Ten tips for living well with endometriosis from the EUK Information Day.

July 24, 2017 / Endo Lady UK / 4 Comments

A little while ago I attended an Information Day hosted by Endometriosis UK in London. It was mainly aimed at newly diagnosed women and their friends/ families, but I thought it would be fun to go along to catch up with people and to hopefully pick up some new tips.

Image result for endometriosis banner long

Image credit: Endometriosis UK

I thought it might be useful to share some of the useful tips I picked up along the day for those of you who wouldn’t be there in person.

1- Find and build your tribe.
Having endometriosis is really rubbish, and can feel very isolating and frightening. Invest time and effort building up a support network of fellow endometriosis suffers (aka your ‘tribe’) as they are more likely to understand and relate to your struggles than your family and friends who do not have the disease. Fellow patients can also be an excellent source of information and advice. You can start building your tribe through local support group or online support groups.

2- Specialist nurses can be a valuable asset in your journey.
If you are being treated in a BSGE centre for endometriosis, there will be a specialist endometriosis nurse at the hospital whose role it is to support you and to advocate on your behalf. These nurses have a wealth of knowledge and experience about living well with endometriosis, and also have more time available than consultants to discuss your history, goals, and treatment options. If you are being treated at a BSGE centre, but aren’t offered an appointment with a specialist nurse raise this with your medical team.

3- You are the CEO of your body.
When you have a debilitating disease like endometriosis it can be easy to feel that you lack control over your body. However, we can exercise a lot of control over many of the factors that influence pain; such as sleep, diet, exercise, and stress. Take ownership of your body one step at a time and you are likely to start feeling positive effects. The Pain Toolkit can be a really useful starting point for this. As can keeping a pain diary.

4- Exercise is your friend.
It can be very gentle and take place at home. Start small and build up, but regular movement promotes general health and can help to reduce pain thanks to endorphins. Many women at the event shared their experiences and the consensus seemed to be around yoga, swimming, and pilates as particularly helpful.

5- Endometriosis is a highly individual disease.
There are no quick fixes or easy answers. What works some for some people won’t work for you, and vice versa. Don’t get discouraged. Take time to get to know your own body, and think through what matters to you before deciding on a treatment strategy.

6- If you don’t ask, you don’t get.
Whether it be a specialist endometriosis nurse or a referral to a pain management team, you’re often only likely to be offered services when you have directly asked for them. Do your research about what services are available, and make sure you advocate for yourself. Services are out there to be utilised.

7- Progress is being made to improve the patient journey….
During the Information Day the presenters discussed the new NICE guidelines for endometriosis which will soon come into force and will hopefully positively influence patient care. Other initiatives aimed at improving research funding for the disease were also raised. This is all really positive progress and shows that endometriosis awareness is continuing to grow. This can only have a positive impact on us as a patient community.

8- …But conversely, lots of the old myths still exist!
Lots of the ladies present at the Information Day said they had been advised by their doctors to have a baby or hysterectomy as a cure for endometriosis. The debate about the benefits of excision vs ablation surgery was also discussed. The take home message- see the most experienced doctor you can and view all information provided with a critical eye. You are the CEO of your own body after all, don’t do anything you’re uncomfortable with.

9- Endometriosis is a life changing illness.
Don’t let anybody undermine your experience or tell you otherwise. Yes it’s not cancer, and no it’s not likely to kill you, but it’s still a pretty big deal.

10- There is hope.
There were lots of women with endometriosis at the Information Day who have been diagnosed with endometriosis for a very long time, and who had learned to thrive despite the awful experiences they had endured. Carol Pearson gave a particularly inspiring speech which reiterated that sometimes you don’t ended up living the life you would have planned for yourself, but that life can be one hell of adventure anyway. Oh, and she also reminded us to keep shouting loudly about endometriosis whenever you can. Change can and will happen for endometriosis, and we have such power to bring that about from within our community.

I hope this was useful. Sometimes it’s good just to reinforce the important tools that we know, as knowing and doing can be two separate things! I’d also love to hear your single top tip for living well with endometriosis!

Love,
Claire
xxx

March is Endometriosis Awareness Month: This was mine in 2016.

March 31, 2016August 10, 2016 / Endo Lady UK / 2 Comments

March has whizzed by and is almost over, which means that Endometriosis Awareness Month is also drawing to a close. I absolutely LOVE awareness month as I feel justified in shouting about endo even more loudly than usual (this disease needs all the shouters it can get as far as I’m concerned) and channeling my energies into positive activities rather than feeling sorry for myself. With this in mind, I thought I’d give you all the lowdown on what I’ve been up to for the last few weeks.

Worldwide Endo March
This was the second endo march I have attended in London, and I enjoyed even more than last year. There was a great turnout and people really made the effort to wear yellow and bring banners etc. We turned central London yellow and made a real impact, it was breathtaking to see- I felt quite emotional. I made a poster with a part of my own story on. It said:

I ASKED FOR HELP FOR 14 YEARS WHILE ENDOMETRIOSIS WRECKED MY BODY AND JEOPARDIZED MY FUTURE!

