UFE technology frees women suffering with fibroids
Awareness drive helps those unwilling to talk about problem
WHEN Mashadi Mathosa was diagnosed with fibroids at the age of 25, she was told she should have her womb removed, and along with it her chance of having children.
Mathosa is one of millions to experience life with uterine fibroids and hear from her doctor that, as a result, she might never be able to bear a child.
Four out of 10 South African women are living with fibroids and about 80% are at risk of developing them at some point during their reproductive phase.
Fibroids are benign tumours that grow in a woman’s uterus, often causing heavy bleeding, fatigue, pain and difficulty with pregnancy.
Women living with fibroids often eliminate white from their wardrobe out of fear of being embarrassed by a heavy menstrual cycle that can come with no advance warning.
Mathosa had not heard of fibroids before her diagnosis in 2008 and was disappointed that there was little information available when she researched them online. She said she discovered that they were more common in women of African descent, but couldn’t seem to find out why.
Mathosa elected not to get a hysterectomy, opting instead for a myomectomy, which removes fibroids but comes with complications and often results in the recurrence of the tumours.
She said although the surgery was painful, her life improved dramatically after it. However, within two years the fibroids were back with more intense symptoms. Mathosa said she decided not to treat the fibroids but to try to learn to live with them.
“My life became very difficult,” Mathosa said. “I gained weight and I couldn’t do anything; I was immobile. I got depressed.”
Dr Gary Sudwarts, the head doctor at the Fibroid Treatment Clinic in Cape Town, said many women have invasive surgeries as they are poorly advised by doctors on treatment options.
He said many people – including gynaecologists – didn’t know about the treatment his clinic used called Uterine Fibroid Embolisation (UFE), which is non-invasive and more effective than traditional treatments.
In the procedure a tiny probe is inserted through an artery in the wrist which travels to the uterus and cuts off blood flow to the fibroids, causing them to shrink and eventually die.
Sudwarts said the treatment has been available for many years but it has gained popularity recently.
“Since it is such a non-invasive option, it’s definitely something that will grow. As we spread the word to ladies who still suffer in silence, we hope they will be able to impact their lives in a positive way,” said Dr Maja Wojno, an interventional radiologist at the Fibroid Treatment Clinic.
Audrey Mutare said though she had a suspicion that she might have fibroids, she put off going to the doctor because she was worried they would tell her to have a hysterectomy, like her mother had. Like Mathosa, she didn’t know that UFE was an option.
Mutare was diagnosed with fibroids in 2014 when she fell pregnant and went to a gynaecologist for a check-up. Within 10 weeks of becoming pregnant, Mutare miscarried due to the large fibroids.
She chose not to treat the fibroids though they kept her home from work a few days each month during her period and caused a pinched nerve in her back that required surgery to repair.
The following year, she miscarried again and doctors told her she wouldn’t be able to have a baby.
“The doctors didn’t realise the responsibility of telling someone that information and the damage that it does emotionally and mentally – there was no support from them,” Mutare said. After the miscarriages, Mutare realised there weren’t support groups for women with fibroids or other fertility problems. She believes this is because fertility is seen as a taboo topic.
Luckily for Mutare and Mathosa, both had family members who heard Sudwart’s pitch for UFE’s on the radio. Both have since had successful procedures and speak highly of the Fibroid Treatment Clinic.
Mutare was able to become pregnant shortly after the procedure and though she said the end of the pregnancy and the months following were challenging as the baby caused the fibroids to grow again, her baby was born healthy a year ago.
Two years after her UFE, Mathosa said she still feels great, and didn’t worry about wearing white at her wedding a month ago. However, she said she still fears asking her doctor if she’ll ever be able to have a child.
Wojno and Sudwarts acknowledge that because it’s hi-tech, UFE is expensive and so is limited to those who have medical aid. They say they are working on training more doctors to expand the treatment to public hospitals and make the procedure more accessible.
“Certain (public) hospitals do offer it, but there aren’t enough doctors who offer the procedure,” Wojno said.
“Women I worry about the most are the ones without medical aid who are just going for hysterectomies and their option of having children is taken from them because there’s no medical access for them to have the embolisation that I had. There has to be a conversation around public health,” Mutare said.
Slowly but surely, conversations about fibroids and fertility are happening. About a year ago, the Fibroid Treatment Clinic teamed up with the White Dress Project, a US nonprofit that spreads awareness about fibroids and treatment options to bring advocacy to South Africa.
Mutare and Mathosa spoke in Joburg in May, sharing their stories with women going through similar problems. Both women wore white, something they never would have done a few years ago. In fact, Mutare said before the White Dress Project event, she didn’t even own anything white.
Sudwarts said the event was a huge success, and hopes there are more in the future.
Mutare agreed, and said having an event once or twice a year wasn’t enough to overcome the huge lack of awareness. Few women were willing to talk about it.
“When I started sharing my experience with my circle of friends, you won’t believe the amount of women who came to me who said they also have fibroids. You would think we’d share everything, but for some reason fertility is taboo, and that’s something we’re trying to break.”
‘Fertility is taboo and that’s something we’re trying to break’