Endometriosis isn't just "painful periods" - Why Women's Health: Breaking the Taboos completely missed the mark

On Tuesday morning a huge advertising campaign appeared across the country and on social media for Women's Health: Breaking the Taboos that was set to air Tuesday 10 August at 7pm.

Newspapers and billboards were lit up with "Endometriosis is as common as diabetes - It's time to talk about it". 

Endometriosis is a chronic menstrual condition that can take people in the UK on average 8 years to get a diagnosis.

It's debilitating and can completely destroy every element of a woman's day to day life.

Endometriosis is a chronic menstrual condition that is as common as diabetes.

Naturally people with endometriosis were thrilled at the opportunity to have our voices heard, to share our experiences and reveal the realities behind a condition that can be completely debilitating. 

The Women's Health:Breaking the Taboos was sold by Channel 5 as a documentary that would be talking about Endometriosis and how there is not nearly enough research and support to people with the condition. 

This programme had a huge advertising campaign behind it with Endometriosis UK sharing on Facebook: "we’re delighted to see #endometriosis on the front page of @metro.co.uk and across Billboards including Waterloo and Stratford station!".

But Channel 5 and Lambent productions completely missed the mark and people across the country were left devastated.

A post from @jen.dometriosis on shared a post on Instagram perfectly summed up how a lot of people with endometriosis were left feeling after the programme.

View this post on Instagram

A post shared by Jen | Endometriosis & Adenomyosis | Chronic illness life (@jen.dometriosis)

Endometriosis was featured in the Women's Health documentary for just seven minutes in the 55 minute episode.

Just seven minutes for a complex condition that takes people on average eight years to get a diagnosis. 

The documentary focussed on painful periods, which perpetuates the myth that that is all endometriosis really is. 

Endometriosis has a host of symptoms with NHS UK describing the main symptoms as including:

• pain in your lower tummy or back (pelvic pain) – usually worse during your period
• period pain that stops you doing your normal activities
• pain during or after sex
• pain when peeing or pooing during your period
• feeling sick, constipation, diarrhoea, or blood in your pee during your period
• difficulty getting pregnant

Endometriosis can also cause heavy bleeding, which can cause people to bleed through tampons, pads or other menstrual products at an abnormal rate.

It is difficult to get help and people face years of battling with doctors to be listened to and get the help they need. 

There was nothing on the fight to be heard, the fight for adequate care and the stigma people fight on a daily basis. 

There was no mention on how many GP's will dismiss people as "just something some women have to deal with" (as I was once told at 23 years old after fainting from the pain and heavy bleeding).

Focusing on "painful periods" just perpetuates a condition that can be life destroying. The term "painful periods" in itself downplays what can cause women to be hospitalised with pain. 

It personally has caused me to be bed bound every cycle, to pass out from the pain, faint and make me feel like something was horrifically wrong with me, I've had periods where I genuinely thought I was giving birth because that was the only way to describe the level of pain I was in.

People can be left in excruciating pain with many ending up hospitalised

Women's Health: Breaking the Taboos glossed over the surgeries and how women face these surgeries being done gynaecologists who aren't adequately trained in identifying the disease, let alone treating the condition.

The documentary even covered treatments that most people had never heard of, including Endermologie, which honestly sounded made up when I first heard the term. 

Many people don't have the luxury to the treatments discussed in the documentary and was not an accurate representation of the care the NHS provides. 

Endometriosis, like many menstrual conditions is vastly under researched and many gynaecologists aren't adequately trained to treat people with the condition.

At my last hospital I was belittled for knowing more about the treatments of endometriosis than the staff, being called a "stupid girl" by a nurse for researching the difference between ablation (burning off the endometriosis) and excision (cutting out the endometriosis).

When the nurse went to talk to a doctor about me being anxious about the surgery she was informed that I was right, there was no apology despite the fact the had just belittled me for researching my condition. 

I was told at that hospital that there was an 80% chance my gynaecologist wouldn't find anything and that if that was the case I would be discharged from their care.

Why is it that only the 20% should receive treatment but I should be left with this debilitating condition, if the surgeon isn't trained to actually know what they're looking for? 

Many people find it hard to be listened to at a doctors without being belittled or having their symptoms undervalued.

