Long time suffering

Hi there, I've been suffering with endometriosis for over 10 years. I suffer with extreme pain in my lower back and bowl with blood and of course the knife stabbing pain in my lower abdomen, which causes me to be sick. I also suffer with fatigue and mild depression. After finally meeting 'the one' we would like to have a baby and my endometriosis is causing me to be infertile. I currently have cysts on both ovaries which need to be removed and I'm on morphine for the constant pain in my back. I've recently had an episode of extreme pain on the left hand side of my tummy, abdominal area and blood in the lower back where I found myself in A&E throwing up blood. I'm waiting for an appointment for a laparoscopy to determine the severity of my endometriosis and removal of cysts. Can anyone out there relate to my ongoing painful experienceson? Feel as if no-one is taking me seriously!! ;/

8 Replies

  • Excuse some of the grammar, predictive writing

  • Hey! My symptoms are not as severe as yours but I have been in bed for the last 24 hours in agony so I can certainly empathise. I have endo on my fallopian tube & had a lap to remove 2 chocolate cysts. I have been ttc for 18 months & am 3 months into a 6 month Clomid cycle to make me ovulate. Have you been referred to a fertility specialist at all? My endo is v painful but all checks for fertility issues showed everything was clear except that I wasn't ovulating. That's been resolved with the Clomid but we are still not pregnant yet! It's so frustrating isn't it!

    I really hope you have the lap soon & that it makes you feel better. Xx

  • Yes yes and yes I'm suffering with lower back pain at the mo but also get the stabbing nausea constipation blood and mucas in stools! I have been battling with the doctors for 2 years but I have finally found one who actually listened to me and is now requested a colonoscopy and endoscopy to rule out other problems! I'm also awaiting a pelvic MRI scan!! So hopefully I'll get some results. Xx

    Good luck to you all. Xx

  • You're symtoms sound the same as mine,keep on at docs until you get the scans you need.i had a major op about 4months ago to remove endo and also had to have part of my bowel removed as the endo had penetrated the bowel.im still in pain and laid up in bed at least 4hours every day,no one took me seriously at first and I believe if they had I would not have had part of my bowel removed,I'm am now in the offical complaints process. X

  • I hope you've had the results you need..Good luck with your journey xx

  • I feel for you, I really do. Hopefully after your op you will start to feel some sort of relief. I know that cysts can make you feel awful and cause tremendous amounts of pain, so hopefully when they're gone you'll see a difference. It's so frustrating when you feel no one is taking you seriously - I had so much of this - but hang in there and keep fighting. You know your body better than anyone and keep fighting for it until you feel better. Good luck xx

  • Hi

    I am having a terrible time as well and I feel for you. Luckily for me I have a history of ulcerative colitis and had bowel removed as a child so when I see they doctor regarding pain or something new they do listen! I realise I am in the minority on that front!!

    We talk on here about relieving our symptoms by diet, exercise, medication, supplements etc. these do have a good effect, I take Epsom salt baths now also three times a week which does really help also!

    What I wanted to say though is that we, and I am speaking for me mainly but I imagine most of us too if I may be so bold, are so constantly focused on this awful disease we forget the world around us, bear with me I am going somewhere with this. I find managing to get out and walk with my dog, through a park or luckily for me, fields, extremely uplifting to the spirits which has a knock on effect on my body, I'm no hippy but the other day I actually stopped and listened to the birds, looked at the crazy mushrooms growing and the beautiful trees and just lost myself in the beauty of our surroundings, and I actually forgot about the pain for half an hour! My goal is to try and do this a few times a week as I am able and just let myself enjoy life for a wee while, and see what we are all fighting for. I am sure this positive ness feeds through to my body and strengthens it.

    Try it if you can, we are unfortunately so focused on the pain lose this, and I for one want to be master of this not let it master me!

    Hope my rambling so made sense, see what I did there, ramblings... ? Hee hee.

    Here's to a pain free half hour for all of us.

    Maybe I am a bit of a hippy after all....

    Lots of love

    Steph x

  • Thank you for your lovely message...I completely agree with everything you've said. I am now relatively pain free after my op in September '15 and am now focused on making myself feel good and enjoying life. Just need to sort out my fertility now...big love to you xxxx

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