Living with Endometriosis ~ My Personal Journey

  1. In June 2011 I was diagnosed with Stage 4 Endometriosis, however I have had symptoms of endometriosis since I was 14years old
  2. I was diagnosed through emergency surgery where they removed a 9cm endometriosis cyst and my left ovary
  3. Within 15 months of surgery and 3 different treatments to slow down the regrowth of endometriosis, I have developed a further 2 endometriosis cysts and waiting for further surgery
  4. Endometriosis is a hidden disease and I live with this every single day
  5. Every day I have suffer with Chronic pelvic pain, back pain, nausea and chronic fatigue
  6. I have had to change and adjust my life is Learning to live with Endometriosis
  7. Every morning my body feels like it has been in a fight, taking me 2 hours to get my pain under control to start my day
  8. My best friend is my hot water bottle, I couldn’t live without it
  9. Every night my body id ready to give in, yet when I go to bed  I struggle to sleep due to Insomnia, endo pain and night sweats
  10. Every day I take, co-codamol, ibuprofen, oromorph, metoclopramide, and  buscopan
  11. My illness is invisible but at times frustrates me as people are unable to see there is anything wrong, but I prefer this to be invisible so my support network do not see the real hurt
  12. I know everything about my condition as it affects me, it doesn’t mean I am an expert or that I have come to terms with it, I have just done my research to understand my illness
  13. The hardest thing I find difficult is that there is no cure and this is permanent condition which effects my future
  14. It hurts to know that the chance of having my own child will always be a fight and if it happens it will be a miracle
  15. There are no advertisements about Endometriosis, yet it affects approx. 175 million women worldwide.  It is only recently that this condition has been mentioned of Casualty and Embarrassing bodies even if this wasn’t 100% factual but it’s a start
  16. One day I would like to feel ‘normal’ again and live a day without out Endometriosis pain
  17. My illness has made me stronger and not to take life for granted
  18. I am so grateful for my support network, if it wasn’t for you all I would not get through the bad times
  19. My partner is the strongest person I know; he is with me through thick and thin and never gives up. He always picks me up off the floor when I need it. Nothing is too much for him and he never complains. He is positive and walks this journey with me, every step of the way
  20. The hardest thing I find is the fight with health practitioners to take me serious when I need their help. It angers me that still in this day and age that I am made to feel that what I am feeling is in my head and not as bad as I make it out to be ………. My question is “Do you have endometriosis”?
  21. My illness is not life threatening, however it is debilitating and has taking away the one thing every women is born able to do which is to create a life
  22. There are many things that I hate about my illness, even thou it is invisible, the midline incision scar on my stomach area is a constant reminder of the day I was diagnosed and the impact endometriosis has on my life
  23. I share my thoughts, story, journey with others not for sympathy vote but to raise awareness and knowledge of this illness. When someone is diagnosed with this illness they will not feel alone and know there are others out there who support each other. I thank all my Endosisters across the world who share their feelings, thoughts, journeys  and unconditional support to each other no matter what
  24. I will keep fighting, I will stay strong, I will not give up hope that one day a cause and hopefully a cure will be found
  25. Knowing you have taking the time to read this makes me feel that I will never be alone

6 Comment(s)

  1. crazyinpink

    October 8, 2012 at 7:46 pm

    I can’t help but identify with so much of what you’ve said here. No 15 made me roll my eyes, I was so excited when I heard there was an endo storyline on Casualty. I told my friends and advertised the episode on facebook but ended up ridiculously embarrassed with the over-the-top plot. I was expecting a typical recurring pain patient who finally got someone to listen to her (if only we lived in a perfect world, eh?).

