Waiting for lap

Hello everyone, I'm Hayley and I'm 21 now. I first discovered the pains three years ago in May now. I kept going back to my GP trying to explain to them about my pains in my abdomen, back and legs. The "feeling knackered" all the time - having no energy and struggling to do day to day tasks, struggling to go to the toilet, even struggling to work, my troubles of my periods (they used to come once every three months and the pains are horrendous), pain during sex, the random sharp pains I keep getting in my vagina and bottom.. The list goes on, but they kept sending me away. I kept going back persistently, they kept telling me I had IBS, even I knew it wasn't.. I began to get very frustrated and upset. Eventually I saw a gynaecologist at my doctors, she had every patience and listened to me and she mentioned endometriosis. She then referred me to Macclesfield hospital to see a specialist, I've been to a few appointments now, we've spoke about my symptoms and my specialist also knows it's endometriosis. I've had an ultra sound and internal scan and this is when they discovered I had cysts on my left side of my ovaries. Now it's finally all coming together and I'm waiting for a laparoscopy. I had my pre operative assessment on the 16th December 2014, and I'm still waiting for a date. I am honestly feeling very scared and anxious although excited at the same time, so they can actually diagnose the condition.. I thought I was suffering alone until I did more research on the illness and read people talking about it, I found out so much, even symptoms I had and didn't know was related to the disease. I do have my worries for the future, as I've always wanted children, I know it's probably not worth worrying about as I'm not at that stage to start a family yet. Although it's always at the back of my mind. The pains honestly seem to be getting worse, it's effecting me physically, mentally and emotionally.. I feel I'm always going on about "feeling poorly" and "feeling tired" etc. Luckily I have an amazing boyfriend that's very supportive and understands what I'm going through. I just sometimes feel my family and work colleagues don't believe or understand the effects it has on me. Obviously endometriosis isn't visible, you suffer inside and sometimes feel your suffering alone. YOU'RE NOT ALONE! Don't suffer in silence!

3 Replies

  • Hello, I'm sorry to hear your struggling with your symptoms, but so pleased you have found a doc who will listen, I'm a lot older than you, and although when I look back over the years I've had symptoms that could of pointed to endo, I've only been suffering outside of period time for a few years, unfortunately I'm at the stage now where I get very few days amonth when I have pain free days and even them days are not normal, I get period like aches with pinched and tugging pains on top, in the back pelvic hip and groin area, I've got 3 children and when I'm bad It feels similar to labour pains, hot and pressing, I havnt been formally diagnose as yet, but the gyne doc said it sounds like endo or adenomyosis, I've got my laporoscopy on 21st March and can't wait, if they find any endo he will remove it while in there, I'm excited about finally knowing what's been going on all this time, but very worried incase nothing is found and therefore nothing can be done, and will be back to square 1, any way I'm rambling on, good luck and keep your chin up.

  • Thank you for your reply, very much appreciated! Good luck for the 21st March, I hope it all goes okay - let me know! I know it's frustrating and worrying, I understand everything you're saying. It seems like a really long process, but trust me, you'll get there - we both will eventually. I hope they find a diagnosis and a form of treatment for us, I can't wait to see the back of it. I do get my really bad days, as well as my settled days. Although unfortunately pretty much everyday I have some form of pain/niggle. It's learning to cope with it and keeping it under control, but sometimes it's impossible. Thank you again.

  • You are certainly not alone - 1 in 10 girls and women have endo and unfortunately it can take 8+ years to get a diagnosis.

    We have information on our website about how endo can affect your fertility. nzendo.org.nz/about-endomet...

    The pain associated with endo can be very debilitating although there is some very good websites re management:

    - pelvicpain.org.au/

    - aci.health.nsw.gov.au/chron...

    Good luck with your surgery

    Endometriosis NZ