Endo Shouldn’t Be Like This

Endo Shouldn’t Be Like This

by | 21 Mar, 2022 | Our Blog

by Rimu Bhooi

It’s Endometriosis Awareness Month, and I’m sitting in bed, recovering from a concoction of medications in my system – Morphine, Sevredol, Bisacodyl, Ondansetron, Pregabalin, Panadol, Norethisterone, Nortriptyline, Omeprazole, Codeine, and Sertraline. 

I’d like to say that recovering from hospital is a random occurrence, but this is my life these days: a walker to help me make it to the loo; a pill container and a constant supply of pain meds; a microwave in my bedroom for wheat packs; and, hospital visits galore. 

Ever since I was diagnosed with Endometriosis three years ago, I have lived much of my life from bed. I genuinely thought things would get at least a little easier, but I’ve learnt that Endo is a beast unto itself.

The fainting and pelvic pain began when I was about ten. Then came the headaches, dizziness, painful periods, and pain. It took seven years of asking my GPs to help, being confused by how mates could carry on while bleeding, trying to convince the adults around me that I really didn’t feel well and was in a lot of pain. Finally, after I turned 20, I started making some actual headway on getting answers. I had a private gynaecology consult, and a referral was sent to the Waikato Hospital. I was put on a waiting list for surgery. I was hospitalised so many times between the pain worsening and the actual surgery. It began taking over my life, and now I know it’s something I’ll live with forever. 

If you don’t know much about Endo, I’ll explain: it’s a chronic whole-body inflammatory disease. Tissue similar to the lining of the uterus randomly grows in other places, commonly in the pelvis, but it has been found in every organ in the body. This tissue thickens, breaks down and bleeds like normal period tissue, but it’s in the wrong place. It has nowhere to go. This can cause pain with periods, urination, bowel movements, sex and PMS. Endo symptoms are wide-ranging like diarrhoea, constipation, nausea, sub-fertility or infertility, fatigue, recurrent UTIs, abnormal bleeding, and even chronic pain throughout the body.

There is no cure, but the best management appears to come from a mix of medications, supplements, complementary therapies, good nutrition, sleep etc. The only way to diagnose Endo is through laparoscopic surgery. On average, globally, the wait time for diagnosis is seven to ten years, a devastating and tragic statitstic. One in ten people with uteruses have Endo, 120,000 people in Aotearoa alone. Yet very few know about it, and what they do know is mixed with misinformation. I have been told to ‘go on birth control to heal it,’ ‘get a job and that’ll help,’ ‘stick it out, it’s normal,’ and even ‘just get pregnant!’ None of these ‘helpful tips’ is true because there is no cause, no cure, and anyone telling you otherwise doesn’t know what they’re talking about. It is chronic. It can be removed during excision surgery and still come back. It comes with co-morbidities. 

For me, those co-morbidities are mostly gynaecological. I was recently diagnosed with Adenomyosis, but I also have Hypertonic Pelvic Floor dysfunction, depression, anxiety, chronic fatigue and pain. Endo rules my life, and I’m only just coming to grips with the full extent of its effects on my life, study, and work. 

When reflecting on all this, and on just how much time, money, and energy I’ve spent fighting for a diagnosis and then fighting for treatment and pain relief, I’m sad, but mostly I’m just really angry. We deserve better; we deserve support and answers. Endo is debilitating and disabling, but it doesn’t have to be. We need people to listen to our experiences and change the medical system, so that it centres patients and helps us. Instead of, you know, leaving us sobbing on the floor in the foetal position, wondering what we did wrong.

