mental health

Menstrual Health Coalition publishes call to action on Heavy Menstrual Bleeding.

/ Endo Lady UK / 1 Comment

I can vividly remember being thirteen years old and sitting awkwardly across the desk from my middle aged male GP as he asked me what bothered me more about the periods I was complaining about- the pain or the heavy bleeding. ‘Errrr both?!’ I mumbled, completely mortified. I’d never really thought of it as an either/or choice before, but I was certain that both had been making me completely miserable; rendering my school life challenging and a social life impossible. I had never told this to anybody before, it was way too embarrassing, and besides- what counts as heavy bleeding anyway? I’d never exactly compared quantities with my female friends or family. Perhaps my periods were totally normal and this was just a fact of life I’d have to get used to.

Those of you who are familiar with my story from this blog will know that it took another decade after this meeting for me to finally access the treatment I needed (for what turned out to be severe endometriosis and adenomyosis) to live a happy and healthy life. Research shows that I am not alone in this situation, as around 20% of women are believed to experienced Heavy Menstrual Bleeding (HMB) during their lifetime, with many requiring multiple visits to their healthcare providers before being correctly diagnosed and treated. HMB is also a leading cause of gynaecological admissions to hospital and hysterectomies, but you may not know that, as like my younger self many women choose not to share their experiences owing to feelings of shame and embarrassment.

The great news however is that a new report published this week by the Menstrual Health Coalition aims to change all of this and get HMB up on the political and social agenda. The Coalition (which is made up of relevant politicians, clinicians, and charities etc) has examined written and oral evidence provided on HMB to put together its ambitious report.

 You can read the full report here.

The main findings are that the wellbeing of women with HMB is currently negatively impacted by:
1. Societal stigma around menstrual health.
2. Poor clinical awareness of the condition and treatments.
3. Inadequate and often disjointed services.

 To address these problems, the Coalition have provided a number of recommendations which include:
1. Educating school pupils about what constitutes normal and abnormal periods, and empowering them to be able to speak more openly about menstrual health.
2. Revising services to make better information available to patients and clinicians.
3. Improve commissioning.
4. Ensuring services are adequately joined up to improve the patient experience.

 While these findings and calls to action seem sensible and are likely to be very familiar to anyone who has experienced HMB, it is so encouraging to see this evidence gathered in one place and being promoted to the lawmakers and health professionals who have the ability to effect so much positive change in the lives of thousands of women.

I honestly believe the stigma around menstrual health has started to be worn down over the last few years and real change is taking place, and this report is just what is needed to keep pushing the issue forward.

 From my perspective the emphasis on education young women to know what constitutes a ‘normal’ period and empowering them to feel confident to speak openly about their menstrual health is going to be the game changer for future women to ensure they do not have to suffer as myself and others of my generation have. Knowledge IS power. It will be interesting to see if and how how the recommendation are enacted within schools and society over the coming years. The time for change is now and our actions must be louder than these words. The Menstrual Health Coalition means business and armed with this report has the tools it requires to suceed, so we have much cause for hope.

I’d be really interested to know your experiences with heavy menstrual bleeding, or your thoughts in the publication and content of this new report. What’s the biggest factor that you think could support women to promote their menstrual health?

If you use twitter you can follow the Menstrual Health Coalition on Twitter here.

A version of this post also appears in the Menstrual Health Coalition website here.

With love,
Claire
xxx

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

Endometriosis and the impact of delayed diagnosis.

/ Endo Lady UK / 37 Comments

It’s now been three and a half years since my endometriosis diagnosis. A lot has happened since that momentous day- two surgeries, a mental breakdown, a new job, difficult decisions, diet experimentation, a whole new community of friends, and falling pregnant to name but a few.

I am now doing relatively well- thriving for the most part in fact. 2017 was the first time in almost two decades where I can say I had times where I felt truly happy, content, and well. I can see why it is tempting therefore, for people to think that everything is OK now and I have put the trauma of diagnostic struggles behind me. That I have risen above it and moved on. That I was tenacious and refused to let my poor health defeat me.

