Endometriosis: What it’s taught me.

When I first got my diagnoses for Endometriosis I was shocked and didn’t really know what it meant. What I wasn’t prepared for was the whirlwind of emotions, pain, tears, heartbreak, confusion and loneliness that would come along with it.

Endometriosis doesn’t only affect you physically if affects you mentally. It has been one of the hardest things I’ve had to get through and I will have this for the rest of my life.

Endometriosis made me cry because I couldn’t be the woman I wanted and do the things I wanted to do.

Endometriosis made me feel like a burden and a disappointment (even to this day), constantly feeling like I let everyone down.

Endometriosis made me feel lazy and I knew that’s what others were thinking too. My body would feel like it was shutting down and I would be useless.

Endometriosis made me feel physical pain like I’ve never felt before. The symptoms are horrific and I always wonder how I will even make it through the bad flare ups and if my body would cope.

Endometriosis made me feel like a crap wife. Being in constant pain, not knowing if I would ever have my own family.

Endometriosis made me feel alone. No one could understand my pain, no one knew what to do to stop the pain or the right thing to say. I was always the friend that’s always ill and flakey.

Endometriosis made me feel like my body had let me down. Over and over again.

Endometriosis made me feel scared and lost and like I had to plan every single day to make sure I don’t waste any energy.

Endometriosis made me make life changing decisions with little information to go on that I could one day regret.

ENDOMETRIOSIS IS REAL. IT MADE ME FEEL THIS WAY AND IT STILL MAKES ME FEEL THIS WAY.

Some days are better than others and Endometriosis has taught me many things along the way.

– Endometriosis taught me to appreciate each pain free day so much.

– Endometriosis taught me I am stronger than I ever thought and when I feel like I can’t go on fighting this. Somehow I do.

– Endometriosis taught me not to feel guilty for being in pain or ill.

– Endometriosis taught me not to feel guilty for having to rest and say no.

– Endometriosis taught me not enough information is known about periods/endometriosis.

– Endometriosis taught me social media and the people you get to know on it can literally save you on your bad days.

– Endometriosis taught me to say I’m fine when my body is in pain.

– Endometriosis taught me to be thankful for the small things in life.

– Endometriosis taught me to take time to remember what I have overcome and achieved.

– Endometriosis taught me to never give up.

What is Endometriosis?

Pronounced en-doh-mee-tree-oh-sis.

It’s March 2021 and it’s Endometriosis Awareness month!!

It’s great seeing so many endo warriors coming together and doing so many things to share their stories and raise awareness for Endometriosis – it’s definitely needed!

Throughout March I will be sharing my story and giving people information about Endometriosis. I will also be taking part in the #1in10 challenge where I will walk 10,000 steps each day. I am hoping I can do this and push through my flare up’s but if not I will have walked 310,000 steps by the end of March to fundraise for Endometriosis UK.

So… What is Endometriosis?

Endometriosis is a common, long term condition that affects 1 in 10 women where tissue SIMILAR to the lining of the uterus grows in other places. (I put similar in capitals because there is misinformation around, where people get confused and think it IS the uterus lining not shredding properly during a period and they believe Endometriosis is the endometrium but it is not).

The condition can cause painful, heavy or irregular periods, fatigue, infertility as well as bowel or bladder problems along with many other symptoms.

It is not clear what causes Endometriosis and at the moment there is no cure. However their is many different treatment options with excision surgery being the gold standard, although this is not available to everyone. There are many theories as to what causes Endometriosis such as genetics and retrograde menstruation.

Endometriosis can be a chronic illness and difficult to live with physically and emotionally.

It is so important we talk about periods and what is normal and what isn’t and help raise awareness for endometriosis as many women suffer with this condition without knowing and love life thinking their pain is normal.

Endometriosis can take an average on 6-10 years to diagnose and the sooner we are able to recognise it and treat it the better the outcome for the patient. Medical professionals themselves do not know enough about Endometriosis with some telling their patients it’s all in their head, it’s a bad period, it’s normal and giving them different treatment options that may not be the best for them.

