Endometriosis is a condition affecting 1 in 10 women and people assigned female at birth.
It’s vastly misunderstood and underfunded. Most of us with the condition have experienced years of medical gaslighting, being dismissed and misdiagnosed before we got the answers we needed to move onto the next stage of our lives.
The condition can cause many symptoms, among them is excruciating pelvic pain, infertility, pain with bowel and bladder movements, painful sex, fatigue, the list goes on.
It was named one of the 20 most painful conditions – up there with heart attacks and kidney stones.
Endometriosis can disrupt every aspect of a person’s life, from their ability to work and earn money, to relationships, to mental health, there is nothing this condition won’t affect.
One of those areas is parenthood. From conception (between 30% and 50% of people with Endometriosis will deal with infertility), to pregnancy to parenting, for many mothers and parents Endometriosis remains ever present.
Whether it’s trying for a baby and not seeing those two lines that every person trying dreams of, or going through IVF with all of its highs and desperate lows, or even long before you start trying, the worries about whether or not you will struggle to get pregnant, it can cause a lot of distress and anxiety.
We are so often told that pregnancy is a ‘cure’ (there is no cure for Endometriosis). Told, even in our teens, that we should ‘just get pregnant’, that our symptoms will disappear… of course for most people this is not the case. During pregnancy occasionally people may have some relief but many others don’t and some even find their pain worsens – particularly when you have adhesions that are being stretched and inflamed. The ongoing pain and stress caused by this can really change someone’s experience of being pregnant and can increase tension and exhaustion during an already overwhelming time.
Then we have the parenting stage. Endometriosis, like many other chronic illnesses, can be debilitating. It can leave you bed bound, it can make basic tasks like making food or getting dressed unbelievably challenging. Now add a child into the mix and you can see how things might be difficult. A lot of parents experience guilt, for some it may be because they can’t always be as active with their kids as they’d like, for others it might be not wanting their children to see them in extreme pain or guilt if they’ve been in hospital for a while.
The important thing to remember though is that having a chronic illness, like Endometriosis, does not make you a bad parent, it does not make you lesser. Children thrive on love and support and attention and you can give your children that in bucket loads regardless of your health. And hey, if you have to have more movie days than other families, I doubt your children will be complaining! From watching families with parents who are disabled or who have chronic illnesses I see how their children have an incredible level of empathy and kindness, even as toddlers they show deep emotional intelligence, something that is really beautiful to see. They gain a set of skills that will serve them well throughout their lives.
I asked some mums who have Endometriosis to describe what it’s like parenting with the condition, many were similar to the one below:
“Hard, but not impossible. It’s taught my little girl such patience and kindness”.
For anyone currently going through any of the above, please know that you are not alone. There is such a wonderful online community of people who understand – I met my best friend online due to Endo! Lean on those people, surround yourself with love and support and remember that you are doing an incredible job. Your children are lucky to have you and if you’re on the journey of getting pregnant, all of your feelings are valid. If you’re ever struggling please do reach out.
It's about time that Endometriosis gets the awareness and support that it deserves. It’s about time that we teach young people about what is and isn’t normal when it comes to periods and women’s health. Change is needed and I will always keep pushing for our voices to be heard.
If you’re ever struggling emotionally or mentally with Endometriosis, the wonderful charity Endo Buddies have partnered with Shout to help you get free confidential support 24/7. You can text ENDO to 85258 at any time of night or day.
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