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

 

I am doing the Pink Pants X London Challenge to raise funds for Endometriosis UK.

Through a possibly misguided combination of enthusiasm and insanity, on the 1st October I (along with two lovely friends my my local support group) will be walking 23 miles/ 37 kilometers across London for the Pink Pants X London Challenge to raise awareness of endometriosis and some funds for Endometriosis UK.

I’m slightly worried about how epic this challenge will be. As my husband put it: ”So, thee girls with chronic fatigue are going to walk 23 miles? OK then!” But I am determined to do it, and nothing stops me when I have made up my mind about something.

Endometriosis UK are an incredible charity, and they have given so much life changing support to me and other women with the disease. Between us, without the information and support that Endometriosis UK have provided me with since my diagnosis, I am not totally sure I’d still be here today. Their work inspired me to become one of their volunteer advocates, so I can help other women facing the many challenges that this disease can bring.

Just Giving
If you like this blog or have used Endometriosis UK services yourself I’m really hoping you might be able to donate to our fundraising page, to help us to meet our target! I would really appreciate anything you might be able to spare for this great cause. You can donate if you’re outside of the UK too.

Thanks for your support! If you want to follow us on Twitter the 1st October you can do so by using the hashtag #GoTeamHerts. If any of you have tips for walking such a long distance, I would love to hear them!

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

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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

Endometriosis Awareness Roundup 2015

It’s been a FANTASTIC year for endometriosis awareness! A huge number of features, articles, and events were out in the public domain for all to see in 2015, which has helped to create some needed buzz around this terrible condition.

Credit: Endometriosis UK

More people know this than they did a year ago! Credit: Endometriosis UK

I have outlined just some of the awareness items below to record and recognise the great work that has been going on this year (if I have missed anything off that you feel deserves a mention please do let me know in the comments section below).  I hope we can all feel encouraged that things are starting moving in the right direction in terms of awareness and like our struggles are a little better understood.  I truly believe that every little bit of extra awareness out there will help to contribute to a brighter future for all of us.

Happy reading and reminiscing…

-Thousands of people  around the globe (from countries including Australia, Africa and the UK) participated in the Worldwide Endo March, as part of Endometriosis Awareness Week. I marched in London with some of the endosisters from my local support group.

-The Guardian newspaper published a number of powerful articles about endo over the course of a week in October, some of which made the front page! Highlights included wonderful pieces by Hilary Mantel and Oona King about their own struggles with endometriosis, and an editorial highlighting the stigma and limited access to healthcare experienced by women with the disease across the world.

-Endometriosis UK launched their #TooLong fundraising and awareness campaign.

-The Endometriosis Foundation of America hosted the Blossom Ball in New York City, which was attended by a number of high profile celebrity guests including Susan Sarandon and Christian Slater.

-Meanwhile, the Primrose Ball took place in Leeds, England, which successfully raised £2,810 for Endometriosis UK and generated publicity for endo locally. Alice Smith was just one of the guests speakers, addressed the attendees about her excellent work as a Young Ambassador for Endometriosis UK.

-Robyn Atcheson highlighted the inequalities in access to healthcare experienced by women with endometriosis living in Northern Ireland on BBC Radio Ulster. Go Robyn!

-Filming commenced for a new documentary called ‘Endo What?’. Through kick-starter the documentary team reached their funding raising target of $50, 000 that they need to complete the film and begin it’s distribution. You can check out the trailer here, it’s really exciting!

-Lena Dunham’s ‘Lenny Letters’ had an endometriosis edition. In her letter ‘The Sickest Girl’ Leena shared her own struggle with the disease in a way which was extremely powerful and brave.  Other contributors included the wonderful and tireless Padma Laksmi and specialist Dr Tamer Seckin.

-Jeremy Vine and Dr Sarah Jarvis discussed endometriosis on BBC Radio Two. If you are in the UK you can listen back here.

-The pioneering work of Sylvia and Leslie to bring Visanne to Australia was celebrated by The Guardian in this video.

-Carol Pearson told the Huffington Post that ‘We should be talking about endometriosis- Period’.

-Kate Young told The Conversation that ‘Women with endometriosis need support, not judgement’.

Is all of this great or what?! And it  doesn’t even factor in some of the research that has taken place into the disorder over the past twelve month, such as the study highlighting that women with endometriosis may require psychological support following their diagnosis, or another which established that women with the condition face a heightened risk of complications during pregnancy. The important work that the endometriosis charities have undertaken in the past year also deserves praise here, such as Endometriosis UK’s successful launch of an advocacy service and the establishment of the EnPOWR Project by EndoFound! Keep up the good work guys- and thank you for working so tirelessly to promote our cause!

I hope that we can all keep up this excellent momentum this coming year, and keep on breaking down the stigma and silence that has surrounded endometriosis for far too long.

As 2015 draws to a close I would like to thank you all for reading this blog and commenting on this blog and my Twitter, as well as sharing your stories with me. It has also been a real pleasure to see so many new endo bloggers emerge onto the scene and to read your work. I look forward to keeping in touch with you all next year, and hope that we all able to take a positive step forward in 2016 on our journey to live well despite chronic illness.

Love as always, and a very Happy New Year!

Claire

xx

I was at the Worldwide Endo March 2015 in London. It was awesome!

This weekend marked the end of Endometriosis Awareness Month, and the occasion was marked by the the Worldwide Endo March 2015. The aim of this march was to have a million people from all over the world walk through their local big cities to raise awareness for this awful disease. We ladies with endometriosis suffer far too silently far too often, so I was very excited about being able to get our voices out into the world as loudly as possible.

I really enjoyed attending the British march, which took place in London from Embankment to Trafalgar Square. I was there with some of the lovely people from my local support group (which is run by Endometriosis UK), and it was so lovely to catchup with them and have some friendly faces around for support. One friend had been much more organised than me and had spare posters and leaflets for us to use, which was a nice touch. Even the predictably cold and grey English weather couldn’t dampen our spirits. On the walk, lots of passers by seemed interested, so we had lots of opportunities to talk about endometriosis with  people and raise awareness! 🙂 It felt so good to be taking some positive action rather than focusing on the negative aspects of life with endometriosis.

Here are a few photos from the event!

MeatEndo

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It was actually quite an emotional day (although I managed not to cry- I’m getting better at that!), and I’m still feeling physically and mentally drained. When I got home I reflected on how much it meant for me to be there. The ways things are at the moment for women with endometriosis just isn’t good enough because:

  • it’s NOT OK to live a life in constant pain and exhaustion.
  • it’s NOT OK to wait 7.5 years (on average) to get a diagnosis.
  • it’s NOT OK that we have limited treatment options and no cure.
  • it’s NOT OK to experience infertility.
  • it’s NOT OK how little awareness there is in the medical community and general public.

Speaking to other women on the day, I was again reminded how my own (slightly terrible and traumatic) story mirrors that of many other women’s when it comes to endometriosis. That just can’t be allowed to continue- it’s utter madness. I was slightly disappointed that more people didn’t attend our event, considering an estimated 1.5 million women have endometriosis in the UK, but I do appreciate that many are too unwell, live far away, or just aren’t activism inclined. Still, I do think the endometriosis movement is gaining some momentum globally, so I hope we can all keep up our efforts and improve things one step at a time. Just because awareness month has ended I certainly won’t give up on trying to make a difference on this issue.

I’d love to hear if you attended an Endo March! If you did, how did it go? Do send any thoughts, inspiration stories, or hilarious incidents my way! Are you feeling pretty badass right now- because I am! 🙂

Love,
Claire
xx
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