But the fourteen years it took for me to be correctly diagnosis still shape every aspect of my life and have affected me very deeply. I am still angry about this. And I’m angry that it still takes 7.5 years on average for women to be diagnosed with this often debilitating disease, because this is completely unacceptable in 2017 quite frankly.


So let me spell it out, for those who cannot read between the lines or see behind often forced smiles what a delayed diagnosis really means and why it matters…

-Delayed diagnosis means that I’ve been left with levels of pain, fatigue, and mental trauma which still overwhelm and consume me at times. These days, I’m better at hiding it, but this causes its own hurt.

-Delayed diagnosis meant that I became progressively more ill each year as the disease spread around my body to take hold of organs such as bowel, bladder, and diaphragm. All without explanation or it was put down to ‘stress’. I spent at least five years convinced I was dying, which had a pretty negative impact on my productivity unsurprisingly.

-Delayed diagnosis meant having to watch all of my friends graduate their PhDs successfully while I am left behind, too traumatized and exhausted to finish something I’ve worked so hard for.

-Delayed diagnosis means that I’ve had to make huge compromises with my career to be able to cope with the limited energy I have available to me each day. And to live with the knowledge that I could and should be doing more.

-Delayed diagnosis means that I suffered the pain and heartbreak of years of infertility.

-Delayed diagnosis means that I earn less money than I would have done if I were well.

-Delayed diagnosis means that I am not able to always be the wife/ daughter/ friend that I want to be, and living with the guilt of this. Sometimes I just hide away and put myself first just to survive.

-Delayed diagnosis means I lack confidence in my body and deeply distrust medical professionals.

-Delayed diagnosis means wondering ‘what if things had been different’ all the time. If my GP had listened to me as a teenager. If I wasn’t constantly misdiagnosed and fobbed off as an adult. If I didn’t spend the ages of 11 to 25 in excruciating pain. If just one person had told me that period pain like mine wasn’t normal.

-Delayed diagnosis means never having closure. Nobody will ever apologies or be held accountable for the terrible time I went through or be able to put things right. Most of the people and professionals I encountered will never even know my story, or why it matters.

And that’s just for me. More broadly, delayed diagnosis of endometriosis means all these things as well as and lost working/ educational hours, lost potential, lost relationships, and lost dreams for millions of women and girls around the world. As a society we can and should be doing better.

I appreciate that everyone’s stories are different and that my case is at the more extreme end of the spectrum. I also feel that things are moving in the right direction in terms of endometriosis awareness, treatment, and funding, and there is much cause for hope.

For many of us though this progress is too little too late, and we have to find ways of rebuilding our own lives the best that we can. This takes time and is not easy but is certainly possible. I like to think I am a living example of that. But I am not the same person as the result of my difficult diagnostic journey, and I feel it is important to tell this part of my story to highlight exactly why diagnostic delay in endometriosis is a cause for concern and it addressing this really matters.

I’m interested to know how long it took you to be diagnosed with endometriosis, and how your diagnosis came about? What impact has the delay had on your life and wellbeing?

Take care,
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

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

How NOT to tell your friends about your endometriosis.

/ Endo Lady UK / 3 Comments

Since my diagnosis I have been trying to navigate the minefield of telling my nearest and dearest about my endometriosis. It’s actually been much more difficult than I anticipated- although having never been seriously ill before I don’t actually have a previous model to base it on. As with 90% of things I do, I turned to my good friend Google beforehand to seek some practical advice on managing the situation. Some of the tips I came across seemed really sensible and useful, like:

  • Have some written materials to hand about what endometriosis is in order to better explain exactly what the condition is and how it affects people. That way, the friend can read and digest the information at the own pace and ask you questions when they are ready to do so.
  • Break the news to people at a time when you feel physically and emotionally ready to handle it and be ready to accept that some people aren’t really going to ‘get it’ straight away.
  • Just begin with telling those closet to you, and take some time to decide who else really needs to know the full facts.

