries to the uterus and if an egg attaches to them, it will not develop into a baby and your health may be at risk if the pregnancy continues.
“It was a huge shock for me. I might see the fetus and the heartbeat, but they weren’t in the right place and it was life-threatening,” says Nadine.
In 2018, she had to have her right fallopian tube removed and was told that she might also have to have one of her ovaries removed due to the effect of endometriosis.
It was discovered that Nadine did indeed have endometriosis in her fallopian tubes and needed further treatment, but her body was struggling to cope.
In 2019, Nadine’s symptoms of endometriosis surfaced once more, and specialists discovered that the endometriosis had spread to her diaphragm and lungs and she needed to undergo further surgery to fix it. his diaphragm in December.
As of March 2020, her symptoms have finally started to ease and it’s getting easier for her to manage.
In November 2021, Nadine had a third egg collection which was successful and she is now seeking surrogacy.
However, since December, Nadine’s endometriosis has worsened once more and she is now waiting to see her endometriosis center to discuss treatment options.
Long trip
Nadine is still struggling with endometriosis, although it’s not as bad as it used to be.
“If there are young men reading my story and they feel they are experiencing the symptoms they are experiencing, then I just want them to know that their pain is real and valid,” she says.
“Don’t give up, everything you encounter matters.
“See another GP, get a partner or parent to stand up for you if you don’t feel capable.
“I had countless admissions to A&E and suffered so much it was unbearable.
“Endometriosis caused bowel obstruction, collapsed lungs and affected my fertility.
“I’ve been on my IVF journey for over four years now, I’ve had two rounds of eggs, seven embryo transfers and one ectopic pregnancy, all due to endometriosis. »
Endo normalization
Due to awaiting a diagnosis, women’s wellness brand INTIMINA has launched a campaign to increase the visibility of menstrual health around the world, normalize conversations regarding menstrual health, fight stigma and prejudice and awareness of conditions such as endometriosis.
United Kingdom Intimena Dr Shri Datta, an expert gynecologist, said: “Medical professionals may assume periods of pain are normal, if they are unclear as to their severity and whether pain relief is needed.
Also, it can be particularly difficult to screen for endometriosis in teenage girls because the results are not specific and the disease appears differently from person to person.
As such, it may take longer to refer people to the appropriate specialist for further examination and treatment.
“From the patient’s perspective, it can also be uncomfortable to take that first step and talk to a doctor regarding issues such as pain during sex or difficulty describing your symptoms. »
Datta continued, “The reasons behind [diagnosis] The backlog is widespread, but nonetheless, every step must be taken to reduce the wait time for people with endometriosis, and education and awareness are key to commitment to make this happen.
This story originally appeared the sun It is reproduced here with permission.
