Share your story – Meet Taylor 

Ladies! Hi!

The following is Taylor’s story, she is so brave sharing this with all of us, please show your support and compassion. I love receiving messages from woman who are confident enough to let the world know their struggles in the hope they help someone else!

Happy reading everyone!


I suppose the reality of my disease sinks in the most when I’m at a table with my girlfriends who are all Also in their early to mid 20’s and they are talking about men and sex. They refer to these wild nights of excitingly impulsive, at times questionable choices about one night stands and regular encounters and my heart sinks. Not because I’m ashamed of them, because I never could be. I encourage them to be empowered by all their choices and their sexuality. They are beautiful confident educated women. But because that’s just one more thing my disease has robbed from me. 

I have stage 4 endometriosis and I have been struggling with this for eleven years. When I was eleven I was blessed with my period, when I was twelve I was in hospital for stints of time. I would have my period for weeks and months. One of my longest and most excruciating stints was 147 days, where I was bed ridden, needing to change my pads/tampons up to 40 times a day. This happened more then I can remember in my early teenage years. 


I have had 2 surgeries and am going into my third in less than 3 months. My disease has spread all throughout my body going as far up as my ribs and chest and as low as my anus, and I will now lose part of my bowel, this is my last opportunity to recover and be fertile. If this last operation does now work, I will need a hysterectomy. 


At 24 years old, my friends biggest fear is falling pregnant. Mine is knowing I may never. 

My same friend is aware that her sexual choices may have her labeled as a whore. I’m living my fear, that people have labelled me and cold, distant and alone. 

My friend talks about having sex multiple times a night. I have sex once every few months because the embarrassment and pain is too humiliating to express. 


My disease has prevented me from maintaining any form of a long term relationship. I can be a less than adequate friend at times, as my pain is as unpredictable as my symptoms. I have people say to me “oh I know heaps of people with that disease, isn’t it just bad periods?” Or “you go out and drink, I saw you last weekend” And it’s that label and attitude that we need to change. It’s that label and attitude that makes me feel as though my pain and heartache “really isn’t that serious” and it’s that label and attitude that will continue to minimise the battle we go into every day.  

I am lucky to have support from a great group of mates, who force me to go out and do social fun things and when I’m out I forget I am sick. It makes the coming home to bed a little more worth while. 

I love my life and want to educate as many people as we can on this disease. Let’s educate our friend and peers and support our sisters.


The photos below are side effects of the medication I get put on to minimise bleeding and pain. As so not flattering as they are it’s so important we see these, this disease does not just affect our insides.


Share your story – meet Amity

Hi gorgous ladies

Meet Amity, below is her Endo story and she just couldnt wait to share it with you all!

Happy reading xxx

My name is Amity and I’m from the South West of WA, I wouldn’t say living the normal life of any other but this page has inspired me SO much recently I felt the urge to share my own story, it’s so important to me that people get understanding about endo and continue to raise much needed awareness 💫17475085_1220838391367879_1971887056_o
Firstly, I want to start by saying- ladies! After reading your stories for those of you who have been going through this for years and years, I salute you! Down on my hands and knees! I have had problems for just over a year and I don’t know how anyone manages years of this!
My story starts when I moved out of home. No, not like any regular teenager, but leaving to get away from parents, who lets just say should not be so lucky as to have that title. I’d been spending A LOT of time with my best friend and her family, so much that they’d become my own family and I moved in with them. It was shortly after this when it all began. January/February last year I had awful heavy periods that just didn’t stop! Lucky for me my new mum was a nurse, praise lord she could take care of me but told me everyday she thought I needed to go to a doctor.
No way. I hated doctors and the thought of going to one gave me EXTREME anxiety. One night I had a pain attack so bad the next day I was booked in for a doctors appointment, my own choice. My first visit to the doctor had me put on some pain medication and given a blood test to check my iron levels. It was from then one I was to keep going back every week or so. My iron was low, due to blood loss, so I was put on iron tablets to go with the 15 other or so medications o had been put on. At that point I was a mess, I hated doctors, I hated needles and I hated swallowing pills and all of a sudden I had to face all three without warning. I did so for months before I was referred to a specialist, who lets say was not my favourite person. She told me it was pretty much ‘all in my head’ and she could ‘give me an operation but she almost guaranteed there’d be nothing’.
An operation I had. Laparoscopy and hysteroscopy indeed came back with nothing and my six week checkup with no results yet still in pain she said, quote, ‘throw all your pills in the ocean and do nothing’. Furious. Pain was still an everyday thing for me and coping I was not. I stayed with the same doctor for months who kept trailing me on new pills before they told me about his wonderful injection. They’d give it to me and it’d last 3 months. 3 months of no pain and no period, how could I turn that down? Even with my fear of needles I had the damn thing. The side effects I got from this ‘Depo Provera’ included hot flushes, migraines so bad I was hospitalised, burning rashes that looked like I’d got third degree burns, aching legs, just to scratch the surface. And all this came about EVERY SINGLE DAY. No, my periods weren’t as heavy, yes my pain was lessened, but the effects of this almost bought me to breaking point!

