Endometriosis is a truly debilitating condition affecting 1 in 10 women in the UK, with many more suffering from the disease unaware due to limited methods of diagnosis.
When I was diagnosed in March 2016 it took me largely by surprise. I had heard of the condition but decided that I didn't want to entertain that I might actually be a sufferer. At the time my husband and I had been trying for a baby for near on 2 years and the thought that an actual medical condition was aiding to scupper our dreams was all too much to take.
When the endometriosis diagnosis came I felt mixed; thankful to know I hadn't been going mad all these years, sort of knowing that something was up and that the pain I would so regularly experience just couldn't be normal. And angry. Angry that for years I had been told that it was normal for periods to hurt, that my upset stomach was because of IBS or that a routine smear test would leave me in agony.
A woman dealing with endometriosis has even more to contend with than just the inconvenience or perhaps short lived pain around her menstrual cycle. Speaking from experience, the pains I alone encounter range from sharp stabs and hot spiky scrapes within my pelvic area to dull dark aches radiating down my thighs. The pain renders me next to no good for at least 1-2 days a month, usually around the time my period initially starts. I am doubled over, my breath becomes shallow and at times I feel like I will pass out. I also get pains, although not as severe, around ovulation, so mid way through my cycle. But no two cases of endometriosis are the same, and even in the grading of the disease (stages 1-4) Woman A who is classified as stage 3 will very likely present with very different symptoms to Woman B of the same classification.
A chronic illness is a heavy burden to bear, especially one with no cure. So here is a short guide on how partners, friends and colleagues can support someone with endometriosis:
1. Normalise the conversation around it
Let’s start here shall we. Very little is still known about endometriosis, largely I believe because it has something to do with a woman’s bits. Until we discuss it, listen to those suffering and push for help it will remain a concealed condition. Since I was diagnosed I started writing about it, sharing on social media that I had it. My husband interviewed me about it on his podcast. In taking these actions we uncovered a few more people in our social circle alone who were affected by the disease. This in my opinion is especially important within the workplace. 1 in 10 women where you work have endometriosis. I have had some really difficult scenarios at work, mainly before my diagnosis when I had no idea what was going on. I would leave meetings without explanation to go and sit in the loo doubled over. I would call in sick with made up excuses because blaming my period seemed futile. Trying to be professional when you are in agony is a whole new level of stress and pressure. Employers and colleagues should be made aware and measures put in place to support those affected.
2. Learn about the condition
If you can’t accurately describe what endometriosis is but it is something someone very dear to you is dealing with, it’s time to have a read up both of medical literature but also of personal accounts of the condition to get an understanding of the type of pains and discomfort that might be experienced. A good place to start is endometriosis UK.
3. Understand her cycle
In an age when everything is trackable on mobile devices, surely it’s not out of the realm of possibility to ask your partner, friend, daughter about their cycle. Instead of looking at it as a way to know when to keep out of her way, it’s a time when perhaps you should be looking to be more of a support to her than ever.
4. Offer increased support and care
From carrying things, doing the shopping, letting her have some time off from chores. Run her a bath. Encourage her to get an early night. Listen.
5. Research alternative therapies and measures
I have personally found a number of alternative therapies really useful in the management of my endometriosis symptoms. I turn to acupuncture including moxa therapy and administering castor oil packs to myself. But I also made changes to household cleaning and personal hygiene products too to lighten the toxic load in and around me. See more examples here.
6. Dietary changes
Endometriosis is an inflammatory condition, so could some simple changes to your household food choices help to minimise some of the symptoms? For example, try cutting down on sugar, introducing Omega 3. It’s worth speaking to professionals in this area to see what could be done.
Something I learned from the author of ‘Endometriosis: A Key to Healing And Fertility Through Nutrition’, Dian Shepperson Mills when I visited her shortly after my diagnosis, was that without a gut that works soundly, healing is largely not possible as no matter how well you eat, it comes down to what the body can absorb. So some simple diet changes to support the gut could really aid some internal healing and start to correct immune system responses. Seeking professional medical advice is recommended to get a personal plan together.
7. Understand if plans change
Endometriosis is, aside from other things, utterly exhausting and has a knack of flaring up at really inconvenient times. Weddings, big presentations at work, parties, get togethers. If someone you know cancels plans last minute, try to understand the reasons why and see if plans can be tweaked or rearranged.