My Endo story and importance of education for the next generation

How do you put into words everything you have experienced? How do you put into words the roller coaster of emotions that take place on a daily basis? To start off I’m Kayla, I’m 27 and I have suffered with Endo since I was 13. 13 was when it all started for me and I count myself lucky I wasn’t any younger unlike other women who have suffered much younger. I got my first period exactly a month after my 13th birthday, I remember it so clearly because I was the last one of my friends to get my period so I was very excited to “become a women”. I take this back now of course. My first period was I guess normal, I had cramps and I bleed for 6 days. 2 weeks later I started bleeding again, and this bleeding lasted for 6 months. I was put on various treatments very young to try maintain the bleeding or at least give me some comfort. This on and off again bleeding has been my life. I was continually at the doctors begging them to do something but it was the famous words most of you hear “ the pain and bad bleeding is all in your head and we want you to try this medication to see if this can assist you”. I was continually willing to try what was handed to me because I’d always think “ I may actually get some relief and maybe they’re right, maybe it is in my head”. At 17 I become pregnant, I was very young of course and this was very unplanned, my doctor at the time was very supportive and had said this may give me a form of relief (one of the biggest myths for me personally). I didn’t have a very good pregnancy, nor did I have a very good labour but I was lucky enough to be a mum. My undiagnosed Endo carried on after this where I bled constantly for 6 months despite more various hormone treatments. I soon moved towns and I decided at this point it was time to find a GP that would actually listen, in which I found one that finally referred me to a Gynaecologist FINALLY! I was 18 at this point and thought to myself at long last someone is going to find what is wrong with me. I was very very wrong, I was placed on Zoladex and underwent many swabs to once again no prevail, heavy painful bleeding and horrible pain between. So I was then advised to try the Mirena, for some women this is an amazing form of treatment although for me it wasn’t and I was still taking several forms of pain relief, nerve blockers and hormones, out it came and the Gynae team where I was living at the time no longer really knew what to do because I’d tried what I had though was all my avenues and I had given up any hope of finding what was wrong and just took it on the chin that this was my normal. Over these years I was very uneducated on Endo so I just carried on with my “normal”. At 22 I opted for Jadelle rods as a last resort to see if this would help, although it didn’t stop my periods it did regulate them to a 16 day cycle which strangely for me was relief! At 23 I was in a relationship which ended up being very abusive so I decided to pack my son and myself and relocate to be near my Dad. It was here that I ended up with the most AMAZING GP I could ever ask for and to this day he is still so supportive and amazing! He requested all my notes and spent his day off reading everything, I was then called in and instantly referred to Gynae, within a few months I was seen and put on a waiting list for a diagnostic Laparoscopy, I was actually excited that someone wanted to listen ! Sad truth for so many women. I had my Laparoscopy in Jan 2016 and was finally diagnosed! Although there were only small amounts and my surgeon seen no reason to excise the “superficial Endo”. Upon this it was found my right tube was completely blocked, bad scaring throughout, adhesions on my abdominal and bowel wall as well as a rather enlarged Uterus. I wasn’t diagnosed with Adenomyosis at this point. But as you can imagine as well as being angry that I went so long begging for someone to listen, I was happy that I finally had an answer to my pain ! Although my Gynae at the time felt almost like there was nothing more they could do and gave up since I had tried all avenues, so once again I was kind of left with realising this was now my life. I have spent the past few years educating myself on this condition as much as I can, not just doctor google but other resources. Fast forward to this year and this has been probably my hardest year yet, 5 hospital admissions all with more than a nights stay and loads of pain relief! Eventually I made a call to go see a specialist privately and I can not thank this guy enough, in my consultation he listened and he understood. Next week I’m finally having my endo surgery !!!! So this is where my next journey starts. My now 10 year old son was questioning why Mummy is so sore all these years. Why she’s in and out of hospital so since he was 10 I thought it was time him and I had a very serious chat. We sat down and done the whole puberty talk, but with this came a very important discussion about Endometriosis. As your probably thinking what sort of understanding could a 10 year old have? Well to tell you the truth he’s more educated about Endometriosis than anyone else I know. He understands why I’m sore, and his usual question is “ Is it your uterus, ovaries, nerves or is it those annoying cysts you get”. He understands there are days I can’t do a lot, he understands that sometimes just him snuggling up with me on the couch is enough medicine too. I have raised him alone, and though that’s had its challenges I feel there is so much importance around raising awareness and information into the next generation. It’s also sad that my son has had to grow up seeing this , but I know that as he grows older and gets a girlfriend he will understand what’s normal, what isn’t and how to care for a women when she’s having that time of month. He has also decided when he grows up he wants to be a surgeon to help women like myself. Awareness and factual information action is so important. But my biggest learning curve this year is I have learnt I have a voice, I have a voice and I’m going to use it. The way I have been let down by health professionals is not Okay, it is not okay to struggle, its not okay to love in so much pain and this is not NORMAL. For me it has been a very emotional roller coaster! Use your voice and be proud that although this journey is testing and difficult at times we really are warriors ❤️💛❤️💛❤️💛❤️💛❤️💛❤️💛❤️💛❤️💛❤️

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