ABOUT.


Hello! 


Endometriosis: my life with you, or EMLWY as I often refer to it, is a very personal account of my life with severe/stage IV endometriosis. I've struggled with the disease since the age of 12, but wasn't diagnosed until I was 21. In February 2012, a flare up meant I had to go on long term sick leave and after being made redundant in the same year, I've been unable to work since. To add to all that, over the years, my health problems have evolved and I have also been diagnosed with fibromyalgia and borderline osteoporosis. I've also battled bouts of depression and anxiety along with 'endometriosis related pain' and infertility. In 2014, after 2 years of trying to conceive with a blocked fallopian tube and irreversible internal damage due to scarring and adhesions, we embarked on our first and, thankfully, only round of IVF and in the same year we welcomed a beautiful baby boy in to our lives.


Aside from my health, my name is Shireen and I'm now in my thirties. I live in a little village in the middle of England with my wonderful boyfriend, Daniel and our little boy, Hunter Ace. Daniel has been my rock since we became an item in 2010 and all of this, this horrible disease, has become his struggle too, but we work through it together and sometimes I wonder how I would ever cope without him and his loving support.


I know EMLWY features personal writing, and sometimes you may not want to read about some of the things I write about, but my goal is spread as much awareness about this terrible disease as possible. Please keep reading - the personal, sometimes gory, detailing doesn't feature in every post, and it means a lot to know that someone in the world is reading and supporting everything that I (amongst millions of other women) am going through.


Shireen 




I'm always happy to answer your questions so if you want to know something then please do get in touch. In the meantime, here are a few things I get asked more regularly...

How old are you?

30 something.... *weeps quietly*!

Where are you from?

I live in a little village in the Midlands in the UK.

Do you work?

After my endometriosis flared up in February 2012, I was unable to work due to the pain and went on long term sick from my job as a Personal Assistant. I was then made redundant a few months later and have since been on ESA (Employment and Support Allowance) until I am able to get back to work again.

Do you have a partner?

Yes. I've been with Danny since 2010 although we were friends for a few years before this. He's been a wonderful support to me.

Do you have any children?

We have a little boy called Hunter Ace who is a very special IVF baby.

What is endometriosis?

Endometriosis (pronounced end-oh-mee-tree-oh-sis) is a painful, chronic and sometimes debilitating gynaecological disease which affects millions of women worldwide. It occurs when tissue similar to that which lines the uterus (called endometrium) is found growing outside of the womb, usually in the pelvis (although it can be found anywhere in the body), and develops in to growths or lesions.

You can find out more about endometriosis in the Endo-What!? section here.


I think I might have endometriosis - what are the symptoms and what should I do?
The most common symptom of endometriosis is chronic pelvic pain which can feel similar to menstrual cramps. Often though, the pain from endometriosis can occur at other times in a woman's cycle. Other symptoms include heavy, irregular periods, pain during sex or after sex and problems going to the toilet. You can find out more about the symptoms of endometriosis here.

If you think you may have endometriosis or if you suffer from heavy, irregular periods and intense pain, please speak to your doctor. It's NOT normal for periods to be like this. It may not be endometriosis, but it could be something else creating problems. If you feel something isn't right with your body, go with your own instincts and push for an answer.


When were you diagnosed? 

In 2005, when I was 21. I began having problems with it when I started my periods at the age of 12 but thought this was all normal. It was only when I started experiencing pain during sex that I questioned the doctor which led to a quick diagnosis of endometriosis. You can read about my initial diagnosis and earlier story here.

Have you had any surgery for your endometriosis?

To date I've had two diagnostic laparoscopies (2005 and 2012) and two keyhole laser surgeries with adesiology for removal of endometriosis (2007 and 2013).

Have you tried changing your diet?

Besides eating healthy and steering clear of caffeine and alcohol, I've only tried going dairy free to date. It didn't make any difference to my endometriosis at all and I now have to be careful with what I eat with regards to calcium as I have borderline osteoporosis.

Have you been on any treatments?

I was on various combined contraceptive pills from the age of 15 and was on and off them until 2012. I had a Mirena coil for 2 years. I've been through add-back therapy 3 times now with two rounds of Zolodex injections (once with HRT) and one round of Decapeptyl injections (again with HRT). I've been turned down for trying out any experimental treatments as my bones have weakened due to the other treatments I've tried. I was also on a cocktail of painkillers up until I fell pregnant. Post-pregnancy, I went back on to a progesterone only contraceptive pill, however, I came off that just over a year later. I now take Amitriptyline for my fibromyalgia and various painkillers for my endometriosis pain.

