Aleisha Scott, 22, is one of thousands of wāhine who suffer from endometriosis and adenomyosis. Photo / George Heard
In Her Head is a Herald campaign for better health services. Health reporter Emma Russell investigates what's wrong with our system and talks to wāhine who have been made to feel their serious illness is a figment of their imagination or "just part of being a woman".
Aleisha Scott is 22 and without a uterus. She had it removed last month after no other treatment was effective in treating her crippling yet common "female condition".
"It's frustrating," Scott told the Herald before getting a hysterectomy.
"I'm not happy that it's come to this but I don't want to live my life in pain any more."
A hysterectomy is a surgical procedure that removes the uterus (the womb), which means a woman loses the ability to become pregnant and no longer menstruates.
Reasons for the surgery include abnormal bleeding, uterine prolapse, fibroids, cancer and adenomyosis.
Scott, an administrator for New Zealand Police in Christchurch, is one of thousands of wāhine who suffer from endometriosis and adenomyosis.
She shared her experience with our health system as part of the Herald's In Her Head project because she believed more research was needed to find better treatments for these conditions so that women didn't have to opt for a hysterectomy.
Her story started when she turned 13 and began experiencing heavy periods.
"I kept thinking it was normal to put maternity pads on at night and soak through them in a couple of hours. I didn't bring it up to anyone because our health classes told us it was normal," Scott said.
The impact it was having on her teenage life was significant, she said.
"Not going on sleepovers or school camps because I don't know what's going to happen - I might wake up in a pool of blood."
The hardest thing was "never being able to relax."
Throughout school, Scott competed in cycling at a national level and she felt her severe periods impacted her performance massively.
"Every nationals I'd be bleeding, which would ruin my form and my confidence, and I knew I could do it better," Scott said.
By age 16, she told her mum about it and they saw a doctor.
However, looking back she didn't think doctors took her heavy bleeding and painful periods seriously. She saw four male doctors who kept switching her to different birth control pills and none were effective.
"I didn't feel believed and felt like doctors thought I was over-exaggerating. I kept being told I was young and it was normal," Scott said.
At age 19, she said she asked her mum if she ever bleed for four months straight.
"She was like 'God no, do you?' and I was like 'Yeah all the time' so she started researching and found stuff about endometriosis".
They decided to see a new doctor, who was female, and who referred her for an ultrasound. However, those results came back normal and she was again offered birth control pills.
Scott said she pushed back and asked to see a specialist. She said the doctor told her there was a five-year wait if she went through the public system but she had health insurance so could get cover to go private.
In May 2020, she had a consultation with a gynaecologist who immediately suspected endometriosis but booked her in for a laparoscopy or keyhole surgery to look inside the abdomen, to confirm it.
Endometriosis is a condition in which tissue normally lining the uterus grows either on the ovaries, fallopian tubes or intestines.
Two months later, and seven years after she first started experiencing symptoms, not only did the surgeon find endometriosis but he also discovered adenomyosis, which is a condition of the female reproductive system causing the uterus to thicken and enlarge.
The surgeon was able to remove the tissue and it became a "wait and see game" as to whether it helped alleviate her symptoms.
Unfortunately, it didn't and so she tried other hormonal injections and medication but that too made no difference. At that point, she started considering a hysterectomy.
"My specialist told me he's not going to deny me what I want because it's my choice but it's his job to make sure I've been informed of all the possibilities and options that there are, which I found was amazing," Scott said.
She was referred to a psychologist, who confirmed she was capable of making the decision and was aware of the consequences and possible side effects.
After that, her gynaecologist agreed to do the procedure.
"There's a chance it might not fix anything and I might still be in pain every single day. I've known that ever since researching it. Obviously no kids is a big side effect but I feel like I need to at least try to get my life back because otherwise I'll be on heavy pain relief for the rest of my life," she said.
The Herald checked in with Scott after her surgery. She said she had one night in hospital before she was allowed to go home.
"It went really well, recovery is going perfectly," she said.
It would take her six weeks for her to recover fully and by then she would know if the procedure had relieved her of pain.
When asked what needs to change, Scott said more research not only into treatments but also into the impact these female diseases had on sport.
• Endometriosis is a condition in which tissue normally lining the uterus grows either on the ovaries, fallopian tubes or intestines.
Women with the illness can be left in severe pain and experience heavy bleeding. In some cases they can become infertile.
At least one in 10 women live with the condition but many wait years, if not decades, to be diagnosed because it's often dismissed as "part of being a women". The longer it's left untreated, the worse it gets.
Surgery is the only way to diagnosis endometriosis. Depending on the severity of the disease, it can be removed during that operation and managed with birth control pills.
Removing the ovaries or uterus is sometimes recommended where symptoms have significantly affected the women's quality of life.
• Adenomyosis is a condition of the female reproductive system which causes the uterus to thicken and enlarge. Often, women with adenomyosis also have endometriosis.
It can cause heavy and prolonged menstrual bleeding, severe cramping, pain during sex and blood clots that pass during a period.
Medication can help relieve pain and lessen heavy bleeding but removing the uterus (hysterectomy) is sometimes recommended in severe cases.
Follow women's personal stories of poor healthcare in our interactive grid below. Click on a face to go to the full story.
The 36-year-old died on December 19.