Monday, 31 July 2017

My story: Katie Awdas

I started with what I now know to be endometriosis symptoms when I was 16. As this was 15 years ago, the doctors put me onto the combined pill as that dealt with my heavy periods. I came off the pill when I was 21 as I was concerned about news in the media about long term use of it. 6 months later, my periods stopped. I went to see the GP who did a pregnancy test (which was negative) and sent me for a scan to check for PCOS. 

Fast forward to being 26 and I was suffering with pain throughout the month. My periods were a nightmare, I'd be taking time off work every month as I needed to be in bed for the first 3 days of them. I woke up one morning and was in so much pain that I knew something had to happen. I could barely move. I rang 111 who suspected I was suffering an ectopic pregnancy. I ended up in A&E that afternoon. A&E did a pregnancy test and a urine dip and discovered I was suffering from a water infection (!) and sent me home with pain relief and antibiotics. I was back the next day as the pain was getting worse. They admitted me on the spot and referred me to a general surgeon. 

The general surgeon refused to refer me to gynae (even though his registrar wanted to) and decided it was my appendix (which an ultrasound had ruled out!) so I had an emergency appendectomy. Whilst recovering from that, my GP did a home visit with thrush treatment (because that's just what I needed at that point!) and said she suspected endometriosis. At this point I started to do some research about it.

I was then referred to gynae, who initially knocked me back! To cut a long story slightly shorter, I had a laparoscopy in August 2012 which diagnosed endometriosis and life as I knew it changed. In January 2013 I started on Prostap which put me into a temporary menopause. I've been in and out of the menopause ever since. 

I had my second laparoscopy in May 2014, my 3rd in November 2014 and my 4th in April 2014. I have a history of bowel adhesions which have damaged my ovaries quite severely. I am now infertile, endo has taken any chance of having children. Yet the battle does not stop. In July 2017, I was listed for my 5th laparoscopy this time with excision. 

I live each day as it comes, I've had 3 flare ups in the last 2 months, so something has to give. I've got my final placement coming up in September and I will need all of my strength for that! Surgery looks like its going to be in January, just as my degree comes to a conclusion... It's a good job I like a challenge! 

Thank you for sharing your story Katie.

If you would like to contact Katie, you can follow her on Twitter @katieatheart222.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at


Sunday, 30 July 2017


Image courtesy of
I didn't want to ever have to write this sort of post, but, to be honest, I'm getting a bit fed up of getting trodden on, so now I feel like I have no other choice.

EMLWY might be a personal website but it's all about you ladies and endometriosis in general too. I do everything I can to share others stories, list others personal blog sites and resources and help with any fundraising where I can. For me, none of this has ever been about competition. There are much bigger blogs out there, much better Instagram accounts than mine - but so what? It's not about how many followers you have. The whole point of this is to raise awareness of endometriosis and get that word out in the world for people to question and learn about, is it not?

Unfortunately, some people don't seem to think that way.

One of my posts in particular seems to be 'taken' again and again and used as others own work. The post I'm referring to is my 'Celebrities with Endometriosis' post. Don't get me wrong, as with any and everything on EMLWY, I want it to be shared. I want to get that knowledge out there. However, that's exactly why I spent hours writing that post. That's why I spent hours on the internet creating a one stop place with all that information - because it wasn't all in one place. The wording you've seen and read hasn't been copied and pasted. I've written that. I've put it all together. I'm the one who is constantly updating it with new people and information. No one else. Just little old me.

What I don't want is for it to be stolen and used as your own work - word for word, picture for picture - with no credit to EMLWY. And that's all you have to do: just give a little one word of credit. No one's going to suddenly stop following you and rush over to me. That's just silliness. It's about supporting this community and helping to spread the word. Not everyone relates to my blog, as I don't relate to every one else's. That's exactly why we need to support everyone though - to make everyone feel a little less alone.

I feel like I'm having to write this now because not only have I seen other blogs taking this post but there is one particular Instagram account which has a following much bigger than mine, that insists on doing this over and over again. I have contacted them and they have chosen to ignore me and still do it. I won't name and shame because I have no other issues with them. They are sharing information on endometriosis and I in no way want to stop that - but I do expect a little courtesy. I would never steal someone else's pictures, let alone a blog post, and not credit the person or place it came from. Even if you change the picture used, I still know it's been taken from EMLWY because, like I said, that information was never just in one place.

So, please, please continue to share information on endometriosis. Please continue to share the posts I and others write. But please don't steal. We all deserve support here, no matter how insignificant you might think we are in this world of endometriosis - we are all trying to make a difference.

