He’s here at last! My pregnancy and birth with endometriosis and adenomyosis.

I’m happy to announce that baby Barney FINALLY arrived five weeks ago. I say finally as he was fifteen days overdue (!) in the end and arrived by emergency c-section as he flatly refused to be born! 😀

I still can’t believe I have a baby boy after years of fertility struggles owing to severe endometriosis and adenomyosis. It’s really surreal but I don’t take a moment for granted, even in the most sleep deprived moments.

I thought I’d give a little overview of my pregnancy and labour journey on here as I never see much written about this online with regards to endometriosis and adenomyosis. I imagine my experience is pretty individual though as these diseases tend to affect us all so differently, but thought it might be useful to share anyway.

Pregnancy
Aside from morning sickness that lasted for seven months I was actually in a moderate to severe amount of pain at times throughout my pregnancy. This felt like a stretching and ripping pain which I attributed to my adenomyosis and adhesions having to stretch despite not being made of the most stretchy substances. The worst part was you can’t  take any heavy duty pain killers in pregnancy so I just had to just grit my teeth and get through it. It felt quite alarming at times but my medical team never really seemed concerned, and all was well with myself and the baby throughout the pregnancy thankfully.

Birth
I never went into labour naturally. When I was fifteen days overdue things were getting slightly ridiculous and the baby was getting distressed so I agreed to be medically induced. This kind of broke my heart as I was hoping for a natural birth but accept that these things happen. My induction failed however as I did not dilate past 2 cm- hence the emergency c section! (FYI- Being awake for major surgery is CRAZY! Not sure I’m keen to repeat that in a hurry.) Lots of guess work here but I wonder to what extent having a uterus riddled with adenomyosis affected it’s ability to contract and dilate. I imagine it didn’t help. Not sure why I didn’t go into labour in the first place though- stress perhaps?

Ultimately, although I didn’t have the birth I imagined I am just thankful beyond words that Barney is here and we are both safe. Recovering from a c-section is proving to be tough for me (currently on my second post-op infection- yay!) but I am just trying to look after myself and take things one day at a time for now.

I spent so many years thinking having a baby would never be possible for somebody like me with severe endometriosis and adenomyosis who had been trying for years without success. I don’t really believe in miracles or fate or anything but I’d like to offer some hope to other women in my situation that things can work out and that you never know what’s going to happen in the future.

I’d love to hear your fertility/ pregnancy/ birth experiences with endometriosis and adenomyosis. Do you feel these conditions affected your plans for a family? 

With love,
Claire
xxx

My fertility journey with severe endometriosis and adenomyosis: An ode to Heal Endo.

This post originally featured on the fabulous Heal Endo website. You can see the original version, along with a very kind into, here.

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I remember waking up from my first laparoscopy with my surgeon hovering over me. ‘Good news, it isn’t cancer’ she said. ”Bad news, you have endometriosis and it’s really bad, it’s EVERYWHERE”. She recommended that I go to see my GP to have the Mirena coil fitted. ”Oh, and come back and see in a year when you’ve been unable to conceive, if that’s what you want” she added.

And that was my terrible introduction to the crazy world that is life with endometriosis. I was 25 years old. I had never even heard of endometriosis and no explanation was provided. Not that it was a huge surprise after some speedy Googling- I had been suffering with severe period pain, fatigue, bowel and bladder pain, as well as shoulder pain since I was 12 years old. These symptoms had worsened over time and become increasingly debilitating to the point where I was considering dropping out of my PhD studies as I felt too ill and exhausted to continue working. I was hospitalized with diarrhea so severe at one point that I almost died of dehydration! A year later a diagnosis of severe adenomyosis followed.

The news that I had a chronic and incurable condition that I would have to somehow manage for the rest of my life was more upsetting than the fertility bombshell at the time. I was only 25 and having children hadn’t ever really crossed my mind at this point, despite recently becoming engaged to my partner Simon. I joined a local support group and did lots of reading, and decided the best course of action for a chance of recovery and to boost my fertility was to have excision surgery, which I underwent in London two years later.

