Coping strategies

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

/ Endo Lady UK / 4 Comments

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

Image result for endometriosis banner long

Image credit: Endometriosis UK

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

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

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

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

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

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

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

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

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

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

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

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

Love,
Claire
xxx

I recently featured in PopSugar UK’s article about living well with endometriosis.

/ Endo Lady UK / Leave a comment

I was recently lucky enough to be asked to contribute to PopSugar UK’s article aiming to share tips about living well with endometriosis. The article was written by our fellow endosister Tori Crowther, and you can read the full post here.  (Oh and I am ”Claire from Hertfordshire” in case you didn’t guess that already :D).

popsugar
I think it’s really important as a community that, as well as raising awareness, we share tips and coping strategies to support each other.  Living with this disease is difficult enough without stumbling in the dark alone right? I know that for me, seeing that there are women who are able to live well with endometriosis, and hearing about how they achieve this, is really encouraging and helps me to feel less hopeless and scared.

Do you have any tips to share about living well with endometriosis? If so, I would love to hear them! This illness affects us all so differently, which opens up many possible avenues for coping with and combating symptoms.

Take care,
Claire
xxx

I’m currently featuring on ‘The Endo Twins’ website.

/ Endo Lady UK / Leave a comment

Last week, I had the awesome experience of being interviewed by Fela of The Endo Twins site about all things endometriosis, adenomyosis, and living well despite chronic illness. This encounter stemmed from our shared experience of living with endometriosis on the diaphragm. You can check the interview out here.

interview-pic
If you have, or suspect that you have diaphragmatic/thoracic endometriosis- please feel free to get in touch through my ‘contact’ page. Also, do check out ‘The Endo Twins’ site as it’s such an interesting read. Thanks again to Fela for featuring me!

With love,
Claire
xxx

What is recovery anyway?

/ Endo Lady UK / 1 Comment

It’s been a year now since my excision surgery, where endometriosis was removed from my ovaries, utererosacaral ligaments, bowel, bladder, pouch of douglas, peritoneum, and diaphragm. Lot’s of people have been asking for an update about how I’m doing, and I realise it has been a while since I wrote about my own condition, so I thought I’d write this post to update you all and to share some of my thoughts managing the surgical ‘recovery’ process.

recovery

The road to recovery is a long one. There will be obstacles.

I give so many different responses to the question ”So how are you now?”, depending on who is asking- I’ve realised that not everybody needs or even deserves to hear the truth. The honest answer to this question is this: I’m doing OK. Not fantastic, not terrible.

To clarify, I am certainly MUCH better than I was before my surgery, the difference is remarkable. I now no longer have period pain, which is a huge shock and something I never believed was possible for me, having spent 15 years in agony with every single period. As Mr B and I are trying to conceive, I am off the hormones and painkillers , and am managing well, which would not have been possible a year ago. I am actually enjoying being totally drug free, and am still using holistic and dietary techniques to promote my health, along with exercise, which I am really enjoying. This disease has basically turned my into a hippy. Or Gwyneth Paltrow. I’m OK with that.

On the downside, I’ve still been experiencing chronic fatigue since my surgery, which is with me every day and ranges from mild to debilitating. I do have adenomyosis and some other health problems which are likely playing a part in this though, so I don’t see this as any kind of failing from the surgical process. Slightly alarmingly, I have also been experiencing what I think are random diaphragm and endometrioma related pain flare ups again over the last couple of months, but I am just going to track these for a while before I start to panic or take any action.  Another gloomy point, no baby in sight yet, and I haven’t even had any near misses, and that has been getting me down a little bit too sometimes. I know it’s relatively early days in the process though- so I am staying as optimistic as I can. (Funny story though- I went to London Zoo with Mr B recently, and I cried when I saw a stork. New level of crazy right there!)

So, as ever when living with chronic illnesses, there are pros and cons, to my current situation, but I am looking on the bright side about how much progress I have made. Thinking about how far I have come since my surgery a year ago, I started to understand that recovery from a major laparoscopy for endometriosis and the journey back to health is a long one- much greater than the couple of weeks they advise you to take off work. In my view this journey can be helped or hindered by two key factors, which I’ve outlined in greater detail below.

Managing my own expectations:

chronic illness forever
As we all know, there is no cure for endometriosis. While surgery, hormones, or dietary approaches can be useful on their own or in combination, they will not solve the problem completely.

