sometimes this disease is so isolating, people dont understand, they read a bit and think its not that bad, they dont know what its like

to suffer pain daily, to have it control your life. I have experienced family tell me to " get over it", prior to diagnosis I was made to feel like a hypochondriac both from my doctor and from my husband, since diagnosis my doc is lost but at least hubby does his best but still its lonely. I have been off work 7 months and being home all the time isnt good for you. It breaks my heart sometimes when I read the posts but I just want to say thank you to you all for always being there when I need advice or just someone to understand. I wonder if I will ever get my life back, if any of us truly will, We live in hope xxx

5 Replies

  • No I don't think we can all get out lives back to what they once were. Not unless really lucky and only with a minimal case of endo.

    It's really a case of making the most of what we are capable of doing within our new limitations.

    Fatigue is the biggest issue that I have. That for me is the most limiting factor, closely followed by the lack of short term memory I was left with from Zoladex.

    My pains are manageable with pain relief, bleeding is under control of mirena, but there's no wonder drug to give me my memory function back or stop the fatigue.

  • Hi Vonie,

    I understand at least a bit where you're at. In 2012 after years of varying degrees of pain and two years of constant agony every day my body had enough and I was off work for 3 months. It was very isolating as I live 200 miles from my family and my boyfriend works away during the week. Although I work and live in a small community people have their own lives and again a lack of understanding of the disease also meant that many of my colleagues thought I was 'at it' despite in my previous 4 years in this job never taking any time off and teaching classes when I should have been at home. When all I wanted to do was scream in agony or cry from sheer frustration. I took so much of what I was feeling out on my boyfriend but somehow he stayed by my side and cared for me.

    I am very thankful and relieved to say that at the moment my health is relatively good. My only real ilssues are severe pain about 3 days a month and some horrible mood swings for about the same time.

    I just wanted to let you know that I honestly thought at that point in my life that this disease would never leave me alone or give me a break and to be honest I wanted to die. I just couldn't see the point. I had just turned 30 and my life as I knew it was just passing me by with barely anyone to notice or care that I couldn't do even the job I loved because of this disease never mind socialise or travel or any of the other things I wanted to do.

    Please don't give up hope. It's very easy for me to say sitting on the other side of where you are but hope is often all we have with this disease. My life now is so different from then and I hope very much that you are able to find a solution.

    Is changing GP a possibility? Prostap injections were what worked for me eventually although the first 3 months were awful. I don't know if yu have maybe tried that already?I had tried pills femodene and microgynon, mirena coil defemanic acid and all sorts before the prostap but I kno it doesn't agree with everyone.

    I wish you all the best and send a huge hug.


  • Hi ladies, I have just been diagnosed with this a month ago and can totally empathise with these comments, most days I want to die because the pain is so bad and it just goes on and on and on. It is living torture, I really feel so lost and alone. People try to understand but I feel like a different person than the girl I was before the pain started eight months ago. I was self employed, had the brightest social life out of all my friends and now I just live in my onesie and cry all the time and wait for time to go to bed to escape the pain. I just feel like I can't cope. I am having a coil fitted soon I hope and hope it will help or I just think I will give up. I have no life left anyway. It is a disgusting way to talk and I'm ashamed but I feel the real me died the day the pain took over, do you ever feel like that? xx

  • Vonie, so sorry you feel this way. I know its a terrible thing to deal with. Doctors, of all people, shouldnt make their patient feel like a fraud, but I had years of the same experience until I finally got a diagnosis. Ive also had years of living with the pain without knowing what it was and just feeling like I had to 'get on with it' as I was always lead to believe it was just 'bad women's problems''!. I still do as much as I can, both at work and socially, but now I am learning to accept my limitations and rest as much as I can inbetween everything else. I've also found Prostap worked for me - I was on it last year for 6 months and I can honestly say it was the best 6 months (physically) Ive had as an adult - no pain, no periods! Ive just had another injection and am going to try 12 months this time, with HRT. But as LAB82 says, its not for everyone. All I can offer is sympathy and keep trying and pestering your gynae until you find something that works for you.

  • Just wanted to say my prostap months and the 8 months of being period free that followed were also the best of my adult life physically too. I had more energy, no pain. It was amazing. At the moment my body is holding its own but am keeping a prescription for prostap 'in reserve'.

    Like I say ladies I've been there woth the tjoughtthat there is no point any more. It's horrendous. I wish there was domething we could do to make people umderstand. Xxx

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