Endometriosis roundup 2016.

1-in-10

Image credit: Monash University

It’s that time of year again where I present my annual endometriosis summary. This is by no means an exhaustive list- but just an overview of events and publications which have caught my eye over the year as being particularly meaningful.
While 2016 has been a rather unfortunate and turbulent year (globally and personally for myself), it has been an excellent one for endometriosis awareness, which is certainly worthy of celebration.

January
-Singer Halsey opens up to fans on Twitter about living with endometriosis, to much praise and publicity.

February
-Writer and actress Lena Dunham pulls out of the Girls promotional tour and talks openly about her experiences with endometriosis.
-Australian advocate Sylvia Freedman asks: With endometriosis, shouldn’t ”let’s get you well” come before ”lets get you pregnant?”
-Young ambassador to Endometriosis UK Alice featured on BBC Newsbeat.

March
-The Worldwide EndoMarch (founded by Camran Nezhat) took place, and was the biggest ever. I marched in London with friends from my support group, my mum, my husband, and Dr Martin Hirsch from Queen Mary University who is researching endometriosis.
-The Endo What? documentary premiered in the US. This is the most important film to be made about endometriosis to date and a really powerful tool to help women take control of their bodies. Premiers followed in London and throughout the world.
-The Primrose Ball took place in Leeds, UK to raise funds and awareness.
-New research linked endometriosis to an increased risk of heart disease.

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April
-The Huffington Post featured an article about typical endometriosis symptoms that doctors frequently overlook.
-The 8th Annual Blossom Ball was held in New York City, and was attended by a host of celebrity guests including Susan Sarandon, Lena Dunham, and organiser Padma Laskshmi.
-The seventh annual Endofound medical conference was held in the US. You can watch endometriosis advocate Abby Norman’s talk back here.

May
She Knows published an article about common misconceptions relating to endometriosis.

June
-Star-Wars star Daisy Ridley opened up about her struggles with endometriosis.
-Celebrity Love Island’s Zara Holland shared her battle with the disease.
iNews published a post about how the NHS is denying proper care to women with endometriosis.
-Carol Pearson shared some of her story with the Daily Mail to highlight the high level of misdiagnosis in women with endometriosis.
-Padma Lakshmi is nominated for a ‘health heroes’ award by WebMD for her work with Endofound.

July
-Endometriosis sufferer Niamh Spence told the Daily Mail about how the disease impacts on her life and her fertility.
-The Phendo app (from the Citizen Endo Project) became available to download on iPhones.

August
-I wrote an article about my experience of endometriosis for the International Business Times, following Olympic swimmer’s Fu Yuanhui’s comments that she under-performed because of period pain.
-Oh, and I also went on ITV’s ‘This Morning’ to talk about menstrual leave. You can watch back here.
-Endo What? creator and director Shannon Cohn tells The Mighty site why misdiagnosing endometriosis as period pain needs to stop.

Article Pic
September
-Australian radio presenter Mel Greig opened up to the Daily Mail about how endometriosis has led to painful sex for her.
-A research study finds that CA-125 can act as a non-invasive diagnostic marker of endometriosis for some women.
BBC Radio 5 Live feature endometriosis in a discussion about managing period pain at work. You can listen back here if you’re in the UK.

October
– I walked 23 miles (!!!) across London with my support group friends Rosie and Jess, as part of Endometriosis UK’s ‘Mad Pants X London Challenge’. 
Cosmopolitan magazine publish a large multi-page feature about endometriosis.

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Image credit: Endometriosis UK

November
-Endometriosis UK hold their first black tie Gala dinner in London to raise funds and awareness. I was there and it was an excellent evening!
-The Revelist published a post by women with endometriosis (including myself) explaining what they wish people understood about living with the disease.
-Loose Women’s Andrea McLean takes time off the show to have a hysterectomy.

December
-Endometriosis hormonal treatments were discussed on BBC Radio Four’s PM with Eddie Mair. You can listen back here if you’re in the UK.
-Health minister Jill Hennessy of Victoria, Australia launches the country’s first set of evidence-based endometriosis resources, as described in the Guardian.
-UK MP asks a question in parliament about endometriosis information available in schools.
-Endometriosis expert Dr Tamer Seckin features on Second Opinion (PBS).

Not a bad year at all eh? And I’m aware of many exciting projects in the pipeline that I think is going to make 2017 even better for the endometriosis community. If you think I have heinously overlooked any articles and/or events, please do drop me a message and I will be very happy to add them into this post.

I’d love to hear what has been your endometriosis highlight of 2016- either public or personal.
All that’s now left for me to do is to wish a Happy New Year to you all! Lets hope 2017 is the best and luckiest year yet for all of us.

Love,
Claire
xxx

 

My site has been listed as one of Healthline’s best endometriosis blogs of 2016.

Exciting news! Last week this site was listed as one of Healthline’s Best Endometriosis Blogs of 2016.” A link to the full article is here.

healthline
I’m really pleased that Healthline are using their significant social media platform to raise awareness for endometriosis. The sites they have featured are all really interesting and useful in different ways, and form a useful resource for anyone wanting to learn more about the disease. I’m also a HUGE fan of Lisa, Michelle, Jess, Tracy, Angela and all of the other women whose  blogs were listed, so it was really nice to see their excellent efforts and hard work being publicly acknowledged.

On a personal level I’m really pleased to be included. Sometimes I worry that I’m just shouting the demented ramblings of my inner mind aimlessly into cyberspace! Blogging on this site has been such a positive outlet for me mentally and emotionally. It has also enabled me to share my story, make new friends from around the world, and hopefully help out a few people along the way. When I sat down to write my first post a few weeks post diagnosis- tears streaming down my face, I never imagined how many  adventures it would open up. I’d highly recommend giving blogging a go if you don’t already!

So, this just leaves me to thank all of you who have been reading and getting in touch in 2016- I really do appreciate it. All of you are amazing for getting through all the rubbish that chronic life throws at you! I’m sure there’s many more adventures and emotional mini-dramas to come on this blog in 2017 (haha) so please do stick around for the journey.

Loads of love,
Claire
xxx

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

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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.

Martin and I

Myself and Dr Martin Hirsch. Photo credit: @martinhirsch100

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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

endo what 1
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.

Tweet

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