This is why March is such an important month to help raise awareness of this condition.

If you find your periods painful do your research! Log all your symptoms and visit Endometriosis UK so see if your symptoms match. Endometriosis is diagnosed through laparoscopic surgery (where a camera is inserted through a small incision in the stomach) and will rarely show on scans/MRI’s. So if your having issues and your scans come back clear like mine did for many years you may still have Endometriosis.

I’m looking forward to March and raising as much awareness as possible and connecting with many people and learning more about Endometriosis myself.

If you are concerned about your own symptoms or have any questions I’m happy to help as best as I can! I had never even heard of Endometriosis before I was diagnosed and couldn’t pronounce it at all and I hope from this post someone somewhere has read the word Endometriosis and now knows the basics of what it is and how to pronounce it! 💛

Endometriosis: The Next Steps

So yesterday was Valentine’s Day… it was the first time me and Rob have really made an effort. Usually we don’t really bother with Valentine’s but after the way this last year has been we wanted to make the most of celebrating things. We just had a 3 course meal cooked by me, then drinks and games after. It was perfect. It was nice to just appreciate each other’s company and make each other laugh.

Whatever you did for Valentine’s Day I hope you enjoyed it.

I received my medical records today finally!!

I requested these about a month ago because my endometriosis journey was a blur to begin with and I thought it would be interesting to read my surgery notes on where endo was located as I don’t remember fully. I may do a separate blog post on this when I have had time to take a read and fully understand them.

Since my last blog post I have had my telephone consultation with a gynaecologist. It went well but if you follow me you will remember me being angry when I got off the phone. This was because although the gynaecologist was helpful and has referred me to an endometriosis clinic and my fertility will be assessed and I will be referred to a fertility clinic I was so hurt and angry.

At the end of the phone call after I told him I am trying to conceive and him saying he will refer me to the above clinics… he told me to get pregnant and it will cure my endometriosis.

Honestly, if you have endometriosis this is probably one of the most annoying things to hear. It’s insensitive and it’s a lie.

There is no cure for endometriosis and although pain be be relieved for a while during pregnancy it can return after giving birth. Let alone I just told him I was trying to conceive and some people with endometriosis have fertility issues it was completely insensitive.

I vented for a while and got over it but it just goes to show how important raising awareness is and not even medical professionals have the correct information or answers.

I have also nearly finished reading ‘The DR will see you now’ and it has been a great book to read to understand endometriosis. I will do a review blog on the book when I have finished but I really recommend it to anyone who is suffering with endometriosis. I wish I read it sooner!

What comments have your Doctors made that have hurt you or made you angry? Let me know in the comments.

Lockdown & Endo: where I’m at with it all…

It’s been a crazy start to the new year…

Firstly let’s address the pandemic and lockdown 3.0. I. AM. STRUGGLING!

The other lockdowns didn’t bother me that much. I mean yes it was shit not seeing friends and family and I missed normality but it was good for me to reflect on myself and my mental health and just where I want to be in life. All of which I’m working towards. But, this one. No. No thank you. I’m done. 😂 I am finding this one hard, I get it and I know I’m not alone. I think what I’m finding hard about this one is that life has not been normal for nearly a year and I miss just being able to go see family and friends when I want and wow do I miss going to a restaurant! All we can do is hope that normal life is coming soon and appreciate the small things. And I am so grateful my family are safe and well!

Endometriosis update: So for the past few months I have noticed my endo symptoms coming back, especially when I’m on my period and it does feel like I’m back to where I started but I must remember I’m not. I have a diagnosis and I know my symptoms.

The symptoms I’ve been getting are: -fatigue:I am constantly drained. I struggle to go to work all day and come home to cook, clean etc. When my fatigue was at its worse I would be struggling to stay awake by 2pm and when I got home from work I would have to sleep. It’s not got this bad yet but I’ve definitely noticed a difference.

-cramps: I don’t just mean the normal period cramps I mean the painful barbed wire around your uterus cramps. The ones that leave you doubled over in pain and unable to walk or stand properly. At the moment it’s worse when I’m on my period but I do get them now and then throughout the month.