I mentioned the surgeries above too, how there are different ways to treat endometriosis and with more research excision is showing to be a better method of treating the illness, yet many doctors are not trained in this surgery.

In the UK there are a handful of doctors who are trained to excise endometriosis if it's found, despite research suggesting that this gives people a better potential outcome. 

As people with Endometriosis it is up to us to research and be informed about our illness, to join groups, read research papers and know everything we can so that we can fight for answers when we need them.

In the documentary, the true reality of Endometriosis was glossed over, it was disguised under "painful periods" and not really ventured into. 

The programme acknowledged the fact that "there is no cure" and yet was given just seven minutes to discuss such a complex condition. 

How are people supposed to get information and guidance if what is advertised as an endometriosis documentary just glosses over the condition itself?

This condition is exhausting, it affects people's quality of life and we're still fighting to be heard. 

Channel 5 and Lambent Productions, please do better. Consider a longer documentary just for the condition itself. 

Do research, talk to more women than just five about their experiences and explore the true realities of living with endometriosis.

If you really want to "break the taboos" then you need to do better.

My brain is mush

Hello, 

Just to let you know before you start reading that I'm adding a TW for talks of suicide and mental health if you're in a bit of a vulnerable place right now, only read if you feel you can. There's no pressure to skip this one. Side note for those who might worry, I'm okay.

If you've been around on this blog for a while, you'll know I have mental health issues that have caused me some trouble, especially over the last decade. If you're new here, then hi! My name is Rebecca and I have OCD, anxiety and depression, it's not the best combo!

For a long time I've had a handle on my brain and the way that it runs. Of course I have bad days but there are more good days than bad now. However, this was massively different 10 years ago when I tried to end my life. I was in my second year of college when I went to step out into a busy road of rush hour traffic, but somehow my body stopped me and I clung to a lamp post for a little while before I made it to classes for the day. I got really poorly after that and that year was a complete blur because of the medication and because my brain was so poorly.

I did manage to get a hold on things though and found that with a few little methods of controlling my anxiety I was able to handle whatever life threw at me. That didn't mean that bad voice just went away, that the anxiety was gone and that my OCD was non-existent, it just meant that those things were quieter and more manageable. 

I've worked really hard to get to where I am today and if the suicidal teenage version of myself could see me now, I think it would bring her comfort to know it can get better. Despite all of the work and all of the good days, sometimes my brain gets a bit tired. I have rough days, like anyone else would and with a lot of big life changes happening in the last few years, I've sometimes struggled to stay on top of my brain.

There's been some sad nights where I've cried at my fiancé and just tried to make sense of those things and I've even started counselling to work on what is upsetting me and how I can move on and make things better. I've tried really hard to manage and again, there's been more good days than bad, the bad days have been progressively harder to handle. 

I've you've read my blog before you might have seen that I've really been struggling with leaving the house and the anxiety that is causing me since the pandemic. I've also been in the process of being diagnosed with endometriosis. My whole body just feels like its failing me and I feel trapped and unable to do anything about it. On top of this, other things have been happening in my life and this has snowballed into a bigger down patch than I normally get. 

I don't really know why I'm writing this. I just feel like my blog has always been me working on my mental health and for once I'm tired. I describe the mental health issues I have as a "bad voice". It sounds like my thoughts but is separate to my own thought process. For example I can experience a bad thought, but I'm able rationalise that thought and know that it's not my own. Sometimes it's barely there but other times it can be louder than my own thoughts.

Things got really dark recently when my brain told me that those who love me would be better off without me here. Now I know this isn't true and that I have these wonderful people in my life for a reason and we have so much to look forward to as we keep moving forward. But that voice was so loud and and it was so hard to hear myself when it was happening. 

Being in that moment is scary. I'm sure you've heard about it before and if you don't experience it yourself, I'm sure you can imagine how scary that situation is. I felt so alone, despite being bundled up in my fiancés arms and although I knew I wasn't going to do anything, just having those thoughts again was overwhelming. I was worried I was getting as sick as I once was and I didn't want to lose another year of my life when things are so happy right now.

Depression sucks. It strikes at the worst times and sometimes we don't even know why it's there. I also like answers. When I'm sick, when something isn't working, I need to know why and where it came from. So I have a million theories of why my brain is currently feeling mushy and not running at full capacity, but I'm also determined to fight it, which is something I've never really experienced.