Naturally, I ignored all of this good advice, and forged my own crazy path instead. I seem to have relied on three main approaches when telling people, which I have summarized below. I can’t particularly say I recommend any of them to you, but please feel free to learn from my mistakes.

friends

Approach 1: The elusive explanation

This one, I am very sad to admit, probably stems from some shame I feel about what is happening to me, and worry that people will be dismissive of my problems if they know the truth. It’s probably not a very close friend who was targeted with this one, but somebody at least in my social sphere who I felt needed some sort of explanation for why I have been acting so strangely over the past few months.  Also, it’s almost definitely a man. I have found that elusive explanations tend to go like this.

Friend: Are you OK?

Me: Um, I’m not feeling great lately, I’ve been struggling a bit since my surgery.

Friend: Still- really? Maybe you should go to your GP again. You should be fine again by now.

Me: I have. To be totally honest I know why I’m feeling crap. During my surgery they found out I have an incurable disease which causes inflammation and bleeding on my internal organs, and that is why I feel so unwell sometimes.

Friend: Oh right, that’s terrible. <awkward pause while they wait for more information>. Is it chrons disease?

Me: <panicking> YES! Er, yeah. Chrons. Grrrrrr horrible chrons.

Do not- I repeat DO NOT- tell people you have a disease that you don’t have. Even if you are panicking in the moment and are just agreeing with them. Telling people that, in fact, you don’t have that disease will make you look more mental than they already thought you are. If you don’t confess, you then have to put a lot of effort into maintaining the deception, like joining the Facebook support groups for Chrons and composing weekly posts, which is stress and hassle you just don’t need. (I promise I’m joking, I never did that bit :-)).

Approach 2: The emotional explanation

When confiding in close friends who have already been aware of many of the health problems I have been dealing with over the past few years, the emotional explanation tended to come out. In a way it is positive that you can trust these friends to be open with. Emotional explanations go like this:

Me: Dear friend, I need to talk to you about my surgery if that’s OK, well more about what was found.

Friend: Sure, what is it? I always have time for you.

Me: They found I have have severe endometriosis, which explains all the problems I’ve been having.

Friend: O.M.G that’s awful.What exactly is endometriosis?

Me: <Bursts into tears and cries hysterically for about an hour>.

This approach is a bad one because it puts that friend off ever asking you a question again, for fear of eliciting a meltdown. That friend will literally never acknowledge your endometriosis to your face again. Radical action is needed to address this. When I figure out what that action is I will update you all.

Approach 3: The over-share explanation

I can only assume this approach is the result of endometriosis induced insanity caused by sleep deprivation, medication, and crippling anger. This conversation genuinely happened in the pub with a large group of friends about a week after my laparoscopy.

Friend: Claire- how are you? I don’t think you’ve been around for ages?!

Me:  Yeah, I’ve actually been off work having surgery.

Friend: Oh no- are you OK?

Me: Not really, basically loads of my internal organs are fucked and they said I’m probably not going to be able to have a baby.

Friends: Very. Awkward. Silence.

Another friend: You look nice though, have you had a manicure?

You’ll then just be regularly disappointed that none of these people have since approached you about what you’ve said, instead opting for the business as usual method. I also posted about my endometriosis on my Facebook account in what I think was a very polite and measured way. I have 352 friends on there. Three replied. THREE! Please learn this valuable life lesson my friend- over-sharing is not the way to go when explaining your endometriosis. Still, it’s good to have very conclusively proved that it makes people feel awkward. I am a scientist after all.

not ok

I wish I could just give all my close friends a letter, because I am clearly incapable of maintaining a normal adult conversation these days. I just want them to know how I feel, and be there for me. I need some extra support at the moment I think. I’d never actually be able to give them the letter though, I am way too British and reserved. But I drafted one anyway in the hope that it would be cathartic. Here it is:

Dearest friend,

I’m sending you this letter because our friendship over the years has meant so much to me, because I care about you, and because I truly see us being friends for many more years to come. However, over the past year you probably don’t feel that  have been that great a friend to you- and that scares the life out of me. Friends really are very important to me. Perhaps you think I’ve become quite distant or disinterested in our friendship? Or maybe you think I’m depressing to be around, or boring because I rarely come out to social events anymore? I really wouldn’t blame you, I suppose I have been like that a lot of the time. But I want you know that I haven’t been acting like this because I don’t care about you, or about our friendship. Nothing could be further from the truth. You see, I’ve been feeling really unwell the last few years, and in August I was diagnosed with endometriosis. In some ways it is so good to have a diagnosis now, because I am hoping to use it to get the treatment I need to feel better. I know that you know this already, and I really appreciated how nice and sympathetic you were to me when I told you.

