A teenager with suspected endometriosis, who is travelling to Romania on Tuesday for treatment, has said she is “missing out on all the normal things” her friends are able to do.
Nikita Clarke-Healy (18), who has to use a walker and wheelchair to get around because of the debilitating pain, said she has started to lose control of her bladder and spends most of her days in bed.
Ms Clarke-Healy, from Walkinstown in Dublin, was due to sit her Leaving Certificate next month but has not been able to attend school since December because of her condition. Her mother Angela is now acting as her carer, helping her to get dressed, shower and wash her hair.
The teenager will undergo an enema procedure and MRI scan in a specialist hospital in Bucharest later this week. Ms Clarke-Healy said she will then be advised as to whether she requires surgery or what the next steps will be in terms of treatment.
The teenager and her mother arranged the treatment themselves after doctors in Ireland said she was “too young” to be diagnosed with endometriosis.
Ms Clarke-Healy’s case was raised in the Dáil last month by Sinn Féin leader Mary Lou McDonald who read out a letter from the young woman, highlighting long waiting times for the treatment of endometriosis in Ireland.
The condition, which can cause severe pain, involves tissue similar to the lining of the uterus growing outside the uterus. It can affect women of any age, although it is less likely in women after menopause and girls in the early years after their first period, according to the HSE.
“I basically just stay in bed all day,” Ms Clarke-Healy said on Monday. “I haven’t been in school since Christmas... I need help to get dressed or have a shower, wash my hair. I basically can’t do anything by myself.
“My school graduation is later this month. I will be going but I’ll just be sitting in the back in the wheelchair, I won’t be actually doing the class.”
The teenager said she first started to experience symptoms following her first period, while her condition deteriorated significantly last January.
“The only way I can kind of describe it [the pain] is like barbed wire being wrapped around my stomach and back,” she said. “It‘s sharp and I have pain going to the toilet. I’ve started to lose control of my bladder and wetting myself a lot. Since January I’ve been bleeding [most days], I might have a break of a couple of days.”
Her mother Angela said they “just want answers” and that “right now our lives are on hold”.
“We’re sitting in and the world is passing us by and I just feel like Nikita is missing out on so much,” she said. “It is frustrating. It took us nine months to see a gynaecologist. Then we saw them and they said come back in nine months time. Everything is in months. But for me, as a mother, I need answers soon. I can’t keep waiting six and nine months before I go and see a doctor.”
The HSE said endometriosis is one of the most common gynaecological conditions and is estimated to affect approximately one in 10 women worldwide.
It said endometriosis is a difficult condition to diagnose and treat because of the variation of presentations.
The HSE has commenced the establishment of two supra-regional complex endometriosis services in Tallaght University Hospital and Cork University Maternity Hospital.
They are being designed to offer specialised care to severe and complex cases of endometriosis, “which may incorporate surgery for deeply invasive endometriosis involving the bowel, bladder, ureter or outside of the pelvis”.
The HSE estimates that about 350 severe cases a year would need treatment through the supra-regional endometriosis services.
