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

My day awareness raising with GPs in training.

My GP phoned me unexpectedly last week, messing with the shredded nerves of my inner hypochondriac considerably in the process- ”That’s it I’m dying aren’t I? I knew it! Just tell me quickly to get it over with! Oh. My. God!”

It turns out her news was actually rather positive, so I thought it might be uplifting to tell you guys about it here, rather than moaning about stuff. We have to share the winning moments when we have a disease that makes them all too infrequent right? Our conversation went something like this:

GP: You know we are a training practice?

Me: Yeeeeees…

GP: Well we are doing some gynecology work with our trainee GPs at the moment, and so I was wondering if you would like to come in and talk to them a bit about endometriosis and your experiences of symptoms and treatments?

Me: Hell yes I’d like to. I can’t think of anything I’d like to do more in the entire world now I think of it.

That day was today, and it was totally awesome! I had time to describe my history and the treatments I have experienced in detail (you can read about my journey with endometriosis here and here if interested). The trainees expressed more than a little surprise/ horror at my story and how long it took me to obtain answers when living with such pain and exhaustion. It almost felt weird to be sat in front of doctors describing all the symptoms I’ve had and being believed after so many years of having the complete opposite experience!

I was also able to cover the main points that I was hoping to get across, that:

  • It takes 7 years on average to be diagnosed with endometriosis- which is clearly far too long, exacerbating problems for both patients and doctors in the long-term.
  • Women with endometriosis should be afforded the opportunity to be referred to a BSGE endometriosis center, and have access to excision surgery if necessary.
  • Endometriosis is a full body disease which has been documented in every organ expect the spleen. It can cause symptoms from diarrhea and bladder to fatigue headaches, and not just a disorder of painful periods.
  • Being diagnosed with endometriosis can be tough psychologically as well as physically, so it can be helpful when doctors are mindful of this and inform patients of services which may be useful (e.g. IAPT, Endometriosis UK, pain management clinics, the Pain Toolkit etc).

your story

The four trainees seemed to be really interested and asked lots of questions. Fifteen years of chronic illness and multiple doctors appointments have defiantly made me less shy about my body I noticed, as I sat there comfortably describing my sex life, periods, and bowel movements without wincing at all. It was also really cathartic and positive for me to be talking about my illness in a way which is positive and can make an impact on the healthcare that other women and girls may receive.

Training new doctors to have a competent awareness of endometriosis is clearly crucial for breaking the cycle of misery and failure surrounding this illness, and for helping women to access timely and appropriate care.  I’m thrilled my GP surgery are being proactive in this regard and that I was invited to help.

The world has a teensy bit more endometriosis awareness in it now, and that can only be a good thing for all of us! 🙂

My GP and I discussed keeping up these sessions with new trainees, and she agreed to let me place posters for Endometriosis UK in the patient waiting area. Let me know if you’ve been up to any cool awareness raising activities in your own communities and/or online. Always looking to be encouraged and inspired by all you strong endo warriors and spoonies out there!

Love as always,

Claire

The one where I prepare to be an activist!

March is almost upon us, which means it’s almost endometriosis awareness month! I’m really excited about this, as I love being able to channel all my anger and angst into something positive. And loud. I like to be loud. We all know a little to well how under researched and publicised endometriosis is, so I’m going to do all that I can over the next few weeks to raise awareness among the general population and medical profession.

I’m particularly looking forward to attending my Worldwide EndoMarch in London- it sounds like it’s going to be amazing! I’ve already purchased my Endometriosis UK t-shirt and some pink legwarmers in anticipation. I’m clearly one of those super organised keen people.  I will be marching with some friends from my support group, although I’m still debating whether to invite my partner and some other friends along too. The more the merrier probably! I’m also going to make some videos soon I think (after I’ve worked out what the most flattering camera angles are) about why I’m taking part in the event. YouTube here I come 🙂

Endo-fashion at the ready!

Endo-fashion at the ready!

Perhaps most importantly, I also spent a couple of hours today writing to my GP surgery, clinical commissioning group, and MP to publicise the event. My MP is Sir Oliver Heald, I wonder how many letters he gets about uteruses and ovaries? Not enough by far I imagine, I’m just so pleased I’m about to change that. I figure we really do need all the support we can get. Endometriosis UK have some great letter templates available here. I really encourage you to do the same. It doesn’t take long and it could make such a big difference if we all get writing!

Over the month I am also going to wear my spoon necklace everyday, and chat to people about endometriosis when they comment on it. I think planting little seeds in people’s heads like this on a regular basis can be just as useful as taking part in high profile stuff less frequently.

I’d love to hear about what you have planned for awareness month. Will you be turning social media yellow, fundraising with cupcakes, or marching through your nearest big city? If you could boil it down to one core reason, why are you taking part. Good luck with it all,  and keep me posted on what you are all up to!

Love,

Claire

xxx