While excision surgery helped to reduce my pain and symptoms significantly, I soon realised there was a huge difference between ‘having less pain’ and ‘feeling truly well’. Two years post surgery I had also been unable to conceive which was making me feel anxious, depressed, and like a failure. Like many of my endo sisters I turned to natural approaches with the aim of prompting my health, and started following the ‘endo diet’ religiously. I cut everything- gluten, dairy, soy, meat. You name it, I didn’t eat it. I was also pretty miserable (I’m a massive foodie at heart) and didn’t feel that the endo diet was nourishing me in the way that I hoped, as I wrote about in my blog here. I was also punishing myself with heavy exercise daily with the thought that this was healthy and would help me to manage my pain better and to lose the weight I seemed to be gaining despite my attempt to restrict calories.

And that’s where my association with Katie from Heal Endo started. She contacted me saying that she liked my post and agreed that the traditional endo diet is not as healing as it could be and is often counterproductive.  Katie suggested that she could work with me and that with her guidance we might be able to improve my symptoms and make me truly well again. I jumped at the offer! I would try anything, although by this point I felt somewhat skeptical about the impact that a natural approach could achieve. Fertility, I insisted, should be placed on the back burner indefinitely. I knew my body needed to heal and was in no fit state to carry a baby as it was. Anyway, I felt defeated and was reluctant to spend huge amounts of money on IVF.

After completing a barrage of testing and paperwork documenting my symptoms and usual diet, Katie was able to devise an individualized eating and movement plan to start me on my journey to healing. I was slightly intimidated as it represented a huge change to my usual habits as a low sugar plan was recommended for me at first as my glucose scores were through the roof! Strangely , I grieved the loss of caffeine the most as my daily cups of tea had fulled me for years and had become somewhat of a comfort blanket. Instead of daily weight training and running I’d be walking. Still, I persevered and committed 100% as I knew this was an all or nothing opportunity.

What amazed me was how quickly my symptoms started to reduce when following the ‘Heal Endo’ approach. After about two weeks I noticed something truly remarkable whilst driving to work- for the first time in over a decade I was feeling well! I had energy! I actually felt happy! All this while eating more than ever too.

As the weeks rolled on this trend continued- my energy levels increased to what I’d call ‘normal’, my mood stabilized (no more ‘hangry’ my husband joked to his relief), and my bowel symptoms melted away. I enjoyed being able to introduce more foods over time with the focus on their healing benefits (such as pro-biotics) rather than the focus being on deprivation of what was off limits. Also, the food I was making was really tasty- even my husband (the ultimate sugar addict) was able to join in and was enjoying the meals.  Being abler to eat lots of organic grass fed meats, dairy, and vegetables was a joy.

But the biggest shock, three months into my work with Katie I fell pregnant completely unexpectedly. I am awaiting the arrival of my baby boy any day now. I will never forget Katie’s amazed and delighted face when I told her my news. It felt like a miracle but upon reflection I was feeling so well by this point I honestly believe my body was ready at last. Everything seems to have fallen into place, and I am so grateful to Katie and her Heal Endo method for this.

I cannot recommend working with Katie and/or following the advice published at Heal Endo highly enough. It has honestly changed my life and I will be practicing her approach for the rest of my life. She is also a kind and fun person who is open to collaboration and helping you get the most from your own healing goals.

I hope my story can give some hope to other women out there experiencing fertility struggles. I feel like if I could go on to conceive and carry a baby to term with severe endometriosis and adenomyosis then there really is hope for other people too. Katie also has her own inspiring fertility story to tell.

You can read more about Katie’s work on her site Heal Endo or you can follow her on Instagram (@heal.endo).

I’d love to hear more about your own fertility journeys- what you feel helped and hindered the process!

With love,
Claire
xxx

Sleepless Theatre Company to showcase new play about endometriosis: Baby Box.

Exciting news update dear readers… Sleepless Theatre Company have written and produced a play about endometriosis called Baby Box, which will be performed at The Kings Head Theatre in London from 1st to 6th May 2018 as part of their feminist theatre season.

The play explores issues of sexuality and menstrual health through the eyes of two sisters as they navigate their way through childhood to the cusp of motherhood.


