Incurable and so painful

Sharee Carberry hates her daily pill-popping routine.

The Upper Hutt woman takes so many pills when she gets up in the morning it kills off her appetite for breakfast.

Onrex helps sooth the tumult in her stomach, a stronger version of neurofen keeps the inflammation in her abdomen down and tramadol helps take the edge off.

She used to worry that her kitchen cupboard looked too much like a pharmacist’s, but now she’s beyond caring.

The 35-year-old mother of two suffers from endometriosis, an incurable disease affecting up to 10 per cent of women, where the lining of a woman’s uterus spreads beyond the uterus.

Treatment options for the affliction include the removal of the excess lining via laparascopic surgery, hormone therapy, and at the more extreme end the removal of internal genitalia.

Carberry has tried all of those treatment options, yet is still bed-ridden and house-bound regularly due to the pain. It wasn’t until she was 23 she was diagnosed. ‘‘I had been misdiagnosed with pelvic inflammatory disease for eight years,’’ Cranberry said.

It took something quite extraordinary for specialists to reconsider their diagnosis.

‘‘I bled for 19 weeks, which is why they decided to investigate further.’’

To date, Carberry has had 14 rounds of laparascopic surgery where a laser has been used to cut out any endometriosis discovered.

‘‘I’ve had it settle on the bottom of my stomach, on my bowel, in my womb.’’

Because of the extent of the endometriosis, Carberry had a hysterectomy when she was 26.

‘‘I had my children when I was 17 and 18. If I hadn’t, I would never have been able to have children,’’ she said. ‘‘Five years after the hysterectomy I had my ovaries removed because the endometriosis had come back. There was a seven per cent chance it would.’’

Carberry has struggled not only with the pain and discomfort caused by the disease for most of her life, but the toll it has taken on her career and relationships. ‘‘It has impacted on my life so much. ‘‘It impacted on my parenting.’’ ‘‘I just want to be able to have a normal life, I want to be able to go out with my friends.

‘‘I want to be able to wear things other than leggings because everything else is too uncomfortable.’’

‘‘I’ve been battling this for 20 years and I’m sick of it.’’

In Kilbirnie, Woburn born-and-bred Olivia Reid knows all too well how painful endometriosis can be. The 23-year-old pharmacy technician has lived with the disease since she was 11. ‘‘I had my first laparoscopy when I was 15.’’ She was symptom free for about two years ‘‘then it started coming back . . . worse than what I had ever had when I was younger.’’

Reid said she had to fight for another round of surgery.

‘‘The second time around the gynaecologist didn’t even think I had it.

‘‘It made me feel like I was exaggerating. I think a lot of women feel the same way.’’

Reid said she thought it was because she took her boyfriend along to an appointment that she was finally offered a second bout of surgery last June.

Reid said the disease had forced her to adapt in order to cope with school life.

‘‘I was on the pill so I could time my periods to come in the school holidays.’’

‘‘The pain was on another level. At first [it was] confined to my abdomen but then it radiated up my back and down to my legs.’’

One of Reid’s biggest concerns was whether it would affect her ability to start a family one day. She was determined not to let the disease win in that department.

For Naenae woman Rosie Robertson, fears her endometriosis would affect her ability to become pregnant had been vanquished. Now nearly eight months’ pregnant, Robertson said she was diagnosed with endometriosis following laparoscopic surgery in early 2009.

‘‘I’ve always had painful periods, even when I started at 13,’’ Robertson said.

‘‘There would be days when I couldn’t go to school. It feels like someone is inside you hacking away at you.’’

Robertson said a big issue around the condition was a lack of awareness. ‘‘Everyone I’ve spoken to doesn’t know. ‘‘My partner had never heard about it, so I made him read up about it so he knew I wasn’t just being a baby.’’

‘‘I think because people can’t see it from the outside, they don’t know what it’s like.’’

Gynaecologist’s perspective - see pg 6.