Endometriosis: We know what Naomi Long is going through
Alliance Party leader Naomi Long is taking time off from politics to undergo treatment for endometriosis. Here, author Claire Allan and Bangor woman Laurene Harte talk about their own battles with the condition.
Author Claire Allan (41) lives in Londonderry with her husband Neil and their two children, Joseph (13) and Cara (8). She says:
I'm one of the lucky ones - I have no doubt about that. I was diagnosed with endometriosis in 2012 - less than a year after symptoms took me to the GP for the first time.
The average wait for diagnosis is in excess of seven years because it's quite difficult to diagnose (requiring laparoscopic surgery) and also because it seems to be accepted among women - and even among some medical professionals - that periods are supposed to hurt.
And while we all know a little cramping is normal, in too many cases extreme pain (and I'm talking rolling on floor, crying out as your abdomen locks into spasm after spasm) is written off as 'just period pain'.
It's not normal. It's not just period pain. Having been lucky enough to carry and give birth to two children (many women with endometriosis find themselves struggling to conceive or robbed of their fertility altogether), the pain of endo when it is at its worst is, ironically and cruelly, akin to childbirth.
In hindsight I had symptoms going back years - certainly since I had my son in 2004. I experienced exceptionally heavy bleeding (or flooding), severe cramping, and also extreme discomfort mid-cycle (around the time of ovulation).
But it was in 2012 that the pain seemed to latch on and not let go - regardless of what time of the month. My pain scale moved between uncomfortable, to sore, to agony; there was never a time when I was pain-free.
It meant I couldn't do the things I wanted to. I'd often spend evenings or weekends on the sofa, heavy medication on board, hot water bottle to my stomach. I couldn't make plans with my children in case the spasms started.
Eventually I was offered a laparoscopy and in December 2012, as I lay out of it from the general anaesthetic a doctor walked into my room and told me I had endometriosis and promptly left again.
I was given no advice. No further treatment would be offered. I was left to go home and recover.
When I went back to my GP, dazed and confused, she confirmed the diagnosis and also that I was no longer on the gynae list. I was considered treated.
When the pain returned three months after surgery, I went back to the start of the waiting list.
Endometriosis affects one in 10 women of childbearing age. It is a condition where tissue similar to that in the womb grows elsewhere in the body. It is thought it reacts to the hormonal changes in a woman's body - so it causes internal bleeding, scarring, cysts. It can attach itself to other organs.
The kicker is that the amount of endometriosis a woman has does not necessarily correlate to the pain she is in. Some women have stage 4 endo - and do not experience much pain.
Others, like me, had stage 1 and are barely able to stand up straight or walk. Following further tests - including a chemically induced menopause - my diagnosis was confirmed again.
By this stage the spasms were so bad that I was scared to drive - if the pain hit while I was in my car there was no way I could safely control the vehicle.
I opted to undergo a hysterectomy - knowing that it wouldn't cure endo (as the tissue grows outside of the womb) but that it might help. It seemed better than nothing - even if it meant permanently depriving myself of my fertility.
I had my surgery in November 2014 - my uterus, cervix and fallopian tubes were removed.
Due to my age, my ovaries were left in situ. While this surgery led to an immediate, drastic improvement in symptoms, the fact that I still have ovaries means I still have a monthly cycle and my body still reacts to hormonal changes.
Pain, especially around ovulation, is still something I deal with - but not on the scale I used to.
On an emotional level, endometriosis is cruel.
It strikes at your very notion of womanhood. I still, somewhat irrationally, get upset when people say 'no womb, no opinion' - as if my surgery has left me less of a woman.
I still get the odd pang of broodiness - but I've come to terms with the fact I won't ever carry another baby.
I had to make the right decision for me and my family as they are now - and my children needed me to be well.
Despite the relatively common nature of endometriosis it is much misunderstood and still quite taboo.
Until it is talked about more openly, and until the medical profession look at it more closely, it will continue to be so and it will continue to devastate the lives of hundreds of women.
Having someone so high profile like Naomi Long speak honestly and openly about her struggles with endo will make a massive difference to other suffers."
Laurene Harte (27) a pharmaceutical regulator from Bangor, lived for 12 years with endometriosis before being diagnosed at the age of 22. She has had five surgeries and last year was put on medication to bring on early menopause, all of which she says could have been avoided had her condition been picked up early. Laurene’s partner is Chris Agnew (27), a financial consultant. She says:
I’ve had problems since I had my first period at the age of 13. I had really painful periods which were so bad I had to take time off school and even painkillers didn’t help. I was basically told ‘that’s what happens with periods and learn to deal with it’.
I was also put on the pill at 13 which is a common treatment. At 16, I collapsed at home and my mum, who never accepted that what I was going through was normal, insisted that the hospital investigate. I had keyhole surgery and the consultant went in and had a quick look around and again told me there was nothing wrong.
At this stage I was still taking time off school and was in a lot of pain. Between the ages of 16 and 22 I went to numerous gynaecologists who all basically told me it was in my head and I had to deal with it. I was even referred to a psychologist because they thought it was all in my mind.
Then one night when I was 22, I woke up in agony and was in so much pain I thought I was going to die. It really scared me and the next day I went to my GP surgery and saw a new doctor who said straight away I could have endo and referred me to a specialist in Belfast.
Even then, though, the specialist didn’t think it was too bad. However, I had another surgery in July 2014 and was told my pelvic cavity was destroyed as it was covered with endo.
The consultant said there was too much damage to work on and closed me up and I was referred for more surgery in December. This time it took six hours to remove all of the disease from my body.
Even after these procedures I was still going to A&E with pain and was told it was in my head, despite the diagnosis.
In July 2016, I got a second opinion and was told I still had extreme endo. I had another operation in December that year followed by a course of injections to medically induce the menopause.
The surgeries have left me with nerve pain. The thing about endo is that it needs to be picked up early. Had I been diagnosed earlier then I would not have had as much damage and wouldn’t have needed so many surgeries.
It is something which puts your whole life into chaos.
I would like to have a family so I’ve stopped the menopause injections and will now need fertility treatment. You can’t plan anything; your future gets planned for you. I’ve also been told I need a hysterectomy in my early 30s. You are told something like that and there is no support, you are just left to deal with it.
I think it is brilliant that Naomi Long is talking about it as I really believe there needs to be more awareness and women need to be educated and told about their reproductive health.
Naomi should be proud of the role model she has been for all women, not just for women with endo.”
Symptoms of endometriosis
Endometriosis is the name given to the condition where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body.
Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
It is a chronic and debilitating condition that causes painful or heavy periods. It may also lead to infertility, fatigue and bowel and bladder problems. Around 1.5 million women in the UK are currently living with the condition and it can affect all women and girls of a childbearing age.
Endometriosis can have a significant impact on a woman’s life in a number of ways, including:
- Chronic pain
- Fatigue/lack of energy
- Problems with a couple’s sex life/relationship
- An inability to conceive
- Difficulty in fulfilling work and social commitments