Personal Life

Little reminder: Your life with chronic illness matters.

/ Endo Lady UK / 1 Comment

This week I will attend the inquest into my dad’s death, which is going to be pretty rough. I posted six months ago that he had passed away but I had not said why.

The truth is my dad took his own life. This is a hard sentence to write, and is made worse because he did this terrible thing because he was chronically ill as decided he did not want to be sick or in pain any longer. To my dad, being sick meant his life had no value and he had no future to look forward to, so he decided to end things rather than face this increasingly bleak future as he saw it.

As somebody with chronic illnesses myself (both endometriosis and adenomyosis) the thought that my dad felt that being sick meant his life was worthless and his future hopeless is particularly hard to accept. We [his family] did not think these things about him or facilitate him feeling this way. This thinking is everything I try to stand against in my daily life and in my writing.

I tried to tell him everything would be OK. That he would get through it. The truth is I didn’t know that it would be OK, for him and for me. But through the years I have hit rock bottom a number of times because of being sick but have always come through the other side again eventually. You have to keep hope inside of you that life is cyclical and things never stay the same forever.

Being chronically ill is rough, particularly when young, and can easily pull you under. At times it can make you feel so demoralized and worthless it seems pointless to continue. For example, I wanted a big and rewarding career that I’ve worked hard to achieve, but now have to accept this is beyond my capabilities with my health being what it is. I still feel sad about this and I still cry sometimes but I don’t let it rule my life or dictate my self worth. Instead I have tried to find a job which doesn’t sap all my energy, which I enjoy, and learn to take please in some of the smaller things in life. I try not to compare myself to my peers, most of whom have not had to wade through the challenges that poor health present, as I have. What does it achieve anyway?

There was a time a few years ago, before my my surgery, when I felt my life was over and I was doomed to a life of pain, infertility and sadness because of my illnesses. Three years on I’m thriving and have a gorgeous baby son. I’d never have believed this possible such a short time ago after a decade of pain. I have spoken with some many endo suffers who have felt suicidal at one time or another and this breaks my heart.

So long story short, believe in yourselves my fellow chronic illness warriors. Things are rarely as bleak as they seem, I promise. You can do this. Your life matters and has real value, being sick can never take that away. Take one day at a time and ask for help if you need it. People will answer. Don’t be like my dad and throw your life away because you’ve given up hope and you’re scared. It leaves too many broken hearts behind, and there are no surgeries or pills that can ever fix them.

In a crisis you can contact your national suicide support phone lines here.

With love,
Claire
xxx

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

/ 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.

————————————————————————————————————

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

My endometriosis superhero.

/ Endo Lady UK / 4 Comments

The saddest and worst thing has happened- my beloved dad passed away unexpectedly at the end of January. I am utterly heartbroken (as well as seven months pregnant).

My dad at my wedding. He was the most dedicated endo-warrior!

As this is an endometriosis blog I thought I’d share with you some of the ways that my dad impacted on my endometriosis journey, rather than focusing on his death. My dad was truly my endometriosis super hero and everybody needs one of those right?! Here are a just few of the reasons why:

-When I was diagnosed with endometriosis my dad spent hours reading all available scientific writings on endometriosis and making notes. I presume he was working on a cure 😀

-My dad came with me to both of my surgeries and supported me during my recovery, even though he was phobic of hospitals.

-My dad always believed me and never questioned my pain. He tried his best to help.

– My dad cried while watching the ‘Endo What?’ documentary and said that he can’t believe how strong women are.

-My dad donated regularly to Endometriosis UK.

-My dad once casually called me up at work to tell me he has been doing some research and that I need women’s health (pelvic) physio.I found this hilarious.

-My dad helped me out a bit financially so I could have a proper break from work following my most recent surgery to recover.

-My dad would gripe at how unfair it was that other people could get pregnant so easily while I was struggling. He constantly said that Mr B and I would make the best parents.

-My dad took every opportunity available to educate other people about endometriosis to raise awareness.

-My dad was easy to talk to about my health and was always checking on me when he knew I was struggling physically and/or emotionally.

I was hoping these things might be useful pointers for any other family members out there wanting to support a loved one with endometriosis but are feeling unsure what they can do. I can promise you that taking an interest and small actions mean a lot to somebody who is sick and scared. Be somebody’s superhero if you can!

I miss my dad so much- he really was the best. Living well with endometriosis is going to be that much harder without him by my side.

If you have any other tips about how family have supported you on your endometriosis journey I would love to hear them. Or it doesn’t even have to be family- what is the nicest thing another person has done to support you since you’ve gotten sick?

With love,
Claire
xxx

Boom Shake the Womb!

