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

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

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

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

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