Research priority setting for endometriosis- the top ten questions announced!

A few weeks ago I had the privilege of taking part in the James Lind Alliance priority setting workshop for endometriosis, which took place in London. The aim was to bring together a mix of healthcare professionals, patients, family members, and carers to decide on the top ten questions to be prioritized in future endometriosis research.

It is hoped that this exercise will also attract new funding opportunities for endometriosis research, which is so important considering that endometriosis is hugely underfunded when compared to other conditions.

It was a grueling but fascinating day, and the culmination of a much longer process of consulting with professionals and the public on this topic. I felt so proud to be there representing women with endometriosis, and I made sure I spoke up to reflect my own experiences and that of the women I’ve come into contact with over the years.

The top 10 research priorities have now been published, which you can read below:

This work has also just been published in the medical journal The Lancet (see here), as well as in the popular press (see here) if you want to find out more. You can also find out the full details about the work on the James Lind Alliance endometriosis page (see here), which includes the ranking of the top 30 questions included.

I’d love to hear your thoughts on the final top 10. What do you think is missing and what would be in your top ten?

Love as always,
Claire
xxx

What doesn’t kill you…tales from my most recent hospital appointment for endometriosis.

I recently had a hospital appointment at an endometriosis specialist centre in London.  I promised I would update you all, and lot’s of people have contacted me to see how things went, so I thought I’d do a quick post to spill the beans. I am the most open of all books after all.

For those of you not in the loop, I had excision surgery 18 months ago at this hospital to treat my severe endometriosis- including on my bowel, diaphragm, utersacral ligaments, and pouch of douglas. I also had an endometrioma removed from my right ovary.  Oh, and since my body hates me apparently, I also have adenomyosis, but have not had any treatment for this to date.

A quick word to the wise. I know a lot of people associate my case with Mr. Cutner, as he was the surgeon who performed my excision. However, I did not see him at all during this most recent appointment, just to be clear so he isn’t tarnished by any subsequent whinging that happens in this post.

Anyway, ‘happy’ reading…

Why was I referred back to the endometriosis center?
For the past six months I have been experiencing a recurrence of some of my endometriosis symptoms. This includes right sided ovary and abdominal pain and random  stabbing pains in my shoulder and chest. I’ve generally been pretty well since my surgery, but have had two debilitating flare ups- one of which lasted for six weeks. We’ve also been trying (with varying amounts of effort and enthusiasm) to conceive for over a year now. After speaking with my GP I decided I would like to go back to UCLH to see what’s going on with my endo/adeno, before consulting with a fertility specialist.

Following a referral process which would test the patience of a Tibetan monk on sedatives, and a two month wait, I was on my merry way to London with Mr. B with a head full of trepidation and a heart full of optimism.

It’s wasn’t the most fun train ride ever. I get so grouchy before appointments.

What happened during my appointment?
I had two appointment scheduled for the day. The first was for a trans-vaginal ultrasound scan and the second was for a followup discussion with the doctor. I find trans-vaginal scans a uniquely humiliating and awful experience, but I won’t dwell on that here today- that’s for a future post.

I would also have seen the endometriosis specialist nurse after my scan but she was away on training that day unfortunately. Still, this gave Mr. B and I time to visit the Star Wars Identities exhibition at the 02 arena in the four hour gap between appointments because, you know, compromise (he listens to me incessantly wailing about my lady parts, I embrace what to my mind is an irrational obsession with space stuff).

What were the test results?
So, the good news. According to my scan results my endometriosis does not seem to have returned over the last 18 months. Yay for me. I do have another endometrioma on my right ovary but it’s tiny (about 1/4 of a cm), and I have a couple of ‘flimsy adhesions’.

The bad news. My adenomyosis is worse. I now have some nice chunky adenomyomas making themselves at home in my uterus muscles. When expressing my unhappiness about this my doctor replied ”well, your adenomyosis was bad before and it’s bad now.” FYI physicians- THIS IS NOT COMFORTING!

They also couldn’t really offer an explanation as to why my abdomen and right ovary have been feeling like they might explode. To my mind my adenomyosis, endometrioma (no matter how miniature) and adhesions seem to be very strong candidates, but the team said no- and hey, they’re the experts right?!

