We need to talk about the endo-diet.

There will inevitably come a time following your diagnosis with endometriosis when you stumble across ‘the endo-diet’ for the first time. This may be through your own research efforts, the result of your attendance at a support group, or like me you may be randomly given a book on the subject by a well meaning friend. I classify it as one of those entities in life that once known can never be unknown-for better or for worse. But this topic is interesting food for thought (excuse my pun-I think I’m funny) and an excuse for some soul searching.

This was on my desk one morning. That actually happened.

This was on my desk one morning. That actually happened.

I’m not going to dwell on the ins and outs of the diets’ specifics here as I presume you are familiar with at least its basic premise. However, for you culinary newbies out there, it can best be described as the elimination of foods which foster inflammation and/or act as endocrine disruptors. This helpful image below shows which foods are recommended and restricted:

endo diet

I am a member of several Facebook groups dedicated to endo-recipe sharing and tip swapping, follow endo-diet pins on Pinterest, and keep a scrap book of suitable recipes which I make on a frequent basis. You could call me an enthusiast or a convert. I started eating kale, I bought a nutri-bullet to make smoothies, and I now use a variety of coconut based products. And I’m not the only one. There is no shortage of posts on social media or in the press from advocates of this eating style claiming that it solved their problems with chronic pain and/or infertility.

Now don’t get me wrong, I’m all for us endo-sisters taking positive and constructive action to regain some control over our health and to better manage our symptoms. In fact, I actively encourage it. However, some aspects of the endo-diet, or perhaps the movement that surrounds it, do not sit comfortably with me. Here’s why:

It’s super restrictive!

Have you seen what you can’t eat on this diet?! I mean seriously?! If you’re going to do it properly (and I’m one of those all-or-nothing types by nature) you can kiss goodbye to that Friday night pizza and beer, the big cheese-burger at your neighbour’s BBQ, your cups of tea at work with your colleagues, or even the yoghurt you have every day as your mid-morning snack. Do not talk to me of gluten/caffeine/dairy free alternatives- I lived with these things for months and have decided that most are pure unadulterated evil. I have vowed to never eat another co-yo. Basically, you have to quit all the little things that make life worth living.

coyo

I have put an end to this tyranny.

As much as I enjoy kale, avocados and quinoa, you can only eat them so much of them before you start loosing the will to live. Besides, I get super grouchy when I’m hungry (or ‘hangry’ as my friend calls it) and I have enough problems to be dealing with as it is without adding to them…just sayin’.

It sets you up to fail.

So this diet is tough, and therefore only the most dedicated or those most determined to completely purge their lives of joy are likely to be able to stick to it. This sets the rest of us up to feel like failures, or at least, I did. Several times I mentally berated myself for eating a cookie or a slice of bread, and that’s when I new that my pursuit of perfection in this diet had allowed me to blur the lines between self care and self abuse. That is not a healthy place to be.

It places responsibility for your pain on your lifestyle.

”In pain but you still eat gluten, or dairy, or caffeine? Well, you’re basically bringing the agony, fatigue, and infertility on yourself then lazy chops. It’s your lifestyle, it’s your choice.”

Nobody has ever explicitly said this to me, but I do sometimes sense it under the surface in my own interactions and in some of the stuff I’ve seen online. Like when people say: ”Is that brownie gluten free?” when they see I’ve order a desert. Or this woman banging on about how she went organic and just ate vegetables and then got pregnant after a decade of infertility. There is a sense of one-upmanship and competition to it that is really distasteful somehow. But I didn’t ask to have endometriosis, or adenomyosis, or chronic fatigue, so I will not be held to ransom by them.

It is not a cure.

I’m a scientist by trade so skepticism is but second nature to me of course. I just think that the benefits perceived from this diet probably just stem from people generally eating more mindfully and healthily, rather than due to the elimination of specific food types. And that’s a good thing- making healthy choices can only help our bodies and minds to cope with the onslaught that endometriosis throws at them.

But to me, that’s all the endo-diet is- a healthier choice, along with yoga, and acupuncture, and all the other things I have so desperately tried in order to claw back some control over my life and end the relentless pain I was experiencing. And do you know what? They have helped, my pain is significantly reduced from this time last year.

What these things aren’t though is a cure, and that’s what we all so desperately want and need. I will focus my energy on campaigning for that any way that I can. (Not that it claims to be a cure of course, but a symptom modifier, but I think it is paraded around in that way in some unsavory corners of publishing and social media. Not cool dudes.)