Playwright Laura McGrady has endometriosis herself. She explained: ”I’ve essentially written the play I needed to see a year ago but couldn’t find. 1 in10 women suffer from endometriosis and so few people seem to really know about it, so of course I hope Baby Box will shed a little light on the subject and maybe help support some women suffering. However, despite the themes within it, Baby Box is above all about the relationship between two sisters. I love these two characters and their journey together, I think it’s a familiar dynamic and I know this play will speak to anyone who has ever loved someone unconditionally – it really is that simple.”

I am really excited to hear about this new play, and can’t wait to watch it live. We know that endometriosis can be a bloody, unglamorous, and debilitating disease which is very much still a taboo subject- so kudos to the entire team for tackling this subject on head on. I have noticed with frustration that narratives and representations about endometriosis have largely been absent from the creative arts- from poetry and theatre through to TV and film. This represents a missed opportunity to tell our stories and highlight why they matter to the wider public. It will be amazing and emotional I am sure to see some of the issues I have experienced throughout my 18 year battle with endometriosis reflected on stage.

***EXCLUSIVE DISCOUNT OFFER***: Tickets for the performance are priced between £15 and £18. The Endo The World? readers can use the code BabyBoxEndo to buy tickets at the discounted price of £12! Tickets can be purchased here.

You can check out Sleepless Theatre Company on social media for additional information and updates: Twitter (@SleeplessTC), Instagram (@sleeplesstc), and Facebook (here).

For more information about endometriosis, please visit the Endometriosis UK website.

I hope that lots of you are able to go along and support this performance- it sounds amazing. Let me know your thoughts if you are able to attend- I’m sure readers at this site from around the world who are unable to be there would appreciate any reviews and feedback.

With love,
Claire
xxx

My endometriosis superhero.

The saddest and worst thing has happened- my beloved dad passed away unexpectedly at the end of January. I am utterly heartbroken (as well as seven months pregnant).

My dad at my wedding. He was the most dedicated endo-warrior!

As this is an endometriosis blog I thought I’d share with you some of the ways that my dad impacted on my endometriosis journey, rather than focusing on his death. My dad was truly my endometriosis super hero and everybody needs one of those right?! Here are a just few of the reasons why:

-When I was diagnosed with endometriosis my dad spent hours reading all available scientific writings on endometriosis and making notes. I presume he was working on a cure 😀

-My dad came with me to both of my surgeries and supported me during my recovery, even though he was phobic of hospitals.

-My dad always believed me and never questioned my pain. He tried his best to help.

– My dad cried while watching the ‘Endo What?’ documentary and said that he can’t believe how strong women are.

-My dad donated regularly to Endometriosis UK.

-My dad once casually called me up at work to tell me he has been doing some research and that I need women’s health (pelvic) physio.I found this hilarious.

-My dad helped me out a bit financially so I could have a proper break from work following my most recent surgery to recover.

-My dad would gripe at how unfair it was that other people could get pregnant so easily while I was struggling. He constantly said that Mr B and I would make the best parents.

-My dad took every opportunity available to educate other people about endometriosis to raise awareness.

-My dad was easy to talk to about my health and was always checking on me when he knew I was struggling physically and/or emotionally.

I was hoping these things might be useful pointers for any other family members out there wanting to support a loved one with endometriosis but are feeling unsure what they can do. I can promise you that taking an interest and small actions mean a lot to somebody who is sick and scared. Be somebody’s superhero if you can!

I miss my dad so much- he really was the best. Living well with endometriosis is going to be that much harder without him by my side.

If you have any other tips about how family have supported you on your endometriosis journey I would love to hear them. Or it doesn’t even have to be family- what is the nicest thing another person has done to support you since you’ve gotten sick?

With love,
Claire
xxx

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

Seasons greetings and happy update :)

Seasons greetings everyone! Hope your Christmas and new year are as restful and pain free as possible.

Apologies that I have not been able to post for a while, a lot (of truly HORRIBLE stuff) has been happening in my personal life which means I’ve had limited time for writing and a significant amount of writers block. I have lots of new articles planned for the next few weeks to please do stick with me.


I just wanted to post a quick update on her to share some happy and exciting news that I have (for once, see I’m not all doom and gloom)… In April I’m going to be having a baby boy! 🙂 Currently 25 weeks pregnant. Still can’t quite believe it- having both severe endometriosis and adenomyosis, and having been trying for a few years with no success. I’d pretty much written myself off fertility wise to be honest with you.