What action was recommended going forward?
During my afternoon appointment I was presented with a choice- what is more important to you- pain management or fertility? The recommended course of action would differ significantly depending on what I choose.

If it’s pain management, then they’d recommend radical action for me. Possible removing my uterus and/or ovaries, then hormones. If it’s fertility then this isn’t possible, or obvious reasons.

I said that fertility is the bigger priority right now, so I was advised to speak to my GP about getting a referral to a fertility specialist. If the fertility clinic advise having a laparoscopy then the endometriosis centre will happily do this, but for now there is basically nothing they can do to help me.

This basically sounds positive- why are you being so grumpy?
I came out of my appointment feeling quite annoyed and underwhelmed, and four days later I still do. There are several reasons for this I think:

Firstly, I’m kind of stuck in a halfway house still and don’t really feel like I’ve made much progress on my journey. I don’t know why I’m in pain  and if I will ever be able to have a baby. Also, there’s a part of me that is worrying that my endo has actually come back but it just isn’t being picked up on the scan :/

Secondly, my doctor literally gave zero shits. It was palpable. I know everyone gets desensitized when regularly exposed to tragedy, but at least pretend to care. I told him that I find it unacceptable and frustrating that I have to make a choice between my quality of life for the foreseeable future and having a family, and he was literally like this…

Yes this is my lot and there isn’t anything I or he can really do about it, but politeness and empathy can go a long way. After receiving my legendary death stare in response (my friends call it ‘the eye of disgrace’ haha) he recommended that i speak to my GP for a referral to a pain management specialist, which isn’t a bad idea.

He also went into full on patronizing/smug mode which is making me want to make him into a voodoo doll to stab. He told me to focus on the little things like I’m well enough to go out for a coffee. I was kind of like, well yeah, but this disease has basically stopped me from completing my PhD at Cambridge, ruined my self esteem, and if I need IVF is going to financially break me. Those are my goals- not coffee mate. But he doesn’t care about my goals of course. I will leave the clinic soon and they will not affect him anymore.

I could seriously moan about this guy all day, so I’ll stop there. Interestingly, a close friend of mine (who is very fair and reasonable and not at all an emotional hothead like myself) also saw this doctor recently and expressed similar feelings. Coincidence? I think not. Still over all the appointment was well managed and people were pleasant. I got the information I need to move forward which is all I wanted anyway.

Sorry about the ranty post guys, but well, you did ask. I’ve enjoyed being free from the merry-go-round of mediocre hospital appointments and I’m gutted to be getting back on again.

I’m also feeling a bit lost and lonely on this journey at the moment, but I know that many of you will know what this feels like. My life has changed quite a lot in recent months and I don’t feel like I have such a support network around me. But I am determined to manage my endometriosis and adenomyosis my way as much as possible. I’ve written before about how I want to avoid a hysterectomy if I possibly can, but I’m trying not to focus on this too much now. It’s a problem for future Claire to deal with.  For now I will up my efforts on the diet and exercise front to assist me to be as well as possible.

So this is my most recent mini drama that isn’t really a drama. I’d love to hear any of your experiences about life post excision surgery. I’m also really interested in hearing about your experiences at fertility clinics, I’m freaking out about this a bit.

Much love and thanks for reading!
Claire
xxx

Boom Shake the Womb!

A guest post by @LizzieBennett_ for endometriosis awareness month.

Life Lesson by Don Raye
The fierce wind rages
And I see how trees survive
They have learned to bend

Before

I’m 13 and I’m being prescribed the pill for irregular, painful bleeding. Apparently my cycle just needs to settle down.

I’m 14 and I’m being rushed into hospital to have my appendix removed. Only when it comes out it looks like it isn’t the culprit after all.

I’m 15 and I’m put on the contraceptive injection because I’m still bleeding for two weeks at a time and being physically sick from the pain.

I’m 17 and I’m asleep on my mum’s bathroom floor for the second night in a row, because the cold floor is the only thing that will ease the pain in my lower back and I may as well be somewhere that I can vomit.