So now, I think I am living in a happier middle ground, or at least I try to, and that suits me much better. I am conscious of what I am putting into and onto my body, and have revamped my kitchen skills and culinary repertoire to boot. My husband loves all the new foods I’ve been making too which is great. I still attend my boot camp sessions too which help me a great deal.

But do you know what? If I want an ice-cream I’m going to have one, and you can bet it isn’t make with soaked cashews or coconut milk! 🙂

I’d love to hear all of your experiences and thoughts on the endo-diet! I totally accept that people have both posotive and negative experiences in this area. Has giving up gluten saved your life or driven you crazy? Do you have a favorite recipe? Do you follow the diet strictly or just reduce rather than eliminate certain food groups?

Love,
Claire
xxx

How music helps me cope with the physical and emotion pain from endometriosis.

It’s now been nine months since I had my laparoscopy and was diagnosed with endometriosis. It’s been one crazy roller-coaster ride. Upon reflection, I think there are some positives to my chronic illness story so far; endometriosis has forced me to dig deeper than I ever thought possibler, has taught me the true value of health and happiness, and has shown me who my real friends and family are as well as how to value them.  What I hate though is how, in your darkest times, endometriosis makes you feel so lost and alone with a massive burden to carry. No matter how openly or sincerely people are ”there for you”, it can be very difficult to open up about how you are really feeling. After all, I’ve found that my thoughts and outlook often changes from day to day depending on how I am physically and/or mentally. And besides, I’m still just trying to come to terms with all this stuff for myself, so I don’t need to share all the gory inner-workings of my mind with the whole world just yet.

One thing that I have found that really helps me to process difficult emotions is to listen to songs that has lyrics or a melody that encapsulates an aspect of how I am feeling. I’ve always been into music and appreciate listening to loads of different genres, from classical and jazz, to rock and rap. I was also a dancer growing up, so escaping reality in this way is not a new strategy for me. When things get too much and I just don’t know what to do with myself, I put on my noise cancelling headphones, load up my Spotify, and block out the world with the songs that I know will say the things that I don’t want to. It’s super cathartic and helpful.

I thought it might be fun (or at least interesting) to share some of the songs that have helped me with you all. Think of it as ‘my endometriosis playlist- the edited version’ (my full endo playlist has around 150 tracks on it!):

1. Crystal ball (Keane).

”Who is the man I see
Where I’m supposed to be?
I lost my heart, I buried it too deep
Under the iron sea.”

I’m a big fan of the band Keane, which I’m aware isn’t a hugely fashionable thing to admit. Their lyrics are so good at articulating the deepest and darkest insecurities that we all have, and I find that they often help me to make sense of my feeling about my endometriosis even though they were written about other topics, usually love or friendship.

This song is about feeling emotionally disconnected from your life and discontented with how it’s working out, but feeling powerless to put things right. There are times in the past year where I have felt so low it was unbearable, but listening to all of the lyrics of this song reminds me both that I am not the only person to have felt this way and that I don’t want to always feel like this.

2. Big girls cry (Sia).

”I may cry, ruining my makeup
Wash away all the things you’ve taken
I don’t care if I don’t look pretty
Big girls cry when their hearts are breaking.”

I find Sia’s voice amazing and I could listen to her all day. This song regularly makes me cry because I totally understand the ‘tough girl’ who is inconsolable and brokenhearted. I am that girl- I’ve done A LOT of crying this year. Some of her videos are also really cool actually, and represent a child and a warrior doing battle. I find that I relate to these two battling states of self in relation to my own endometriosis journey, being simultaneously the girl who would stop at nothing to get answers and the girl who just wants to be looked after and told everything will be OK.

3. Bumpy Ride (The Hoosiers).

”It’s gonna be a bumpy ride
But it sure beats standing still.
I know we can work it out,
And I’ve no doubt that we will.
When it hurts more than it shows,
It’s not the easiest of roads.
No it’s never black and white,
And you can keep your happy life.”

This song is totally daft, but it always cheers me up as it reminds me that even though this isn’t the journey or life I would have chosen for myself, that it can be (and is) a good one. I won’t be beaten by endometriosis, but right now I am still finding my feet and traveling this rocky road. But do you know what? That’s OK, I know I will reach steadier climbs eventually.

4. A bad dream (Keane).

”I wake up, it’s a bad dream
No one on my side
I was fighting
But I just feel too tired
To be fighting
Guess I’m not the fighting kind.”

This is another Keane song for my gloomier moods. It is actually a beautiful song about the ironies of war. I think I relate to it about war too, but the one that’s going on inside my body. As I have outlined in this post as well as some others, having endometriosis can feel really isolating and like you constantly have to fight to get the treatment that you need. Sometimes, I find emotions around this extremely difficult, and these lyrics along with the sombre melody articulate these feelings better than I ever could.