Maybe miracles do happen. Or perhaps it’s luck. Or maybe I’m one of the people I hate who just ‘relaxed’ and then got pregnant- as if that’s a thing. Either way, I got the shock of my life after doing a quick pregnancy test having felt ‘a bit weird’ for a week in the summer.

I hope this isn’t too triggering for anyone but I just wanted to share my good news with you all as so many of your have been such huge sources of inspiration and support throughout my chronic illness journey.

Take care of yourselves, and am looking forward to posting again in the coming weeks. If you need me feel free to drop me a message into my email inbox- I know this time of year can be really difficult, and it is for me too this year, so always happy to talk.

With love,
Claire
xxx

My endometriosis interview with BBC Three Counties.

I recently had the pleasure of being interviewed about my experiences of endometriosis on the lunch show on BBC Three Counties Radio, presented by Nick Coffer. It was a fantastic day and I’m really pleased I had some time to discuss this topic at length. I think Nick was very knowledgeable and asked really insightful and intelligent questions.

If you are in the UK you can current listen back to the show on BBC iPlayer here (starts at 41 minutes in). For those of you who are unable to access the recording I have written up the interview below. Enjoy!

With BBC presenter Nick Coffer.

NC: Let’s talk about a condition that is very common but little spoken about. I say very common as two of my very best friends have it. Apparently 10% of women of what we call reproductive age have endometriosis. It’s a condition that can cause chronic pain, fatigue, fertility problems. Claire Barker from Hertfordshire is with us, and clever, as she is doing a PhD in Psychology. Does this make you super clever?

CB: Oh absolutely <laughs>.

NC: Claire was diagnosed with endometriosis in 2014 after 1  years of symptoms, and she started her own blog- it’s called ‘The Endo The Wold?’ and it’s about her experiences with the condition. Endometriosis for me is one of those words that is very much in our common consciousness but we don’t actually know much about. I put it along things like PCOS. These things that are very specific to women. We have friends who have them, we have heard of them, occasionally they will pop up in ‘OK! Magazine’ or a celebrity will talk about them, but actually we know very little about them in the public.

CB: Yes. That’s there is some data to suggest that for the general public about 20% or less of people know what endometriosis is and can accurately describe it.

NC: We know it’s pain, we know it’s discomfort, and we think of it as being related to the reproductive system. So what is happening? What is your body doing?

CB: Ok. So, with endometriosis, cells that are similar to the cells that line the uterus that you usually shed during your period, those similar cells are found outside of the uterus- usually in the pelvis, and implant on other organs and tissues.

NC: Bad cells!

CB: Exactly. They respond exactly the same way that the cells inside your uterus do. So they are responding to hormones throughout the month, then they break down when you have your period and start to bleed. The problem with that is that when they are outside the uterus the blood has nowhere to go- this can cause lots of pain, cysts, adhesions…

NC: You mentioned periods four times there, and therein lies the problem because the symptoms can be similar to bad period pain can’t they? They are cyclical, they can involve blood, and they can be somewhat written off.

CB: Yeah. There is a cultural element to that as well. Periods can be difficult to talk about. And endometriosis can run in families, so if you’re struggling with those symptoms it’s possible that your family have as well. So when you’re complaining that you have painful periods your mum or gran will say they did too, so it completely normalises the pain for you, and then your opportunities to seek out help are reduced from there.

NC: But this goes back a long way to the turn of the millennium for you. You are now 29 so you’ve really been dealing with this since the age of 14? That’s a long time to go without anybody saying ‘OK Claire, this is where we’re at’.

CB: Yeah! It was an absolute nightmare to be honest with you. I first started going to my GP when I was 12 years old complaining of crippling period pain. But as the years went on, and I didn’t have any kind of diagnosis, I was adding a menagerie of strange symptoms like fatigue, bowel pain, chest pain…

NC: Can I just say anyone who uses the word ‘menagerie’ on my program is welcome back any time! Can you say it again? I like it!

CB: <Laughing> I was adding a menagerie of symptoms over time.

NC: You make symptoms sound so lovely!