Headaches/migraines: This one is pissing me off. I suffered with headaches and migraines throughout my teenage years, I was unable to go to school, had to miss going out for social events at times and struggled to keep a job. I would have one every day. I saw several headache specialists who couldn’t figure out the cause. Until I was diagnosed with endo in 2016 and they disappeared after my surgery and I was told they were linked. Well, now they’re back and I honestly forgot how much they affected my day to day life when I had a few years without them.

Painful periods: My periods are awful at the moment and the first day or two completely wipe me out. I was having Zoladex injections which put me into medical menopause and they were so helpful. My pain was pretty much non-existent and I would only suffer rarely. My injections stopped the beginning of 2020 after I took them for one year because using Zoladex as a treatment for Endometriosis is supposed to be 6 months max. 🤷‍♀️

Chest/shoulder pain: this is a new one. I’ve never had this before and when I started getting it I never linked it to Endometriosis. I am logging this along with my other symptoms just in case as I know people get this with endo when endo spreads around the body. Fingers crossed it’s nothing 🤞

So I requested my medical records on all Endometriosis from my GP, I am just waiting for them to arrive. It’s all been a blur the last 4/5 years so it will be interesting to read through them and see photos from my surgery and the notes because I don’t even remember where my endo was found. I just know it was sticking my organs together. Since I’ve been sharing my journey on Insta I will share these when I have them!

Talking of insta… it’s really helped me take charge of my endo, connect with other endo warriors, support others and educate myself more on my illness. It’s so strange how talking to a bunch of strangers can feel so refreshing when you know they just get it. They understand and their is no guilt or burden feeling when you talk to them. It’s also amazing when I get messages from others and can offer them support it makes me remember why I need to keep fighting this and on those days when I just want to give up these people who I have never met are there to listen to me and support me and pick me back up. For every endo warrior who I’ve spoken to, Thank you. Because some days are just really shit and you get me through! 💛

A month into 2021 and my GP has referred me back to the gynaecologist. I put it off for months because ‘my pain wasn’t that bad’ and still isn’t compared to a few years ago but it’s got worse and I have to remind myself that the pain doesn’t reflect how much endo has spread if it has. So I finally spoke to my GP about my symptoms who referred be back straight away thankfully.

So that’s me. My life and my endo. I have a few other things going on and I will talk about them in future posts as I didn’t want this to be too long…

Please continue to support each other, listen to your body and be kind to one another. 💛

2020-2021: New year, New goals!

I’m back!

I did a recent poll on my insta/Facebook to see if I should start blogging again and the majority vote was yes… so here I am. Welcome back!

Quick recap of my journey

I first started blogging back in 2017 about my endometriosis journey to help me understand the disease I had been diagnosed with in 2016.

In previous blog posts I covered my journey, diagnoses, remission (endo free) and relapse (endo back) and the treatment options I was given including zoladex injections which put me into a medical menopause.

I felt like I had found a purpose blogging, it was a good way for me to get the release of the everything that was going on in my head as well as helping to spread awareness and having messages from people asking for my support made me feel good and made me want to be strong for them!

However, my last post was this time last year where I set myself new goals and then well… 2020 happened and I kind of just tried to get through day by day of the shit show of a year like most of us did! Blogging was forgotten 😦

But I’m back in 2021 wanting to stick to it this time and raise as much awareness as I can to help others and like I said before help myself! I’m not sure what I will blog about in the future or how often I will post I guess I will just go with the flow.

2020 goals

This time last year I set myself goals and yes I definitely did not achieve them, but I think many can agree last year was just about making it through! Many of us have had a very reflective year and it’s great to see so many people appreciating the smaller things in life and putting themselves first and focusing on mental health and self care which is what I have also been doing this year. My goals last year were:

Are you ready for this first one, I just laughed when I saw it haha….