What I don’t think you know is how much endometriosis affects my daily life, and how difficult I am finding it to come to terms with my diagnosis. I know these things can be hard to hear, but please, let me tell you now. I think it will help both of us to move forward. I have stage IV endometriosis, which means that I have deep and widespread scarring on my uterus, ovaries, stomach, diaphragm, lungs, kidneys, bladder and colon. Because of this, I experience severe pain in my abdomen, rectum, back, shoulders, chest, neck, and face. This pain often lasts weeks at a time, and I find it really difficult to cope with life and get out and about when I’m having a ‘flare up’. For me, the disease also comes with an array of other symptoms which can be debilitating such as vomiting, diarrhea, headaches, and breathing difficulties. As my body tries to cope with these things and the inflammation they cause, it leaves me feeling constantly exhausted. Some days, I barely manage to get out of bed. This tiredness is unrelenting and nothing helps to get rid of it. This isn’t how I want to live or how I am used to being- I want to be full of beans again and live every day to the full. And to top things off, the severity of my endometriosis means there is a very real possibility that I am infertile. There aren’t words to tell you how much this breaks my heart. I try to push it to the back of my mind, but it is there every day just chipping away at me. I think Simon would be the most amazing dad, don’t you? Putting him through all of this makes me feel so guilty, and the fact that he is always so loving and supportive almost makes the guilt worse.

These things are so frightening to me and life just feels unbearably difficult at the moment, particularly as these problems are likely to stick around since endometriosis is a chronic condition with no cure. I’ve been crying a lot since I received my diagnosis, I think you’d be alarmed if you saw how much: all through the night, in the shower, at work in the bathroom, at my counselling sessions (I’m seeing a counselor- did you know that?), everywhere. I’m crying writing this. It’s why I work at home most of the time now- so people don’t see. My counselor thinks I have depression, and I probably agree. I think I am mourning the loss of the person I used to be. Remember her? Always the first to a social event, always laughing, super fit, and dreaming big for her future. I’m not that person anymore, and having endometriosis means I am going to have to change the way I do things sometimes. I need to live at a slower pace, but I won’t allow it stop me altogether. I’ve been feeling so alone with all of this fear and grief. Like nobody else cares about it. At times these feelings have overwhelmed and incapacitated me- I know how melodramatic that sounds but I need people to understand how just getting through each day is an immense physical, mental, and emotional challenge right now.

But I don’t want to feel this way anymore, which is why I am telling you all of this, because I know you care and wouldn’t want me to keep going on by myself. If you can find the strength to stand by me while I try to get to get the treatment I need to get back on track with my life that would mean so much to me. Perhaps you could come and visit me at home sometimes- especially when I am feeling too low or unwell to leave the house? If not, maybe we could chat on the phone- so I know you are there and thinking about me from time to time? At the very least, please don’t be offended or annoyed when I don’t turn up to social things or cancel at the last minute, it’s hurting me more than you that I can’t be there. When I am feeling well enough, I promise to be there with a smile on my face every time. The little things will make a big difference to me. And the same goes for you- I will promise to do my best to stay in touch, and am always here to talk if you need to. Things haven’t changed in that way.

Thanks so much for reading this letter, and I am so sorry that I didn’t have the courage to say this to you earlier or to your face. If you have any questions I would happily answer them any time. Questions show me that you are thinking about me and want to help. I think everyone has been to scared to ask me any-maybe because they want don’t want to upset me- but I’d love to talk about it with you if you feel able to.

All my love as always,

Claire

What do you think? How did you tell people? Any further wisdom in this area much appreciated. Also, I haven’t talked to most of my family about it yet- so advice on that topic welcome too.

Love,
Claire
xxx