Endometriosis isn't a competition.


Thursday, 27 July 2017

My story: Anneeda Pekeur

Endo, oh endo, where do I begin? You have been crawling under my skin for the longest time possible.

At age 10, I began to spot. Nothing serious - just an early bloomer everyone thought. I was so embarrassed when I had my first bleed. My mom assured me it was nothing to be scared about. It's Mother Nature taking it’s course.

By age 14, my agony began. Intense pain, bloatedness, fatigue, headaches and extreme moodiness. I was told it's just normal teenage hormones. I shrugged it off until the agony increased, more and more painkillers and one hormonal contraceptive to another once my body got used to it.

It wasn't all bad - I had my good days with no complaints. Up to mischief that caused mom lots of headaches and heartache. I tried to do everything all at once for I knew when the pain strikes, I won't be able to do what others so easily do.

As the years went by, this ever consuming illness intensified. By age 16, I had been to every clinic and doctor in our small town. The pain got so severe, I started lashing out at everyone. Rebellion struck with a vengeance because no one understood the pain I endured from cycle to cycle, uninterrupted and misunderstood.

I started to question my sanity. Feelings of intense loneliness hit for I was young, where is this all coming from? From doctor to psychologist, I was just more and more misunderstood. Being told it's all in your head, that I'm uncontrollable, jumping between happy and sad. I sucked it up and tried to move on but endometriosis didn't want to be left alone. I was seeking for love and acceptance, someone to understand what I was dealing with, but with no diagnosis in sight, my call for help fell on dead ears with no solution in sight.

Went to college at 18 years, missed a few days class, saw another gynaecologist, was given another prescription to pop some other hormone concoction.

Fast forward to when I entered adult life, started to work but had to take more sick leave than I was actually at work.

22, turning 23, my pain peaked just before I got married. Had my first laparoscopy, just to nonchalantly hear: “You have endometriosis, but it's not severe”.




Hysteroscopy number 2.

Laparoscopy number 2.

And then the final big one: colon resection, where they found my insides were a huge mess! Uterus, rectum, colon - everything was fused together, even my tube looked funny, like stuffed sausages! Stage 4 endometriosis spread through my intestines. I have never cried so much of sheer pain, exhaustion, not being able to eat… But most of all, thankfulness that now at least someone figured out what was wrong and why I was misfit, not fitting in. It wasn't all in my head, I wasn't losing my mind, contrary to popular belief.

Had blood transfusions and started life over, learning to adapt to my new normal. I couldn't work, I couldn't eat. All I wanted was to sleep.

After 4 years of marriage, we headed straight to IVF, just to hear no, you need something more intense like ICSI. At age 27, I had my 1st embryo to transfer, just to lose that one a few weeks later. At age almost 28, another 2 embryos, maybe-babies, were transferred. Seeing those magical two lines on a pregnancy test - it’s phenomenal!

Then came the low, when I lost both of them. 1 found in my tube - ectopic pregnancy. I lost a part of me and my left tube too.

Now, here I am, almost 29. The agony I experience is still so intense. Now I struggle with daily pain in my right shoulder that intensifies every time I get my period, every 32 days stat. No doctor can make a connection, even after another surgery. That prompted me to start my own research… And I think I found my answer. Lucky me, it’s so rare, no one can figure it out. I show all the signs and symptoms of diaphragmatic endometriosis but no one is qualified here to have a look.

So my struggle continues with this hateful illness. My days are spent crying painful tears of lost dreams and hopes because of this damn illness. Doctors looking at me funny is a common thing. My tummy is a mess. The medicine isn't working no matter what they try. I'm in pain daily. It's felt everywhere. I am so tired of going to the doctor, hoping, praying someone or something will give me relief. I am tired to the core with disbelief. So until someone starts listening and figures this out, my life is filled with daily doubts. How will I survive this black tunnel with no light insight?

Endo I hate you, that I can't deny.

Thank you for sharing your story Anneeda.

If you would like to contact Anneeda, you can follow her on Twitter @anneeda_pekeur.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at


Monday, 24 July 2017

It's been a while

I've had to take a little time away from the blog again because I've been feeling so poorly all of the time recently. I finally planned to sit down and do some work a few weeks ago and gave up because my head was so fuzzled. So, apologies if you've been in contact and I've not replied - I've just not been in the right place.