What does EMLWY stand for?

I often refer to this blog as EMLWY - it simply stands for "Endometriosis: my life with you".

Can I share your posts?
Yes! Of course! It goes without saying that I write this blog to raise awareness so any and everything on here can be shared to do just that. However, I do ask that you credit me whenever you share something. I have noticed things I've written being used by others as their own work and although I'm happy with the content to be shared, I have put a lot of time and effort in to this blog and I don't want it to just be ripped off!

Can I share my story on EMLWY?

Yes! I try and publish fellow endo sisters stories of life with endometriosis as often as possible because I feel it's important to share all the different aspects of this disease that we experience. If you are interested in sharing your story then please email me at shireen.emlwy.gmail.com along with a photo. If you do not wish to share your name then I am happy to keep the post anonymous for you. You can read other endo sister's stories in the My Story section.

I do not pay for stories. I have been asked this in the past and, as you can tell if you read the blog, I am out of work myself so my financial situation is less than desirable.


I'm interested in guest writing for EMLWY - would you be interested?

Yes! Obviously, it has to be in regards to endometriosis, but if you are interested in guesting then please contact me.

How can I contact you?

Head on over to the Contact page or click on the buttons to the left. 

17 comments:

  1. I'm so glad I stumbled upon your instagram and it led me here
    I too have been suffering with Endometriosis, my symptoms started when I was about 14 but went un-diagnosed until I was 23 :(

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    1. I'm glad that you have found it of some use my love. xx

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  2. Just stumbled across this from the comments section of endohope. I love what I've seen of your blog so far and I'm looking forward to reading the archives! I'm all for raising awareness, one blog at a time :).

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  3. Thank you for sharing your story, I know that it isn't an easy thing to do. Your blog as been interesting and inspiring to me the past couple months. I was just recently diagnosed with Endometriosis and it is nice to be able to read about other women who are going through it and not feel quite so alone in such a lonely disease. Thank you.

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  4. Just found you. I have endo too and I have a feeling I may be stopping by here pretty regularly. Great blog.

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  5. Hi - just found your blog through a google search and was floored to see you mention Melton in your latest post! I'm assuming its Melton Mowbray? I was born there and am now living in Canada! I was diagnosed with Endo last year during lots of infertiliy testing after a miscarriage - I've resurrected my blog to talk about all sorts of things but endo will definately be one of them - I'm so angry at how little is known and done about this awful condition - is it ok if I link to your blog from mine?
    Hayleyx
    areyoushaw.blogspot.ca

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  6. Thanks so much for doing this! It is important than many people realize that this disease is horrible!!! I am 43 and have been dealing with it since I was about 14. 2 months ago I got a total hysterectomy, every female organ is gone, but I still have endo!I am so frustrated and discouraged and sometimes feel so alone and depressed and your blog and others like it help me realize that I'm not alone :) Thank-you and God bless you on this journey.

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  7. I'm an endo-sister - all doctors told me that I have less than 7% chance of getting pregnant even with IVF. Doctors told me my hormonal level was too low for a pregnancy, I needed a third surgery even before I could think about IVF. I cried my eyes out for years. Then one day I did get pregnant completely naturally. My OBGYN called my baby 'miracle baby' and said this pregnancy 'shouldn't have happened'. I'd like to share our story and give hope to other women. You just never know, you never know... thanks for sharing your story!

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  8. I just stumbled upon your page due to the acne segment. I'm 25 from Canada and have been 'diagnosed' with Endometriosis - When I was 21 or 22. I've never had the surgery to verify - which is fine,I guess that's a very last resort. But I think it's silly to have it anyway, kind of. Let me explain...I have had surgery (laproscopically) in the past for something else. They say endo can form on the inside of surgery scarring..so if they need to cut you open to find it, and find nothing, when they sew you up again - you still have a chance of getting it! Man!! Anyway, like I said, I came on here to seek advice or anything on acne reaction. The way I'm being treated is by taking birth control (high in progesterone) daily - to keep any period from coming at all - though that does not happen - I think I'm superwoman...my body beats all drugs :S...In the past year or more, I've suffered from cystic acne. Never had this issue before and people/docs/pharmacists are firmly believing it's due to the birth control I take. (which I've switched now 3 times since 2009) I just can't seem to control it no matter what I do. I'm honestly thinking the period pains and the like would be easier to swallow than dealing with this every day of my life...even my little niece asked what was wrong with my face...poor thing, she didn't know. Anyway. Does anyone suffer from this, have any advice or solutions...or any other ideas for treatment? Thank you.
    I'm so desperate.

