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I want to remove my uterus because my endometriosis is so painful

Tue, Jan 10
Taylen Heremaia.

When Taylen Heremaia told her doctor she wanted a hysterectomy to help with her endometriosis, the doctor asked if she had a boyfriend and what he thought about this.


She didn’t have a partner at the time and wondered why it should matter when it should be up to her if she wanted to remove her uterus.

“This hypothetical boyfriend doesn’t have a uterus that’s in pain,” Taylen told her doctor. “I do.”

Taylen says the doctor kept pushing and said “but what if you meet a man who wants children?”

“I told him I don’t want kids. So he can go have kids with someone else,” the 24-year-old says.

The fight to get a hysterectomy

Experiencing chronic pain since she was 15 and later being diagnosed with endometriosis - a painful condition where cells similar to the lining of the uterus grow outside of the uterus, Taylen Heremaia has been on an exhausting journey to get a hysterectomy.

A hysterectomy is a surgery to remove the uterus. A total hysterectomy may also remove the cervix, ovaries, and fallopian tubes.

The most common reasons for having a hysterectomy are removing uterine fibroids, which are non-cancerous tumours in the uterus or because of abnormally heavy periods which can be caused by endometriosis and unsuccessfully treated pelvic inflammatory disease.

Hysterectomies are not offered as an option for permanent contraception, however, as a result of removing the uterus the person will be permanently infertile.

“As long as I can remember, I haven't had a day where I've not been in pain,” Taylen says.

“Even breathing too deeply makes my whole body feel like it's on fire. It feels like you're being stabbed.”

Taylen’s chronic pain is so debilitating she has had to leave her job. She now lives with her family and is supported by the sickness benefit.

She has had multiple surgeries to try and burn the endometriosis off her uterus but this has only temporarily helped.

There is no cure for endometriosis but surgery, hormone treatment, and pain medication can help some people relieve their pain.

In severe cases, a hysterectomy can be performed if the endometriosis is on the uterus - which is the only place Taylen’s endometriosis has been found.

But according to Te Whatu Ora, a hysterectomy is not a cure for endometriosis as it can still grow back after surgery.

“But if it can alleviate like 3% of my pain, I would say it's worth it,” Taylen says.

Experts say the health system makes it difficult for young people to get the procedure because there is a concern they might change their mind about wanting children and regret the permanent procedure.

Despite being clear about never wanting genetic children, Taylen says the expectation and pressure for her to want children in the future feels dehumanising and she feels it has gotten in the way of her getting a hysterectomy.

Why it’s hard for young people to get a hysterectomy

Sexual and reproductive health specialist Dr Simon Snook says the way the public health sector is set up means there is an inherent bias against people who want a hysterectomy if they are young or do not have children.

Because hysterectomies are expensive to get done privately, public funding is often relied on.

Hysterectomy featured in the top 10 most common Southern Cross health insurance claims in 2020.

However Snook says this means the amount of funding limits how many procedures can go ahead.

To decide who gets access, health professionals will ‘score’ people on a number of factors using the Clinical Priority Assessment Criteria (CPAC).

“These include things like health complications if someone were to get pregnant and difficulties with contraception,” Snooks says.

“But two of the scoring factors on there are age and number of children. So you get more points for being older and for the number of children you have.”

Sarah Bailey spent five years trying to get a tubal ligation

After having adverse side effects to multiple different forms of temporary birth control, Sarah Bailey says she “pestered and pestered” multiple doctors to let her get a tubal ligation for permanent contraception.

A tubal ligation is a surgical procedure to block or remove the fallopian tubes to permanently sterilise someone.

Sarah says she has always known she didn’t want genetic children.

But like Taylen, she says doctors asked her, “what if your husband in the future wants children?”

Sarah, who is bisexual, replied: “What if I am not with a man in the future?”

“Everything was very straight couple focused and it felt like the man’s want for a child meant more than my want for not having a child,” the 24-year-old says.

After changing GPs and continuing to badger her doctor about wanting a tubal ligation, she was finally interviewed by staff at Greenlane Hospital in Auckland to see if she would qualify to get it done in the public sector.

Because Sarah was already seeing mental health services for her bipolar disorder, she had to be assessed by their in-house psychiatrist and have multiple appointments with them to be approved for the surgery.

After four appointments with the psychiatrist, Sarah got the green light and at 23, she had her tubes tied.

Sarah says she spoke with at least 10 health professionals about getting a tubal ligation over five years before it finally happened.

“[It was] not quite smooth sailing and I definitely fucked my body up a bit in the process [trying other temporary forms of contraception]. But that’s literally all I felt I could do, pester and pester and pester until finally, someone listened,” she says.

“I even made a case about how much this would save the taxpayer because I wouldn’t have to get an abortion or funding for different contraception.”

Why seeking a hysterectomy turns into a discussion about mental health

After persevering with her doctors, Taylen is now starting the process of trying to get approved for a hysterectomy. Like Sarah, this process also involved needing to have several meetings with a psychologist.

“As soon as I brought up that I didn't want children, all of a sudden my mental health issues were put at the forefront,” Taylen says.

“It felt like people were saying if you have a uterus, how could you not want children? What’s wrong with you?”