CB: I know. Seriously though it was awful. Just having all these things going wrong with your body but having no explanation for what’s wrong.

NC: That’s the thing isn’t it, having this firework effect of things going wrong, and at the same time being tired, being in pain, it’s worrying as well.

CB: It was really difficult. For two or three years before my diagnosis I was so ill that I was watching my life crashing down around me as it was so hard to do my PhD, or maintain my relationships, and I was engaged at the time, and everything was so difficult. And when you’re constantly told that you’re ‘fine’ what can you do? What help can you get? How can you communicate what’s happening to anyone?

NC: Are you saying that the endometriosis had led to the breakdown of good relationships in the past?

CB: Most definitely. But it has also been hard to maintain my friendships too when you aren’t well enough to go out and you are not yourself anymore you know, your depressed and low and anxious. You’re not the same person and more and people see a change in you. But because you don’t have a diagnosis how can you communicate these experiences to anyone and be believed?

NC: It’s quite a pernicious condition when you think about it, because it attacks the very things that define you as a young woman. It attacks your energy levels, it attacks your mood, and I’m making assumptions but it attacks your ability to have a fulfilling sex life as well because if you’re feeling that rubbish and that much in pain we can join the dots on that. So it really goes to the heart of you as a young woman.

CB: It does, exactly, you’ve hit the nail on the head there. Endometriosis strikes in the prime of your life, unlike many conditions. I don’t think there are many diseases that can affect you both physically and mentally and every aspect of your life like endometriosis can. Particularly if you are struggling around diagnosis. It can be devastating to women’s lives.

NC: Talking about diagnosis here’s the bit I don’t understand. Surely if one in 10 women of your age suffer from it, it should be at the top of every GPs list?

CB: I know! There’s lots of different reasons why there is such diagnostic delay in endometriosis. The evidence suggest that it takes an average of 7.5 years min the UK from women first going to their GP with symptoms to being diagnosed.

NC: How do they find it? What do they look for?

CB: OK, one of the problems if that there are lots of different symptoms. Chronic pelvic pain and sub-fertility are two but there are many others. Another problem is there is a lack of a good diagnostic test for endometriosis. The only certain way to diagnosis it is through a surgery called a laparoscopy.

NC: You’ve had two of those haven’t you?

CB: Yeah I have.

NC: And what happens there, bearing in mind this is a lunchtime show.

CB: <Laughs> Don’t panic, it’s fine. It’s a keyhole surgery where they make a few small incisions, and they go in with a camera and have a look around your pelvis. And the surgeon, if they’re highly trained, are able to see the spots of endometriosis where they occur.

NC: So they can actually recognise it…

CB: Yeah. So it can look very different- it can look yellow, it can look black, it can look red, it can look really different, so you need somebody who is very highly trained to recognise it. They can also treat it at the same time.

NC: They basically scrape it away don’t they?

CB: Yes, ideally, they cut it out, which is what I’ve had. And hopefully you feel a whole lot better afterwards.

NC: Am I right in thinking that fundamentally this is it- it’s a chronic condition that never goes away?

CB: Yeah. There is no cure for endometriosis. But there is hope. I mean since I had my last surgery over two years ago I still feel like a different person. And there are lots of things that can be done to help. So I think that getting that diagnosis and then working with a doctor who really knows their stuff is the way forward.

NC: As a broader question, are we guilty for trivialising women’s symptoms? We are very quick to take the mickey or say ‘oh it’s just period pain’. But is this part of the problem?

CB: In a nutshell- yes! This certainly does happen. It happens on a micro level in your family but there is a wide attitude in society- with GPs and employers, like this. Lots of times I went to the GP and was told I’m just unlucky and that periods hurt. I think that because periods are such a common thing-half the population will have them, but most people don’t suffer horrifically so there can be a real lack of empathy there.

NC: Now you’ve got your baseline- you’ve had your surgery, how do you go about, and I’ve read your blog, leading a fulfilling life?

CB: With difficulty to be honest. This is something that was really interesting to me. I always thought when I get a diagnosis and treatment for whatever is going on with me, everything is going to be fixed and back to normal. But if your life has been falling apart for some time then it isn’t going to be fixed in one surgery, it’s a real process. For me it involved a mixture of counselling, diet, and exercise.

