Endometriosis 'late diagnosis' warning

Published Tuesday, 21 January 2014
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Health campaigners claim that up to 2,000 women in Northern Ireland are suffering unnecessarily because of problems with treatment for endometriosis.

Endometriosis 'late diagnosis' warning
Campaigners said thousands of women are suffering due to late diagnosis. (© UTV)

Patients are calling for quicker diagnoses of the debilitating condition, which can cause infertility, through better education of doctors and the establishment a regional clinic.

Endometriosis is a non-cancerous growth of abnormal tissue similar to the lining of the womb in the ovaries and pelvis area, which can spread to other parts of the body.

Belfast woman Nuala Campbell, who developed it when she was 15, had her uterus removed after years of suffering.

The 31-year-old make-up artist said: "Beforehand I was just trying to survive and get through the next hour. It was not life, it was just survival.

As the disease progressed, for the past seven years, that has been an everyday occurrence, to have to live with that meant every day was absolute hell.

Nuala Campbell

"Around the time of the month I was hospitalised every single month, it was an unbearable amount of pain, absolutely excruciating."

One in 10 women of child bearing age in the region have endometriosis and one in 10 of those will have the moderate to severe form.

Dr Pamela Bell is part of the Pain Alliance of Northern Ireland, which is lobbying for the establishment of an integrated clinic to provide a good regional service.

She said: "Our key consideration is speeding up the time it takes to achieve a diagnosis, as there is a serious problem with misdiagnosis leading to delays in treatment.

"The often tragic outcome of that delay is the fact that many women are unable to have children by the time diagnosis is made and treatment provided."

A spokesperson for the Health Department said GPs regularly attend education sessions on a range of conditions and added that endometriosis could be included.

"The HSCB is satisfied that GPs are very aware of the possibility of endometriosis in females and there is a clinical pathway of treatment and referral that they follow," they continued.

"GPs attend regular education sessions through the year which covers the whole gamut of conditions that they encounter in practice. If deemed necessary, sessions on endometriosis could be included within this programme.

EXTERNAL LINKS / CONTACTS
Pain Alliance Northern Ireland telephone: 0780 3293 793
"Endometriosis services are mainly provided in a primary care setting as the condition can often be managed by the prescription of painkillers; however, where more specialist input is required, GPs will refer the patient to the gynaecology service, where they can expect to be managed and treated on an individual basis according to the specialist's clinical judgement."
© UTV News
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12 Comments
Nuala Campbell in Belfast wrote (323 days ago):
It certainly wasnt the easiest thing I've ever had to stand up and talk about. However after reading the comment here, Im so glad I did. The suffering needs to end! Lets do something about it together. If you are interested in helping kick Endo's butt in NI, add me on facebook and drop me a line x
Julie in South Down wrote (332 days ago):
I had surgery twice in one year in my early twenties to remove one ovary and tube and part of the other ovary. I continue to experience pain at times but was lucky enough to have an excellent consultant. I was blessed to have three daughters since then and just hope that they don't develop it. My sister has also been diagnosed with it.
Suzanne in Belfast wrote (332 days ago):
I have suffered for over 9 years with this condition. Until you have it, you have no idea of the pain it causes. I have had three operations so far. My doctor in Belfast couldnt find anything within a year but after seeing a family doctor in Austrialia for 5 mintues I was disgnosed with it.I am please that someone has finally raising awareness on this issue.
shireen in london wrote (333 days ago):
i have been suffering for at least 10 yrs n was diagnosed in 2010. the pain was an bearable. a week before my period i would be in A N E . my gyno put me on some tablets ,they have helped me, also to confirm endrometriososis i have had a laposocrapy. i think school should help young girl know about this illness, an make awareness everywhere possible.
Belle in Newtownards wrote (333 days ago):
I was diagnosed 1yr ago and it took persistance to get a diagnoses the first gyne I went to told me to have another baby and it would solve any 'women's problems' if hadn't been in so much pain and gone private I wouldn't know I had this illness since then iv been given pain killers that don't work and no support network! I Do hope this unit will getting the funding needed as it will help so many people in the same position !
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