What is recovery anyway?

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

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