EP.206/ The Impact of roe v wade in the endo community
Trigger warning: Discussion about infertility and abortions.
Today doesn’t feel like the right day for normal scheduling.
Last week I wanted to take a minute to process the Roe v Wade verdict, and to deal with my own personal health issues, as the latter half of last week I was having heart tests performed for two days and was travelling back and forth to London, whilst not feeling too well as a result of the tests. I think all of us had info coming at us from so many different directions last week and I didn’t want to add to that, especially without having the time or headspace to process it all and actually think through what I wanted to say.
The other difficulty I face as an endo practitioner, is of course, the sensitivity of this topic within our community. I understand that discussions around abortion are hard, given that many in the community struggle with infertility, so this is a very difficult line to tread and in truth, because of the power of social media these days, I am worried that I’ll end up getting trolled or cancelled for this statement. So, before I proceed, I want to make it clear that I respect all views and opinions, even if they differ from mine - but the short of it is, that I was truly, deeply saddened by the Roe v Wade verdict this past week.
I don't believe menstruators should have more rights taken away from us - for the choices we want to make around our bodies to literally become illegal. I understand why some people may have differing opinions, and there are likely some of you listening who don’t agree with abortion and some of you who do, but to then take away choice, to make the decisions around our bodies illegal, that’s far more than just a differing of opinions, that’s exercising control over lives.
I am appalled, but not surprised, that despite everything that needs addressing in women’s health, that this is the topic that gets the most attention and that this is the driver that results in historical law changes. There are so many other health matters affecting women and menstruating people (or non-menstruating people who are marginalised, such as some trans men, for example) which need urgent attention; endometriosis treatment is a clear example, which has the very real potential to destroy lives.
Heart disease, which is one of the biggest killers of women in the US and the UK and yet is massively under researched in women and misdiagnosed, and if you tuned into my podcast episode a few weeks ago, you’ll know that it took until the late 1990s for women to be properly included in research on heart disease and that according to research, women are 50% more likely to be misdiagnosed than men following a heart attack.
Then of course, there’s the issue of maternal motality rates, especially among black, brown and Asian pregnant people. The rates of maternal deaths for Black pregnant people in the UK are four times higher than white pregnant people, and the maternal mortality rate for Asian pregnant people is two times higher than white pregnant people.
And another example are the barriers that our LGBTQIA community face when it comes to health care and their rights, and all of the prejudices that they have to face just to get access to the same treatments and services that so many of us take for granted.
The list of health issues that need this level of attention and debate goes on and on and on.
So often we are dismissed, and left to go decades without the correct medical treatment and care - care that should be a right to everyone.
These issues need debating. We need more rights, more medical attention, more political attetion, more world attention, on all of these issues that are leaving menstruating people not only with serious, life-altering conditions, but with higher mortality rates.
Instead, we are somehow in this position where choices about our bodies are being taken away from us, yet again.
I’m not sure how we are existing in a world where there is more uproar about someone having an abortion, than there is over thousands and thousands of unnecessary deaths of black pregnant people, or of trans people not being able to get the same level of care as a white cis-male (just listen to Cory’s episode on my show).
Now even if you don’t agree with abortion or it’s a sensitive topic for you due to fertility issues, which I appreciate, people with endo have higher chances of ectopic pregnancies and miscarriages. Now, there’s debate about whether the overturn will go so far as to affect treatment for miscarriages or ectopic pregnancy and I hope that it’s unlikely, but at least for now, the issue seems to be that right now, doctors and patients are confused as to where they stand and what’s actually legal, because some (not all) of the procedures and medications for miscarriages and ectopic pregnancies, are the same as a regular abortion. So the current issue is that treatment, which is sometimes life-saving, is being delayed because doctors aren’t clear on what they can and can’t do, and are needing to check with lawyers before they can proceed - and this is genuinely happening, I had one of my community members (my colleague community) share their experience of this a few days ago. Now, I won’t go so far as to pretend that I understand the extent of these new laws and changes, so I am not going to make any scare-mongering statements here about what will or won’t happen in the future regarding these issues, but as it stands right now, it seems that there is at least potential for delays in urgent treatment due to this mass confusion and vagueness.