  • Blog more… (yep this definitely didn’t happen!)
  • Buy a house… (this did happen and I love my home so much!)
  • Improve my health… (still working on this but when I first wrote this goal it was about weight now it just general health and feeling good and learning to love myself!)
  • Save money… (well I mean we saved to buy a house but then our money went into the house so we have just started saving again!)
  • Complete Endo March in London… (let’s just not talk about March last year).
  • Be happy… (considering it was 2020 and yes I’ve struggled with my mental health as most of us have I am happy and I have been very lucky so I’m ticking this one off!).

I would say 4 out of 6 isn’t bad going considering! Haha!

So I am currently struggling with my endometriosis. My zoladex injections were stopped last year and nearer to the end of 2020 my flare ups and periods have been hell and I had almost forgotten just how hard day to day life is when a flare up hits. Its hard to remain strong and fight this disease especially when my mental health has been up and down which is why I really want to start posting again! Supporting other endo warriors helps me keep strong!

My endo journey now

At the moment I am not receiving any treatment or on any contraception (I’ve been with my husband 12 years this year, so when it happens it happens and we are just keeping everything crossed) and I am trying to manage my symptoms myself even though each period is becoming worse, it may be a trip back to the gynaecologist soon. 😦 I spent New Years Eve being sick all night and then the next two days on the sofa with a hot water bottle feeling sorry for myself. But one thing I am learning is to listen to my body because I am always over doing it and making myself ill from pushing my body too far. (Spoon theory for chronic illness is an excellent way to understand the non existence of energy you may feel sometimes, I have previously posted about this too). So that is where I am at the moment, what feels like a full circle back to the beginning but I keep reminding myself it’s not. I have more knowledge and I know what I am dealing with now and I know when to ask for help and say no, a year ago I could not do this.

Moving forward

My plan is to develop my knowledge of endometriosis, continue to share my journey and support others as much as I can and I really hope posting will help me achieve this! I would love any tips or feedback because I am still practically new to this and I just totally wing it!

2021 goals

My goals for 2021 are slightly different and although there is lots I want to work on behind the scenes these were the ones I thought would help me best to work on my mental health so I focused on just 5!

  • Pass my driving test- now this is one I say every year but I really want to push myself to achieve it this year if the pandemic lets me!
  • Read 10 books- I love reading and I know I need to take time out for just me. I did originally put 50 books but I lowered it because reality set in so I am hoping this will be achievable.
  • Get healthy- physically and mentally like I said this year it’s not all about losing weight!
  • Draw everyday- ok so I struggle to find things to help me relax and drawing/colouring is something I really enjoy but I’m not the best artist haha! So the goal is to just do something I enjoy each day whether it’s good or really really bad and develop my drawing skills. I’m hoping to find some online courses or books so if you know any send me a message!
  • Develop in work- I teach. 2020 has been the worst year I have had teaching and my confidence has been knocked massively to the point I am questioning if it’s the job for me. But I do enjoy teaching and I need to find the passion for it again so this goal is for me to fall back in love with teaching and developing my skills within it.

So that is an update on my life and my first post back! I have been questioning myself whether to post all day because I worry about what people will think, is it boring? Is it pointless? Is there any point? Will I share to much and look weak? But I guess even if it helps one person or only helps me it’s worth it right?

I would love to engage with more followers this time round so let me knows what your 2021 goals are? what was the best thing you learnt from 2020? post a yellow emoji if you too are an endo warrior.

Whatever the reason is you are reading this, whether it because you have endometriosis, you want to follow my journey, your a friend or family member or you just stumbled across it, thank you for taking the time to read and please share to help others who could be suffering with this disease.

For anyone who has lost anyone in 2020 I hope this year is better for you. Here’s to 2021, we got this!

Hello 2020| marriage, goals, menopause & mental health

Who celebrated a bit to hard last night and is feeling it today? Yep I did.

I can’t believe it’s been a year since I last put a post up! Blogging is something I really enjoy. I get anxious about posting, questioning myself if people even bother to read them, are they even bothered about what I’m writing about, is it boring, is it stupid, shall I just stop? But it’s my release. I enjoy it. If I’ve learnt one thing last year it’s to stop caring so much about what people think of me. So I guess we will see how it goes. Fingers crossed I get the hang of it and my posts become more interesting! 🙂

It’s been a crazy year BUT I am officially a WIFE!!!

