Can you help to shape future endometriosis research?

Hello lovely endosisters! I hope you are all as well as can be today.

I’m writing this post to update you all about an exciting research project I have had the privilege to help develop over the past year as a member of the Radcliffe Women’s Health Patient Participation Group (University of Oxford). We are hoping to establish a set of core outcomes which can be used in future endometriosis research, which will then make it easier for scientists and healthcare professionals to compare the results of various studies and gain a deeper insight into the disease.

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This post is also a little bit of a call to action and a plea to ask you to take part in this research. Participation involves completing three online surveys over the course of a few months, where you will share your experiences of endometriosis and views on what outcomes doctors and researchers should be prioritising when working to improve the quality of treatments and healthcare we receive.

We have made a short video that explains what we are doing in greater detail:

If you would like more information or to take part, you can visit our sign up page here.

Please do get in touch with me directly if you would like any further information or have any questions. Alternatively, you can contact lead investigator Dr. Martin Hirsch (Queen Mary, University of London) by email: m.hirsch@qmul.ac.uk.

I really am hoping the endometriosis community supports this exciting research opportunity. We can hardly complain that there is a lack of research into endometriosis (which is clearly true and a real injustice when you consider how many people are affected) but then not support the projects when they do take place.

I’d love to hear your thoughts, and whether you’ve been involved in any research projects yourself. Please do share this (on your own blogs and/or social media) with any other endosisters you know who might be interested in taking part- the more voices we have to contribute the better!

With love,
Claire
xxx

I recently featured in PopSugar UK’s article about living well with endometriosis.

I was recently lucky enough to be asked to contribute to PopSugar UK’s article aiming to share tips about living well with endometriosis. The article was written by our fellow endosister Tori Crowther, and you can read the full post here.  (Oh and I am ”Claire from Hertfordshire” in case you didn’t guess that already :D).

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I think it’s really important as a community that, as well as raising awareness, we share tips and coping strategies to support each other.  Living with this disease is difficult enough without stumbling in the dark alone right? I know that for me, seeing that there are women who are able to live well with endometriosis, and hearing about how they achieve this, is really encouraging and helps me to feel less hopeless and scared.

Do you have any tips to share about living well with endometriosis? If so, I would love to hear them! This illness affects us all so differently, which opens up many possible avenues for coping with and combating symptoms.

Take care,
Claire
xxx

MPs will debate decommissioning IVF on the NHS- I’ve had my say, now it’s your turn!

On Thursday 19th January 2017, MPs will be debating whether IVF should continue to be provided by the NHS.

While this is a good opportunity to highlight the plight of those experiencing infertility and to highlight some of the injustices that exist around accessing fertility treatment (e.g. the postcode lottery) I find it incredibly frustrating that such a vital service could be removed from the NHS in the near future.

A Facebook group has been set up by MP Steve McCabe for the public to express their views on this matter, which you can access via this link. I strongly encourage those of you living in the UK to contribute to this if you feel able to, whether you have been directly affected by infertility or not. (A word to the wise though- LOADS of my Facebook friends ‘liked’ my post, so it’s not the most private method of airing your views on this topic!)

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One day I will snap.

Personally, I’m so angry about this! Women with endometriosis are high users of IVF, since the disease is one of the leading causes of infertility in women, and so as a community we stand to loose so much if these services are decommissioned. This breaks my heart as I feel that we endosisters have suffered enough already and do not need or deserve the added stress of being unable to access fertility help.

As some of you may also know, 2017 is the year that I am hoping to access fertility treatment, so WHY THE HELL IS IT GOING TO BE DECOMMISSIONED NOW?! I’m not the type to be prone towards paranoia but it does feel a little bit like the world hates me.

There are also some sinister undertones to this debate that I think are really ugly. Like  how infertility is only the result of ‘lifestyle choices’ and that it’s just tough luck to those that experience it. We need to challenge such thinking NOW, because if IVF is decommissioned on the NHS it’s very unlikely that it will be reinstated.

I uploaded the following comment to the Facebook page:

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I could have written more, but I started loosing the will to live to be honest with you. I am sure this will turn out to be a frivolous exercise, but it still feels good to publicly air my frustrations and contribute in my own small way to the debate.

I have also emailed my local MP Sir Oliver Heald to ask for his support in this matter, but looking at his profile (rich, white Conservative, old) and his voting record I’m not going to hold my breath that he is going to be a champion of women’s (health) rights. I would certainly encourage you all to contact your own MPs ASAP too though.