I'm not scared of getting "mentally unwell", I know I have support if I need it, medications that have worked for me previously and ways that I can get better. So we will fight this for every last fibre of it's being and I will make it out the other side. Right now I'm tired, struggling to concentrate and just wanting to lay in bed all day, but this isn't forever and I have amazing things coming up to get me through. 

If you feel like me right now, know you're not alone, that although those suicidal voices are scary they can't control you and although you might not feel very important or special, there are people that would be lost without you in their lives. If you need someone to talk to The Samaritans are a brilliant resource and can be contacted at 116 123 or if you're like me and hate phones and feel like you can handle a bit of a wait for a response then email them at jo@samaritans.org

You're not alone and things will get better (I need to remind myself of that as well),

Rebecca

February 2022 - My music favourites

 I've not done a music favourites for a very long time and I used to love sharing my top 5 songs of the month. I've just started a work from home job which has meant that I'm listening to more music/audio again and I want to start sharing what i'm listening to. 

1. George Ezra - Anyone for you

It may come as no surprise to you, if you've been reading my blog for a while or if you follow me on social media that I am a HUGE George Ezra fan. His music is so soothing and also is such a mood boost. It's been 4 years since we last had music from George but he's back and with a really brilliant song. It has that mood boosting quality that makes me want to turn it up on full and dance around the house. It's like sunshine in song form and I love it. I'm very excited to see what his new album holds as I'm sure it's got the usual George Ezra magic! 

2. Otto - Amelia 

I found this song after randomly hearing it on the radio recently and I've been hooked ever since. I've easily listened to it over 50 times because I just adore it. It reminds me a little of the band The Lumineers and I just cannot tell you how much I adore this song. It's light, summery and is just a real feel good track 

3. Bastille - Shut Off The Lights

Admittedly I have not listened to new music from Bastille for a little while, it's not really been for me but this has been on the radio a lot lately and I've been really enjoying it. It has such a good rhythm and I love that it sounds really Bastille-y (I know that sounds a little odd.). It feels like an old friend and it really bought me back to this band and the music they make! If you want a good dance, this is THE SONG!

4. Encanto - We Don't Talk About Bruno

If you haven't heard this yet, where have you been?!?! Encanto came from Disney in the last couple of months and We Don't Talk About Bruno has been in the charts pretty much ever since. Lin Manuel Miranda has made another musical hit and honestly are we surprised anymore? This song is a major ear worm and is frequently being played on Radio 2 and it's amazing! Also I'd love to know who your Madrigal part is for this song, mine is Dolores.

5. Haim - The Steps

There's always got to be a little Haim in the mix and I've been really loving their Women in Pt.3 recently. Haim are one of my go to bands and their music has been with me at key moments in my life. This song has the perfect little sprinkle of nostalgia sounds to it. Their voices are perfection and it's Haim so nothing bad can ever be said about these ladies. 

So there are my five favourite songs of February! I hope to keep sharing these songs with you for a little while longer and I'll also be adding them to a Spotify playlist below! ENJOY! 

   

Leaving the house is scary

The last two years has been difficult for everyone. The pandemic has ensured that most people have been locked away in their houses for a long time. My workplace stayed open through the pandemic but I did take the first six weeks of lockdown off work because my OCD and anxiety had been heightened by the fact that a health crisis was sweeping the globe. Although I've been going to work every week since then, I've found that leaving the house for other things is now setting off my anxiety and panic attacks. 

It's been really difficult navigating this new anxiety over leaving the house and it reminds me a lot of when I first got seriously poorly with my mental health and I needed someone to come with me anywhere I went. My grandad was taking me to and from college because I couldn't get on public transport, my mum was meeting me for lunch every day because I was struggling with being at college during my lunch breaks. I needed a support network just to help me leave the house and that was overwhelming and made me feel like I was a burden on those around me. 

Not being able to leave the house other than to go to work was really difficult for my anxiety as I couldn't get that experience of leaving the house. With my anxiety, if I don't do something regularly then it tends to make me more anxious and so leaving the house became one of those things. Like the rest of the world, I wasn't going shopping, to the cinema or out for a meal and suddenly those things became a lot more overwhelming than I had realised. 