    You’re totally right. This condition changes us but sometimes for the better. Keep fighting 🙂



    • Hughffy

      October 8, 2012 at 8:09 pm

      I agree with you on the Casualty episode, it made a joke of the condition in my opinion. Embarassing bodies also showed a patient with Endometriosis, she was complaining of sex being painful, she had a lap and everything was good again, agian making a joke of endoemtriosis. The only positives I can take from this being advertised is that endometriosis is being discussed a littel more even if not fully accurate. Endo has changed my life completely but it will not defeat me, be strong and keep on fighting too 🙂



  2. Courty

    January 9, 2013 at 1:04 am

    I have really come to learn how ignorant doctors can be. They started me on birth control at the age of 11 after having a period last over a month and for 6 years after I have been in and out for just about every major symptom of endometriosis. After a 10 hour ER visit I finally got an appointment with a surgeon and got Diagnosed at the age of 17. I am so thankful I have been able to have a laparoscopy this young, and be able to be proactive. I really look up to other women with our disease and knowing I’m not the only one who gets treated, by teachers/family/friends/doctors that my pain is in my head/doesn’t matter because its not visible. It makes me hopeful for my future that there are other women who understand what I’m going through.Thank you sooooo much for sharing and helping build awareness. You all are heroes to me ❤



  3. Jessa D

    January 24, 2014 at 6:33 am

    Wow. Reading this was like someone took a bunch of thoughts out of my head and put them on paper. It is amazing how everyone is unique but share so many similarities with this disease. Thanks for posting about it. I left my blog (http://livingwendometriosis.blogspot.com/) in my info… I’m hoping it could become where women can share directly with each other in the comments and get a direct line of communication going because I know exactly what that isolation feels like… Thanks for writing your experiences and sharing!



  4. Sarah-Jayne Tilbury

    September 27, 2014 at 10:41 am

    17th April 2015 marks the 13th anniversary of my total hysterectomy and bilateral spingoopherectomy (removal of Fallopian tubes and ovaries) and partial bowel resection, at the tender age of 27, having finally succumbed to Endometriosis, since the age of 13, which had fused my uterus, urethra, bladder, bowel, ovaries, ureters and pelvic bones together into one ‘mass’. However, my journey did not end that day. Whilst much of my pelvic pain had gone, I have continued to live with IBS as a result of endometriosis lesions on my bowel, urinary frequency and an (occasionally) embarrassingly weak pelvic floor, night sweats and hot flushes (despite HRT), weight gain, visual disturbances and nose bleeds because, believe it or not I have endometriotic spots on my retinas and in my nasal cavity!!! In addition I have 2 prolapsed discs in my spine (unrelated to my endo), however a recent MRI showed endometriosis lesions throughout my spine and attached to my ribs, which the doctors now believe accounts for the high level of lower back pain, hip and pelvic bone pain (higher that would be expected for a disc prolapse)!

    As with Andrea this is not written to gain sympathy, but to raise awareness and to be informative. It is a myth that a hysterectomy is a ‘cure’. It goes a long way to helping and significantly improved my life, but the disease and its effects still remain. I have to take oestrogen because of my age and the significant risk of osteoporosis, but that in turn activates remaining adhesions. I long ago gave up any chance or hope of conception but now at the age of 40 my mind has turned to children….and I’m considering the notion of adoption as a now single woman. A close friend of mine started a group called Angel Mums (on FB), a group for women who have lost children through miscarriage, stillbirth, SIDS or by any other means, however, she asked me if I wanted to join and share my story in honour of my ‘Angels’; the babies I hoped for but could never conceive, to provide me the opportunity to have a voice and to ‘mourn’ for my ‘lost’ little ones. April 17th will always be a tough day for me, and those near to me understand why, but many, including my ex-husband, can’t begin to understand why. They don’t understand that I mourn the loss of my womanhood, my motherhood, and the chance to choose for myself. Maybe I would have chosen never to have children, but this disease meant I never had the choice.

    To my endo sisters everywhere, stay strong, stay positive and don’t keep silent, tell your story, raise awareness and fight the good fight xxxxxx Blessings to you all, but especially to Andrea for continuing to bravely share her story for the benefit of others xxxxxxxx



    • Hughffy

      September 27, 2014 at 2:01 pm

      Thanks Sarah-Jayne for sharing your journey, I too made the hardest and best decision 7yrs ago to close the doors on my 10yr marriage, it is not the easiest step to take but once over that initial bereavement stage I took control and owned my life which I have never looked back. I will never regret that chapter in my life as it has helped shape me for who I am. The strength to go it alone and rebuild a new life was uplifting and to this day my own personal achievement which I owned. You are a strong and aspiring individual who will go on to build a bigger and brighter life than you will ever imagine xx



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