NC: As a PhD Psychology student have you resorted to traditional counselling to get your sense of self back on track?

CB: Yeah I had to. That’s been a big part of the journey for me. Obviously, I spent over a decade being told that I wasn’t sick when I was, so that brings up a lot of feelings like anger to work through. And I think realising that I have limitations placed on me that I didn’t know I had before. But I wanted to work through these. So counselling has been so helpful to me and I would highly recommend it to others.

NC: What’s the prognosis for you? I know you have a partner now, are you able to contemplate things like marriage and children? Can you talk about this stuff? I imagine communication is such an important part of living with the condition.

CB: It is. I’m actually married now…

NC: I apologise to your husband to demoting him to the rank of partner! <laughs>

CB: It’s fine. I am married and I was diagnosed shortly after we became engaged actually. When I woke up from my first surgery I was told fertility would be a big problem for me, and so that throws up this awkward conversation we had to have where I had to say you know ‘I love you and I want to marry you, but you have to be sure you’re OK with the fact that kids may not be in our future.’ That was massive deal. And we’ve been fine you know, we’re together. Fertility is something that has proven to be a struggle for us, but that’s something that we are working through together at the moment.

NC: I know it’s the worst thing in this situation when you’re going through fertility problems, but my best friend was given the bleakest prognosis for fertility when she was diagnosed with endometriosis and she went on to have a daughter, so it can happen. It’s not entirely bleak, I’m sure you’ve been told that there are options available for help.

CB: Yeah. And I think it’s important to have a positive outlook as much as that’s possible. It aint over until the fat lady sings as they say. So it’s important not to write yourself off until you’ve explored all possibilities.

NC: So the blog itself, why did you start it?

CB: Well…

NC: I know the answer by the way, it’s because you thought of such a great name! The Endo the World?

CB: Ha yeah! I was so happy when that wasn’t already taken. When I as diagnosed it certainly felt like the end of the world. And I thought I’ve just been diagnosed with this life changing condition, now is a good chance to document my story as I love to write. It was also a way to connect with other women around the world, and that’s been one of the best things about it for me I think. It’s so weird- I’ve talked to people from Hawaii, Canada, France, to know that people everywhere are living the same truth as you.

NC: As somebody who has also lived the blogging experience I know how powerful it can be. You can find Claire’s blog at theendotheworld.com. And rather spectacularly, you can find Claire on Twitter as @EndoLadyUK. It does make you sound like a superhero.

CB: That was the plan. I’m thinking about wearing a cape full time <laughs>.

NC: If ever there was a book or novella in that, it would have to involve Endo Lady UK. So go and follow Claire- she’s lovely. And I know you are a big advocate of Endometriosis UK who have been a big help to you haven’t they.

CB: Absolutely- they’re fantastic. Go check out their site- there is loads of top quality information on there.

NC: You’ve been lovely, thanks for coming on.

CB: Thanks so much for having me on the show.

NC: You’re welcome, these things deserve a platform. And I have no doubt at all that a number of my regular listeners are in a similar situation.

People keep telling me that I am ‘brave’ for sharing my story so publicly, but it doesn’t feel that way to me and I enjoy it. It is not my fault that I have endometriosis and I am not ashamed of it. As far as I’m concerned I’m much more brave for living with this horrible condition everyday!

I’d love to hear your thoughts on the interview, and your own experiences of endometriosis.

Much love,
Claire
xxx

NICE publishes new guidelines for endometriosis care.

Great news- NICE have now published their new guidelines for the care and treatment of endometriosis. It is hoped that this will be a step towards reducing diagnosis time and improving the quality of care that women with endometriosis receive in the UK. You can access the full guidelines here.

I am so excited to see how much media coverage this has produced over the past couple of days. It’s always joyous to me seeing endo getting the attention and publicity is so desperately needs. My favorite coverage includes an article in The Guardian, a feature on the Victoria Derbyshire Show,  and a piece on Newsbeat.


I was also given an exciting (and very last minute) opportunity to discuss my own experiences of endometriosis and my reaction to the new guidelines on ITV lunchtime news with Alastair Stewart. I’ve been really touched by the positive reaction this short interview has relieved and am so glad I could contribute to the discussion in my own small way.  You can watch the full interview back here.