I’m 18 and I finally see a consultant. I’m too young to have endometriosis she assures me, but after pressure from my mum she agrees to do the operation to rule it out so that we can focus on the other ‘much more likely’ causes. She gives me surgery for a bet.

I’m 18 and she pulls back the curtain after my surgery to inform me without kindness that they did find endometriosis on the back of my womb. It is now removed and she’ll see me for a follow up. She never did and I did not receive the slightest advice on how to manage an incurable chronic condition. Everything I ever learnt is from charity websites and women’s magazines. I have never underestimated Marie Claire.

I’m 20 and I’m back to bleeding for weeks at a time. I’m informed that further surgery should be a last resort and I need to find hormonal alternatives. They give me the implant.

I’m 22 and the implant has to be swapped because it’s not longer effective. Surgery is not an option.

I’m 24 and the implant has to be swapped because it’s not longer effective. Surgery is not an option.

I’m 27 and I bleed for eight weeks over Christmas and New Year. I’m extremely bloated, and uncomfortable. I have a constant bearing down sensation in my back and cramps in my legs. I often cannot get out of foetal position because of the pain. I’m exhausted and I find it difficult to open my eyes in the morning; I worry that I am becoming depressed. My anxiety is through the roof, but who can blame me when my whole body feels like it’s against me?

I’m 27 and I’m seeing a private consultant. I’ve been unable to move from my bed and have been experiencing labour pains when I bleed. The pain is now also present when I don’t bleed. I’m asked to rate the quality of my life. I circle ‘0’.

I’m 27 and the consultant shows me pictures of my womb. She’s removed endometriosis covering the left side of my womb and the pouch of Douglas. My womb collapses when it is touched, the muscles have deteriorated. She suspects adenomyosis. As my mum is crying next to me all I can think is ‘Thank God someone believes me, thank god it’s not all in my head’.

I’m 28. It’s the day before my best friend’s wedding and I can’t stand up straight because of the pain. I’m so tired from not sleeping that my vision has started to blur. I manage the pain with tramadol, codeine, and jäger bombs, but I know I was close to not being able to be there. I consider how much more I am willing to miss for this disease.

I’m 28 and I’ve decided to have a hysterectomy. I’m on a drug that has shut down my pituitary gland. I am so sick I honestly feel like I am dying. Someone asks me what I do all day now that I can’t work and I’ve had to take a leave of absence from my PhD. I survive, I tell them, every ounce of my energy from the second I wake up to the second I go to sleep goes into surviving. I google my first consultant for my PALS report and it transpires she is writing a book on cultivating ‘compassion’ in the NHS. Yep. Compassion.

I’m 28 and I’m doing the compulsory pregnancy test before my hysterectomy. The fact that I haven’t had sex with anyone for two years apparently doesn’t mean I can skip it. I’m at peace with having family in whatever way it comes, but I can’t help but remember the daydream I’ve said since I was a teenager of waiting for my partner to come home and greeting him with the test in my hand and hugging each other with mad joy. Tears fall silently down my face in the starkly lit toilet, whilst I pee on a stick. No hope of a positive test. No partner.


After

One of things that I did not expect after my operation were the irrational feelings occasioned by the trauma of my muscles inside. I had read that sometimes your other organs go into shock at the removal of the womb, but I hadn’t been prepared for my body literally feeling like I had given birth. In semi-lucid moments in those first couple of weeks I would wake up reaching my arms out and wanting my baby. It was, even for someone not naturally broody, pretty horrific.

For the next few months after the operation I would quite often have to leave nights out, or lunch dates, early to cry. I wondered if this was a delayed grief, but in retrospect I think it was a combination of extreme tiredness and sheer, abject relief. Relief that I had made it through those long months, relief to be past the fear of the operating room, and relief to finally have my body back on my side after 15 years.