At this time mum decided enough was enough, she told me of a new doctor she’d spoken to, in fact broken down in front of and said he’d be willing to help, so to a new doctor I went. Some more pills and this time steroids to reverse or slow down the effects of the needle. But it was then my pain started inching back. I’d had my second ultrasound by then and way too many blood tests to count, but I was ‘fine’. I was referred to yet another specialist who was sweet, kind and fully understanding. He prescribed me yet another drug he almost guaranteed to help and we went away feeling somewhat accomplished, not knowing I’d be working as much as I could a week to be able to supply myself with such expensive medication. So we gave it a pass.

One late afternoon after we’d all got home from a trip to the city I threw myself onto mums bed and bawled I was experiencing so much pain. She was at wits end and called the hospital she worked at, explained she was bringing me in and when they asked which medication I’d tried she told them nothing today, nothing works. Truth. I got there, had some more medication and a lye down to wait for the doctor to come in, all with mum by my side. The most important thing from that night for me was not getting a painful needle in my butt that will forever keep me as far away from hospitals as possible, but hearing the sadness in mums voice as she explained my ‘condition’ to yet another doctor. I stopped listening to conversation after that.

It broke my heart so much hearing the hurt in her voice knowing she’d done so much and tried everything for me, I was willing to do anything to make it all go away, for both our sakes. This doctor promised small miracles. Weekly visits, a pain regime and a medication schedule that involved as little medication as possible. I have been taking them, I have been getting up myself everything 20 minutes to heat my own heat pack of refill my own hot water bottle and I have been trying my absolute hardest to attend every doctors appointment, even when it’s the last thing I ever want to be doing. I’m going to be honest and say I’m still in a lot of pain, daily. Pills and medications aren’t really working for me AT ALL and I’ve had days I do nothing but cry, I can’t bring myself to get up to go to the doctor and I the thought of going to work brings tears to my eyes.

I’ve just finished school and my aim always was to work work work and earn serious money, I’m currently working 5 days a week but feel like the most unreliable person ON THIS EARTH. I hate calling in sick. I hate standing there not being able to crack a smile to my customers because I’m in so much pain and I absolutely hate not having anyone understand what I’m going through. I was told because I’d had a laparoscopy, just because Endometriosis wasn’t found doesn’t mean I didn’t have it -and all the signs I have point to it. Endo is such a debilitating illness and is so hard to treat. I cry on behalf of all young women and ladies suffering, I know your pain. It is SO SO important to me that more is done not just to find a cure for this illness but to spread much needed awareness about this🎗
Thank you so much for taking the time to read my story, and I so look forward to reading more of yours and quietly smirking whilst I read in agreement with you all

Share Your Story – No.4

Share Your Story – No.4

Hi ladies!

Below is Katies story, she wanted to share her identiy as she “is not ashamed of who she is and that endo will not beat me”.

If you can relate to Katie who ahve any words or support/advice, please leave a comment below!

 

Katie also wanted to share with us some images of herself and inparticular of her and her partner,

as he is so incredible through my journey and keeps me strong

enjoy the read xxx16804538_10158101730400386_926934364_o

My name is Katie, I am 27 years old and I have been suffering with Endometriosis for just over 16 years now.

I started my period when I was 11 and practically from my second period I had the horrendous pains! I remember being petrified at such a young age and wondering what the hell my body was experiencing!

After 9 years of being fobbed off by the doctor who said I quote ‘your going to have to realise that periods are painful it’s part of being a woman!’ I finally found someone who listened! I burst into tears when the doctor finally said to me you need referring for further investigation because the pain your experiencing is not normal. Thankfully I have an amazingly supportive family who have helped me cope over the years, I would of lost the plot without them!

I have been poked, proded, examined in and out and had two laparoscopy procedures but still I am in excruciating pain every month. Just to add insult to injury I also have chronic IBS which doesn’t help whatsoever because that and the endo seem to do a brilliant job of teaming up in my stomach and back!