5. Superheroes (The Script).

”When you’ve been fighting for it all your life
You’ve been struggling to make things right
That’s how a superhero learns to fly
(Every day, every hour
Turn the pain into power).”

This choice is pretty straightforward. I’ve been battling endometriosis since I was 12 years old. It has certainly made me stronger, and I am proud of some of the things I have done since gaining my diagnosis to raise awareness, such as attending the EndoMarch and blogging on this site. On some days, just for a minute, I sit and reflect on what I’ve been through and think ”Damn, I’m a bit of a badass superhero.” I bet you do too! 🙂

In the past few weeks I have started to freak out about my future again, and I have noticed that my music consumption has shot up. I just don’t know how to tell people that I’m not OK, and it’s driving me crazy. I just turn to songs as a best friend when I need them. They almost always give me the advice I need and I always feel better for spending time with them.

I am sooooo interested to hear about the music that has helped you through your endometriosis and/or chronic illness journey. Is there a particular song or lyric that perfectly depicts an experience or emotion you’ve had? Perhaps you could tell me what your endometriosis sound track would be. Or (even more excitingly) have you written your own music on this topic? Please do get in touch and share your thoughts.

Love,

Claire

xxx

How a military style boot-camp helps to manage my chronic pain from endometriosis.

Trying to exercise and keep fit when you have a chronic illness is a weird experience, as I have come to realise over the past year. In attempt to gain some control back over my health I joined a military-style boot camp class about 11 months ago and have been attending at least three times a week  ever since. I see lots of debate online about the benefits of exercise for chronically ill people, and whether exercising is even achievable for us, so I thought writing about my own experiences might be helpful.

I think the first thing to acknowledge is that my fitness journey has not been easy. Some of the barriers to maintaining my program over the past year have been as follows:

Lacking the physical and mental energy required: When you feel terrible ALL THE TIME, the last thing you feel like doing is dragging yourself outside to run around a field. About 97% of the time my body is commanding me to lie down to sleep and/or eat chocolate. The incredible amount of sheer will power it takes to pick yourself up and go out to exercise is truly beyond the comprehension of most people who have not experienced it. I’ve dragged myself out feeling physically sick from fatigue or with horrible cramps more times than I can remember- and I always class this as a huge achievement in itself regardless of what happens at my training session.

Maintaining  confidence in yourself and your own journey: When everyone else seems super fit and are breezing through the exercises, and you’ve got bad cramps and are wheezing away at the back of the group it can knock your confidence. I’m always careful to focus on my own improvements and achievements rather than comparing myself to other in the group (who blatantly don’t know how easy they have it ;-p). And as I gradually improve, the more confident I feel.

Needing the willpower to pick yourself up when you’ve fallen off the wagon: If I’ve had a flare or a surgery etc I won’t have exercised for a week and maybe much longer. Picking yourself up and getting back into the routine can be really tough, and you often need people around you to give you a little nudge in the right direction. For me that comes from the fitness trainer who sends me nice text messages and from my friends in the group who are keen to catchup with me.

Having to face other people’s ‘little comments’: Loads of people have insinuated that I can’t really be *that* ill if I am able to exercise on a regular basis.  For a while this actually made me question myself about how sick I actually am, but I now  know how stupid this is as well as being downright rude. But I’ve realised that these people are just trying to make sense of the two conflicting narratives I am presenting them with- very sick person and dedicated fitness guru. Heck, I’m still trying to make sense of that myself. I try to explain to them how difficult it can be, how I have to work at my own pace, and about how exercise has been helping to safeguard and improve my health. They still don’t get it, but that’s OK, this is about me.

This. Always this.

This. Always this.

So, exercising with endometriosis can be tough. I should also point out that before my diagnosis I had several failed attempts at getting fit, as I didn’t know what I was doing or why I was ill so I was unable to manage myself and just made all my symptoms worse. That was pretty demotivating.

However, I think these things are far outweighed by the physical and psychological benefits I have experienced since starting my boot-camp program. For example, a couple of months ago I took a break from the exercise because of work commitments, and my pain went off the scale, which then prevented me from rejoining the group. After a while I realised my pain just wasn’t going to get better so I went back anyway. And since then I’ve only taken painkillers one time instead of multiple times a day. Many times I’ve turned up to a session in pain, only to feel it melt away as I get going. I cannot emphasize enough the huge difference exercising regularly has made to reducing my chronic pain and fatigue. My bowel problems have made a significant improvement too. Don’t get me wrong, I’m not miraculously cured, but I am in a much better place with my life now. This effect takes a few weeks of solid routine to kick in though, and during this period you do risk being more tired and experiencing more flare-ups. Pushing through while also looking after yourself is the challenge to master here. Searching online, I found examples of other women with endometriosis who have had similar results (see here for one example), so I encourage you to read them if you’re thinking of taking up some for of physical activity.