The Right to Choose is not Enough: A Cautionary Tale

The Right to Choose is not Enough: A Cautionary Tale

by | 18 Mar, 2022 | Our Blog

by Tracy Morison

Abortion on request has been legal for more than 25 years in South Africa. Yet, despite the country’s highly liberal laws, every year pregnant women die needlessly due to complications from unsafe, illegal abortions. These deaths make up about a quarter of the official avoidable pregnancy-related deaths counted by the Government, and they have increased in the last decade. Unfortunately, it is quite likely that some deaths related to unsafe, illegal abortion go unreported, so the number could be higher. Official estimates suggest that more than half of all abortions are informal, illegal and unsafe.

 Abortion stigma is a major barrier to access. Public sector nurses frequently chastise patients seeking an abortion rather than giving birth or for ‘using abortion as contraception’, or publicly humiliate them, or disregard their privacy and confidentiality. Some women would rather risk using a private but illegal service than become a social pariah among their communities or families, especially if they are young. 

“The underlying causes of morbidity and mortality from unsafe abortion today are not blood loss and infection but, rather, apathy and disdain toward women” 

(Grimes et al 2006, The Lancet).

Worse, the facilities that are supposed to offer services just don’t. Sometimes this is because no one is willing to offer services. As conscientious objectors they don’t have to. Sometimes there is a lack of political will to provide the support needed to keep a controversial healthcare service running, at the risk of alienating conservative voters.

At last count less than half of the clinics the government says should be available actually are. Some are under-resourced and some cannot find staff who do not conscientiously object. Clinics that are open are overburdened. A recent news article reported that pregnant women had to queue overnight at one clinic. Many people  simply don’t have the time, money, or freedom to travel to get public care or to access private care. Their only option then becomes an illegal abortion, which is sadly far more accessible. South African activists say that this situation is maintained by a conspiracy of silence.

The point of the story is this: the right to choose alone is not enough. They remain words on paper if they cannot be exercised.

The point of the story is this: the right to choose alone is not enough. They are just empty words on paper if the right cannot be exercised. The government must be held accountable for maintaining a system that supports people’s ability to exercise their rights and make choices about their reproductive lives.

So far, in Aotearoa New Zealand, we have seen some promise of this in the development of the new Telehealth Abortion service, DECIDE, which will increase access to care by allowing early medical abortion at home. Also promising is the strong cross-party support shown in the passage of the safe areas Bill—which will regulate harassment and intimidation of people accessing and delivering abortion care.

The right to abortion as healthcare was a hard-won right and one that cannot be taken for granted. It is imperative that services are literally, and not just theoretically, accessible; that service standards are upheld, offering patient-centred care; and that the rights of those who object to abortion do not trump the rights of others who choose it. It is up to us to speak up if something is not right or to report problems and concerns. It is up to us to ensure that we do not become part of a conspiracy of silence that makes our right to choose meaningless.

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 There are only data collected on cisgender women at present.

 

Lack of Abortion Care Can Kill

Lack of Abortion Care Can Kill

by | 3 Mar, 2022 | Our Blog

by Terry Bellamak

One of the most transparently ludicrous claims anti-abortion types have made in recent years is that ‘abortion is never medically necessary.’

Tell that to Savita Halappanavar, who died of sepsis after being denied abortion care in Ireland. Tell it to Valentina Miluzzo, who died of sepsis after being denied abortion care in Italy. Tell it to Agnieska T and the other unnamed woman who died of sepsis after being denied abortion care in Poland.

None of them had to die. All of them had treatable medical conditions. But the treatment required the abortion of their planned, wanted pregnancies.

Restricting abortion care leads inevitably to pregnant people dying. When doctors risk imprisonment for allowing an abortion, they are incentivised to wait until the patient is close to death so that authorities don’t challenge their decision. 

But even less stringent restrictions can put pregnant people in danger when abortion is so stigmatised that no one dares talk about it.

Few people know about it, but New Zealand has had its own experience with unnecessary death for lack of a termination.

Back in 2006, before our abortion law was reformed, the Health and Disability Commissioner (‘HDC’) commenced an investigation into the death of Ms B in 2004.