I don't know why I've felt so under the weather recently but it seems neverending at the moment. I can't remember the last time I woke up and actually felt good. Most days recently I've been staying in bed till past 9am whereas I've always gotten up at 7am to get a shower before Danny heads off to work. Not that staying in bed has helped at all. I'm still just as tired no matter what I do.

The worst thing I've been facing recently with all my health issues has been the fatigue more than anything else. Some days I am honestly floored by it. I really have to drag myself out of bed in the mornings and doing anything has been the biggest effort - let alone looking after an energetic toddler! I've even been having to climb the stairs on all fours recently. For about 4 days I didn't even change my t-shirt and leggings and although I managed to wash myself and my hair that was as far as I would get with making any effort with my appearance. You know, I'm used to living with pain. I've lived with it since I was 12 years old, and although sometimes it takes me by surprise, I can somewhat deal with it. But the fatigue. No. Just no. I can't take it. When you have no energy to even speak properly and you're so exhausted you are crying every day at nothing at all, it's just horrible. I feel like I'm wading through sand constantly with thick fog around me and bricks tied to every limb. I hate it.

I mentioned previously that I had been to the doctors and that he had suggested the implant as a treatment option for my endometriosis. Well, still not knowing whether I wanted to give it the go ahead or not, I went to see another doctor about it at the end of June. As soon as I mentioned it to the doctor she basically shook her head and said she didn't think it was even worth trying. Given my past history with treatments, the fact I've tried add-back therapy 3 times before as well as various pills (etc etc etc!), she didn't think it would benefit me in any way and that I would definitely bleed through it - which is something the previous doctor had said wouldn't happen (but he didn't talk to me about previous treatments I've tried). She was happy for me to try it if I wanted to but as I wasn't sure anyway, her opinion on it completely put me off.

The doctor decided that the best thing to do would be to refer me back to the hospital, so that's what I'm waiting on now. It's something I'd previously said I didn't want because I know their first suggestion will be surgery so they can see what they are dealing with, but it's got to happen at some point and it'll be a few months until I see them for a consultation and then a few months on again before any surgery so I've got a bit of time. She did think that my specialist has now retired though so I don't know yet who I'll be seeing. I mentioned that I had seen another specialist there and he was the one who initially diagnosed me with endometriosis back in 2005 and then referred me on to the Prof. so I might be going back to see him but I don't know yet. It's all a bit scary but I knew I'd have to go back at some point.

She also spoke about fertility and prompted me to start thinking about whether or not hysterectomy is an option for the future. It's something me and Danny have to face at some point but it's nothing to worry about right now.

In the mean time, she suggested some other tablets for me to take. I've been on Naproxen for about a month now and I'm just about to start on another tablet today to combat the sore throats I've had every day since starting them! I used to take Naproxen a few years ago but they were a lower dosage and I never felt they really did anything. But I definitely think these have had a positive impact on my pain levels. I now take Amitriptyline for my fibromyalgia every day, Naproxen for my endometriosis everyday and then from there take Paracetamol as needed and if needed I then go on to Dihydrocodeine which is much better because they are the tablets I absolutely dread having to take because of the side effects.

Now that I'm on more tablets, I've also applied for a prepayment certificate which should save me quite a bit on prescription costs. It's something I asked about years ago when I was on lots of tablets before but the doctor was very unhelpful and I left feeling very confused about it all. For years I was stuck paying my medicine costs myself. I think a lot of people think that I get free prescriptions because I'm on the Employment and Support Allowance benefit but I'm on the contribution side of it which means I've paid enough in to my National Insurance from working which in turn apparently means I can afford it. Which isn't the case at all! It wasn't worth getting this pre-payment certificate again until now so I think I've looked in to it at the right time. I now pay £10.40 a month for 10 months and then effectively have 2 months free and with just 1 prescription costing me £8.60 at a time, it's definitely going to be a huge help! I'd really recommend looking in to a PPC if you have two or more prescriptions a month.

In my last personal post, I mentioned we were going away for a few days. Well, we went away to Tattershall in Lincolnshire in May and we had the loveliest week. It was mine and Danny's 7 year anniversary so it was so nice to spend some time together and holidays with Hunter are so much fun now because he gets so excited about everything! We love taking him out to different places and a week away means we get to explore new places together. We were only about 1 mile away from RAF Coningsby as well so we got to see lots of planes in training every day - it was like being at an airshow - and being complete plane geeks, we absolutely loved it!

We went to a beautiful family wedding at the end of May. It was Danny's cousins wedding and we got dressed up to the nines - the first time I've properly dressed up in years! It was a lovely day but it was the first wedding we've been to with Hunter and boy was it hard work! I spent the majority of the day running round after him so I was absolutely shattered afterwards! He looked super cute in his little outfit though.

