Endometriosis has rarely left headlines in recent months and, thanks to Endometriosis Action Month in March, more and more conversations are being had and poignant stories told.
For Doctor Fionnuala Vernon of Armagh’s Blackwater Private Clinic this is vital. She regards the debilitating uterine condition as one of the most “notoriously difficult” to diagnose and explains that physicians often rely on patients’ stories to build up a case for endometriosis diagnosis.
And so, she believes, spreading awareness of the condition and talking openly about its effects is a step in the right direction for so many reasons.
Armagh I also spoke with 33-year-old Armagh woman, Ciara Doherty who has been struggling to obtain diagnosis despite living with all of the symptoms and having had an investigative laparoscopy completed last year.
Endometriosis is – despite its problematic nature – incredibly common in the UK. Dr Vernon estimates that statistics would indicate approximately 10% of women suffer with the condition. However, with many women – like the one we spoke to – still in pursuit of definitive diagnosis, the Women’s Health specialist asserts that there may be “many more” than we realise.
According to Mayoclinic.org, the often painful condition occurs when tissue – that is similar to the inner lining of the uterus – grows outside the uterus. It often affects the ovaries, fallopian tubes and the tissue lining the pelvis and adds that “rarely, endometriosis growths may be found beyond the area where pelvic organs are located”.
And while this is known, the reason for its occurrence is not. Discovery of the tissue growth is also further hampered by the condition’s covertness.
Dr Vernon explained: “It is not curable, you cannot cure it, you can just about treat it. There are huge variations in endometrioses and the difficulty is that we need to raise awareness. You can suffer symptoms from your very first period right through to menopause and it’s not diagnosed with blood tests or scans. Ultimately it’s the stories that patients tell us.
“And, ultimately again, the gold standard is for patients to go in as a day case for surgery where they put a camera in to have a look around. I would see lots of women, as a women’s health specialist, and if you sit with a patient and let them tell their story the history comes out.
“It’s there. So awareness is one thing, the difficulty making the diagnosis is another and then barriers to health care is another. If you’re picking up endometriosis quickly and efficiently you’re not waiting until people have adhesions and scar tissue involving bladder and bowel – by then you are catching them too late.
“It’s awful and that’s hugely debilitating and life impacting when people have to step out of the workplace and chronic pain begins to effect your mental health.”
In helping to spread that awareness, Dr Vernon explains that one of the earliest symptoms to be aware of is painful periods.
She said: “If you’re having periods that are really painful and debilitating, if you have symptoms throughout the month like pain during intercourse and bladder symptoms, those are things that are an early indication that there is possibly endometriosis there.
“We will see women at different stages of their lives. Young women, teenagers presenting with time off school, heavy painful periods and women on a fertility journey and then women at the other end too.”
The young, mother-of-one we spoke to certainly exhibited these early indicators.
Ciara explained: “It’s probably been going on longer than I actually realised. I always had really bad periods from a very young age. But I always presumed that it was normal and that’s life – you have to get on with it. People just say if you get cramps that it’s just part of being a woman.”
Following these initial warning signs, she believes that in her younger years the taking of oral contraceptives may have masked the condition but Dr Vernon does however partially defend the use of oral contraceptives in endometriosis patients.
Said Dr Vernon: “Endometriosis is driven by oestrogen. It’s hormone driven and in order to extinguish the fire is that we turn off those hormones. Unfortunately, the science isn’t there yet to turn off a specific hormone, we need those hormones, the likes of oestrogen we need.
“There’s two trains of thought. Sometimes as doctors we will use hormones, like progesterone only or we will use combined contraception to treat symptoms.
“So the way that pills work is that they inhibit ovulation so what we can do as doctors is we want to try and manipulate the cycle and it’s very patient dependent, sometimes it can work really well to control symptoms.
“We can also control when they have a period or we can use the hormones in such a way that they only have a period every three months which can be helpful. It’s not a cure but it can help them to manage symptoms.
“For an endometriosis sufferer, by the time they get diagnosed they could be 15 to 20 years into their journey so when they look back they could say I was fobbed off with pills or patches or gels or spreads, but I suppose it’s not strictly the case. It’s a management strategy in some patients.”
However, for Ciara it all came to light when she had an intrauterine device fitted, more commonly known as a coil.
“When they went to put the coil in it was excruciating,” she said. “Tears were coming out of me and the doctor said she couldn’t do it, there was a lot of blood and she wanted to send me to Craigavon to get it done but she did my smear test while I was there too and it came back with abnormal results.
“I had to go then and get the abnormal cells removed and for a good while afterwards I was telling doctors that I was having pains in my side and stomach and I thought it was something to do with the abnormal cells, but once I saw an endometriosis specialist he said, no, it wouldn’t have been that.”