I am incredibly blessed to have such a supportive partner, he is by my side every step of the way from going to the shop at early hours of the morning to get me some pain killers, to ringing an ambulance when I am in that much pain that I can’t even walk! We have been trying for a baby for quite some time now which is incredibly heart breaking as we are desperate to be parents. It’s always great when someone asks ‘when are you going to pop out a kid then’?! Believe me don’t we all wish it was just that easy! Although I try to not let this evil disease take over it does have a massive hold on my life!

I find myself constantly panicking about forward planning in case I will be in pain, my mood is always low, my skin isn’t great and my motivation is rubbish. I literally dread every period because I know what is coming and there is nothing I can do about it! 16790860_10158101734245386_1399826831_n

I was so pleased when I found Annie’s page, without sounding cruel it actually comforted me to know that there are other people out there like me!! I wanted to share my story to maybe help other people or just to simply let other endo sufferers know that they are not alone in this cruel journey.

Thank you for reading 🙂🎗

SHARE YOUR STORY – NO.3

SHARE YOUR STORY – NO.3

Hi ladies! Following is a story from a fellow endo angel and one of the likers in my ‘All about Annie’ facebook community! PLease be kind, share words of support and wisdom for this beauty!

I hope some of you can relate and find comfrt in this post!

Happy reading xxx

p.s her name has been changed as she wished to be kept anon

I would like to share with you all my story. my names Sarah im 24 from merseyside area, it’s been nearly 2 years now since I first nearly collapsed in work with agonising lower abdominal pain where I was taken to hospital for suspected appendicitis. they sent me for scans were they came to find I had a cyst on each of my ovarys they weren’t to concerned about the 1 on my right ovary as it was very small were the one on my left was of a bigger size, they decided to keep an eye on me every so often by goin back for another scan. in the meantime my doctor was fighting for me to have a colonoscopy ( not sure if spelt right) because of my age this took some hell of fighting for. anyway goes and has that done they take a look inside my cervix and find a couple of cysts inside during them takin biopsys off them though these seemed to burst…….. results came back HPV CIN1 (stil not sure to this day what that is either).I’m stil goin to hospital for my check up scans while my right side is staying the same my left is growing a little bigger each time ( chocolate cyst they said it was) but not to worried about it although it’s causing me alot of pain.

the most painful time it started on a Friday to the point were I couldn’t move out of bed crying my eyes out… I ended up at the hospital were they put it down to a really bad water infection and sent away with anti biotics I knew this was not right I told them I knew what the pain was but they wouldn’t listen so I was sent home.. over that weekend I visited hospitals on 4 occasions and each time u was turned away.. my blood pressure was a little high my temperate was and so was my heart rate 36 hours I was in agonising pain and no1 would help me 😢😢 they booked me in for another scan on the Monday…. so when they look the cyst on my right ovary has gone but my left one is about the size of a tangerine at this point so we sit and discuss keyhole surgery… I signed everything at this point to say I wanted it out I leave the hospital thinkin finally getting somewhere to then get a phone call to say they are putting my surgery back as they don’t want me to go through with it as of yet because of my age.endo

so tired at this point from gettin pushed here there and everywhere I’ve lost all will I ever had and started giving up.. I then come back for an appointment to see consultant who agrees we can go through with it… 

so 31/1/17 I goes in to have surgery I’m only awake for 1 hour before I’m discharged with no medication and no answers the nurses couldn’t tell me what happened in surgery I’m told a follow up appointment has been made for a weeks time.. my family came up to see me but we’re told to leave the ward as visiting time was over and that I’d be discharged soon so it comes 1 hour and she brings me my discharge letter I’m having difficult at this time breathing walkin and moving i was left to go to the toilet by myself and to get myself changed then left the ward virtually on my own to were my mum met me it took me about 20mins to get out of the hospital screaming in pain because they made me walk…had to go to my doctors the next day for some strong painkillers 🙈🙈 what a nightmare it was gettin there the bumpy car ride made me even worse I sobbed all the way there and screamed the place down in pain they said I should never have been discharged the way I was.. the gas pain was unbelievable in my shoulders my chest stomach ribs everywhere I wouldn’t wish it on anyone..

so 1 week after surgery (today) I go back to gynecology were I’m told they discovered alot of endometriosis inside none was removed whist having my surgery done so now I have to see a consultant in 2 weeks time to talk about having a bigger operation to remove all this endometriosis 🙈🙈🙈 this was alls i needed I never ever want to go through anything like that again and now It looks like i have to… I’m stil recovering now but hope you all read my story thank you all very much and annie for this page ❤