Hysterectomy aged 23’
The pain Shontel Harris felt in her stomach was often so intense that she would pass out. Harris, now 27, was diagnosed with stage four endometriosis as a teenager and spent nearly 10 years searching for a way to make that pain more bearable.
‘‘I started suffering from really bad pain and bleeding after I first got my period when I was 13 and for years every doctor I saw would just tell me I had a low pain tolerance and it was a normal feeling.’’
For two or three weeks out of every month Harris would experience excruciating pain and nausea. ‘‘It felt as though someone was pulling and crunching up my insides in this sharp twisting pain, I had this constant pain in my lower back and hips that sometimes felt like there were knives inside me stabbing and cutting.’’
Endometriosis is a condition where cells similar to those found in a women’s uterus begin growing in other areas of the body. Women who suffer from it often experience extreme pain along with mood swings and unusually heavy and painful periods.
The wait time Harris endured in finding a diagnosis and treatment for endometriosis is also unfortunately common with Endometriosis Australia estimating the average delay between experiencing symptoms of endometriosis and diagnosis is between seven and 10 years, due to lack of awareness around the condition.
Auckland gynaecologist, Professor Cindy Farquhar said one of the reasons endometriosis took so long to diagnose is because the symptoms often mimicked other conditions.
‘‘It’s hard for doctors to diagnose endometriosis because around 70 per cent of 16-year-old girls experience period pain, now not all of them have endometriosis and often those who do, get missed.’’
It’s estimated that one in 10 Kiwi women suffer from the disorder although only a small number of those are diagnosed.
Throughout her teenage years and early 20s Harris tried a variety of different contraception methods to try and ease her symptoms.
‘‘I was on the contraceptive pill for a while but it didn’t help, then I was on the depo provera injection as well as a variety of pain medication – the injection helped me a bit but I would still bloat and look about six months pregnant as well as suffer from heavy periods and lower back pain, I also tried a progestin IUD which caused a lot of problems.’’
Endometriosis New Zealand states on its website, the contraceptive pill is often used as a first line treatment to regulate periods and reduce symptoms. IUDs are also often used as they can halt periods for up to five years and can reduce the pain and progression of endometriosis. On top of endometriosis Harris had a bleeding disorder called Von Willebrand type 2 which caused her to bleed heavily for two weeks of every month.
Harris’s endometriosis began to grow on her bladder, bowel and kidneys making the pain she was in even worse.
‘‘By the time I was 23 I had a son and a daughter, despite having multiple miscarriages while trying, and after giving birth to my daughter I was given the option of a hysterectomy.’’
A hysterectomy involves the removal of a women’s uterus and in some cases her cervix, Farquhar said it was ‘‘very rare in New Zealand’’ for a woman in their early 20s to have the surgery. ‘‘The surgery is not usually performed on young women because of the way it affects their chances of becoming pregnant in the future.’’
But Harris leapt at the chance for the surgery as she believed it might help to ease her endometriosis pain once and for all. ‘‘It was a pretty long process to actually get the hysterectomy, I had to go through two gynaecologists who both had to sign off on it due to my age.’’
Farquhar said having a hysterectomy for endometriosis was sometimes done for women who had already had children but was still uncommon.
‘‘For the majority of women with endometriosis, they end up finding another way to get on top of their symptoms.’’
In 2016 Farquhar said only five per cent of the hysterectomies performed at National women’s hospital were for women suffering from the disorder. Sessions with a therapist were also conducted for Harris to ensure she was in the right frame of mind to undergo the surgery.
‘‘It was decided I would have the hysterectomy but still keep my ovaries as the doctors didn’t want me to have to be on hormone replacement at such a young age. Technically I can still have more children with the help of IVF or a surrogate but I’m fine with the prospect of not being able to have any more children, I feel lucky enough to have two.’’
After a three day stay in Hastings hospital following the hysterectomy, Harris said she came home "feeling like a new person.’’
‘‘It might sound weird, but when you’ve been in pain in so long and then you go from that to not having the pain anymore it just makes you feel brand new – I was able to dance for most of the night at my wedding and be more active with my kids.’’
Before the hysterectomy endometriosis had such a hold on Harris’s life it affected every aspect of it.
‘‘It disrupted everything. I was always tired and had trouble sleeping because of the pain, I lost friends and family members because they thought I was attention seeking or being a drama queen.
‘‘I was depressed and felt like a failure as a mum because I was always in and out of hospital with pain and bleeding.’’