/ Endo Lady UK / 10 Comments

A guest post by @LizzieBennett_ for endometriosis awareness month.

Life Lesson by Don Raye
The fierce wind rages
And I see how trees survive
They have learned to bend

Before

I’m 13 and I’m being prescribed the pill for irregular, painful bleeding. Apparently my cycle just needs to settle down.

I’m 14 and I’m being rushed into hospital to have my appendix removed. Only when it comes out it looks like it isn’t the culprit after all.

I’m 15 and I’m put on the contraceptive injection because I’m still bleeding for two weeks at a time and being physically sick from the pain.

I’m 17 and I’m asleep on my mum’s bathroom floor for the second night in a row, because the cold floor is the only thing that will ease the pain in my lower back and I may as well be somewhere that I can vomit.

I’m 18 and I finally see a consultant. I’m too young to have endometriosis she assures me, but after pressure from my mum she agrees to do the operation to rule it out so that we can focus on the other ‘much more likely’ causes. She gives me surgery for a bet.

I’m 18 and she pulls back the curtain after my surgery to inform me without kindness that they did find endometriosis on the back of my womb. It is now removed and she’ll see me for a follow up. She never did and I did not receive the slightest advice on how to manage an incurable chronic condition. Everything I ever learnt is from charity websites and women’s magazines. I have never underestimated Marie Claire.

I’m 20 and I’m back to bleeding for weeks at a time. I’m informed that further surgery should be a last resort and I need to find hormonal alternatives. They give me the implant.

I’m 22 and the implant has to be swapped because it’s not longer effective. Surgery is not an option.

I’m 24 and the implant has to be swapped because it’s not longer effective. Surgery is not an option.

I’m 27 and I bleed for eight weeks over Christmas and New Year. I’m extremely bloated, and uncomfortable. I have a constant bearing down sensation in my back and cramps in my legs. I often cannot get out of foetal position because of the pain. I’m exhausted and I find it difficult to open my eyes in the morning; I worry that I am becoming depressed. My anxiety is through the roof, but who can blame me when my whole body feels like it’s against me?

I’m 27 and I’m seeing a private consultant. I’ve been unable to move from my bed and have been experiencing labour pains when I bleed. The pain is now also present when I don’t bleed. I’m asked to rate the quality of my life. I circle ‘0’.

I’m 27 and the consultant shows me pictures of my womb. She’s removed endometriosis covering the left side of my womb and the pouch of Douglas. My womb collapses when it is touched, the muscles have deteriorated. She suspects adenomyosis. As my mum is crying next to me all I can think is ‘Thank God someone believes me, thank god it’s not all in my head’.

I’m 28. It’s the day before my best friend’s wedding and I can’t stand up straight because of the pain. I’m so tired from not sleeping that my vision has started to blur. I manage the pain with tramadol, codeine, and jäger bombs, but I know I was close to not being able to be there. I consider how much more I am willing to miss for this disease.

I’m 28 and I’ve decided to have a hysterectomy. I’m on a drug that has shut down my pituitary gland. I am so sick I honestly feel like I am dying. Someone asks me what I do all day now that I can’t work and I’ve had to take a leave of absence from my PhD. I survive, I tell them, every ounce of my energy from the second I wake up to the second I go to sleep goes into surviving. I google my first consultant for my PALS report and it transpires she is writing a book on cultivating ‘compassion’ in the NHS. Yep. Compassion.

I’m 28 and I’m doing the compulsory pregnancy test before my hysterectomy. The fact that I haven’t had sex with anyone for two years apparently doesn’t mean I can skip it. I’m at peace with having family in whatever way it comes, but I can’t help but remember the daydream I’ve said since I was a teenager of waiting for my partner to come home and greeting him with the test in my hand and hugging each other with mad joy. Tears fall silently down my face in the starkly lit toilet, whilst I pee on a stick. No hope of a positive test. No partner.

After

One of things that I did not expect after my operation were the irrational feelings occasioned by the trauma of my muscles inside. I had read that sometimes your other organs go into shock at the removal of the womb, but I hadn’t been prepared for my body literally feeling like I had given birth. In semi-lucid moments in those first couple of weeks I would wake up reaching my arms out and wanting my baby. It was, even for someone not naturally broody, pretty horrific.

For the next few months after the operation I would quite often have to leave nights out, or lunch dates, early to cry. I wondered if this was a delayed grief, but in retrospect I think it was a combination of extreme tiredness and sheer, abject relief. Relief that I had made it through those long months, relief to be past the fear of the operating room, and relief to finally have my body back on my side after 15 years.