What are your thoughts on this matter? Do you think IVF should be covered fully or partially by the NHS, or do you think it is a luxury that should be funded privately? How will it affect you if this service was taken away? I’m also interested to hear from all you endosisters outside of the UK about your experiences of accessing and funding fertility treatment.

Take care all, I know this is an emotive subject and I only wish luck and happiness to each of you.

Love,
Claire
xxx

Endometriosis roundup 2016.

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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.

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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.

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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

What I wish people knew about life with endometriosis.

I was recently featured in a post on the Revelist site (written by Rae Paoletta) about what women with endometriosis wish people understood about life with the disease. You know me, I never miss a chance to spread the message! 🙂

You can check the article out here.

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What’s the one thing that you wish that people understood about living with endometriosis/ adenomyosis/ chronic? I’d be really interested to hear your thoughts and experiences.

Much love,
Claire
xxx

My blog is nominated for a WEGO Health activism award.

I’ve been nominated for a WEGO Health award, in the blogging category. This was a lovely surprise! I think it’s great that there is an effort to recognise the amazing work that bloggers do to raise awareness of the many chronic and often invisible health conditions out in the world, including endometriosis.

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Please take a moment to check out my profile page and to ‘endorse me’ if you like my posts and the work that I do with regards to endometriosis and adenomyosis. It would mean a lot- it’s so great when endosisters can support each other in their efforts!

Thanks, and much love,
Claire
xxx

What is recovery anyway?

It’s been a year now since my excision surgery, where endometriosis was removed from my ovaries, utererosacaral ligaments, bowel, bladder, pouch of douglas, peritoneum, and diaphragm. Lot’s of people have been asking for an update about how I’m doing, and I realise it has been a while since I wrote about my own condition, so I thought I’d write this post to update you all and to share some of my thoughts managing the surgical ‘recovery’ process.

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The road to recovery is a long one. There will be obstacles.

I give so many different responses to the question ”So how are you now?”, depending on who is asking- I’ve realised that not everybody needs or even deserves to hear the truth. The honest answer to this question is this: I’m doing OK. Not fantastic, not terrible.

To clarify, I am certainly MUCH better than I was before my surgery, the difference is remarkable. I now no longer have period pain, which is a huge shock and something I never believed was possible for me, having spent 15 years in agony with every single period. As Mr B and I are trying to conceive, I am off the hormones and painkillers , and am managing well, which would not have been possible a year ago. I am actually enjoying being totally drug free, and am still using holistic and dietary techniques to promote my health, along with exercise, which I am really enjoying. This disease has basically turned my into a hippy. Or Gwyneth Paltrow. I’m OK with that.

On the downside, I’ve still been experiencing chronic fatigue since my surgery, which is with me every day and ranges from mild to debilitating. I do have adenomyosis and some other health problems which are likely playing a part in this though, so I don’t see this as any kind of failing from the surgical process. Slightly alarmingly, I have also been experiencing what I think are random diaphragm and endometrioma related pain flare ups again over the last couple of months, but I am just going to track these for a while before I start to panic or take any action.  Another gloomy point, no baby in sight yet, and I haven’t even had any near misses, and that has been getting me down a little bit too sometimes. I know it’s relatively early days in the process though- so I am staying as optimistic as I can. (Funny story though- I went to London Zoo with Mr B recently, and I cried when I saw a stork. New level of crazy right there!)

So, as ever when living with chronic illnesses, there are pros and cons, to my current situation, but I am looking on the bright side about how much progress I have made. Thinking about how far I have come since my surgery a year ago, I started to understand that recovery from a major laparoscopy for endometriosis and the journey back to health is a long one- much greater than the couple of weeks they advise you to take off work. In my view this journey can be helped or hindered by two key factors, which I’ve outlined in greater detail below.

Managing my own expectations:

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As we all know, there is no cure for endometriosis. While surgery, hormones, or dietary approaches can be useful on their own or in combination, they will not solve the problem completely.

When I see other people sharing their stories online, and through my own advocacy work, I have noticed that many put all their hopes onto a particular approach ‘fixing’ them, in the sense of making them feel exactly like they did before they got really sick.

This makes me worry that they are setting themselves up for disappointment and failure. I am not immune from this myself, for at least a year after being diagnosed I was desperate to work out how I could get back to being my previous healthy self and carry on as though nothing had happened. Eventually I realised this isn’t feasible, my body has changed and I have changed too much. So I gradually started to alter my mindset to focus on how I can become the best and most healthy version of my my new, chronically ill, self.