My mama, also treated me to an evening at a health spa last week. She had received it as a gift from her half-sister but my Auntie suggested that I go with mum instead of her. It was so nice to relax for a few hours and we both had a full body massage (minus the tummy area!) and then we had a 3 course dinner. I had been feeling particularly low that week with really bad fatigue so I was so happy I was able to go.

Oh, remember how I said I didn't want to tempt fate about my benefits assessment. Yeah, well, that dreaded letter finally arrived. I was actually meant to have my assessment a few weeks ago. I prepared for it, Danny took time off work for it, we dropped Hunter off at his grannies house (after some of the things we have seen at the assessment centre over the years there is no way we are ever taking him there!), we got halfway through the 45 minute journey to the centre and then the phone rang. "We're going to have to cancel your appointment because our computer system has gone down". I was fuming and pretty upset because it takes a lot to prepare for these meetings (both physically and mentally) and this is the second time they've cancelled one of these over the years (funnily enough, the reason behind cancelling my assessment a few years ago was that the assessor was off work because they were sick... Cue enormous sympathy from me...). Anyway, they very promptly rearranged the assessment and I had it on Friday this week.

I have zero idea how the assessment went. I mean, you can be lying on the floor in front of them dying a slow death and they'd still think you are fit for work. But, I did take Danny in with me this time as a witness which I've never done before, and he recorded it all, so that was a huge support. He seems to think it went well, but I just keep thinking of things I could have/should have said. But then you can only answer what they ask you and I put a lot in the billion page book form they sent out so really I think I did cover everything.

She did seem to focus on some things rather than others and whereas I've always believed it was just a 'tick the box' system, she did let on that some of the information she had on her computer for me was from past assessments. For example, she asked a huge amount of questions about my issues surrounding depression but this wasn't something I wrote about on the form because I don't feel depressed anymore. But she really focused on that. She also focused a huge amount, even going back to it when we'd moved on to other subjects, on my incontinence issues. Now, having been through a tribunal for these benefits, I know now that based on this issue alone, I should be getting the full amount of my benefits. I think that's why she focused on it so much. But she did seem to be veering to the opinion that I could control it all with thick pads. I just concentrated on the fact that there is nothing I can do about this issue because it's all due to my endometriosis being on my bladder.

One thing I know went well (for me) is that I really struggled with the physical movements she asked me to do. Some of them like moving my head and hands went fine, but bending over and then lifting my legs when lying down, well, I could hardly do these movements. It actually surprised me with how little I could move.

But, whether she believed it all or not... I don't know. I'm just so worried about it. I had forgotten how worked up I get about these things and I spent the night before in tears and was shaking with nerves on the day. I've just got to wait and see now and worry away. Danny said that at least we've been through this all before and we know what to expect from a tribunal etc. But months of reduced pay, having to put so much effort in to preparing paperwork and then having to attend the tribunal - I just haven't got the energy for it all again. Even though I do agree with what Danny says - that a tribunal would be the best thing to happen because then they'd be ordered to leave me alone again for a few years. Because I could have gone through all this, get my benefits and then have another assessment in 6 months again. Which is how often they used to assess me. God, I'm so worried. I'm trying to not think about it all because I just want to cry about it all constantly. If you want to have a read of all my past benefits history then just click on the 'Work & Benefits' tab under Repetitive Ramblings on the left of the page.

Come to think of it, it's probably been the reason behind why I've been feeling so poorly: the stress of it all.

I'm in the process of writing up a little 'what to expect' type post on the whole assessment stage though in case it might help any of you out. I'll get that out as soon as I can.

The last thing I want to mention is our diets. We both reached our second targets and decided to go for one more. To date, Danny has lost 3 stone (and has now technically finished the diet) and I've just got 3lbs more to go until I've shifted 2 stone! Since we reached our last targets, we've been a little more lenient with ourselves and have been having treat days every week. It's given us something to look forward to and although we've had to work a little harder during the week it's been far more enjoyable. But 3lbs more and then we can have a bit more freedom with the foods we are eating again... Meals can get very boring very quickly when you are on a diet!

Anyway, I'm so glad I've finally found some energy to give you a little life update! I have so many plans for this blog but sometimes it just has to be put to the side until I have a clear head, hands that aren't killing me and the energy to sit down and type. Keep your eyes peeled though. As always, there's a plan for another post soon (whether or not that will happen we will see!).