National director of hospital and specialist services at Te Whatu Ora Fionnagh Dougan says if hospital care for endometriosis is needed, health professionals will incorporate a multidisciplinary approach to treatment which includes gynaecology, pain management, fertility specialists, radiology, psychology, physiotherapy.

“The psychological assessment and support are important to inform identification of the most appropriate treatment,” Dougan says.

University of Auckland associate professor in obstetrics and gynaecology Michelle Wise says it is not a rule that people need to see a psychologist before getting permanent sterilisation but counselling is often offered so that the person can explore why they want this surgery.

Understanding the implications

International research shows women under the age of 30 who have permanent sterilisation were more likely to have regret at some point in the future.

Wise says “in traditional New Zealand, it’s not the norm to know you never want to have children in your 20s so I can understand why a busy doctor in their office may not have the time to go into that in detail and truly explore why they want this permanent surgery and make sure they understand the implications”.

“So that’s where it can be helpful to include someone else in that team to help someone make an informed decision.”

This psychological approach, Wise says, can also be used in other situations like planned C-sections, where there is no need for one, or people looking to have an abortion after 20 weeks.

Is it this hard to get a vasectomy?

The short answer is no.

“You definitely don't need to see a GP first and you definitely don't need to have a psychological assessment,” Snook says, who has been a vasectomist for 20 years.

“You choose to have a vasectomy. And then you get one.”

At Snip, the vasectomy clinic Snook works at, you can book the procedure online and you will be offered an optional phone consultation with a nurse to talk about any concerns or questions about the procedure.

Outside of this, you do not need to be seen in person by a clinician before the procedure.

Snook says the most important thing for clinicians to explain is vasectomies should be seen as a permanent decision and the person needs to be sure they do not want to have children in the future.

According to Dougan from Te Whatu Ora when it comes to tubal ligation or vasectomies “there has been a requirement for counselling, often provided by a senior clinical nurse.”

New Zealand Aotearoa’s Guidance on Contraception states it is good practice for “individuals [to] be counselled about the risks of the procedure [and] the risk of regret.”

The difference between a vasectomy, tubal ligation and a hysterectomy

While the process of getting a hysterectomy or a tubal ligation is often compared to getting a vasectomy - the permanent contraception option for people with testicles - the severity of these surgeries are very different.

A vasectomy involves a simple scalpel-free 15-minute procedure using local anaesthetic - meaning you are still awake for the surgery - and recovery usually takes a couple of days.

Tubal ligation is usually done under general anaesthetic - meaning you are asleep for the surgery - and can take a week or longer to recover.

A hysterectomy is an hour-long procedure done under general anaesthetic and involves needing to stay in hospital after the procedure. Recovery can take three to six weeks.

The need for a surgeon and an anaesthetist for tubal ligations and hysterectomies means the cost of these surgeries requires much more resourcing so they are more expensive than getting a vasectomy.

Vasectomies are done privately which makes them easier to access

In New Zealand, vasectomies are not nationally funded through the public health system like hysterectomies and tubal ligations are.

This means vasectomies are often performed through private clinics. However, some health services may cover part of the cost of getting a vasectomy for people who meet certain criteria such as low-income earners.

Since vasectomies are often handled outside of the public sector, Snook says any person with testicles who is over the age of 18 - which is the age you can legally consent to a medical procedure on your own - can get one.

“I don't make any issue about age or number of children, I just explain that this needs to be seen as a permanent decision,” he says.

Snook says some doctors may be more paternalistic and believe you should be of a certain age or should have children first.

“But I would say they are in the minority now,” he says.

“I personally believe if you are of an age to consent to a medical surgery you can decide about your reproductive health. And I think people with uteruses should be treated no differently than people with testicles when it comes to their ability to make that decision.”

Snip does over 5000 vasectomies a year.

Snook says they haven’t operated on someone under the age of 18 but sees people who are between 25 and 30 every week.

He says 18- to 25 year-olds are less common but they still see several people in this age group.

Why temporary birth control is encouraged before getting permanently sterilised

Sarah says despite wanting a tubal ligation from an early age, she was told she needed to try long-acting contraception including the implant and copper coil instead.

Snook says one of the key reasons why people with a uterus will be heavily encouraged to try other temporary forms of contraception is because IUDs or contraceptive implants are just as effective or sometimes more effective at preventing pregnancy - and are reversible if you change your mind.

“If a person has their tubes tied, the chance of that failing and them still getting pregnant is about one in 200, which is about the failure rate for an IUD or contraceptive implant.”

“On the flip side, the failure rate of a vasectomy is 1 in 2000 which means it is 10 times less likely to fail than tubal ligation,” he says.

“It’s also the only other contraception available to people with testicles alongside condoms, which has a failure rate of about one in five.”

Snook says it is important that someone understands this but says this isn’t a reason not to get permanently sterilised.

“We have to respect people's knowledge and understanding of themselves. Doctors and clinical people, we come with medical knowledge, but we come with no knowledge of you as an individual.”

“When you bring together your medical knowledge and the person's knowledge of themselves, that’s when you get the best outcomes for the individual,” he says.

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