Get me squatting like a badass! The beautiful scenery motivates me too.

Get me squatting like a badass! The beautiful scenery motivates me too.

Attending the classes has also had a profound effect on my mental health, which has taken a considerable battering since gaining my endometriosis diagnosis. When driving to each session, those dark little voices in my mind are chanting ‘you can’t do this, you can’t do this, you can’t do this.‘ But every single time I do, and I never miss the opportunity to reflect on what an accomplishment that is. I honestly never feel more alive or strong or healthy than when I’m running around on that field, sweating like a pig. Sometimes it is the only point in the week where I actually feel alive; not in pain, anxious, alone, or depressed. This makes me realise how strong and fearless I can be.  I’ve also made some really lovely friends at the sessions, and that helps when you’re going through a tough time.

And I can’t write this post without acknowledging what a wonderful fitness trainer I have. I’m not religious and I don’t believe in fate or anything, but he seems to have come into my life at exactly the right time to help me through this endometriosis crisis. Isn’t it funny when these things happen?? The way he has supported and looked out for me has been very special- reading up on fitness management for endometriosis and chronic pain. He is also brilliant at tailoring the sessions to suit my needs on any given day depending on how I’m feeling.- he gets that balance of when to push me and when to stop me totally right. He can tell from the smallest of looks on my face how I am feeling and will talk to me about it in such a sensitive and thoughtful way. To this day when I answered the question ‘How are you?” with my usual ”Fine thanks’‘ he is the only person to look at me and say ”I know you’re not. Life’s just a bit shit right now yeah?” Cue floods of tears. When I had a break and was in constant terrible pain (as I mentioned above), he gave me free personal training sessions for a month to get back into things and to help me develop my confidence again. He is totally life coaching me too- this guy is an absolute legend.

So if you’re interested in taking up exercise to help with your endometriosis,  I have the following tips from my own fitness journey that may be helpful. This is, of course, aimed at people who are not incapacitated from their endometriosis and are capable of being up and about most days. I totally accept that some people are in too much pain to exercise:

  • Start slowly and build it up- maybe with swimming and/or walking. I went head first into a boot-camp (as I’m pathologically drawn to extremes) but I wouldn’t actually recommend doing that straight away.
  • Try and find a trainer/ instructor who you can confide in, and who is knowledgeable and supportive.
  • Build a fitness plan and stick to it- maybe Monday, Wednesday and Fridays as non-negotiable, even if you are feeling tired or awful.
  • But conversely, know your limits and if you are too unwell stay at home and don’t beat yourself up about it.
  • If you can do something, it is always better than doing nothing, even if it is just a walk.
  • Join a group activity- you will meet new people and it will keep you accountable for sticking to your program. You will turn up if they’re waiting for you.
  • And lastly, believe in yourself. You CAN do it and you deserve the benefits it will give to you!

I’d love to hear your stories (positive or negative) about exercise and endometriosis. What type of activities work for you and what doesn’t? 🙂

Love,
Claire
xxx

Endometriosis: My diagnosis story.

One vivid memory from my childhood, I must have been 9 years old, was nervously asking my mum: ”Do periods hurt?” My mum was always brilliant at handling all questions birds and bees, and she gave me a characteristically diplomatic answer along the lines that most people find it OK, and manage with a hot-water bottle or some paracetamol if needed. I was comforted, but secretly felt that I would be one of the unlucky few at the severe end of the spectrum- I am a natural pessimist. ”But what will that feel like?” I wondered.

Fast forward 15 years and it’s definitely been a case of worst case scenario confirmed.When I have a period I stay awake for days, in agony, lying in the fetal position or pacing my living room. Painkillers do nothing. A hot water bottle helps a bit, enough to stop me from passing out at least. On the plus side, all the nights awake have given me a lot of extra time to watch documentaries and read things, so my general knowledge is pretty good now.  I was on the pill for seven years (I had emphatically insisted to my GP that I would fail my GCSEs if I didn’t have it) and found that had helped to mask my symptoms and make life bearable again.  However, I experiencing a bout of chronic and debilitating  migraines in 2010, my doctor suggested I stopped taking it. No substitute or alternative medications were discussed, I was just left to get on with things. When I raised the problem again and again I was always given a prescription for Mefenamic Acid and sent on my way, despite my protestations that the drug has little effect on me.