I'm sure I'm not the only person experiencing this and I'm sure that a lot of people regardless of whether they previously experienced anxiety are experiencing this anxiousness when leaving the house. It's tough and I've had a couple of rough experiences where my anxiety has got the better of me. Back in September my fiancé and I went to a Final Fantasy VII concert at the Royal Albert Hall, I was so excited to be back watching live music again and I'd never been to the Royal Albert Hall before. We took our seats and I told my fiancé I didn't need to take an emergency anxiety pill because I was feeling okay. But as soon as those lights went down and the orchestra begun preforming, I couldn't breath, I felt sick. The room begun spinning and I couldn't escape. 

Before the concert begun, the guy next to me made a comment about people getting up to get to the stairs during the concert and I was instantly on edge as I knew that that might be me. If I have a panic attack, sometimes I just need to get out. I also knew I didn't want to ruin the concert for my fiancé and by getting up to sit in the hallway would mean that he would come with me, despite me encouraging him to stay. He's amazing at making sure I am okay in situations where my anxiety is beating me and I knew he wouldn't let me struggle on my own. 

I fought through, despite being unable to concentrate and barely remembering a thing from the concert. I got through it but I still felt like I'd failed. I felt like I'd ruined the whole thing for my fiancé who caught me, mid panic attack, not knowing what to do. I know I looked like a deer in the headlights, panicked and continuing to panic because I couldn't get out, I was stuck, but I also didn't want my brain to win. 

I've continued to have these panic attacks when leaving the house and honestly, it is incredibly difficult. I just want to hide away and not leave the house which is scary. I don't feel like I can go anywhere without my fiancé with me and that feels so limiting and I also worry about becoming a burden on him. I'm taking baby steps where I can. Leaving the house and doing little things like going and sitting in a coffee shop every now and again. 

It's really tough and I feel like I'm 16 again. I feel like I've taken a huge tumble backwards and lost all of the hard work that I had in place over the last decade. I don't ever want to be that sick again and trying to stay strong in times that are very unknown can be tough. But I'm determined to get back to normal again, to be able to leave the house without wanting to go back inside. I will get there, I know I will but for now it's baby steps until the world feels less overwhelming again. I'm sure I'm not the only one out there experiencing this and I hope if that is you, then you find some comfort in knowing you are not alone. 

Lots of Love,

Rebecca

xxx

A Reintroduction

My oh my how I've missed writing for this blog. It's been a year since I last shared anything with you and I'm so incredibly sorry. It's been hard in these covid times to know what to write and although my brain hasn't been behaving the best, it's been far better than it was when I first started writing on this blog. I do have a post that i've been writing on every now and again about how I'm finding leaving the house a little overwhelming again but I wanted to reintroduce myself before I jumped back into writing again. For those of you who are new here, or have just stumbled across my blog after a long old time, hello :)! My name is Rebecca and I'm now the grand age of 26, which still doesn't quite feel quite right yet. A lot has changed from the last time I shared a bit more about my life and it feels strange that so much has happened that I never wrote down in blog post form. 

The last time I wrote about myself I had just graduated from my BA undergrad degree with a first and I was over the moon, everything felt like it was falling into place and I had my future ahead of me. Skip to almost 3 years later and I feel a little bit stuck. I've just completed my masters degree (with a distinction) but i'm still in that limbo of trying to find a job in the industry I've been studying towards since my teens. It's a confidence kicker and some days I question whether I'm ever going to actually make it into a radio production job and whether the constant rejection might actually break me. BUT I'm very determined and I want to ensure that I achieve my dream, however long it takes. So I'm plodding along, applying for anything and everything that pops up and hoping that this year something finally sticks. 

I'm also engaged now, which is crazy to me! I met my lovely fiancé whilst working in my current job and the last almost three years have been wonderful! It is the happiest I have ever been and in the midst of a lot of life rubbish, he's been such a support by my side through everything. Not a day goes by where I'm not incredibly grateful to be with him. 

As another year begins, I'm determined to start writing more as this blog was such an outlet over some of the hardest parts of my life and I miss being able to just share that experience with you. I'm also determined to read more and aim to start getting my little book reviews back up and running. I know I made all these same promises last year but I promise I'm going to try this again! 

If your new here, welcome and if you're returning to the mild chaos, welcome back. This is hopefully a cosy, safe space and I'd love to keep you here!

Lots of Love,

Rebecca