Me & Rob tied the knot back in July, after 3 years of planning and a stressful few months leading up to the wedding everything went smoothly and the day was amazing. Rob cried a lot & I felt so loved by him, our friends and our family. It was perfect.

I stressed so much about how I would look on my wedding day, not being skinny like I wanted and the fear of having a flare up and getting ‘Endo belly’ as the day went on especially after food and drinks. On the day I was so overwhelmed with emotion and happiness I didn’t actually care and just enjoyed being surrounded by the people I love the most. Then when I received the photos I had that fear all over again. I soon realised not to worry or care because I loved my dress, our day and I am happy. Also our photos were amazing!

February 2020 will be one year since I started having Zoladex injections that put my body into menopause. After 2 operations to remove my endometriosis this is what doctors advised due to how quickly it kept growing back. Going through menopause at 24 years old has been an experience to say the least! Hot flushes, restless legs, mood swings, sleepless nights the list goes on but my Endo pain is nowhere near as bad and for that I’m grateful.

Also this year I’ve battled with depression and anxiety, suffering with panic attacks, to not wanting to leave the house but I’m learning ways to cope with that and it may have been a hard year but I made it.

These last few months I have realised how important it is to just take time for myself, set goals and enjoy working towards them, so that’s my plan. I have written a list of goals I want to achieve in 2020 so bring on the year ahead!

I’ll keep you updated on how it goes and i promise to post more!

2020 goals

  • Blog more
  • Buy a house
  • Improve my health
  • Complete Endo March in London
  • Be happy
  • Save money

For those who haven’t felt themselves lately, you will get through it but for now learn to process your feelings and identify the changes you need to make, to live the life you want!

For those suffering with endometriosis may this be your year and hopefully the year they find a cure!

For now here is a look back on my 2019, happy new year to you all.

L x

Started the year off at Warner bro studios Harry Potter. I have the best job!

Had a blast celebrating New Years nearly a month late.

Started the medical menopause process with my first monthly injections. Yes it’s huge!

Went on Hen do number 1 to London with many Harry Potter antics & feeling like a celeb at Kings Cross stationpeople were asking to have pictures with me!

Hen do number 2 in Benidorm where I got the most ridiculous sunburn glasses mark from falling asleep by the pool hungover.

Finally got married to my best friend after 10 years together and it was the most magical day.

We honeymooned in Turkey and made some amazing memories.

Rob surprised me with a trip back to Barcelona as we loved it so much the first time. Travelling with him is my fave.

We became pet parents for the first time and welcomed our kitten Tasha into our homenamed after her white tash and she is beautiful!

And finally celebrated the end of 2019, the end of a decade and to new beginnings.

Thank you to everyone who has supported me, made me laugh & bought happiness into my life in 2019.

New year, New treatment

It’s been a while since I’ve done this, after coming across an old blog post of mine, I thought I would go back to blogging as it gave me an escape to talk about Endometriosis and I loved hearing from others and how I’ve helped them! The questions and comments I received were so overwhelming so here I am…I guess I’ve just been enjoying life ‘endo free’ after my second operation in 2017.

_________________________________________________________________

I had a good few months with no symptoms or pain and I finally started to feel myself again.

Fast track to roughly October 2018, I noticed symptoms coming back and I admit I avoided the signs at first and would sit on the toilet in pain just thinking ‘it can’t be back yet, they said it wouldn’t come back this quick it just can’t be Endo’. But eventually I couldn’t deal with the pain any longer so back to the Doctors I went.

It was the same routine as usual; urine samples, scans, questions, swabs and more before I was referred back to the gynaecologist and being told my endo is more than likely back.