When I see other people sharing their stories online, and through my own advocacy work, I have noticed that many put all their hopes onto a particular approach ‘fixing’ them, in the sense of making them feel exactly like they did before they got really sick.

This makes me worry that they are setting themselves up for disappointment and failure. I am not immune from this myself, for at least a year after being diagnosed I was desperate to work out how I could get back to being my previous healthy self and carry on as though nothing had happened. Eventually I realised this isn’t feasible, my body has changed and I have changed too much. So I gradually started to alter my mindset to focus on how I can become the best and most healthy version of my my new, chronically ill, self.

I’ve found this new approach so liberating and helpful- and it certainly isn’t defeatist if that’s how you’re reading it. It meant that I went into my surgery with positive hopes that it would lessen my symptoms and improve my quality of life, while also being realistic about what it could really achieve in both the short and long term: So when my recovery was hard, and I’ve had flares up, and my endometrioma came back,  and my diaphragm hurts, it was disappointed for sure, but I wasn’t crushed like I used to be.

This new approach to my thinking has also encouraged me to keep striving for health through diet and exercise etc, rather than feeling demotivated and giving up on myself because things will never be as they once were.

Managing the expectations of others:

get well soon
As well as managing your own expectations about what a treatment or approach can feasibly achieve, I have also realised it is just as important, if not more so, to actively manage the expectations of the people around you. No matter how good I have felt about my progress, it has sometimes only taken a small comment from other people to bring me down and lower my confidence. Examples I have experienced have included:

Family member: It’s disappointing you’re still experiencing some these problems isn’t it?!
Friend: How come you’re still feeling bad- do you need another surgery?
Boss: What do you mean you still have fatigue? I thought you had surgery to sort these things out!

Even though I have told people that endometriosis is a chronic and incurable condition, the fact is most people are much more familiar with acute illnesses that get better with treatment, and they will fall back on these experiences to make sense of what you’ve been going through. I mean, people have surgery to fix them right?!

I think if and when I have another laparoscopy, I will work to reinforce realistic expectations of my friends, family, and colleagues during and after the procedure, to improve their understanding and  to limit these comments. Well informed people makes much better cheer-leaders. When people expect that you’re going to be well, or improved, or cured, it is really very difficult to confide in them that your not, and this can increase feelings of loneliness and isolation. It feels like you’re somehow disappointing them or simply not trying hard enough to get better.

Goal setting to aid recovery:

goals
There were a few months after my surgery when I felt frustrated with my progress (well, my perceived lack of) and felt like I was just drifting aimlessly through life without any vision for myself or support. This was really weird for me as I’ve also been a planner and had a strong sense of where I wanted to be. My self confidence was in tatters, as was with fitness and progress on my PhD.

What has really helped to turn this around has been having specific and realistic goals to work towards with regards to my recovery and general health. Over the past year these goals have included: Working on getting leaner, improving my stamina, working to reduce the inflammation in my body, getting pregnant, and finishing my PhD.

The joy of goals is they can be adapted over time depending on your needs and vision for yourself, and they help to develop your sense of purpose and self worth. Without them, the journey to recovery can feel like a never ending road to nowhere.

I would recommend making some short term goals immediately after surgery for the following weeks, and then introducing long terms ones gradually in the months afterwards. The key to success with such an approach is making sure the goals you set are realistic, and that you can identify the steps you are going to take in order to achieve them.

So what exactly recovery is, and to what extent it is possible, I still don’t really know. It’s certainly more than physical healing from surgery and is an ongoing process requiring lost of thought and practice. Like everyone else, I am just trying to do my best in difficult circumstances, and trying to make positive decisions that are right for me.  If you’re feeling lost, or discouraged, on your road to better health, take heart, and take one day at a time. We will get there in the end.

I hope these thoughts are useful to those of you who have had or will be having endometriosis surgery. I would love to know if you have any other tips for aiding recovery and health! And what goals you have for yourself despite endometriosis/chronic illness.

Love, as always,
Claire
xxx

Mission: The healthiest sick girl.

/ 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:

pancakes

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.

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.

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.

riverford

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.

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.

/ 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.

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

/ Endo Lady UK / 1 Comment

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

The birth of mighty Endo Lady: Why ignorance is not bliss when it comes to endometriosis.

