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

April 19, 2018 / Endo Lady UK / 4 Comments

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

Mission: The healthiest sick girl.

January 20, 2016August 10, 2016 / Endo Lady UK / 15 Comments

I have a new mission: I want to be ‘the healthiest sick girl’.

I know this may sounds strange to many people, but I bet if you’re reading this you have a chronic illness and so it won’t sound strange at all. Over the past year I have had a lot of people in my life say things to me along the lines of ”you are just so unhealthy aren’t you?” when I’ve rocked up to work looking like death for the millionth time. But nothing could be further from the truth. When you have an inflammatory and progressive disease like endometriosis, prioritizing your health really becomes really important, much more so than other twenty-somethings who often can and do take their body for granted. That means eating better, sleeping more, exercising smarter, and managing your stress with precision. If you don’t you can expect some major payback with pain and/or fatigue.

It has taken a lot of work, but I think I’ve now truly accepted that I have a chronic illness and will experience some level of pain and fatigue for the rest of my life. That was my entire 2015 really, coming to terms with this new and unexpected reality; lots of therapy, tears, and pizza was involved. I’m ready to start moving on now. I want to be as healthy and strong as I can be, and to start working towards my life goals again. To do this I need to be as well as possible. My health will never be perfect, and this journey won’t be easy, but I am ready for this fight now.

To succeed at being the healthiest sick girl, I have decided to make some goals in the following areas:

Nutrition

I’m so over ”the endo-diet”- at least in its full form. As I have mentioned previously it’s way too restrictive for me, and causes me a lot of anxiety and self criticism when I stray from it’s approved food groups. From now on, I am all about nourishing my body as best as I can with an abundance of healthy foods, rather than focusing on the foods that are ‘forbidden’. I hope this will mean that I enjoy cooking and eating again, since food is one of the great joys of life. It’s all about balance! I will focus on two goals in this area:

1.Adapting meals that I love to make them as nourishing as possible: Healthy eating is so hot right now, so with some googling and new cookbooks (I recommend Lucy Bee, Deliciously Ella, Jamie’s Super-foods, and Hemsley & Hemsley) I’ve learned that I can make all the foods that I love, and keep the spring in my step, by reworking traditional favorites with healthier ingredients. We have endometriosis- that’s enough to deal with without depriving ourselves right?! It breaks my heart when I hear women say they have given up their most loved meals and foods. Making your food from scratch often ups the healthiness anyway since you can use better quality ingredients than supermarkets/takeaways and can leave out any nasties. The photos below are some of the things I have made recently:

My favourite cacao pancakes– gluten/diary/refined sugar free.

Vegetable chilli with brown rice, guacamole and sour cream. Lots of spices make this so tasty!

Sweet potato chili with brown rice, guacamole and sour cream. Lots of anti-inflammatory spices make this so tasty!

Every Sunday I make soup to take to work over the next week for my lunches.

Hot chocolate with almond milk and organic cacao powder.

2. Upping the amount of organic foods that I eat: There is plenty of evidence regarding the negative effect of pesticides on hormone regulation. I now have a weekly organic fruit and vegetable delivery that really takes the hassle out of this, and to my surprise it hasn’t broken the bank.

Organic fruit and vegetable delivery encourages me to get creative with new recipes.

Exercise

Working out when you have endometriosis (or any chronic illness) is really hard. I’ve written about this before, but I do believe that with some forethought and planning exercising is possible with endometriosis and can help to manage your pain. This year I am aiming to achieve the following goals with my workouts:

1.Higher frequency and consistency: I want to do some physical activity each day, even if it means going for short walks or swims rather than sweating it out at my boot-camp classes.

2.Do more of the fun stuff: I have joined a Zumba class, as dancing is something I have loved since childhood. It feeds my soul, makes me smile, and the hour goes by so much quicker than at my circuits class! Finding an activity that you love is the key to fitness success!

Products

This area is all very new to me post endometriosis diagnosis, but wow there are a lot of nasty chemicals in the beauty and household products that we use! Many of these chemicals can act as powerful hormone disruptors, which is clearly not good news if you have a hormone-dependent condition such as endometriosis!

I’m not being militant about it, but I am making the move to do the following this year:
1.Be as natural as possible in the products that I use: Last year I switched all of my cosmetics to the Bare Minerals line, and have been really pleased with the results. I am also a big fan of organic extra virgin coconut oil, and have been using this for a range of beauty needs such as a hair mask, lip balm, deodorant, shaving gel, and bath soak! Such simple switches but hopefully they will help promote my health in the long term.

Coconut oil is a great natural beauty alternative. I use it as as a hair mask, moisturizer, shaving cream, lip balm, and body scrub.

2.Conduct further research for this blog: I will be posting about this topic in greater depth in the near future so do keep a lookout if interested!

I have deliberately labelled these targets as ‘goals’ rather than ‘new year resolutions’ as I have no intention of this being a short term thing to be discarded by February. This is phase two of endometriosis recovery and it’s a long old track. I’m looking forward to working on this and to being the strongest, healthiest, and (I hope) happiest sick girl in town.

I’d love to hear if you have any long term health/lifestyle goals you are working on to help with your life with chronic illness. Hints on staying on course are also much appreciated!

Love,
Claire
xxx

We need to talk about the endo-diet.

July 24, 2015August 10, 2016 / Endo Lady UK / 11 Comments

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.

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:

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.

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.)

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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