As the weeks went by whilst I was waiting for my appointment to come through the post my pain got worse and I was falling back into the trap of not feeling myself…

Just before Christmas I went to my appointment. I didn’t know what to expect this time, I personally thought I’d be scheduled for another excision surgery to remove my endo… not this time. This time was different, I was told they will not be doing anymore surgery as at this rate I am having surgery every year and my endometriosis was growing to quickly and more surgery will cause more damage. I just sat there surprised and scared. “Is this it? Is my life just going to be me in pain”. Then the Doctor said there is another option for me… medical menopause. She went on to explain I will have monthly injections that will put my body into menopause as my coil clearly wasn’t surpressing my endo growth and I was still getting regular periods, so this would be the best treatment for me now.

A few days after Christmas I was laying on the sofa watching tv when I got this sharp excruciating pain, it was endo like but not quite the same, I knew something wasn’t right. I sat there screaming and crying in agony for two hours until my mum and fiancé dragged me to the hospital. When we arrived I was dreading the 8 hour wait in A&E, but I didn’t have to worry about that because they took one look at me and rushed me straight through to the doctors. I was given plenty of painkillers and morphine to help ease the pain whilst they did tests to see what was wrong. Roughly 5 hours later I was told I will have to wait to see a gynaecologist, so after receiving another round of morphine I dozed in and out of sleep and spoke about chicken nuggets. (This seems to be food I want every time I am given morphine, not sure why!)

8am came and I was assessed, my pain is what I could only describe as what I could imagine contraction pain to be like. I had never experienced pain like it! After some investigating the nurse told me the pain I was feeling is somewhat correct, I wasn’t pregnant but my coil had dislodged and was pushing itself out of my vagina!!!!! I really didn’t know if it was actually happening or the morphine at first but not long after my coil was removed. The sigh of relief was amazing the pain stopped pretty quickly after!

As I am being put into medical menopause they didn’t bother putting in another coil. So now I’m waiting till February where I will start my first round of injections and menopause at 24 years old! Wish me luck and I apologise for my mood swings in advance to all my family and friends! But I’m hopeful to be pain free from endo at least for a few months 🤞

So that’s my update for now feels good to be back writing and sharing my story!

L x

Living with Endometriosis ft Endo belly.

Tomorrow is the 1st of March which means one thing… Endometriosis awarenessmonth!

As part of Endometriosis awareness month I wanted to write a post, that will hopefully show those who don’t know, what it’s like to live with Endometriosis.

If you have Endometriosis, your life is basically full of medication, fatigue, cramps that are so crippling you can’t move from your curled up spot on the sofa, bed or sometimes even the floor, the random bruising and burns from using heat pads, the constant frustration of trying to find a comfortable position at night and praying you will wake up on a ‘good day’ with no flare ups… and if you have made plans, kiss your good nights sleep goodbye, because if you are not awake from the pain, you will be awake wondering if you will be able to make them or overthinking the guilt of having to let people down yet again!

It also means having to keep track of what medication you have taken, trying to work out what pain relief is best for your current flare up (which is made even harder by Doctors telling you their different opinions on what you should take) and panicking when you forgot to stock up!!

Living with Endometriosis means having an ‘ugly day’ nearly every day because your bloated and have Endo belly (I will get to this in a second). It’s the uncontrollable mood swings from your birth control, the break down in friendships/relationships, it’s not feeling like a ‘real’ woman and that your body has let you down. It’s constantly thinking WHY ME!? And it’s the feeling that your alone and becoming depressed because you can’t be you.

So to sum things up it’s a living nightmare!

Unfortunately, unless you have Endometriosis you will never know the struggle first hand but by raising awareness and giving people knowledge and speaking up we can help others understand.

So what I thought was… instead of just words how about I get some real life pictures of what it’s like to have Endometriosis. So that’s what I did. On an Endometriosis support group I asked people to send me pictures of there endo belly and post – op photos.

For those who don’t know what endo belly is, in simple terms it’s a huge Endometriosis flare up that makes you bloated and look heavily pregnant. (which is awful considering many with Endometriosis want their miracle to happen and to be able to get pregnant but are unable to)! 😦

Here some photos from a few amazingly strong women who fight this illness day in day out!

This is just a few photos and a glimpse into what it’s like living with endometriosis.

The saying ‘you never know how strong you are until you have to be’ is so real to me physically and mentally, since being diagnosed and that’s what every woman with Endometriosis is, STRONG!