I’ve found this new approach so liberating and helpful- and it certainly isn’t defeatist if that’s how you’re reading it. It meant that I went into my surgery with positive hopes that it would lessen my symptoms and improve my quality of life, while also being realistic about what it could really achieve in both the short and long term: So when my recovery was hard, and I’ve had flares up, and my endometrioma came back,  and my diaphragm hurts, it was disappointed for sure, but I wasn’t crushed like I used to be.

This new approach to my thinking has also encouraged me to keep striving for health through diet and exercise etc, rather than feeling demotivated and giving up on myself because things will never be as they once were.

Managing the expectations of others:

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As well as managing your own expectations about what a treatment or approach can feasibly achieve, I have also realised it is just as important, if not more so, to actively manage the expectations of the people around you. No matter how good I have felt about my progress, it has sometimes only taken a small comment from other people to bring me down and lower my confidence. Examples I have experienced have included:

Family member: It’s disappointing you’re still experiencing some these problems isn’t it?!
Friend: How come you’re still feeling bad- do you need another surgery?
Boss: What do you mean you still have fatigue? I thought you had surgery to sort these things out!

Even though I have told people that endometriosis is a chronic and incurable condition, the fact is most people are much more familiar with acute illnesses that get better with treatment, and they will fall back on these experiences to make sense of what you’ve been going through. I mean, people have surgery to fix them right?!

I think if and when I have another laparoscopy, I will work to reinforce realistic expectations of my friends, family, and colleagues during and after the procedure, to improve their understanding and  to limit these comments. Well informed people makes much better cheer-leaders. When people expect that you’re going to be well, or improved, or cured, it is really very difficult to confide in them that your not, and this can increase feelings of loneliness and isolation. It feels like you’re somehow disappointing them or simply not trying hard enough to get better.

Goal setting to aid recovery:

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There were a few months after my surgery when I felt frustrated with my progress (well, my perceived lack of) and felt like I was just drifting aimlessly through life without any vision for myself or support. This was really weird for me as I’ve also been a planner and had a strong sense of where I wanted to be. My self confidence was in tatters, as was with fitness and progress on my PhD.

What has really helped to turn this around has been having specific and realistic goals to work towards with regards to my recovery and general health. Over the past year these goals have included: Working on getting leaner, improving my stamina, working to reduce the inflammation in my body, getting pregnant, and finishing my PhD.

The joy of goals is they can be adapted over time depending on your needs and vision for yourself, and they help to develop your sense of purpose and self worth. Without them, the journey to recovery can feel like a never ending road to nowhere.

I would recommend making some short term goals immediately after surgery for the following weeks, and then introducing long terms ones gradually in the months afterwards. The key to success with such an approach is making sure the goals you set are realistic, and that you can identify the steps you are going to take in order to achieve them.

So what exactly recovery is, and to what extent it is possible, I still don’t really know. It’s certainly more than physical healing from surgery and is an ongoing process requiring lost of thought and practice. Like everyone else, I am just trying to do my best in difficult circumstances, and trying to make positive decisions that are right for me.  If you’re feeling lost, or discouraged, on your road to better health, take heart, and take one day at a time. We will get there in the end.

I hope these thoughts are useful to those of you who have had or will be having endometriosis surgery. I would love to know if you have any other tips for aiding recovery and health! And what goals you have for yourself despite endometriosis/chronic illness.

Love, as always,
Claire
xxx

I featured on ITV’s ‘This Morning’ to discuss period pain and menstrual leave.

I had the exciting opportunity to appear on ITV’s ‘This Morning’ program yesterday as part of a feature about period pain and menstrual leave. I will not stop until the whole world knows about my terrible uterus 🙂 If you are in the UK you can watch the clip back here.

Me at ITV
It was such a fun morning, and everyone at ITV was super welcoming which helped to settle my nerves. I had an excellent time and was really pleased to raise a little bit more awareness about menstrual problems. I know some people were disappointed that the feature wasn’t about endo and/or adeno specifically, but at least with myself as the ‘case study’ the issue was raised, it might not have been otherwise. Hopefully the feature will have been enough to raise some alarm bells for women at home who are experiencing similar symptoms with their periods but haven’t got a diagnosis. We have to celebrate the little wins as well as big ones when it comes to raising awareness.

I’d love to know your thoughts on the feature, as well as your experiences of managing periods while working or of menstrual leave. Have you had to take time off for your periods? Do you think a menstrual leave policy would help?

Love,
Claire
xxx

I have a new endometriosis post in the International Business Times.

I have had a new article published in the International Business Times UK today, about why endometriosis and period pain matter. You can read it here.

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Do you feel like your period pain has held you back in life? Has it prevented you from reaching certain goals? How do you attempt to overcome this challenge? Looking forward to hearing any thoughts you have about this.

Love,
Claire
xxx