Endometriosis: ‘I’d be vomiting and passing out with the pain but doctors said I was just attention seeking’
Noelle Carew was 14 when her periods began to cause her agonising pain. Lasting up to two weeks, the arrival of her period would feature a stream of intense cramps and heavy bleeding often causing her to vomit with pain and regularly pass out.
Noelle’s mother Margaret took her to the family GP in Tipperary where she was assured that her teenager was just suffering from bad period pain. However, watching what her daughter was going through each month Margaret knew that there was a much deeper problem unrecognised by her doctor.
“Each month when I got my period it was always two or three days out of school, bleeding heavy, in intense pain where I would literally be rolling around the bed begging my mother or father to help me,” said Noelle.
Frustrated with the situation and sick of seeing her child in such distress each month, Noelle’s mother sought a second opinion and brought the teenager to another GP.
Having met an Endometriosis sufferer at work, Margaret suggested that perhaps this is what Noelle had but the idea was shot down by the doctor who suggested that Noelle was over-exaggerating her symptoms.
“When we sought a second opinion the doctor told me I was attention seeking and asked my mother if there was something going on at home that would have me act out in this way.
“I’ve had doctors tell me I was purposely not relaxing my muscles to make the pain worse, that I was faking it and making up how painful my periods were,” said Noelle.
Eventually after years of suffering Noelle, now 37, booked an appointment with a gynaecologist who believed with almost certainty that she had Endometriosis. Noelle underwent a laparoscopy and was diagnosed with stage 4 Endometriosis.
“Finally at the age of 18 someone believed me and we also had a name for this thing that had taken over my life,” said Noelle.
Endometriosis is a painful disorder in which the tissue that normally grows inside a woman’s uterus grows outside the womb. One in ten women in Ireland suffers from the disorder in varying degrees but painful menstruation, pelvic pain, painful intercourse and infertility are the “classic” symptoms, according to the Endometriosis Association of Ireland.
For Noelle, the disorder has deeply impacted almost every decision she has made since her early teens.
“I used to be very sporty and loved camogie. I even played on the boys’ team but I had to give all of that up because I was so embarrassed in the changing rooms and was too unwell to play a lot of the time,” said Noelle.
“I could never do normal things and I felt like I could not be myself. I could never stay away over with friends or go away on trips because I often had to come home.
“I never had boyfriends in my twenties. It was just too embarrassing to have to say to men ‘I have really heavy periods and sex can be really painful for me’.
“Endometriosis has affected every aspect of my life even some of my friendships. Sometimes I felt so isolated. None of my friends had pains with their periods so they didn’t understand. And nobody would ever talk to me about it because they were too embarrassed,” said Noelle.
Noelle has a degree in Childhood and Education but can no longer work in the area as it is too strenuous.
“I love children and have a degree in Childhood and Education but after my big surgery, I wasn’t able to do that anymore.
“I retrained and studied secretarial business studies but right now I’m not working because I’m not able to sit down for long periods of time as I have wicked back pain and often feel nauseous,” she said.
Since her diagnosis almost 20 years ago, Noelle, from Co. Tipperary, has been through 13 surgeries all of which were related to Endometriosis. Doctors placed Noelle into pseudo-menopause at several points throughout her teens, twenties and thirties with drugs like Danazol, in attempts to relieve her debilitating symptoms which played havoc with her emotions especially at defining points like during university.
In 2008 Noelle met her husband Shane and quickly fell in love. The pair were engaged within seven months and decided to try for a baby soon afterwards.
“From when I was diagnosed, my doctors used to always ask me if I had a boyfriend because with Endometriosis it’s best to try and begin a family as soon as possible.
“When I met my husband it took me a while to be 100 percent honest with him after two or three months we had fallen in love and Endometriosis just became something that was part of our lives.”
The couple have been trying to start a family for six years but Noelle’s Endometriosis has made their attempts so much more difficult.
“Shane and I have been through two rounds of IUI (Intrauterine Insemination) and have been through three IVF cycles.”
“We had our first round of IUI treatment in 2009 but it was unsuccessful. So we tried another cycle but during an ultra sound a large cyst was found on my left ovary so I had another surgery to remove this and remove some more adhesions.
After this surgery Noelle fell pregnant naturally but unfortunately she miscarried at twelve weeks.
“We were devastated. I felt like this couldn’t be happening to me after all I had been through it seemed so unfair,” she said.
Noelle fell pregnant once again after a second round of IVF but tragically began to bleed after five weeks and miscarried.
Noelle had both of her fallopian tubes removed in January 2014 as it was discovered that they were filling with a fluid called hydrosalpinx, which may have been contributing to her miscarriages.
For a third time, she fell pregnant but miscarried again in April 2014.
“All I’ve ever wanted was to be a mother. I have an appointment with my doctor in Galway this March where we will discuss whether or not we should try IVF again or if it is time to look at other options available to us,” said Noelle.
As well as her loving husband and family, Noelle has found a great support from a Facebook group where she has communicated with other women who are going through the same thing.
“I joined the Endometriosis Association of Ireland and got onto their Facebook group and started chatting to women who are going through the same thing as I am.
“It is such a lovely thing to know that you aren’t alone in this and a lot of people don’t understand when they don’t have Endometriosis.”
“I feel really passionately about raising awareness.
“Since I was diagnosed with Endometriosis I have suffered with depression and felt alone. My advice to any woman who has the symptoms of Endometriosis is to remember there is help out there. Trust what your body tells you. Don’t ever give up. If your doctor isn’t helpful find another one.
“Endometriosis is such an awful, awful disease that has affected my life in so many ways and affects so many women. I’m so fortunate to have always had such great support from my mum. She is my rock. By doing this article if I can help just one girl it will be worth it because you are not alone,” said Noelle.
For more information and support visit www.endometriosis.ie