#TooLong #1in10

One of the benefits of my poster was that it acted as a talking point, enabling lots of women approach me to share their own endometriosis stories. I talked to older women who had lots of experience, women who had undergone hysterectomies, and newly diagnosed teenagers. I always love meeting other women with endo. Even though I wish that none of us were sick, it helps me feel better understood and less alone. I’m not crazy when I am with them, my ‘normal’ is reflected in theirs.

The march made me realise how far I have come on my chronic illness journey over the past year. At the 2015 event I was newly diagnosed, frightened, and ridiculously ill as I tried to sort out a referral to a specialist to have the surgery I so badly needed. This year I am 7 months post-surgery and felt much healthier, better informed, and hopeful about the future, allowing me to focus on meeting people and raising awareness rather than stressing or seeking information from other about treatment options and experiences.

My mum and husband joined me on the day and we marched alongside endosisters from my Hertfordshire support group, which meant the world to me. My mum especially, as she is also chronically ill with rheumatoid arthritis, but she battled the punishingly long (or was that just me? My fitbit said I’d walked over 16,000 steps at the end of the day!) walk and made it to the finish line. I was so proud of her and thankful that she was there.

Myself and Dr Martin Hirsch. Photo credit: @martinhirsch100

How is this possible- I’m a spoonie! I was so exhausted the next day!

I have also been collaborating as a patient representative on a research study led by Dr Martin Hirsch at Queen Mary University of London. As we were both at the event we were able to meet up and chat in person (a nice change from emails) so that was great too and enabled much interesting endo-chatter.

To be brutally honest I was feeling a bit sad before the endo march as I had invited loads of my friends to come along to but none of them did. Some of them wanted to be there but had very valid reasons why they couldn’t be, and I guess others just didn’t want to. But that’s OK. I realise endometriosis is my battle and that most people cannot understand it unless they’ve lived it. On march day itself those negative feeling were washed away and I was so grateful for the support networks I do have.

‘Endo What?’ European premiere- London

I have been waiting impatiently and super excitedly for this documentary to be released for months, and jumped at the chance to get tickets for the London premiere as I live a short distance outside of the city. I had donated to their fundraising campaign via Indiegogo some time ago, so I knew that a digital download of the film would zoom into my inbox at some point. However, I felt that being able to watch it with other endo sufferers would be a vital opportunity to learn and network- both of which I think are vital for taking control of your health and managing your illness effectively. I can’t imagine opportunities like this will crop up often in planet endo, and I’m not a person who like to miss out. It was worth the MAJOR energy crash that followed the next day.

Again, Mr B was by my side- dedicated and lovely as he is, and we met up with a couple of friends from my support group. I enjoyed the screening immensely, and thought it was accessible and informative- it is indeed a ‘game changer’ as it bills itself. If I’d have watched it in school I might have saved myself years of pain and heartbreak- but never mind, I can’t change the past. I’ve read about endo A LOT and so feel pretty familiar with the workings of the beast, so there was nothing groundbreaking in there that I wasn’t aware of, but it was a good refresher course and great for Mr B to learn some new things too.

The panel discussion afterwards was so interesting and I wish it could have gone on for longer- but I thought it was able to explore some of the trickier claims made in the film (e.g. that ‘‘one surgery done well” should be enough to treat endometriosis) with greater nuance and depth. I’ve noticed that one thing that crops up a lot wherever I am is that people aren’t always aware about the UK specialist endometriosis centers which concerns me as they are so important for accessing appropriate treatment, especially in severe cases. In case you need it the link for the centers is here, do share it loudly and widely with your fellow endo-sisters should the opportunity arise. Being treated by specialist who actually knew a thing or two about endometriosis has really turned my life around for the better, and I’d like everybody to experience that.

Media
I noticed a call out on my Twitter news feed to speak to a women’s health journalist about living with endometriosis, so I offered to participate in the article and was invited to share my story. Every article/video/ social media post published helps to chip away at the stigma and silence surrounding endometriosis, so I was pleased to have the opportunity to use my terrible past for something so positive. On a cheeky side note, it’s great because I gave a fairly long interview and she used the bit where I was passive aggressive about my GP-haha! You can read the full article here.

Some may say I’m addicted to Twitter. I’d say I’m just dedicated to raising awareness…

On twitter, I also hit a tweeting milestone of 2000 tweets about endometriosis. If you don’t already follow me on there, please do and come say hello! 🙂

So that was my endometriosis awareness month. It’s been pretty busy. To top it off I’ve been getting stuck into my new advocacy role for Endometriosis UK and am really enjoying its challenges and rewards. I would LOVE to hear what you have all been up to! Did you attend an endo march? Have you watched Endo What? yet? Have you been shouting from the rooftops or turning your social media yellow? Whatever you’ve been doing please keep up the good work!

Love,
Claire
xx

Mission: The healthiest sick girl.

January 20, 2016August 10, 2016 / Endo Lady UK / 15 Comments

I have a new mission: I want to be ‘the healthiest sick girl’.

