For all her adult life Naomi Long, the Alliance Party leader, has lived with an often debilitating and severe form of the gynaecological condition called endometriosis.
Her periods were painful, long and heavy. She often felt unfit for work.
For 20-odd years she managed the pain with mixed success.
Long was told it was Irritable Bowel Syndrome, a potential food allergy and at times questioned whether she was just making a “mountain out of a molehill”. Perhaps she just had a lower pain intolerance than other women?
This month is Endometriosis Awareness Month and Long hopes to raise awareness of the condition but also tell women not to be embarrassed about talking openly about gynae issues.
“If your periods are so heavy and debilitating and you can’t go to work then that is not how it should be. It’s not just part of being a woman. It is potentially an indicator that something might be wrong.”
Long is calling for better education for kids in school on reproductive health. She would also like to see a specialist women’s clinic in Northern Ireland.
“With the best will in the world your GP sees dozens of people every day with very different complaints. They are not going to be a specialist in terms of gynae.”
Long collapsed “in a heap” while on holiday with her husband Michael. When she got home she was referred to a consultant.
After a series of tests she discovered she had a severe form of endometriosis.
The condition occurs when cells that normally line the womb are found elsewhere in the body such as on the ovaries or fallopian tubes, and around the womb near the bladder and/or bowel.
“I was one of those pupils who was regularly in sick bay and always having to take very strong ibuprofen and hug a hot water bottle,” Long explains.
At 16 years old she went to her GP worried it would affect her ability to study for her GCSE’s. Long was prescribed the pill and the symptoms settled down.
“It wasn't until I was married for a couple of years that I thought I'd come off the pill because I didn't want to take it for such a protracted length of time,” she says.
“I was hoping by then that because I was a bit older things would have settled down. But they hadn’t. The heavy and painful periods came back over time.”
Not everyone with endometriosis has difficulty having children and not everyone who has difficulty having children has endometriosis . But a lot of women find out that they have endometriosis if they are struggling to conceive.
Long says that she and her husband never went out of their way to start a family and perhaps if they had the condition would have been flagged up earlier.
“Getting the initial referral to a specialist took the best part of 20 years even though I had been going to the GP repeatedly with complaints. I don’t know if maybe part of the problem was that I wasn't aware just how extreme my symptoms actually where. Perhaps it was a combination of that and a lack of awareness meant I never got diagnosed.”
Dr David Glenn, a consultant Obstetrician and Gynaecologist based in the Ulster Hospital explains: “There is a lot of variation in the specific symptoms which women complain of and indeed there is poor correlation between the symptoms and surgical findings.
“Pain is a common feature which is often worse coming up to a period.
“It is usually chronic, severe and exacerbated by sexual intercourse or even just going to the toilet.”
While there are many theories as to what causes Endometriosis “none are yet conclusive,” says Dr Glenn.
Once diagnosed, Long underwent laparoscopic surgery to remove a cyst from each ovary – one the size of a grapefruit and one the size of an orange.
“The consultant also gave me something for the bleeding which reduced my periods down to two three days like a normal person…For about 18 months I felt great but then I started to notice the symptoms coming back."
During her time as an MP at Westminster she had several spells in hospital when new cysts burst.
After a visit to her GP in 2016 as the pain once again became unmanageable a blood test returned with a slightly elevated cancer marker.
“Many of the symptoms that come with ovarian cysts are similar to the symptoms you have with ovarian cancer,” Long said. “Yet for years I was being diagnosed with having Irritable Bowel Symdrom. Luckily I wasn’t dealing with cancer but it highlights why early investigation and diagnosis is absolutely crucial.”
This time Long would opt for a hysterectomy – a decision that she had not anticipated making at aged 45.
“I was shocked when the consultant mentioned it as an option,” she said.
All of this was happening as Long was confirmed as Alliance Party leader, the Assembly was about the collapse and she would have to deal with both a local and general election within the space of just months.
She delayed the surgery until August 2017.
“It had almost got the point where the pain was like white noise. I had become so accustomed to it that it was only when I got my surgery that I realised how much pain I had been in.”
Now Long says she is living pain free and is back to work “full tilt”.
“I was saying to Michael it is just nice to know that if we are going away for the weekend that I am not checking the diary to see if that would be one of ‘those’ weekends where we book a nice hotel and I spend the whole time in the hotel room with a hot water bottle. We had so many holiday breaks that were like that.”
Naomi Long's story in her own words.
Endometriosis: Do I have it and if I do what are my options?
Endometriosis Awareness Month: Periods are not meant to be painful