Probably one of the hardest things about my illness as young women has been painful sex, and bleeding during or after it. On top of which, the irregularity of my periods has always meant that I could come on at any time. So on a date when the glasses are being cleared from the table, and they’ve inched their chair over, and I’m laughing and playing with my hair, and they say do you fancy coming back to mine for a drink? My first thought has never been ‘get in’, or ‘I thought you’d never ask’, but ‘have I got sanitary stuff with me?’ Or ‘what if I bleed in the middle or it, or in the night if I stay?’ And if this doesn’t put me off entirely, it means that I look like I got incontinence issues, because I constantly go to the loo to check that I haven’t started gushing blood at various stages of what should be that amazing/awkward/disappointing first hook up.

No one wants Jaws the movie on their first date.

Then, let’s say it goes all right, and you find someone brilliant and understanding. Those things don’t just go away. It’s never going to be fun for someone to feel like they are hurting you when you are being intimate. Sex becomes bound up with worry. I have found that this means that I hold something of myself back during the moment. People sense when they are not getting all of you, and it has implications.

I am now one of the lucky ones. However, there are still consequences for the rest of my life. All of the literature for post-hysterectomy sex is geared towards intercourse with your ‘loving husband’. I’m 28. It could very likely be an intoxicated encounter with a tinder date. Even once I’m passed the initial terror of being naked with someone again, at what date do I casually slip in that I can’t have children the conventional way? Admittedly I was ambivalent beforehand, but ambivalence is a topic that can wait. None of this means that it was the wrong decision; I feel extraordinarily well and happy and optimistic about the future. However, the right decisions are still hard decisions.

So, why am I writing this? Because one of the most important things anyone can do to raise awareness is to tell their story, and for others to share the stories that women tell. It legitimates the experience of women with endometriosis. It sends a message to young girls to trust their bodies. And, hopefully, it may give them the strength to persist with getting a diagnosis when they are told that it’s just ‘normal period pains’.

I can assure you – nothing about my young life with this disease was normal.

As well as difficulties I have faced, I have been lucky enough to also receive fantastic care and wonderful acts of kindness. From the nurse who took my blood and told me we have to make decisions that are right for us at the time, to the porter who held my hand as he wheeled the trolley in to the operating theatre, and the physiotherapist who spent an hour with me before my operation and made everything about those bruising, brutal first two weeks of recovery a bit more bearable.

I have seen great changes in the last ten years in the way that endometriosis is spoken about and treated, and I look forward to the seeing what is achieved next ten years. However, I am aware that for some women it is already too late. These women have met the loss of hopes, dreams, jobs, and relationships with bravery and grace. This piece is written for them.

For further information or for anyone who would like to support or donate to a charity during endometriosis awareness month:

https://www.endometriosis-uk.org/

http://www.adenomyosisadviceassociation.org/

http://www.hystersisters.com/

Elizabeth Bennett is a folk singing, footpath walking, gin drinking PhD student. Having been diagnosed with endometriosis at 18 after 5 years of G.P. appointments, she took the decision to have her uterus, cervix, and fallopian tubes removed at 28, in order to regain her health and restore a sense of self. With her brilliant friends and family she had a stitch and bitch hysterectomy party ‘Boom Shake the Womb’. She has not met Mr Darcy yet, but she has a sneaking suspicion he may arrive in the form of a Sussex Spaniel.


You can tweet Elizabeth at @LizzieBennett_

Have a story to share? Email me at endomyworld@gmail.com

I’m now a volunteer advocate!

/ Endo Lady UK / 3 Comments

Exciting news update- I’m now trained as a volunteer advocate for Endometriosis UK! 🙂 This means that I will be helping women with endometriosis in England to address some of the difficulties they are experiencing as a consequence of living with the disease. Advocacy support could relate to anything from accessing healthcare services and employment disputes to exploring coping mechanisms for the development of better mental health. You can find out more about the Endometriosis UK Advocacy Support here.

helping world

I’m feeling really grateful for this opportunity, and will give as much as I can to the role to help women with endometriosis lead as pain free and fulfilling lives as possible. We all know that having endometriosis  (or any chronic illness for that matter) can be so soul-destroying and isolating at times, and can impact on every aspect of life. From reading this blog you may know that my own story with endometriosis has deeply affected my mental health, working life, body image, and friendships- and I know that my story is probably your story too.

Me six months post surgery: Feeling good and ready to kick endo-butt!

Six months post surgery: Feeling good and ready to kick endo-butt!

Now I am feeling much better physically post-surgery (I haven’t take a single pain killer in 5 months- I used to take 8 a day for 4 years!), I felt it was time to step up my fight against this disease with some positive action. Mighty Endo-Lady lives on! I’m a big fan of charity volunteering anyway and also currently volunteer for Age UK as a befriender. I know how much I could have benefited from an advocacy service in the past, and hope the women who are lucky enough to use it find it informative and useful.

