To help publicize the disease locally and offer support, Simone Goubault founded the EndoCenter of the Cayman Islands in May, under the auspices of the US-based Endometriosis Research Center.

She was involved with an endometriosis support group when she was a student in Miami.

‘No one in your family can really know what you are going through,’ she explained, adding that she appreciates it is hard for others to understand.

Ms Goubault was diagnosed with endometriosis six years ago when she was 21, though she had noticed symptoms since she was 15.

She is all too familiar with the pain caused by endometriosis and hasn’t found any satisfactory treatment.

‘Nothing has worked. It is something you have to deal with,’ she said.

Ms Goubault has been on continuous birth control for three years. ‘It helps with the pain because you don’t get your period so your body thinks you are pregnant or undergoing menopause,’ she said.

Ms Goubault underwent her first laparoscopic surgery in 2001. She repeated the procedure the next year to remove more tissue. At the end of March this year, she had to have a third surgery. She is not responding to medication.

Jerica Fellner, 17, has suffered from the disease since she was 13, though it wasn’t diagnosed until recently. She has joined the EndoCenter’s support group.

Ms Fellner estimates she has seen between 30 doctors and 40 doctors – in Atlanta, Jamaica and Grand Cayman – in the last few years, usually on visits to hospitals when the pain forced her to seek help.

‘I have been having pain from the time I was 13. The majority of doctors kept telling me they didn’t know what it was, but I knew something was wrong,’ Ms Fellner said.

Her illness stumped a lot of the doctors who examined her.

‘The doctors would say ‘I don’t know what the problem could be, the ovaries seem fine.’ They couldn’t tell anything from the ultrasound, so they would prescribe painkillers,’ Ms Fellner said.

One doctor even diagnosed her as suffering from pelvic inflammatory disease, a disorder usually affecting women who are sexually active, which did not apply to her. She was on an antibiotic drip for three days in the hospital, treating a disease she didn’t have.

The teenager has already undergone three surgeries. In 2001, she had major surgery to remove cysts on her ovary, an early sign of endometriosis that was missed. Ms Fellner has also undergone two laparoscopies, the most recent one in April, in which her endometriosis was finally confirmed.

Even though a doctor in Atlanta diagnosed Ms Fellner with endometriosis in April 2003, other doctors didn’t accept that conclusion.

‘The doctors didn’t think I had endometriosis, even though I had adhesions and more than half my ovary had deteriorated,’ she said.

The main symptom for her is a constant pain on her right side, but the discomfort can reach levels which prevent her from attending school.

‘I have pain two to three weeks of every month,’ she said.

The drugs she has taken to try to counteract that pain, which fill several medicine cabinets, tend to cause their own problems with side effects.

‘The drugs make you real sick. They make you vomit and feel dizzy,’ Ms Fellner explained.

Other women at the group’s recent meeting described similar experiences.

Treating the symptoms of endometriosis comes down to a choice between being in pain or suffering unwanted reactions from the medicine.

‘The progesterone makes you dizzy. I feel like I am walking around in a daze,’ said one woman, adding, ‘It’s not just pain, it’s how it affects everything. You are tired all the time, just from fighting the pain.’

Another group member echoed this feeling: ‘It is depressing. Most days you don’t feel like yourself and you tend to take it out on your husband and others in your family.’

The first woman also dismissed the view of many doctors that pregnancy will halt the disease. ‘They always say that. It doesn’t work.’ She and Ms Goubault each have a child and continue to suffer with endometriosis.

This meeting took place in the offices of Dr. Howard Deosaran, who has extensive experience in treating endometriosis. He feels strongly about offering whatever help he can.

‘It’s something we need to step up to the plate to do. Women need to understand they have a place to go to find camaraderie and be able to speak of their disease,’ he said.

The doctor has noticed that more women are becoming more involved in learning about the disease and coming to doctors armed with lots of information.

‘These women are long-term sufferers. This is a way of being able to give back to the community,’ Dr. Deosaran said.

The group format provides an important forum for women who suffer with this disease, Ms Goubault explained.

‘Together we are survivors of endometriosis; alone we are sufferers of endometriosis,’ she said.

If you go

The EndoCenter of the Cayman Islands will meet the second Monday of every month (except there will be a meeting 6 June) from 5.30pm to 7.30pm at the Women’s Resource Centre. For more information, email Simone Goubault at [email protected].