I know this may sounds strange to many people, but I bet if you’re reading this you have a chronic illness and so it won’t sound strange at all. Over the past year I have had a lot of people in my life say things to me along the lines of ”you are just so unhealthy aren’t you?” when I’ve rocked up to work looking like death for the millionth time. But nothing could be further from the truth. When you have an inflammatory and progressive disease like endometriosis, prioritizing your health really becomes really important, much more so than other twenty-somethings who often can and do take their body for granted. That means eating better, sleeping more, exercising smarter, and managing your stress with precision. If you don’t you can expect some major payback with pain and/or fatigue.

It has taken a lot of work, but I think I’ve now truly accepted that I have a chronic illness and will experience some level of pain and fatigue for the rest of my life. That was my entire 2015 really, coming to terms with this new and unexpected reality; lots of therapy, tears, and pizza was involved. I’m ready to start moving on now. I want to be as healthy and strong as I can be, and to start working towards my life goals again. To do this I need to be as well as possible. My health will never be perfect, and this journey won’t be easy, but I am ready for this fight now.

To succeed at being the healthiest sick girl, I have decided to make some goals in the following areas:

Nutrition

I’m so over ”the endo-diet”- at least in its full form. As I have mentioned previously it’s way too restrictive for me, and causes me a lot of anxiety and self criticism when I stray from it’s approved food groups. From now on, I am all about nourishing my body as best as I can with an abundance of healthy foods, rather than focusing on the foods that are ‘forbidden’. I hope this will mean that I enjoy cooking and eating again, since food is one of the great joys of life. It’s all about balance! I will focus on two goals in this area:

1.Adapting meals that I love to make them as nourishing as possible: Healthy eating is so hot right now, so with some googling and new cookbooks (I recommend Lucy Bee, Deliciously Ella, Jamie’s Super-foods, and Hemsley & Hemsley) I’ve learned that I can make all the foods that I love, and keep the spring in my step, by reworking traditional favorites with healthier ingredients. We have endometriosis- that’s enough to deal with without depriving ourselves right?! It breaks my heart when I hear women say they have given up their most loved meals and foods. Making your food from scratch often ups the healthiness anyway since you can use better quality ingredients than supermarkets/takeaways and can leave out any nasties. The photos below are some of the things I have made recently:

My favourite cacao pancakes– gluten/diary/refined sugar free.

Vegetable chilli with brown rice, guacamole and sour cream. Lots of spices make this so tasty!

Sweet potato chili with brown rice, guacamole and sour cream. Lots of anti-inflammatory spices make this so tasty!

Every Sunday I make soup to take to work over the next week for my lunches.

Hot chocolate with almond milk and organic cacao powder.

2. Upping the amount of organic foods that I eat: There is plenty of evidence regarding the negative effect of pesticides on hormone regulation. I now have a weekly organic fruit and vegetable delivery that really takes the hassle out of this, and to my surprise it hasn’t broken the bank.

Organic fruit and vegetable delivery encourages me to get creative with new recipes.

Exercise

Working out when you have endometriosis (or any chronic illness) is really hard. I’ve written about this before, but I do believe that with some forethought and planning exercising is possible with endometriosis and can help to manage your pain. This year I am aiming to achieve the following goals with my workouts:

1.Higher frequency and consistency: I want to do some physical activity each day, even if it means going for short walks or swims rather than sweating it out at my boot-camp classes.

2.Do more of the fun stuff: I have joined a Zumba class, as dancing is something I have loved since childhood. It feeds my soul, makes me smile, and the hour goes by so much quicker than at my circuits class! Finding an activity that you love is the key to fitness success!

Products

This area is all very new to me post endometriosis diagnosis, but wow there are a lot of nasty chemicals in the beauty and household products that we use! Many of these chemicals can act as powerful hormone disruptors, which is clearly not good news if you have a hormone-dependent condition such as endometriosis!

I’m not being militant about it, but I am making the move to do the following this year:
1.Be as natural as possible in the products that I use: Last year I switched all of my cosmetics to the Bare Minerals line, and have been really pleased with the results. I am also a big fan of organic extra virgin coconut oil, and have been using this for a range of beauty needs such as a hair mask, lip balm, deodorant, shaving gel, and bath soak! Such simple switches but hopefully they will help promote my health in the long term.

Coconut oil is a great natural beauty alternative. I use it as as a hair mask, moisturizer, shaving cream, lip balm, and body scrub.

2.Conduct further research for this blog: I will be posting about this topic in greater depth in the near future so do keep a lookout if interested!

I have deliberately labelled these targets as ‘goals’ rather than ‘new year resolutions’ as I have no intention of this being a short term thing to be discarded by February. This is phase two of endometriosis recovery and it’s a long old track. I’m looking forward to working on this and to being the strongest, healthiest, and (I hope) happiest sick girl in town.

I’d love to hear if you have any long term health/lifestyle goals you are working on to help with your life with chronic illness. Hints on staying on course are also much appreciated!

Love,
Claire
xxx