Consultant says its not endo pain. But they have found a tiny bit of endo!

I'm currently have good days where I can do some things. But then after a couple of days of doing things I end up like today in agony can't move and in bed. I've been like this for a couple of days now. The pain is like someone has kicked me in my right pelvis, back, thigh and pressure in bottom and down below. I have a injection called depro to stop periods. But I've still had bad periods and brown clots in between. Lasting upto two weeks. I can be in pain even when I'm not bleeding. Does endo pain happen when there's no bleeding? Does it cause pain when doing too much physical activity? I have no energy most days and living in morphine patches which don't touch the pain on a bad day. Please excuse my writi g I'm having a painful day today. Appreciate any help. Thanks xx

9 Replies

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  • And consultant said the Depro injection should cure my pain? They gave it a day late last time. So she said next injection will work better?

  • If the endo has caused scarring and adhesion's then yes you will hurt after physical activity and when you're not bleeding, like I do :( hope you feel better soon xxx

  • I have had depro injection for nearly 12 months and it worked brilliantly for the first 4 months, then it stopped working...get all side effects but still in pain...trying to convince my gynae that it is endo pain.

  • Pain can be endo or due to adhesions (scar tissue) attaching itself to other pelvic organs. I have heard that endo can grow it's own nerve supply! I notice when my bowel or bladder is slightly full my pain is worse as I guess its all pulling, pinching if organs swell with filmy adhesions being pulled tighter and hence any inflammation or swelling is likely to hurt more. Even if your not bleeding at the time it can hurt as you build up for ovulation complicated by nerve pain.

  • I am so sorry you feel like this, I hope you have a good day soon.

    I am so fed up with doctors and consultants telling us to take pain killers try this and that then get our hopes up when it does fuck all.

    I am so sorry I can not be of much help, but I do hope you feel better soon.

    I am here if you ever want to chat.

    Kind Regards

    Emma

  • Love you ladies. Thank you for replying. I don't feel like I'm going crazy when I'm talking to you. I hate that their trying to tell me that is injection is going to work if not it must be me! Or it's not Endo. Now I know not one thing works for everyone, as everyone is different. I'm going to research more and actually challenge what they say in future. Yeah I hate it when they get my hopes up too. I didn't know Endo could grow it's own nerves. You have all helped and to know its not just all in my head really helps xxxxxx

  • I was told that I definately did not have endometriosis by one consultant based on my symptoms. Ten years later after repeatedly going back and forth to the doctors because of the pain, I had a diagnositic laproscopy. They informed me that yes, I did have endometriosis! I later found out that my symptoms were exactly in line with endometriosis.

    Although we do need medical advice, you are the only one who knows how you are feeling. They don't always get it right either!!!! A lot of my pain comes when I am not actually bleeding. Physical exercise makes it worse for me too.

    Best advice, listen to your body and be kind to it. Give yourself lots of natural healing energy where possible. I found chinese medicine and changing my diet were the only two tings that ever made any positive impact. Everyone is different and so try lots of different things to see what works best for you.

    I hope that you can get some relief from the pain and the emotional drain that it causes.

    Best wishes,

    clarken

  • Thank you Clarken for sharing your experience with me. Just shows how wrong they can get it. I've chosen to go to a private doctor. Although I can't really afford it. But my current doctors arent listening. And things carry on the way they are I lose my job. As a single parent I can't afford that. I started bleeding yesterday so must have been a build up. Although they've supposed to have stopped my periods. Xx

  • Hi all I am still in terrible pain a year after my op well I was in pain straight after to be honest I have had prostap inj for. 6 month know they want to try something else they said I had a lot of scaring. And a lot of scaring on my uterus whichis why I am in pain all the time I love this site as now I know I am not the only one going through this I have others to talk to x

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