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    1. Hi
      Just saw your post and although I don't have endometriosis, I have had cystic acne for the past 6 years. I had no issues until I was 23. I dont know what happened, I had been taking the same birth control pill for several years. Since then it has, like yours, been treated with different high progestorone pills. So far, the only one that has been successful has been Dianette. However my GPs have advised that this is not a long term solution. They take me off it every six months or so, and every time it comes back, worse than before, leaving more scarring behind. I have been shouted at in the street and had friends, family and strangers make rude and hurtful comments. There are other people suffering exactly the same and understand how it can completely destroy your self confidence and make you just want to withdraw from the world.
      One thing I would warn you about, last year, as an alternative to Dianette, they put me on a pill called Yasmin. The side effects happened so gradually I didnt associate them with the pill for about a year (I was just happy my skin was under control!). I slowly became more and more anxious, then depressed. After 8 months I had lost over a stone, and any interest in life. I cancelled my wedding to my boyfriend of 12 years and was becoming suicidal. My GPs response was to prescribe anti-depressants, none of which worked. Eventually I put two and two together and came off Yasmin. I was instantly back to my old self. I think doctors seem to be ignorant as to the side effects of these tablets. Noone ever linked the two.
      So although I know how terrible living with cystic acne can be, please be careful that by trying to treat it you don't make things worse for yourself
      I really hope things get better for you xxx

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  9. Hi Shireen, just wanted to say thanks for your blog. It's such an inspiration/encouragement! I was diagnosed with endo about eight months ago, and since my first lap procedure for it, I've had to give up work, am struggling to complete my thesis for university and my long-term boyfriend of three years - we were planning on getting married soon - is suddenly not so sure about the future of our relationship. IT's been such a long, lonely journey but your blog makes me realise it's not just me. So thank you again xoxo

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  10. Heyy Shireen! I love your blog - hits close to home. I've added your blog to my new website :) Hopefully it'll get you some more traffic and that we will be able to help out more women out there.

    http://www.yourendometriosis.com/

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    1. Thanks Nikko! I couldn't find your website - have you taken it down now? :/

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  11. Greetings Shireen: Wanted to let you know that the Endometriosis Association in Wisconsin offers a myriad of resources to women and families suffering with this disease. Please check out endometriosisassn.org at your convenience. Regards.

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    1. Thanks - I've actually had you linked in the endometriosis library for some time! :)

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  12. Hi Shireen! I just found your blog! I was diagnosed via HSG test/as a result of my symptoms with Endo (although apparently laparoscopy is required for a sure diagnosis) about a year ago. I had hoped it wasn't really Endo, but another doctor opinion last week helped me to accept it. I appreciate reading your thoughts on the struggle of having it, especially the emotions. I haven't had a chance to read extensively on your blog yet, but I'm currently trying to go the natural route since I'm pretty tired of being poked and prodded by the medical field. My dr surprisingly referred me to a accupuncturist. A year ago, I would have laughed that off, but I'm currently set to try it out. Trying in small ways to get my body back. By the way, I've apparently had this going on for awhile and I did get pregnant-- it can happen! However, now I have had secondary infertility for almost three years. After two years it was the right timing for our family to pursue adoption, which strangely has lightened the load for the emotions of the dreaded negative pregnancy test. I won't say baby shower invites aren't still hard to receive, but moving forward in some way takes the sting out of it a little, somehow. Blessings to you as your travel this hard road. From the USA and warmly, -S.

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    1. Thank you so much for your comments and I'm so sorry for such a late reply. I'm just getting back in to things after such a long break! I'm really sorry to hear you have faced secondary infertility but I hope the adoption route has worked and you've found some happiness there. Surgery is the only way to diagnose endometriosis so I'm wondering if you have had surgery now? Sending love your way and thank you for your support. It was a very difficult time but we finally got our perfect little gift. xx

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