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

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.

revelist

wish-people-knew

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

I’m currently featuring on ‘The Endo Twins’ website.

Last week, I had the awesome experience of being interviewed by Fela of The Endo Twins site about all things endometriosis, adenomyosis, and living well despite chronic illness. This encounter stemmed from our shared experience of living with endometriosis on the diaphragm. You can check the interview out here.

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If you have, or suspect that you have diaphragmatic/thoracic endometriosis- please feel free to get in touch through my ‘contact’ page. Also, do check out ‘The Endo Twins’ site as it’s such an interesting read. Thanks again to Fela for featuring me!

With love,
Claire
xxx

Five ‘chronic life’ lessons I learned from walking 23 miles/ 37 kilometers.

Last weekend I walked 23 miles across London, as part of the ‘Mad Pants X London Challenge’, to raise awareness of endometriosis and funds for Endometriosis UK.

I’m happy to report that I managed to complete the walk! It took approximately 9 hours, 48,000 steps, 4 quinoa energy bars, 1 bottle of Lucozade, and a Wagamama pit stop to make it to the finish line. We (myself, and my Hertfordshire teammates Rosie and Jessica) managed to fund-raise £1515.24 for the charity (including gift aid), which was completely amazing and so much more than we were expecting. Knowing that we had so much sponsorship really helped to spur us on during some of the more difficult parts of the walk- especially during the heavy rain!

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Starting Line. Was so lucky to do this walk with such lovely people. Image credit: Endometriosis UK.

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It rained- a lot! But it didn’t dampen our spirits as much as our tutus. Image credit: Endometriosis UK

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Posing in beautiful London- almost there! Image credit: Endometriosis UK

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Finished! Total champions- bring on the wine! Image credit: EndoLadyUK.

It was a fantastic but challenging day, and I feel it was a huge achievement considering that I (and many of the other women on the walk) live with regular and/or constant pain and fatigue.  I knew it would be tough but figured it would probably pale in comparison to the physical and mental torture that endo has inflected upon myself and so many others. Upon reflection, the event has reinforced number of important lessons about living well with a chronic illness to me, which I have outlined below:

1.It’s totally OK to push yourself sometimes.
Walking 23 miles/37 kilometers in one go is pretty extreme. I knew that participating in this challenge would cause a massive fatigue flareup over the following week, and would make my pain worse than usual, but to be honest I didn’t care. While I’ve gotten really good at looking after myself and protecting my body from endo symptoms, I REALLY miss being the old adventurous and athletic me sometimes. I was ready for an adventure and to push my limits for a change, so I went for it regardless if the inevitable dire consequences. The massive sense of achievement and boost for my self esteem was totally worth a difficult week of recovery. Life is for living to the fullest after all, chronic illness or not.

2.But equally, you have to know your limits and work within them.
These days it is fatigue more than pain that is a problem for me, which clearly poses a challenge when doing a long walk. Rather than letting this *minor detail* put me off I knew that I had to work within the limits of my body rather than ignoring them by putting a number of strategies into place. These included doing lots of training walks to gradually increase my stamina, and making sure that we had no plans scheduled for the next day etc. While we all know the importance of being proactive and pacing for navigating chronic life successfully, it felt good to have such a powerful reminder of how effective such strategies can be for helping you to reach specific goals, rather than simply being something that holds you back from participating in life.

3.The support and kindness of others can lift you up to achieve great things.
The cruelty of life with chronic illness(es), especially ones like endometriosis and adenomyosis which are so variable in their pathology and symptoms, is that it can make you feel totally alone. With this walk, I was honestly surprised how much my friends, family, endo-sisters, and even strangers got behind us, because I honestly felt like most people in my life don’t understand or care what I go through on a daily basis. I was amazing the effect that people’s encouragement had on me, as I have grown used to primarily being my own cheerleader these days. It has also reminded me of the importance of getting behind my fellow endo-sisters/ spoonies in their endeavors, rather than just focusing on my own troubles. Together, we can overcome our illnesses and achieve great things.

4.It’s OK to say no.
I had wanted to do the walk for the two years prior to actually signing up, but I was much sicker then as I hadn’t had my surgery and knew I’d never have managed it. I’m certainly not suggesting that my completing the walk was a simple case of mind-over-matter, I knew I had to wait until the timing was right. When you’re chronically ill, you have to put your health first much of the time in order to survive, and I knew that could mean pulling out of the race either shortly beforehand or during the day itself. And that would have been OK. Pre-chronic life I’d never have considered quitting anything even if it meant death, but the rules have changed now. It’s totally OK to say no, our health is more important than charity, the expectations of others, and even our own pride.