So, I was back to square one. To make things worse I had started to experience some additional symptoms over the past year- severe stomach upsets, exhaustion that would not go away no matter how much I slept, headaches, and pains in my abdomen, chest, and shoulders. Fed up and very anxious, I went to see my new GP (I had moved house), who referred me for some blood tests. They revealed an elevated ESR score- which is an unspecific marker for inflammation somewhere in the body. I had a number of scans, but they all came back clear, so I was sent on my way again.

A year passed by where I just struggled on with no help, and struggling to make sense of what was happening to me.  It got the the point where I really wasn’t functioning on a daily basis, so I went to see my GP again. This time I insisted on being referred to a specialist- and was promptly sent on my way to gastroenterology. Over the next 12 months I had an array of tests (blood cultures, CT, ultrasounds, colonoscopy, endoscopy etc) and many potential diagnoses were banded around (Chron’s disease, IBS, coeliac, CFS, pancreatitis to name a few), but it mainly seemed to be lots of stabbing in the dark and little concrete progress. On one occasion shortly after this, my stomach upsets became so bad that I was unable to eat or drink for five days, and was hospitalised over a bank holiday weekend attached to a potassium drip. Again, I had an array of slightly odd test results (elevated ESR, blood in my urine etc), but since it was a bank holiday nobody was really about to look into things, so I was sent on my way again.

As a last ditch attempt to investigate the elevated inflammation markers in my blood work, my gastroenterologist agreed to me having an MRI scan of my small bowel- as Chron’s disease runs in my family. The test was slightly more dramatic than I planned (as is my general style) as I had to drink a litre of what I can only describe as ‘death juice’ before the scan could go ahead- and I struggled (read: mainly failed) to keep it down. Slightly hilariously, as I was projectile vomiting it across the room for the 10th time, a nurse commented: ”Do you just not like drinking it? Is that the problem?”Anyway, once that particular ordeal was over with, I didn’t hear anything for about two months, so I presumed that, as usual, the test had come back clear- no news is usually good news in these circumstances I find.

Out of the blue one Tuesday morning I received a letter from my consultant, saying that my intestines look OK, but I have a 5cm by 5cm ovarian cyst, and as a result she is referring me to gynecology. On a side note, I found this news very disturbing to receive by post. It naturally prompted ALOT of questions to come up, but I had nobody to direct them too. Dr Google wasn’t much help either as there are so many types of ovarian cyst, that I couldn’t guess which type I may have.

After waiting a few weeks I had an ultrasound scan to see if this cyst was still there, as many just reabsorb on their own accord. Sadly, it was still there, and the ultrasound lady kept giving me her ‘pity’ face. This can’t be good I thought- which was confirmed the next day when my GP called and asked to see me. She explained that my cyst was the solid, sinister kind and that as a result she was giving me an emergency referral to an oncologist for three days time. I cannot describe how stressful those three days were. Time almost stood still, but my heart was beating at what felt like a thousand beats a minute for the entire time. When I was sat in the waiting room on the morning of my appointment I just kept thinking: How has this happened? How have I ended up here? It was not a good time for me. After looking through my notes he quickly put my mind at rest, as he suggested that I have endometriosis, and was sending me for a laparoscopy and cystectomy to confirm this.

I found the six week wait for the surgery quite difficult. I’d never had an operation before, and worried about what it would be like. The big day rolled around quickly however, and by 1pm I was awake and in recovery. The procedure and immediate aftermath were nowhere near as bad as I feared, but I am planning to talk more about that in a later blog post. By 2pm my surgeon came to talk to me.  She told me that I have severe and widespread endometriosis that is attached and scarring my uterus, ovaries, stomach, diaphragm, bladder and bowel. She said the surgical team were amazed at how bad it is inside me ”considering I have been so asymptomatic” (I’m going to need years of therapy to fully get over that comment I think). After this, I was then informed that my main problem over the coming years is likely to be fertility, and that I should have the Mirena coil fitted to help preserve this and to manage my symptoms. And with that, I was swiftly discharged from hospital to the care of my GP.

On reflection, I am pretty angry that it took so long for me receive a diagnosis, and some proper medical input. I think that if I had been listened to properly over the years, and my symptoms considered in unison rather than isolation, it needn’t have got to this point.

So, that’s my endometriosis diagnosis story. Sorry its so long! Although, considering it takes over 7.5 years (on average) to receive a diagnosis in the UK, its perhaps not too surprising that this is a complicated tale. How does it chime with your own experiences, or those of somebody you know? I’d be really interesting to hear your thoughts!…

Love,
Claire
xxx