Lets make this Endometriosis awareness month count!

Along with my ‘Endo the night’ fundraising night I will do my bit to raise awareness.

My fundraising event is local to me but if you would still like to donate please click the link below. Every penny helps and can help find better treatment or a cure!

💛

https://www.justgiving.com/crowdfunding/lauren-endothenight?utm_source=Facebook&utm_medium=Yimbyprojectpage&utm_content=lauren-endothenight&utm_campaign=projectpage-share-owner&utm_term=52M42kKeY

Thank you to all the girls who sent me there pictures to use. You are beautiful, never forget it!

Decisions: just one of the hardest parts of having endometriosis.

This is probably going to be one of the hardest posts I’ve written, considering the only person I have spoke to about this is my fiancé. Not family or friends no one. I always find it such a difficult thing to bring up because I know I’m overthinking it. I’ve been wanting to write this post for a while but never felt confident enough. But if I’m going to raise awareness for endometriosis and help others I guess I need to be honest too.

When your told you may not be able to have children, now at 23 and two operations later you are told all your Endometriosis has been removed for now, I thought life was going to get a bit easier. It has on the pain side of things but emotionally it’s kind of got harder.

When I got the all clear I was happy, a few days later I couldn’t stop thinking to myself. I didn’t know who to talk to without sounding silly or dramatic so I just kept it to myself. One day I think I just cried and finally told Rob how I felt and he told me he had been thinking the same which took me by surprise. Even the thought of writing this down and sharing it with everyone’s scares me so much.

Before I got the all clear me and Rob couldn’t wait to try for a baby but we wasn’t in a rush to, as we were looking forward to our wedding that’s booked for 2019.

So the thing I kept feeling was this…

I got the all clear. I’m 23 years old in my own place, we both have good jobs, planning our wedding, but I felt we needed to make a huge decision… baby or wedding?!

My mind was going crazy thinking I’m all clear at the moment, now is the best chance to try for a baby. Because what if my Endometriosis grows back and it then becomes harder for us to have a baby. I would hate myself for choosing the ‘sensible’ option. People would ask us “when are you two going to have a baby” or say things like “it will be you two next” and each time I felt my heart drop because I would brush it off and say “ohhh not yet” but inside it’s all I wanted. Not that this was there fault but I just kept it to myself.

Our wedding is booked and I’m so excited and the ‘sensible’ option is to get the wedding out the way first, be patient and try not to worry which is easier said than done. I also always told myself when I was diagnosed with endometriosis that I wouldnt rush into having a baby because of it.

Funny how it changes the way you think once you’ve been through it all.

I’m still struggling to come to terms with the fact I chose the sensible option despite people in support groups saying to just go for it! But that’s what I’ve decided and even though I question myself almost everyday if that’s the right choice that’s what I’ve decided.

The point I’m trying to make is to get people to realise the affect this illness can have. You can’t see peoples symptoms so it’s hard to understand how painful it can be, but you also don’t see the inside of someone’s mind and know all the little decisions they have to face, the stress, reviewing every single part of their life even after getting the all clear.

The hardest part was being to scared to talk to anyone about it because of feeling stupid or just for them to tell me what I already knew. That I don’t need to rush into anything and I’m overthinking it. But that still didn’t stop me thinking it.

As hard as it is to put this out there for me I’m ok with that decision. And only time will tell if I made the right one.

This is just one little decision I had to make whilst going through my journey and others with endometriosis have had to make even harder ones.

If you know someone who has endometriosis the best thing you can do is be there and support them. Ask them if they are ok, even if they say they are, let them know you’re there to listen, because trust me, the majority of people with endometriosis say that they are ok but are not, because they don’t want to bother anyone with there problems or don’t think people will believe or understand them.

Please don’t let them feel alone!

At the end of March I will be organising my own Endo the night fundraising event locally. But if you would like to donate on my Just giving page all money will be going to Endometriosis UK charity. Let’s help spread awareness and your money could even help support women or find them a cure!!

https://www.justgiving.com/crowdfunding/lauren-endothenight

💛💛💛

Endo free: the ‘new’ me

How do you even describe the feeling of being told your endo free?