Probably one of the hardest things about my illness as young women has been painful sex, and bleeding during or after it. On top of which, the irregularity of my periods has always meant that I could come on at any time. So on a date when the glasses are being cleared from the table, and they’ve inched their chair over, and I’m laughing and playing with my hair, and they say do you fancy coming back to mine for a drink? My first thought has never been ‘get in’, or ‘I thought you’d never ask’, but ‘have I got sanitary stuff with me?’ Or ‘what if I bleed in the middle or it, or in the night if I stay?’ And if this doesn’t put me off entirely, it means that I look like I got incontinence issues, because I constantly go to the loo to check that I haven’t started gushing blood at various stages of what should be that amazing/awkward/disappointing first hook up.

No one wants Jaws the movie on their first date.

Then, let’s say it goes all right, and you find someone brilliant and understanding. Those things don’t just go away. It’s never going to be fun for someone to feel like they are hurting you when you are being intimate. Sex becomes bound up with worry. I have found that this means that I hold something of myself back during the moment. People sense when they are not getting all of you, and it has implications.

I am now one of the lucky ones. However, there are still consequences for the rest of my life. All of the literature for post-hysterectomy sex is geared towards intercourse with your ‘loving husband’. I’m 28. It could very likely be an intoxicated encounter with a tinder date. Even once I’m passed the initial terror of being naked with someone again, at what date do I casually slip in that I can’t have children the conventional way? Admittedly I was ambivalent beforehand, but ambivalence is a topic that can wait. None of this means that it was the wrong decision; I feel extraordinarily well and happy and optimistic about the future. However, the right decisions are still hard decisions.

So, why am I writing this? Because one of the most important things anyone can do to raise awareness is to tell their story, and for others to share the stories that women tell. It legitimates the experience of women with endometriosis. It sends a message to young girls to trust their bodies. And, hopefully, it may give them the strength to persist with getting a diagnosis when they are told that it’s just ‘normal period pains’.

I can assure you – nothing about my young life with this disease was normal.

As well as difficulties I have faced, I have been lucky enough to also receive fantastic care and wonderful acts of kindness. From the nurse who took my blood and told me we have to make decisions that are right for us at the time, to the porter who held my hand as he wheeled the trolley in to the operating theatre, and the physiotherapist who spent an hour with me before my operation and made everything about those bruising, brutal first two weeks of recovery a bit more bearable.

I have seen great changes in the last ten years in the way that endometriosis is spoken about and treated, and I look forward to the seeing what is achieved next ten years. However, I am aware that for some women it is already too late. These women have met the loss of hopes, dreams, jobs, and relationships with bravery and grace. This piece is written for them.

For further information or for anyone who would like to support or donate to a charity during endometriosis awareness month:

https://www.endometriosis-uk.org/

http://www.adenomyosisadviceassociation.org/

http://www.hystersisters.com/


Elizabeth Bennett is a folk singing, footpath walking, gin drinking PhD student. Having been diagnosed with endometriosis at 18 after 5 years of G.P. appointments, she took the decision to have her uterus, cervix, and fallopian tubes removed at 28, in order to regain her health and restore a sense of self. With her brilliant friends and family she had a stitch and bitch hysterectomy party ‘Boom Shake the Womb’. She has not met Mr Darcy yet, but she has a sneaking suspicion he may arrive in the form of a Sussex Spaniel.


You can tweet Elizabeth at @LizzieBennett_

Have a story to share? Email me at endomyworld@gmail.com

I am currently featuring on The Fertility Podcast to raise awareness of endometriosis.

It’s March 1st- which means it is now officially the beginning of Endometriosis Awareness Month! I’m really excited for all the articles and events planned to raise awareness of this horrible disease over the coming weeks!

I recently had the privilege of being interviewed about my experiences of endometriosis (and infertility) by Natalie from The Fertility Podcast. I will not stop until the whole world knows about my broken lady parts- and why this is a big deal! 🙂

You can check out the full podcast here.

fertility-podcast

I’d love to know what you think of the podcast. Do my experiences resonate with your own? Have you had experience of infertility or IVF? (Also, I am always here for any of you affected my infertility/ endometriosis who needs somebody to talk to, so please do get in touch if needed. Please don’t suffer alone- a problem shared really can be a problem halved).

With love,
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

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).

popsugar
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!)

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

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.

endo what 1

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.

pic-2

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.

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