Ms B had a heart condition called aortic stenosis. This means her blood flow from her heart to her body’s main artery, the aorta, was partially blocked. She had an aortic valve replacement in 1997, and recovered. In 1999 Ms B gave birth to a son.

In 2004, after seeking advice from her cardiologist and receiving the all clear, Ms B again became pregnant.

Twenty weeks into her pregnancy, Ms B’s aortic stenosis returned. When she heard the news, Ms B became tearful and said she wished she could terminate the pregnancy, but didn’t think it was possible so late in her pregnancy.

In reality, termination of Ms B’s pregnancy would have been approved almost instantly had she been able to put the question to certifying consultants. Under the Crimes Act 1961 in force at the time, termination after 20 weeks was legal to ‘save the life of the woman or girl or to prevent serious permanent injury to her physical or mental health.’

But none of the doctors involved with Ms B’s care, nor her midwife, were prepared to discuss abortion with her. The HDC report refers to their actions as ‘delicately side-stepping an awkward issue.’ Given the clarity with which Ms B expressed her desire that medical staff not ‘ me be a baby incubator and then letting me die,’ it could also be characterised as obstruction.

Ms B was hospitalised. A termination followed by valve replacement surgery could have saved her life, even at this point. But her medical team insisted she continue the pregnancy. In the end, her condition deteriorated rapidly, and both she and her baby died during emergency surgery.

What killed Ms B?

Was it the silence around abortion that made ignorance of the law (and how certifying consultants applied it) so typical? Was it a kind of preciousness on the part of Ms B’s cardiologist, obstetrician, and midwife that would not let them acknowledge Ms B’s concerns for her own life? Were they full-blown conscientious objectors? Or did their moral or professional arrogance obscure the enormity of letting a woman die in the hope of saving a foetus?

It seems clear that the reason Ms B’s medical team did not listen to her was that she was talking about abortion. If abortion had been treated as normal health care, not covered in arcane legal restrictions and sexist shame, then Ms B and her family could have pushed back more effectively. Her medical team’s indifference to Ms B’s wishes could have received appropriate condemnation well before it turned up in an HDC report.

It seems clear to me that what killed Ms B was abortion stigma.

Nowadays, after law reform, a case like this is unlikely to happen. This is not only because we have a new law, but also because the debate around law reform put a big dent in abortion stigma, and established abortion as health care that people have a right to. But as long as abortion remains ‘controversial’, the battle is not over.

The Challenge

The Challenge

by | 17 Feb, 2022 | Our Blog

by Terry Bellamak

At the second reading for the Contraception, Sterilisation, and Abortion (Safe Areas) Bill, Kieran McAnulty issued a challenge. At the end of his call, he laid it down:

“If you’re going to vote against it – fine. Get up and tell us why.”

I wonder if any will rise to the challenge.

Opposing people being able to go to work or get health care without being harassed by anti-abortion protesters is a hard position to defend.

The MPs in question might go the route of many submitters to the Health Select Committee, who ignored the bill’s obvious boundaries and used the opportunity to attack abortion itself. Not unexpected, but not a very useful strategy, considering the fight for abortion as health care has been decisively won.

The work of the Health Select Committee has left them without even the fig leaf of hand-wringing over freedom of expression. The Attorney-General has made it clear he considers the current version of the bill limits freedom of expression only to an extent that is justified in a free and democratic society.

The new definitions of ‘protected person’ and the sorts of activities that the bill prohibits are narrowly defined. All areas will be bespoke, so that they will be as small as possible to achieve their objective.

(It will take months for the Ministry of Health to finely handcraft each one, which is not ideal. The process needs to be abbreviated. But that is a rant for another day. Soon.)

It seems probable that MPs who oppose the bill will do as they did at the third reading of the Conversion Practices Prohibition Legislation Bill and not make a speech, figuratively slinking through the ‘no’ door wearing a disguise.