She did end up having a coil fitted at Craigavon Area Hospital which she said “made the pain 10 times worse”. She was now having pain the week before her period, the week of and the week after. Thus began her journey of attempting to find answers for her growing list of symptoms and increasing pain.
And, that road has not been smooth. Inside the space of two years Ciara made multiple visits to her GP, Craigavon Area Hospital and specialist Gynaecology clinics each time complaining of a searing pain in her side that worsened when she bent over and felt like “tugging” and “like my insides were stuck”, she said.
Eventually, she visited with an endometriosis specialist who insisted that her symptoms warranted intervention with medical menopause.
Dr Vernon explained this common treatment for endometriosis: “There are two conditions where we see that women’s endometriosis symptoms can ease, if not disappear, and that is when they are pregnant or menopausal – and those are other challenges.
“What they do with patients is they turn off your hormones and then they need to replace it – it’s called block and replace.
“So you’re providing a shield but you are making young women instantly menopausal. We are only really hearing more and more about the impacts of menopausal women in their 40s, 50s and 60s, but if you do that to a woman in her 20s or 30s, it can be horrific.”
For Ciara, the medical menopause was horrific. The new symptoms that came with it presented their own challenges – leading her to ask whether she would rather suffer the pain she had before treatment.
“I had to get an injection every four weeks for four months and take HRT with it as well,” she said. “Then you have the side effects of being in menopause and I can’t say which is worse – being in pain or having the night sweats, no sleeping, palpitations and itching all the time.”
But it is true that her side pain subsided during this time. Leading her doctor to assert that the next step would be a laparoscopy – a keyhole surgery involving a camera commonly used to diagnose and treat conditions like endometriosis.
Unfortunately, once the laparoscopy was complete, Ciara said she was left with more questions than she had before.
“It was so confusing,” she said. “They told me they did not find endometriosis in my laparoscopy but they found that my bowel and bladder were covered in adhesions and stuck to my side wall.
“They removed the adhesions and said they were being sent off to be biopsied but, to this day, a new private doctor I’m seeing has confirmed they were never biopsied and she’s now trying to work out why that was never done.”
A year on from her operation, Ciara still has no answers as to what caused – or indeed continues to cause – these adhesions. She is now back on a waiting list for another laparoscopy which, she said, could take years.
In the meantime, she has seen a host of specialists but says her options are limited.
Said Ciara: “I have gone to two male doctors and a female doctor and both male doctors told me that I should get pregnant because then you will get months of relief.
“But all I could think of is that isn’t an option. How could I look after a baby once I’m back in pain again following the pregnancy? One doctor told me my options were to go into menopause for another year, get pregnant, get a hysterectomy or get on with it.”
Certainly, Dr Vernon agrees that options at this moment in time are limited for endometriosis sufferers, and for her at least, hysterectomy is rarely the answer.
Said Dr Vernon: “Hysterectomy is not the end of the road, it’s not a cure. Adenomyosis is where you have inflammation in the muscle wall of the womb, endometriosis is where you have deposits of bladder and bowel on the tummy wall on the pelvis, so even if you do a hysterectomy, you still have deposits of endometriosis that will continue.”
The limited treatment and support available, thousands of pounds she has spent in private healthcare, the long waiting lists and constant interrogations of her condition has taken its toll on Ciara, who says: “It has affected every single aspect of my life. I hate planning anything because I don’t know if I’m going to enjoy my time away or suffer in pain.
“I can nearly cope with the pain but my biggest issue is the chronic fatigue. It is crippling. I have passed out from pain before but once it comes on it makes me exhausted instantly. There’s no cure, no fix and nothing we can do apart from what I’m already doing. I wouldn’t wish it on anybody.”
Dr Vernon is extremely sympathetic to her plight and of anyone suffering with similar complaints.
For this reason, she constantly brings the topic to the fore and talks to her patients readily about the condition: “When I’m talking to a patient I am always putting it on their radar.
“I never want a patient coming to me and saying, ‘You never spoke about endometriosis’. It’s always at the forefront of my mind because I see so many women.”
It’s all part of an active move to hopefully increase awareness and shed light on the condition, hopefully resulting in more research and funding in the long term.
Continued Dr Vernon: “As a women’s health specialist and menopause specialist we are really excited about organisations like Armagh I and the Northern Ireland Endometriosis Support Group bringing these conditions and the struggles that women have to the fore.
“The more light we can shine on diagnoses like endometriosis, menopause, adenomyosis and polycystic ovaries then we are raising awareness, there is more funding going into women’s health, there is more research. The more noise – the better it will be for women.”