The happiness I feel in my life right now compared to before is huge. No matter how hard I tried I couldn’t be happy there was always the pain to remind me of the betrayal my body had done to me but…

2 months post op…and I’m feeling good!

I’m starting to feel like myself again, in fact I feel like a new person and already have a more positive outlook on my life in general. This doesn’t mean I haven’t been facing tough decisions in my own head about my future, but I can try to be positive about them and enjoy the moments I have being pain free.

On the 2nd January 2018 I met with the doctor who did my excision surgery. I walked in not knowing what to expect, what the outcome would be or where I would need to go from there.

Anxiously I walked in, sat down and kind of half smiled at my Doctor. I looked down at the desk and saw some photos from the surgery, the doctor looked at me as if he could tell what I was thinking. The photos I was looking at were scary to me. To anyone else they probably looked like the inside of a human body and perfectly fine. But what I saw, was my bladder, womb and other organs covered in scar tissue and endometriosis and I was shocked at how much it had grown back in the space of a year. I just sat and stared at them until my doctor asked me if I was ok. (He probably asked me within seconds of entering the room but to me it felt like hours). I looked at him and he smiled and just softly said ‘everything is fine’. I started to cry with happiness as he showed me the photos and gave some detail into what was found and removed. He then said to me what I wanted to hear, the words that would make this whole process, the stress, the recovery pain, the emotional rollercoaster, worth it… “your all clear. I removed all of your endometriosis” (I was at this stage smiling like a Cheshire Cat) until … “it’s all clear and wont grow back”.

My smile dropped and I just looked at him. Don’t get me wrong I was over the moon I got the all clear but hearing the words “it won’t grow back” made me angry.

I gave him a look, I’m not sure what that look was but he knew I wasn’t happy and knew exactly what I was thinking. He then carried on with “hopefully… your in remission, your clear for now and we hope it won’t grow back again, but it could do. Or we at least hope it won’t grow back as quickly.”

That was enough for me I thanked him for doing such a great job in surgery and left. I came out of the doctors with mixed emotions. I was so so happy I had got the all clear but I felt angry and annoyed and couldn’t figure out why.

I got home and realised that after ringing round to my family members explaining I was fine and what the doctor had said, I realised my tone of voice changed every time I quoted him on saying it wouldn’t grow back. Anyone with endo will probably understand why I was angry now.

Endometriosis has no cure at the moment. There are things to help treat it and reduce symptoms but surgery has not been proven to cure it. So when your doctor says the words ‘it won’t grow back’ i got angry for 3 reasons.

1. it made me realise that if I hadn’t researched endometriosis, I would’ve gone with what he said and believed him. It made me wonder how many poor women haven’t done research and believe what doctors say because they are the professionals and how shocked they must be if and when it grows back.

2. Being a women with endometriosis I know that there is nothing more we want to hear than the words “it won’t come back” but not on false hope.

3. It also made me realise that this was a doctor, a medical professional and his knowledge of endometriosis was poor. It showed me how much more awareness is needed of endometriosis and how little is known about it.

Don’t get me wrong the best way to start the new year for me was being endo free, pain free and ready to live my life how I want to. I could see the difference straight away. I’m more motivated, I’m not fatigued as much, I can get through a whole day without a nap now, I don’t struggle to stay awake by 2pm, I don’t come home from work and fall straight to sleep on the sofa. I can actually go out and do things, plan more things because at this moment in my life I do not have to worry about a flare up! And for that I’m thankful for!

I’m one of the lucky ones. I am currently able to enjoy some endo free time, not everyone has this option. But whilst I’m endo free (hopefully for a long time) I will continue to blog and raise awareness for a disease which is clearly not known about enough. There is so much still unknown about this disease, yet so many women are affected by it. The physical pain is just the start. Getting the right support in place is so important not just for the physical part but for the emotional stress that comes with endometriosis.

By talking about it we can make a difference. 💛