In a way, this is good news. It is a signal of how the frame has shifted over the past 2 years. Abortion has taken its rightful place in the mainstream. Attacking pregnant people and abortion providers is now fringe.

The ‘no’ MPs will be explaining this vote for the rest of their careers. Will they come up with some reasons? Or will they take the path of least resistance and keep schtum?

Only time will tell.

Sept. 28: Global Day of Action in NZ

by | 28 Sep, 2014 | Event, Media Release, Our Blog

sept28

By Morgan Healey, ALRANZ President

On the 28th of September 2014, ALRANZ celebrates the Global Day of Action for Access to Safe and Legal Abortion. This is a campaign that began two decades ago in Latin America and the Caribbean and has gone global, with activists around the world drawing attention to restrictive and dangerous abortion laws in their countries. This year’s focus is on stigma and challenging the shame and silence that so often accompanies abortion, even when it is legal.

As the organisers of the 28th of September, the Women’s Global Network for Reproductive Rights (WGNRR) in partnership with the International Campaign for Women’s Right to Safe Abortion and La Campaña 28 LAC, stated:

The stigma surrounding abortion is complex and pervasive, as well as produced, reproduced and reinforced at individual, community, institutional, cultural, and legal levels. Entire communities stereotype, ostracize and discriminate against individuals who need and seek abortions, as well as women human rights defenders attempting to help individuals to access this human right.

 

It is our job as reproductive rights and justice activists to join in the global chorus to eradicate stigma – not just today but every day. This is not necessarily an easy task. Pervasive is an apt word as stigma manifests itself in subtle and insidious ways.

One example is the act of conscientious objections, where medical professionals are allowed to refuse treatment or care as the result of their own moral objections to abortion. Too often the focus is on the medical professional and their ability to exercise their right to not perform a medical procedure that they disapprove of. But what happens to the pregnant person forced to find help and assistance elsewhere? Is their care delayed? Does it create further stress and anxiety? Does it leave them more vulnerable in an unsafe relationship or environment? And how does this reinforce stigma?

This is the crux of the stigma issue – it not only erects barriers to care but it leaves women feeling as if their choices are amoral, wrong and detrimental. They carry the weight not only of their own lived experiences and the consequence of their choices, but also the gendered expectations of societies that associate ‘womanhood’ with ‘motherhood’. Being defined by your anatomy, which is also harmful to people who do not associate their sexed body with a certain gender (i.e. those who operate outside of and challenge cisgender culture), allows for the constant surveillance and policing of their reproductive choices. Stigma happens at both the macro and micro levels, with the (re)production of discourses that shame women while ensuring they self-regulate their actions, mostly by silencing their abortion experiences.

Turning back to conscientious objection, a false dichotomy is created whereby the virtuous doctor, governed by their ‘moral’ principles is juxtaposed with the errant pregnant person. This power imbalance is important in the perpetuation of stigma and the associate of abortion with shame and silence – it allows those in professions that are often revered and looked up the ability to define the line between good and bad. It provides a legal basis for discrimination and, as Joyce Arthur and Christian Fialla have argued for dishonourable disobedience.

This is one of the reasons the My Decision project is so important and why ALRANZ has chosen to focus on it for the 2014 global day of action – it names and allows for self-identification of those who would refuse care. It is shifting the discourse from a focus on women traversing the public health sphere to search for care and instead calling on medical professionals to provide information in relation to the reproductive health care they provide. It seeks to break down the barriers pregnant people face when they look to access these services and puts the onus back onto those who would object to be open and transparent about their beliefs.

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My Decision alone will not end stigma, but it is a vital tool in the attempt to counter the impact. Please join us today in trying to dismantle abortion stigma.

If you would like to be involved in or want more information on My Decision go to http://mydecision.org.nz

For information on the 28th of September campaign go to http://www.september28.org/

Check out this media release quoting Family Planning and ALRANZ’s Morgan Healey: NZ Abortion Legislation Restrictive.

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