I’d love to hear your reaction to the NICE guidelines? Do they go far enough and do you think they will make a real impact for women with endo?

With love,
Claire
xxx

Ten tips for living well with endometriosis from the EUK Information Day.

A little while ago I attended an Information Day hosted by Endometriosis UK in London. It was mainly aimed at newly diagnosed women and their friends/ families, but I thought it would be fun to go along to catch up with people and to hopefully pick up some new tips.

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Image credit: Endometriosis UK

I thought it might be useful to share some of the useful tips I picked up along the day for those of you who wouldn’t be there in person.

1- Find and build your tribe.
Having endometriosis is really rubbish, and can feel very isolating and frightening. Invest time and effort building up a support network of fellow endometriosis suffers (aka your ‘tribe’) as they are more likely to understand and relate to your struggles than your family and friends who do not have the disease. Fellow patients can also be an excellent source of information and advice. You can start building your tribe through local support group or online support groups.

2- Specialist nurses can be a valuable asset in your journey.
If you are being treated in a BSGE centre for endometriosis, there will be a specialist endometriosis nurse at the hospital whose role it is to support you and to  advocate on your behalf. These nurses have a wealth of knowledge and experience about living well with endometriosis, and also have more time available than consultants to discuss your history, goals, and treatment options. If you are being treated at a BSGE centre, but aren’t offered an appointment with a specialist nurse raise this with your medical team.

3- You are the CEO of your body.
When you have a debilitating disease like endometriosis it can be easy to feel that you lack control over your body. However, we can exercise a lot of control over many of the factors that influence pain; such as sleep, diet, exercise, and stress. Take ownership of your body one step at a time and you are likely to start feeling positive effects. The Pain Toolkit can be a really useful starting point for this. As can keeping a pain diary.

4- Exercise is your friend.
It can be very gentle and take place at home. Start small and build up, but regular movement promotes general health and can help to reduce pain thanks to endorphins. Many women at the event shared their experiences and the consensus seemed to be around yoga, swimming, and pilates as particularly helpful.

5- Endometriosis is a highly individual disease.
There are no quick fixes or easy answers. What works some for some people won’t work for you, and vice versa. Don’t get discouraged. Take time to get to know your own body, and think through what matters to you before deciding on a treatment strategy.

6- If you don’t ask, you don’t get.
Whether it be a specialist endometriosis nurse or a referral to a pain management team, you’re often only likely to be offered services when you have directly asked for them. Do your research about what services are available, and make sure you advocate for yourself. Services are out there to be utilised.

7- Progress is being made to improve the patient journey….
During the Information Day the presenters discussed the new NICE guidelines for endometriosis which will soon come into force and will hopefully positively influence patient care. Other initiatives aimed at improving research funding for the disease were also raised. This is all really positive progress and shows that endometriosis awareness is continuing to grow. This can only have a positive impact on us as a patient community.

8- …But conversely, lots of the old myths still exist!
Lots of the ladies present at the Information Day said they had been advised by their doctors to have a baby or hysterectomy as a cure for endometriosis. The debate about the benefits of excision vs ablation surgery was also discussed. The take home message- see the most experienced doctor you can and view all information provided with a critical eye. You are the CEO of your own body after all, don’t do anything you’re uncomfortable with.

9- Endometriosis is a life changing illness.
Don’t let anybody undermine your experience or tell you otherwise. Yes it’s not cancer, and no it’s not likely to kill you, but it’s still a pretty big deal.

10- There is hope.
There were lots of women with endometriosis at the Information Day who have been diagnosed with endometriosis for a very long time, and who had learned to thrive despite the awful experiences they had endured. Carol Pearson gave a particularly inspiring speech which reiterated that sometimes you don’t ended up living the life you would have planned for yourself, but that life can be one hell of adventure anyway. Oh, and she also reminded us to keep shouting loudly about endometriosis whenever you can. Change can and will happen for endometriosis, and we have such power to bring that about from within our community.

I hope this was useful. Sometimes it’s good just to reinforce the important tools that we know, as knowing and doing can be two separate things! I’d also love to hear your single top tip for living well with endometriosis!

Love,
Claire
xxx

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