5.Live life as you see fit, not as others see fit for you.
When I told most of my friends and family that I’d signed up to the walk, they almost universally thought it was a bad idea. My husband, who is forever supportive of every decision I make, was immediately dead set against it and told me outright that I was making a huge mistake, was endangering my health, and was unlikely to reach the finish line. Ouch! (Proved him very wrong though and am trying SO HARD not to rub it in his face!) I totally understood their reasoning of course- 23 miles is a long way to walk for people in good health, never mind for those who are chronically ill. I have to admit that I appreciated their concerns and shared some of their doubts about my walking abilities too. But I also knew that I know my body and abilities the best, and there was a voice inside my head telling me that I could, and would, succeed. If I’d have listened to everyone else I would have dropped out, or never signed up to begin with, and would therefore have missed out on a wonderful day and making a huge accomplishment. My point is, set your own goals for life depending on what you know your abilities to be, and don’t be swayed by people telling you that you can’t do things because you’re sick. Yeah, there are some things that are now out of your grasp, but lots of things aren’t. Now get out there and do them!

Thank you to everyone who supported us on our epic walk; through publicizing our fundraising page, sponsoring us, and in your kind works of support. I’d love to hear your thoughts about this, or if you’ve learned anything from doing extreme challenges for charity sponsorship yourself.

Love as always,
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.

wego-badge

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

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

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:

chronic illness forever
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:

get well soon
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:

goals
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

Four reasons why I celebrate my endo-versary (and why you should too)!

A modified version of this post first appeared on The Mighty site on 10th August 2016. You can view the original here.

On Saturday I will be celebrating my second endo-versary, exactly two years to the day since I was diagnosed with endometriosis. I’ll be having brunch with some of my lovely endo-sisters and then cracking open a bottle of something sparkling and delicious with my husband in the evening. Chocolate may also be involved.

‘‘Hang on a moment…’’ I hear you cry, ‘‘why would you want to celebrate the day that you found out that you have a debilitating chronic illness that has led you to spend much of the last decade in varying degrees of pain and exhaustion?’’ This is fair question, but hear me out while I try and convince you that endo-versaries are a good thing for your mind and body, and that can help you to manage your endometriosis more effectively over the long term.

Cheers- to me! Another year survived.

Cheers- to me! Another year survived.

  1. It marks your first major win against the disease.

If you don’t know what’s causing your symptoms, it can be difficult to combat and manage them effectively. But for many women, getting a diagnosis of endometriosis is extremely hard. In fact, it takes women in the UK an average of 7.5 years from developing initial symptoms to getting a correct diagnosis- a trend that is mirrored across the globe. I myself was seeking answers for my pelvic pain and fatigue for 14 years and with over 20 doctors before finally gaining a correct diagnosis!

Fighting for my health while being so sick required infinite amounts of patience, determination, and self-belief- more than I ever believed I could possess. My efforts paid off in the end, and while gaining an endometriosis diagnosis has been devastating and life-changing, it has also enabled me to start taking control of my body and turning things around for the better. Who wouldn’t raise a glass (or two) to that?

  1. It offers an opportunity for reflection.

Life with endometriosis, or any chronic illness, can feel like a never ending and unwinnable battle. It can be easy to become discouraged and overly hard on yourself.

Having space for annual reflection can be a really helpful way of gaging how far you have come and what you’ve achieved in spite of being sick. It can also be useful for helping you to figure out what you want to work on or achieve over the coming year. For example, on my first endo-versary I reflected on how my time had been focused on coming to terms with my new diagnosis, and how far I’d come in working through my feelings of fear and grief. And now, approaching my secondary endo-versary I can see how this year has been about accessing and recovering from the surgery I needed to improve my quality of life. Over the next year, I will take on the formidable fertility fight in the hopes of having a baby. Looking back on how far I’ve come gives me a huge sense of achievement on how strong I’ve been, as well as bringing a new determination for the upcoming challenges I’ll face over the coming months.

  1. It opens up an avenue for awareness raising.

If you’re like me, you might limit the amount you post on your personal social media accounts about endometriosis and your own battle with the disease. I used to post a lot more but it was obvious that ‘compassion fatigue’ had set in and that my posts were having little impact. Posting about my endo-versary is a concrete way of revisiting the issue and helping to raise much needed awareness for endometriosis amongst family and friends. This will also help to remind them that I live with this disease 24/7 and that their help and support is much needed and greatly appreciated.

  1. It’s an excuse for some well-deserved pampering.

Like any celebration worth its name, an endo-versary is an excellent opportunity to indulge in a little pampering or ‘me time’- whatever you need most. So crack open the bubbly, or the chocolate, or go to a spa, or to the theatre, or bake cakes to eat with your girlfriends- whatever makes you feel good. You’ve made it through another year despite endometriosis- you’ve earned it!

If you're going to break your Endo-Diet, do it in style I say!

If you’re going to break your Endo-Diet, do it in style I say!

So there you have it. I hope you’re convinced and will start marking your endo-versary in whatever way you see fit, if you don’t already. But if not, that’s OK, but please know this. On the 13th August, as I toast my own successes and the journey to come, I shall raise my glass to you as well- all of you who live with endometriosis every day. You are all so strong and so brave, and without the support of many of you I’d probably be spending this endo-versary hiding under my bed crying. Cheers!

I’d love to hear your thoughts on this. Do you celebrate your endo-versary, and if so, how? Conversely, is it something you could never bring yourself to celebrate?

Love,
Claire
xxx