/ Endo Lady UK / 4 Comments

Let me tell you about my life in the two years preceding my diagnosis of endometriosis. Overall it was a pretty terrifying time, because I was feeling SO ILL on a daily basis with an array of debilitating symptoms such as diarrhea, sickness, abdominal and chest pain, headaches, and extreme fatigue. I also gained two stones in weight as I felt too unwell to do much more than lie on the sofa when I wasn’t at work. Despite regular trips to see a range of specialists at my local hospital over the previous four years, I was no closer to finding out what was wrong with me than I had been at my first appointment. This time was also incredibly isolating, as without a clear ‘label’ for my symptoms I found them hard to address, and almost impossible to talk about with others. People are very dismissive (perhaps understandably) if you have to use the ”something is very wrong with me , but doctors don’t know what” explanation for your ongoing illnesses. I just gave up completely in the end, and hid how I was feeling from everyone around me. But looking back, I now realise how much the endometriosis was beating me, rendering me incapable of the smallest tasks and wrecking havoc on my personal and professional life. It’s a minor miracle that I kept going at all if I’m honest.

EndoGirl

My new alter-ego ”Endo Lady”

But getting a formal diagnosis has changed all of that, and I’ve been amazed at how it has spurred me on to start taking control of my health again as well as my life in general. Knowing what your dealing with just makes things so much more manageable. It’s been like I have this kick ass alter ego who isn’t scared to get things done. I like to call her ‘Endo Lady’ and she is not to be messed with 🙂  I’m not saying that I have regained control fully yet- I’m still a long way off,and that scared and sick girl is still around most days at the moment. But I have been taking some positive steps forwards instead of the usual strides backwards. Let me give you some examples of some of the things I’ve been doing in attempt to start feeling better:

  • Exercise: I’ve been doing circuit training five days a week. Can you believe that? I’m still not sure I can. I would honestly never have thought it possible, but with the help of an incredible and supportive instructor who helps me to know my limits, it has been. And I’ve stuck to it- even when I’m exhausted, or hurting, or emotional (which is most of the time). Of everything I have tried so far, I think this has been the best thing, and it is helping me to feel stronger and more powerful everyday!
  • Acupuncture: I’m still fairly skeptical about this, particularly as the evidence in its favor is mixed and it’s freakin’ expensive. However, I decided to give it a fair go, thinking that if nothing else it can be valuable ‘me time’. So once a week, I transform into a human pin cushion. I will report back in a few months with how I think it’s going.
  • Counseling: There is SO MUCH ANGER inside of me: About my delayed diagnosis, about people constantly dismissing my pain over the years, about the impact of endometriosis on my career an friendships, and about the future. I know it’s there and I’m dealing with it, so that one day I won’t be angry anymore. I want my mental health back. This is mission self esteem.
  • Research: If there is a piece of scientific research published on endometriosis in the last 10 years I have probably read it. Endo Lady is very aware that you have to know your enemy if you are to successfully defeat it.
  • Seeking support at work: I faced my fears, and potential career suicide, by telling some senior people at work about my endometriosis and how unwell I have been. Contrary to my expectations the world did not end.
  • Advocating for my own (better) healthcare: I’ve been super disappointed with the aftercare I have had post surgery for my endometriosis, mainly because there hasn’t been any. Basically, I was given my diagnosis and then just told to go home and deal with it. That was it- no support, no advice, no medication-nothing! Pre-diagnosis I would have just left things as they are, feeling too ill and frustrated to fight my corner. However, post-diagnosis I know I can’t sit back and accept shoddy care any more, and have actually managed to advocate for myself to both my hospital and GP in a way I didn’t think I was capable of.

I know these are small steps really that every woman with endometriosis takes on her journey to recovery (or at least manageability). But it is such an improvement to me just lying on the sofa crying all the time. And this is what makes me so annoyed about how long it takes for women to be diagnosed with endometriosis- all that suffering and damage to my life just seems so pointless and avoidable. Even though receiving a diagnosis is terrifying and devastating, it can also be massively liberating. I am so much healthier (mentally and physically) than I was just a few months ago. Ignorance was certainly not bliss for me, nor is it for the millions of other women in the UK and worldwide who suffer with this disease. While my consultants said they were trying to ‘protect me’ from the risks of surgery, and that’s why they had argued against me having a laparoscopy for so long,  I am left wondering if they really had my best interests at heart on this one. I’m not sure you should ever try and shield people from the truth, whatever the risks may be.

I’d be interested to hear about how you cope with endometriosis, and what works for you. Your comments and suggestions are most welcome.

Love,

Claire