So you can see, that this has the potential to have a wide reaching effect on so many pregnant people and people within our endo community.
Regardless of why you may choose to have or need an abortion, I believe you should have the right to access one. I can tell you that I have had endo clients who have had abortions, who have had miscarriages, who have had babies and who have had ectopic pregnancies, and each and every single one of them deserves the same level of rights as the others.
Additionally, so many of you have told me that once your doctor knew you didn’t want children, you were dismissed and wasn’t given the treatment or care you needed for endo. And that has been my experience too. Often within endometriosis care, the focus is on fertility, rather than quality of life of the patient. Fertility is prioritised over pain, fertility is prioritised over mental health, fertility is prioritised over someone’s ability to work. Now, I want to be clear that I know, very well, that care and treatment for endo is poor overall and all of us have faced discrimination, neglect, dismissal, etc. - it’s bad full stop for us all and there are only a handful of clinicians in the world actually giving us the care and treatment we deserve. But, from the pattern I see - I can’t back it up with research because it doesn’t exist - but what I see is that fertility is prioritised over quality of life.
For many of you, that of course might be your priority - fertility might be your number one challenge with endo and your absolute dream, and I fully appreciate and respect that, but for others, it may not be - but that doesn’t make us any less deserving of care, that doesn’t make our lives and our bodies less valuable and yet that’s what’s often what’s communicated to us. For others who don’t want children, their ability to live a normal life where they can hold down a job and have meaningful relationships may be their priorities, and yet they don’t always get the same assistance, attention or care, which may result in them not being able to achieve those.
I can say with absolute certainty, that I couldn’t do this work if I had chosen to have children, work that I hope, has been important to many. But if you judged my value, and the value of my work by the care and attention I have received from endo specialists once they knew I didn’t want children, you would think that my existence, my quality of life, my ability to do this work, didn’t matter at all. I had to fight alone, to be able to be well enough to do this work.
So the subtle message from these practitioner can often be - your body matters if it’s child bearing and if it’s not, it doesn’t.
And so the overturn of Roe v Wade just takes this further. Now people with endo who don’t want children, who are living in these states, who may find themselves in need of an abortion, are even less able to access the care and treatment they need. Not only are they potentially less supported by their endo specialists, they now are at risk of facing prosecution, going to extreme lengths to access an abortion or living a life that they hadn’t chosen.
And they may also find themselves stuck, unable to share what they’re going through. Abortion is already a taboo subject. Despite the breakthroughs we’ve had in recent years about talking more publicly about sex, menstruation, gut health, mental health, etc. we still don’t talk much about abortion. And in our community, understandably so, these discussions can be even harder, because whilst some of us may be deciding whether to have an abortion, some of us are deciding whether to have IVF and many people don’t want to be insensitive and may also be scared of the reactions of others. So, there is the potential that many in our community are going through abortions alone, and are in need of a space to share their experience, even if they chose that experience, they may still want to talk about it, but are in fear of judgement or of hurting others - and now we have this added layer, that an abortion may actually be illegal. That having an abortion can make some of us criminals.
Living with endo is already hard enough, without this to battle and to live in fear of as well.
So, as I close on my thoughts and what I have been contemplating this past week, I want to reassure you that I support everyone's personal decisions around their body and healthcare - whatever their choice.
I believe everyone should have a right to that choice.
This is always a safe space for you, whatever your beliefs and desires. Whether you have plans for 10 children or none at all, whether you’ve had an abortion or you’re struggling with infertility, this space is for you.
And lastly, I want to be clear that I am not an expert in this. I am not a doctor, I am not a lawyer, I am not a politician. My words today come from my experience of witnessing so many endo people go through miscarriages, abortions, births, fertility struggles, dismissal, prejudice, discrimination and so on. So, I am not saying my views or opinions are fact or are 100% right or accurate, but they are my views and opinions based on what I have witnessed in my time within our endo community.
And if you don’t agree with what I’ve shared today, that’s okay! We don’t have to agree, but I hope that my work can still support you regardless of whether we agree or not.
I know this is such a difficult discussion for us all in the endo community, and I hope that I have handled this situation delicately. This will have been a hard week for many of us, for many different reasons, so I'm sending love to you all.
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