Have your say! Help me make our voices heard!

Hi all,

As you all I am a fellow endo sufferer, and have been for the past two years. After a failed lap in the UK where I was completely messed around by doctors, I've had a successful one in Austria in April where they discovered that I was stage 3. A routine operation which shouldn't have taken longer than 1 hour ended up taking 3 hours while they cut everything out. Knowing that I will have to endure many more operations in my life and being fed up of not being taken serious and there not being enough awareness, I have started working on a project.

I am a digital journalist in the making at Goldsmiths University and I want to create a website with stats and information and most importantly also some opinions and stories of REAL women! If you are interested in helping me create more awareness for endometriosis sufferers, please get in touch! My email is digijournostudent(at)gmail(dot)com . Or message me on here.

I know how horrible and isolating it can be, because no one knows what you even have and I would like to change that.

Thank you!

5 Replies

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  • This makes me so happy that somebody, somewhere is trying to raise awareness because myself, I wouldn't know where to start but definitely desperate for people out there to understand even a little bit what we suffer.

    I've suffered from stage 4 endometriosis now for a year. I had my lap- two months ago where they failed to remove my endometriosis and just removed the 7cm dermoid cyst from my right ovary which had started to grow teeth and hair, rather than it being the 3cm simple cyst that they diagnosed me with. This frustrated me so much as they told me my cyst was under guidelines to operate on and the reason for my lap- was for a full diagnosis of endo. I went in to the the operation (scared) but with a mindset of "it will be worth it, I'll wake up with less endo which therefore means less pain and back to work" wrong. I awoke to find out I'd need yet more surgery to unstick my bowels from my womb as my left ovary was trapped in between which meant they didn't remove the endo either. I was in theatre over 3 hours, for a cyst. Unfortunately, when I woke up my stitches split so the liquid they'd just put inside me during my op, ended up on the floor. My nurse casually just stuck a plaster over it and told me it was better out than in and sent me home as it was only day surgery I was in for. A week later I was rushed back in to hospital with a build up of fluid and internal bleeding just above the ovary that had just been operated on. I bled for a full 2 months after my operation and have recently just stopped again after giving myself a break on the pill that I've taken back to back for the past 6 months. I am now on monthly stomach injections to thinner the lining of my womb so I don't bleed as much and in the meantime, I need to think about further surgery. I find this SO frustrating as I've already been off work for a year and I just don't see any end in sight. I'm a 20 year old girl and for me, getting my career sorted is important to me and I can't even do that because my life is at a stand still. Non of my friends and family understand the physical and psychological problems it causes and I keep asking myself why me. It's such a long, draining process and I feel like whenever I have an appointment whether that being with my GP or at hospital, that non of them really understand and they all tell me different things just so they can get rid of me. Non of these "professionals" understand the extreme of the pain. Most months I am rushed in to A&E on gas and air and morphine, SCREAMING as if I am in actual labour. I could never fully describe the extent of the pain as it is literally indescribable. I feel so alone and neglected as my friends don't have any sympathy whatsoever as they just think it's bad period cramps when in actual fact, for me it's a life changing condition that some days I don't think I can go on with any longer (dramatic, but true). I'm petrified I won't be able to have children as it is my dream to have 2. I just pray that eventually enough awareness will be alerted and people will finally begin to understand the extremes endo sufferers have to go through as before all this happened to me, I'd never heard of it myself which speaks volumes as I went to college studying nursing. I basically just feel like people make out that I'm being a hypochondriac and endo isn't all that serious, I think everyone on this page can agree with me it is!!! It stops me from doing day to day activities and I just feel like I've got this condition forever, how will it ever get better? I wrote my full story on here yesterday where I go in to more detail if you want to check that out. Thank you so much for this, I hope you're successful in your project and if I can help in any way, I'd be more than happy to!

  • Hi, it's fantastic you're trying to raise awareness, I am keen to myself, but am also at a loss as to where to begin other than get friends to do sponsored challenges and donate to endo UK. I will send you an email with my story so far.

    Lucy, you have totally summed up how I feel and also had similar experience last week.

    I too had a laparoscopy and when I came out of recovery, was bleeding all over gown and bed. The nurse also said better out than in and put a plaster on it. I am in horrific pain at the moment.

    What really stood out in your message was that you said your dermoid cyst had grown teeth and hair? I've never heard of such a thing, but like you had never heard of endo before. Is this usual for a dermoid cyst?

    My thoughts are with you both and everyone suffering today and everyday. This disease is horrendous and the pain unbearable.

  • That's the only suggestion I have, to fundraise money to go towards endo UK. Yes! Please do, my email address is lucy.byrne@hotmail.com

    I was a little bit wary about joining up to this support group as the thought of thousands of women suffering the same condition as me upset me massively, but I've given it a try and it's actually made me see things in a different light. If I can help anyone in any way, I will and that's the main reason I'm on here to share my experiences and to help others as I'm sure you can agree, it gets very overwhelming and scary at times. It's refreshing hearing advice off someone who KNOWS what you're going through.

    I'm considering waiting to have my 2nd lap- to remove the endo when I'm in more of a suitable position to think about trying to conceive as I were told the best time to try for a baby was after the operation.

    I'd never heard of teeth and hair on a cyst before either, I was mortified when my surgeon told me but I think because my cyst was neglected for so long, it had turned nasty. I've googled images and it's not a pretty sight. They sent it off for testing but results came back fine.

    It disgusted me how easily the nurse dismissed my stitches splitting open, the scar I have now is a mess! I literally felt like I was just a bed number to them instead of actually being cared for.

    I just wish people knew a bit more about it as endo sufferers don't get the sympathy they deserve. My boss has been totally unfair about the whole situation and is close to sacking me. Very inconsiderate if you ask me!

  • Hi you two! Thank you so much for responding to my appeal for help in trying to raise awareness. Lucy, I am going to email you very shortly, and I believe that halfpint has already emailed me (currently writing your reply).

    I am so sorry to hear your story Lucy, and while mine was not as horrific, I know what you mean with not being listened to by doctors and being isolated and made felt like a hypochondriac by absolutely everyone.

    Thank you so so much for wanting to help me!

  • Hi Nina94

    I would very much like to help with raising awareness about endometriosis. I have been thinking about this quite a bit over the last few months and have a few ideas. I think the website idea is a really really great one. I feel so angry reading some of the stories on here about women being fobbed off or their pain and symptoms not being taken seriously, especially young people. I think we need to raise awareness amongst GPs and nurses, as well as teachers in schools and employers.

    I was diagnosed with endometriosis in 2001 after suffering symptoms almost since puberty. I have had about 14 surgeries, including a bowel resection due to complications and had a colostomy for 6 months. Not surprisingly, I now suffer pelviv pain from adhesions due to the multiple surgeries.

    I will send you a message.

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