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

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

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

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

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.

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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.

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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 fertility is Schrodinger’s cat.

While sitting in the hospital waiting room the other day waiting for my name to be called- it was my post excision surgery checkup, I could feel my heart starting to beat really hard and fast, my palms became sweaty, and my eyes starting to well up with tears. In my hand was a list of questions I hoped to ask in my appointment, most of which concerned fertility. It’s well established that endometriosis is linked to a lower rate of fertility, with increasing severity of the disease further decreasing likelihood of conception. I’m a stage four gal- never wanting to do things by halves, and this has been worrying me since my diagnosis in August 2014. Between you and me, Mr B and I are just starting to try for a baby, so the fertility issue has been on my mind a lot lately.

Sitting in that over lit waiting room  I had a sudden epiphany- my fertility is Schrodinger’s cat! For those not as nerdy as myself, ‘Schrodinger’s cat’ is a thought experiment from Physics, which postulates that it is ‘observation’ (i.e ‘looking’) that makes things real . This short video explains the basic premise very well:

In this scenario the cat is my fertility and the poisonous gas is the toxic combination of my endometriosis and adenomyosis. Good right? My brain fog had clearly recovered enough to formulate a high level metaphor- progress right there!

As I’ve never tried to have a baby before, my fertility is simultaneously dead AND alive- and we won’t find out which until we try. There are no definite answers to be given right now.

The uncertainty of this situation scares me. It follows me around daily like a big black cloud hanging over my head that nobody else can see. I want to beg my doctor for concrete answers about my situation. Perhaps a definite  ”you can’t” would be easier to handle than constant ”maybe you cans”? Although to have hope means something. You never imagine that you will have to question your fertility, it’s just there until you need it right?! I’m in my 20s, this can’t be happening! The pain of this certainty being taken away is just indescribable.

Worrying about your fertility can be a very lonely experience, especially when you have loads of friends who are all pregnant or new mothers.  I’m so happy for them, I’m just sad for me. Maybe unnecessarily sad, but still sad. But I was never the girl who daydreamed about having kids; dressing up dolls and picking out potential baby names. It was meeting Mr B that changed all that. Crafting out our future together I can totally see children in it. I want that. I’m ready! I think I’d be a good mother. He would be the most AMAZING father.

In my appointment, which ended up being with an specialist endometriosis nurse (which was excellent by the way- she gave me an hour of her time and answered all of my questions with a high degree of knowledge and empathy), I tried my best to explain all my fears:
1) How I constantly swing between positive thoughts (‘‘Your Fallopian tubes are clear” and ‘‘You’ve had excision surgery now, that will help”) to negative ones (”Your right ovary is a wreck”, ”You have to much inflammation” and ”You have adenomyosis”) a thousand times a day in some weird fertility related bi-polar.
2) How I’m so scared to come off hormones as being on them has kept me going for most of my life, and because I’m scared that my endometriosis and adenomyosis will go wild without them.
3) And how I’m so scared to face an infertility journey, if that what comes, and am not ready for it. I have become familiar with what it does to people and I feel so guilty for the possibility of my husband never being a father or my mum and dad grandparents.

We can call this 'Plan B'.

We can call this ‘Plan B’.

”You’re a worrier aren’t you?!” my specialist nurse commented. That’s true, but I’d call myself a realist. How can I not be, when I’ve done my reading and met so many people affected by this problem? It’s another example, so familiar to us those living with chronic illnesses, that people ‘don’t get it until they get it.’ They never will.

Right now I can’t answer all of these fears. Nobody can. All I can do is try and see what happens. It’s time to open the box and reveal the kitty’s fate. But I’m so scared to look inside, I don’t know if I can handle what’s in there.

I’d love to hear your thoughts and experiences of fertility with endometriosis and/or adenomyosis. Did you fear the worst but get lucky? Or do you stay positive that things will work out?  Are you aware of actions to take which may help?

Love,

Claire