Tips for managing endometriosis during the holidays

Here's our 5 top tips for managing endometriosis during the festive season

The Endometriosis Foundation founder and CEO, Carla Cressy speaks to Consultant Gynaecologist and Endometriosis Specialist at Oxford University, Martin Hirsch about endometriosis and ways of managing symptoms throughout the holidays.

Endometriosis is a chronic, debilitating condition, one that can cause lifelong symptoms often with much uncertainty and unpredictability. Endometriosis is not only a condition common, but it is also widely under-recognised and misunderstood, often making the festive season particularly difficult for those living with it.

Image description: Women pulling sweater over her head

The Christmas holiday is one we should all enjoy however, many of those living with endometriosis may find this time of year more challenging than usual, with less access to GP’s and for some, a long-anticipated wait for treatments.

Whilst it’s totally normal to feel the pressure of the festive period, preparing yourself for the big day can be stressful, but it’s important to try not to let this take its toll on your health.

I spent far too many years suffering from endometriosis symptoms at Christmas. One year I spent the entire day in my bed, clutching at a hot water bottle with a sick bowl in my hands, which is why I wanted to share with you some of my top tips to help you enjoy this time of year!

What is endometriosis?

Endometriosis (pronounced en-doh-me-tree-o-sis) can cause enormous suffering but remains understudied, under diagnosed and poorly treated. In the U.K. alone, it takes the average person 8 years to be diagnosed with endometriosis. In 8 years a student completes an entire cycle of school.

Endometriosis occurs when cells - similar to the cells that make up the lining the uterus (known as the endometrium) are found in areas of the body they shouldn’t be, usually within the pelvis. This tissue responds to hormone changes which is why every month the symptoms can be debilitating. For some people, they can experience symptoms all year round.

It most commonly involves the lining of the pelvis, the ovaries, and the cul-de-sac (the area between the upper vagina and the rectum), the urinary bladder, and the bowel, causing irritation, inflammation, the formation of scar tissue, cysts, bleeding, pelvic pain, and often debilitating symptoms, interfering with fertility.

The festive season is one we should all enjoy

It’s that time of year where we are surrounded by loved ones which can be both beautiful and fulfilling, but equally at times it can also be difficult, especially if not a single person understands what you’re going through.

I vividly remember the pressure of the big day, endlessly scrolling the internet for overflowing outfits to find comfort on the day. I'd give myself a pep talk of how best to avoid answering simple questions like ‘how are you?’.

At times living and suffering through endometriosis made want to overshare and tell people what I was going through, and I did. The responses were mixed and for some of those around me I knew they just couldn’t relate or understand as they’d never suffered with pain let alone the daily knowing pain of endometriosis. Sometimes I found it easier to lower my expectations to avoid disappointment. This is where I found myself leaning on support groups, saving the sharing for people who understand.

"There can be mixed emotions at this time of year for those on waiting lists for treatments and balancing the joy of celebrating with the uncertainty of when an operation might take place can be hard". Said Martin Hirsch, Consultant Gynaecologist and Endometriosis Specialist of Oxford University. "If the challenge of waiting for surgery or clinic with deteriorating pain is interrupting your everyday life, we in hospital need to know. The prioritisation for treatment is dynamic and balances both people’s waiting time and symptom severity". "There are people here to help and I suggest contacting these healthcare staff if you are struggling":

GP – Let your GP know your symptoms and the impact it is having on your life. Ask if they can write to your hospital asking for your care to be expedited.

Endometriosis specialist nurse – If you have support from an endometriosis nurse then please get in touch as many have extensive experience and will help progress your care.

Consultant’s secretary – The amazing team working alongside your specialist. Pick up the phone and speak with them to ask if there are any cancellations or extra clinics available.

Theatre scheduler – If you are on the waiting list for surgery this essential member of the team will be putting the theatre lists together. Stay in touch with them for updates, cancellations or extra theatre lists to help combat the back

As well as keeping in touch with your specialist team over the holidays, below we have listed our 5 top tips of things you may find helpful to enjoy the Christmas holiday as best as you can.

See below our 5 top tips to managing endometriosis during the festive period

Be prepared

The festive period, for me, is all about having fun, experiencing festive days out, shopping, eating and socialising, but this can be difficult if you’re going through a flare up, or if you're experiencing your normal daily pain. Being prepared can help the celebrations go smoothly. You can start by keeping track of your menstrual cycle, taking it upon yourself to know when and what days during the festive period you might need time to relax. Rather than feeling like you’re missing out, make the most of these days to get present wrapping, taking a long soak in the bath and overindulging in self-care.

Set boundaries

The festive period should be enjoyed by everyone, even if you’re not really feeling up to it. Remember it’s okay to set boundaries. I remember one year pushing myself too much, only to find I’d pay the price later that day, and for the foreseeable. Having endometriosis meant that I did miss out on life events and opportunities. I found being open and honest with myself helped, through my mistakes I learnt not to be afraid of saying no. Yes, it’s the holidays, but after all, we all need to be kinder to ourselves. Your health comes first and that should be our number one priority.

Connect

It can be difficult to speak openly to loved ones about how you’re feeling, especially when suffering with a life changing chronic, and for some, deteriorating condition like endometriosis. Often, people living with endometriosis have high expectations from others, whether that may be friends or family members, only when met with a lack of understanding, it can sometimes be received as a lack of empathy towards them and their experiences. Remember it’s not their fault, they just simply don’t understand. Believe it or not, support groups are at their busiest during the festive period, so why not reconnect or join a support group where you can (virtually) meet others going through similar experiences, helping you feel less alone.

Embrace your festivities

Having endometriosis can be challenging all year round, especially throughout the festive period. Having to keep up with social plans and events can also be exhausting, especially for those feeling unwell. If you find yourself feeling stuck indoors, why not swap that evening out on the town for a cosy warm night in with your loved ones. Without a doubt this time of year will be packed with Christmas specials to cosy up in front of. If you’re feeling up to it, why not suggest wrapping up warm and heading out for a boxing day walk.

Know your triggers

We’re not saying don’t indulge this Christmas, by all means enjoy yourself, but just be mindful of the foods known to make you feel unwell. Be mindful of bowel movements too, ensuring you’re regular for your ‘normal’, and stay hydrated, especially if you’re out walking.

For information about endometriosis and ways to get support, visit our website www.theendometriosisfoundation.org

Most importantly, have a wonderful Christmas and a happy and healthy new year.