As we enter the last few days of March we are also at the end of Endometriosis awareness month. Endometriosis (en-doe-me-tree-O-sis) is a painful condition in which tissue that looks like the endometrium that normally lines the inside of your uterus grows outside of it. Endometriosis affects 3% to 10% of people with a uterus of reproductive age, with 25% to 50% of people with uteruses suffer with infertility as a result of it. It affects 40% to 80% of people with uteruses who also suffer from pelvic pain. It affects people of all races in the same way.
I am one of those people. Endometriosis as been the bane of my existence and I’ve likely to have had the disease since I was 9 years old. Endometriosis is stigmatised and it can be very hard to find the right people who will take your symptoms seriously. More often than not it can take a patient 7 years to get diagnosed, for me, it was 17 years. By the time I had got the medical attention I had needed – it was too late. In 2018/19 I lost my battle to keep my uterus, and my reproductive organs. My health was deteriorating, I was in constant pain and continuously sick. My blood loss was substantial and a decision had to be made as to whether I wanted to keep my organs or not make it to my mid 30s.
As I’m 31 at time of writing this, the choice I made has kept me alive. But it was not without its cost, and at this time of year I like to step forward and help people who may be suffering too to get the interventions they need quicker than I was afforded. Interventions that can thankfully, be helped with the aid of health tech and tools.
Common Myths and Misconceptions
It’s important if we’re going to talk about Endometriosis to talk about the myths that come with it.
Myth – It’s all in your head.
No, it’s not. Pain is real, and what you are feeling and suffering is real. Using tracking apps like the ones listed below will help with the burden of proof aspect of getting the health that you need.
Myth – Trans people cannot get endometriosis.
If you have a uterus, you can get endometriosis. It does not exclude people who have transitioned, if you still have a uterus in your body, you can still get endometriosis.
Myth – Young people cannot get endometriosis
If you have started your period and have a uterus, you can get endometriosis. Age does not discriminate. However, it is important to note that once you hit menopause your symptoms are likely to decrease.
Myth – Black/POC/Minorities cannot get endometriosis
That is false. Anyone, regardless of race or ethnicity can get endometriosis if they have a uterus.
The Tech That Helps
I covered some of the best menstruation apps in 2019 here on Phandroid, and a lot of those recommendations still stand. However, a refresher is always good with the angle on what to track specifically for those with endometriosis.
Endometrix is a tracking app that knows that your endometriosis journey is as personal and unique as you are. It is a tracking app that allows you to visualise and understand what is happen with your mentstrational health. It doesn’t have full ovulation tracking or other related tools that are outside of your endometriosis journey. So for those who are looking for a standard period tracker, this may not be what you’re looking for.
Clue is a menstruation first app that has evolved a lot over time. I have been a user since its beta, and it is the one that I recommend to the most people. I’ve found its the most robust and well supported out there both in terms of its team and its research first focus approach.
Things worth tracking in the app when you are tracking for endometriosis would be.
- Heavy Periods
Outside of typical pain relief there has been quite a few advancements with pain relief technology to help you get the relief you need. Of course, its worth repeating that pain is its own journey, and your individual needs may differ.
Kailo is a kickstarted project now turned into a full fledged product and is one of those items I wish I kept one in every room. Kailo is a reusable patch that works by using your own electromagnetic field to interrupt the pain signals that are sent from your neurones to your brain. It works in a similar way to the ways TENS machines work, except instead of using currents to interrupt the signals the patch is used to “catch” the signals as they come out.
While it may not work for everyone, there is a 90 Day money back guarantee on its products so if it doesn’t work out for you – you can always get your money back.
Magic Gel is a low-tech high-tech solution for those who are looking for reusable patches and solutions for common chronic ailments. For those who do suffer, we know for sure that finding a quality gel pack that is reusable and that conforms to the shape of our bodies is a holy grail find. It’s worth a look at for those who suffer with endometriosis or anyone who finds themselves suffering from migraines or other ailments.
Mental health is a complex and difficult thing to talk about. The stigma of mental health aside it is very common for people who suffer from chronic pain to also suffer from depression. These symptoms and feelings can be quite cruelly dismissed by those who also suffer from other illnesses or by the general populous who just deem endometriosis as being simply “period pain”. Therefore, it is very important that you find a sympathetic medical team who understand what you are going through first and foremost. It is often hard and seemingly unending to find a doctor and therapist who hears and sees you and what you’re going through, but I promise you it is worth it. As I said, my personal journey took me 17 years to find the people I needed – and while I pray that you, dear reader, will never have to spend that long searching I promise it will be worth it.
Don’t give up. You are worthy of being heard, seen, validated and helped exactly as you are right now.
Cureable is a web app, iOS and Android app that focuses on chronic pain. It’s a subscription based service (with a 7 day free trial and then an offer of a half price annual subscription) that addresses pain from all angles using a combination of pain science education and research-backed treatments. The program claims to help you connect the connections between what’s going on in your brain, body, and life so you can obtain a complete picture of what’s causing your symptoms and how to alleviate them.
Curable understands that chronic pain is terrible and is caused by true physical changes in the body. The suffering that is being experienced is not “imaginary.” Discomfort can often begin after a physical accident that results in tissue damage, yet the pain may persist as the tissue recovers. Diagnostic testing often yields inconclusive results when it comes to determining what is causing someone’s chronic pain.
So, if you are interested in connecting with a community that understands chronic pain while learning about your pain and how to manage it, Curable should be on top of your list.
BetterHelp is an online counciling service making therapy accessible to people from all over the world. I have been with BetterHelp now for nearly 4 years with my therapist, and I couldn’t imagine what my life would be like without my therapist now. She has been my backbone through many of life’s changes. Finding therapy can be challenging, difficult and expensive but BetterHelp has various options to not only find a councillor that meets your personal needs, an ability to change your councillor on the fly if you don’t click with them. They also provide financial options for those who cannot pay for full plans making the platform as financially accessible as humanly possible. The platform also provides various ways to contact your therapist. As someone with Asperger’s syndrome, having the option to write to my therapist as well as have live chat sessions with them have been a blessing for those times where I have been too overwhelmed and in pain to endure a physical meeting or phone call. The platform has been truly beneficial for me in terms of managing my pain and helping me make the most out of my life.
You are worth investing in.
You are worth finding the right help and the right solutions for you to make your life better.
You only ever have one life to live, live for yourself and find the things that bring you joy.
On the days the pain and burden feels too much reach out to those who love you, and I promise you you are loved.
Use as many tools as you need to make your life better.
If they’re not you, they don’t know.
You’re journey is unique and worth sharing.
Find communities of people who care like #spoonie, #chronicpain on Twitter, or follow myself at @thisisspecious for more resources and chats about Chronic Illness.