Endometriosis and the impact of delayed diagnosis.

It’s now been three and a half years since my endometriosis diagnosis. A lot has happened since that momentous day- two surgeries, a mental breakdown, a new job, difficult decisions, diet experimentation, a whole new community of friends, and falling pregnant to name but a few.

I am now doing relatively well- thriving for the most part in fact. 2017 was the first time in almost two decades where I can say I had times where I felt truly happy, content, and well. I can see why it is tempting therefore, for people to think that everything is OK now and I have put the trauma of diagnostic struggles behind me. That I have risen above it and moved on. That I was tenacious and refused to let my poor health defeat me.

But the fourteen years it took for me to be correctly diagnosis still shape every aspect of my life and have affected me very deeply. I am still angry about this. And I’m angry that it still takes 7.5 years on average for women to be diagnosed with this often debilitating disease, because this is completely unacceptable in 2017 quite frankly.


So let me spell it out, for those who cannot read between the lines or see behind often forced smiles what a delayed diagnosis really means and why it matters…

-Delayed diagnosis means that I’ve been left with levels of pain, fatigue, and mental trauma which still overwhelm and consume me at times. These days, I’m better at hiding it, but this causes its own hurt.

-Delayed diagnosis meant that I became progressively more ill each year as the disease spread around my body to take hold of organs such as bowel, bladder, and diaphragm. All without explanation or it was put down to ‘stress’. I spent at least five years convinced I was dying, which had a pretty negative impact on my productivity unsurprisingly.

-Delayed diagnosis meant having to watch all of my friends graduate their PhDs successfully while I am left behind, too traumatized and exhausted to finish something I’ve worked so hard for.

-Delayed diagnosis means that I’ve had to make huge compromises with my career to be able to cope with the limited energy I have available to me each day. And to live with the knowledge that I could and should be doing more.

-Delayed diagnosis means that I suffered the pain and heartbreak of years of infertility.

-Delayed diagnosis means that I earn less money than I would have done if I were well.

-Delayed diagnosis means that I am not able to always be the wife/ daughter/ friend that I want to be, and living with the guilt of this. Sometimes I just hide away and put myself first just to survive.

-Delayed diagnosis means I lack confidence in my body and deeply distrust medical professionals.

-Delayed diagnosis means wondering ‘what if things had been different’ all the time. If my GP had listened to me as a teenager. If I wasn’t constantly misdiagnosed and fobbed off as an adult. If I didn’t spend the ages of 11 to 25 in excruciating pain. If just one person had told me that period pain like mine wasn’t normal.

-Delayed diagnosis means never having closure. Nobody will ever apologies or be held accountable for the terrible time I went through or be able to put things right. Most of the people and professionals I encountered will never even know my story, or why it matters.

And that’s just for me. More broadly, delayed diagnosis of endometriosis means all these things as well as and lost working/ educational hours, lost potential, lost relationships, and lost dreams for millions of women and girls around the world. As a society we can and should be doing better.

I appreciate that everyone’s stories are different and that my case is at the more extreme end of the spectrum. I also feel that things are moving in the right direction in terms of endometriosis awareness, treatment, and funding, and there is much cause for hope.

For many of us though this progress is too little too late, and we have to find ways of rebuilding our own lives the best that we can. This takes time and is not easy but is certainly possible. I like to think I am a living example of that. But I am not the same person as the result of my difficult diagnostic journey, and I feel it is important to tell this part of my story to highlight exactly why diagnostic delay in endometriosis is a cause for concern and it addressing this really matters.

I’m interested to know how long it took you to be diagnosed with endometriosis, and how your diagnosis came about? What impact has the delay had on your life and wellbeing?

Take care,
Claire
xxx

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.

ihome-logo
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

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!)

outward-smiles

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:

nhs-ivf
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

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