I’m always keen to hear about your experiences of programs and projects in your own communities which work to support women with endometriosis- either as a service user or volunteer. If we keep working toegther we can make a difference to people’s lives and create greater awareness of this awful condition.

Love,
Claire
xx

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

This girl just got married! Thoughts on surviving as an endo-bride.

/ Endo Lady UK / 2 Comments

Two weeks ago, I got married to the love of my life MR B 🙂 It was such an amazing and happy time, and the first time in a year that I forgot that endometriosis even exists. Here are a couple of my favorite pictures from the day that a friend took, we haven’t received the official photographs yet:

2015-06-07 15.53.21

wedding1

I’d been so worried beforehand that my endometriosis was going to rear its ugly head and spoil my day, but fate/luck/god/mother nature was on my side and I had one of the most pain free days I have had in years. I think this success was partly down to my slightly obsessive and militant approach to wedding planning, and while there are no shortage of articles written on how to get the most out of your wedding as a chronically ill bride (see here and here for example), I thought I’d share some of my thoughts on this topic with you all anyway.

So, to be a kickass endo-bride, I would recommend taking the following actions:

Sort out everything as far in advance as possible.

Loads of people thought I was a totally anal bridezilla as I had all our prep finished at least a month before the wedding. I’m talking speech written and memorised, boxes of decorations packed, and first dance rehearsed. While people kept saying to me ‘relax- you don’t need to be doing this yet’, I knew it would enable me to save some serious energy/ spoons up in the couple of weeks before the wedding, and concentrate in getting myself as rested and well as possible. This definitely paid off.

Don’t sweat the little stuff.

During your wedding, the phrase ‘it’ll be babies next’ will be said to you at least twice a minute for the entire day. This would usually annoy the hell out of me, especially from people who know me and are aware of my endometriosis, but on this one-off occasion I recommend mastering the face below, nodding politely while letting it wash over you, and moving on to chat to someone.

thumbs up

Babies. Yeah. Simple.

On a similar note, don’t wast any spoons at all fretting over things that in the grand scheme of things just don’t matter. Things can and will go wrong. One of my bridesmaids hair wouldn’t curl and I was like ‘yeah whatevs man, that’s cool’, whereas pre-endometriosis perfectionist Claire may have had a mini-meltdown.

Plan breaks and have a bridesmaid remind you to take them.

I knew I would be running around like an excitable little chipmunk on my wedding day, and indeed I was. To deal with this, I had a bridesmaid remind me to take a break every couple of hours to help me recharge and prevent an epic crash later in the evening and the next day. She also made sure I was eating and drinking enough to keep my energy up.

Choose your wedding dress wisely.

When shopping for my dress I was aware that it needed to be comfortable as anything that caused discomfort would likely trigger further pain and my fatigue to flare, something that would be forgiving to epic endo-belly should it arrive, and something that could conceal Bridget Jones style pants in the event of unscheduled bleeding. I know, my life is so glamorous. Finding a dress that fits these requirements is no mean feat, but they are out there, so do your research.

And while we are on the topic, for the love of all that is holy do the sit test in your dress before buying it. Mine was super comfy when I was standing up/ running around but turned out to be weirdly uncomfortable when sitting down (which we do a lot of when we have a chronic illness- I’m sure you’ve noticed).

Make a speech and acknowledge your chronic illness experience.

I did this, and it was so awesome and liberating to state publicly acknowledge that I’ve been ill and been having a horrible time, but that I couldn’t have got through it without the help and support of Mr B. Pretty much the whole room (including the men) burst into tears which I wasn’t expecting.

If you’re going on honeymoon, plan it wisely.

We went away on a long haul flight the morning after our wedding. MISTAKE! I was properly fatigued and achy, and that last thing I wanted to do was drive to the airport for an 11 hour flight. If you can have a few days/weeks to recuperate first- do it!

Accept that you can only control so much.

If your endometriosis does decide to rear it’s ugly head, accept that it isn’t your fault and that it won’t ruin the day. Have a backup plan with you (medication/ hot water bottle etc) and just do what you need to do for you to be OK. I was prepared to sit back and just watch everyone else party if it came to it, and was determined to drink it all in and enjoy myself no matter what. Endo steals so much from me but I was determined it would not steak my enjoyment of this day.

So, those are my tips. I’d love to hear about your experiences as a chronically ill bride and any tips that you have! Hilarious endo related wedding stories also very welcome.

Love,
Claire
xxx

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

/ Endo Lady UK / Leave a comment

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