I don't post often, I will answer questions but actually saying how I'm feeling I have stopped because nobody wants to hear it. Years of severe pain have taken their toll, I used to be so different and sometimes think that I deserve this life because I used to hear other people talk about pain and tell them to just do their best or hear people talk about depression and think just pull yourself together and get on with it. I took for granted the blessings of good health. I wonder sometimes at the person I was, I thought I was a pretty decent individual living a normal life but now I realise I was complacent and self centred. Almost 7 years of severe pain that never goes away, of poor sleep and chronic fatigue have changed me, in some ways for the better-I am far less judgemental. The changes are not all good though, I have learnt the hard way that depression and just feeling a bit down are not the same things. That not all problems have a solution and telling myself other people cope who are worse than me is not as motivating as it once was. My marriage wasn't based on sex but its so painful I just can't and the lack of intimacy for years has it's impact. Yes we can kiss and cuddle but it's not the same. I am medically retired and my sense of self worth is seriously diminished. My mobility is poor and chronic fatigue means I get exhausted quickly- the long term effect is that friends don't invite me places anymore and people I thought would be in my life forever I go years without getting so much as a text from- the whole out of sight out of mind thing. My bladder as well as much of my insides is a mess with endo and at 44 I am incontinent- have been for years now, it's humiliating. I need morphine on top of tramadol and gabapentin and naproxen just to tidy up and then will pay for it the next couple of days. I am not living. The world is talking about the mental health effect of isolation due to covid19 and the financial impact that is causing problems for so many. I live in a flat, I haven't felt the sunshine for I don't know how long and I am being literal not metaphorical. How long do I just keep existing for the sake of those I love. The truth is longer term my husband and son may actually do better without the worry of looking after me. Yes maybe I am just feeling sorry for myself but as the world opens up and people get out and see friends and go to work I will be locked here in my prison. I am sending this out into the ether because I could never actually say any of it to those I love. Time to put the smile back on x
Struggling today: I don't post often, I... - Endometriosis UK
Struggling today
I am so sorry you have been going through this. I recently had mild depression and understood what it means. I became more sympathetic to people also. I stopped sharing my pains with people and explain my fatigue. I am saying that because you are not alone in your experience. I do not have pains that you do by far. And my heart was aching when I read your post. On the top of my endo, which is not endo but endosalpingiosis, I have blood disorder, ITP which sends me to bed now and then with exhaustion coming from nowhere. I wake up each morning and thankful that I am not in the hospital or sometimes that I am alive. I cannot do activities that I like and be careless now. I still do not know why I got these two diseases. But if you go thinking this way, it will make you only depressed more. I believe all members of this chat have issues with sex to different extend and completely understand you. Share your thoughts and feelings when you feel like it, do not lock in. Maybe tomorrow new treatment will be discovered, which will work for you. Hang in there and if you get sunshine through the window, it is still sunshine. Smile to it and believe that you will be able to find some treatment that works better for you than what you have now.
Thank you all for your kind words, I am actually crying as I read them. Its hard to believe pain is worse today but I have taken morphine which is my last resort so hopefully it will ease off. My heart aches for all of you but I know you are out there struggling too. I am so grateful for this site, I couldn't bare the isolation without all of you. It's so easy to get lost in despair when every day is a repeat of the one before and nothing gets better no matter how hard I try. I do realise that pain affect my mood, days like these I feel useless-a burden on my family and I hate it. I see the worry and fear in my sons face and knowing I am the cause is hard. Like many of you I have massive complications medically and have come very close to losing my life a few times. I am in the midst of a run of bad days, they happen sometimes and leave me bedbound but they will pass and I know I will have good days again. I thank you again and again for your support x
I am copying this to each of you that has responded to my message because I don't know if you will see it otherwise and it matters to me that you know how much you have helped me xxx
Thank you for writing this post! It seems only other Endo suffers truely understand each others pain and I am so thankful for finding this group.
I'm so sorry you're struggling right now. Due to the pandemic like many my hospital appointment was cancelled, so now I will have been waiting 10 months to even start discussions on my treatment, if this appointment doesnt get cancelled, since my scan. My sex life is non-existent due to the pain and I've not even hit my 40s yet 😳. Thankfully my fiance is understanding but it isn't the same. I can't make that right. I have to just stay positive and keep doing all I can to help myself. Noone understands what my condition is when I try to explain, and honestly I just wish for my old life back. But I can't let it win. And neither should you. Appreciate the little things. Look for the positives and decide to find ways to be happy. ☀️ We deserve much better than this. Find it in yourself to do all you can to thrive. We are stronger than others as we fight this battle every day 💪Stay strong 💪 .
Feel free to message me xx
xMissMx
Thank you for your words of support, sometimes its a relief just to be honest for a while. I pray you get help to make your life more than just bearable when you do finally get your appointment xxx
Thank you all for your kind words, I am actually crying as I read them. Its hard to believe pain is worse today but I have taken morphine which is my last resort so hopefully it will ease off. My heart aches for all of you but I know you are out there struggling too. I am so grateful for this site, I couldn't bare the isolation without all of you. It's so easy to get lost in despair when every day is a repeat of the one before and nothing gets better no matter how hard I try. I do realise that pain affect my mood, days like these I feel useless-a burden on my family and I hate it. I see the worry and fear in my sons face and knowing I am the cause is hard. Like many of you I have massive complications medically and have come very close to losing my life a few times. I am in the midst of a run of bad days, they happen sometimes and leave me bedbound but they will pass and I know I will have good days again. I thank you again and again for your support x
I am copying this to each of you that has responded to my message because I don't know if you will see it otherwise and it matters to me that you know how much you have helped me xxx
I don't think anyone can really appreciate mental health conditions or chronic pain without experiencing them. There is a difference between hearing about it and going through it.
I've suffered with my mental health on and off for years before I had my worst downfall which I never really recovered from. Through trial and error I've learned things that can make it more bearable, but I have good and bad days. So I understand what it is like to experience depression, as well as other mental health conditions, on different levels. Please don't give upon yourself. Not every day of your life is the same, but every day you matter to someone who loves you. Tomorrow could be a better one.
When I was younger I experienced physical pain. A back injury. A knee condition that caused me to suffer flare-up and injuries. A few surgeries that required recovery. I thought of myself as having a high pain threshold and it being a matter of just pushing through.
My outlook drastically changed when I learned what it is actually like to experience chronic pain. There are days that nothing seems to curb it. Not a tens machine, not packing myself with heat bags, not prescription pain medication, stretching, physical therapy, etc. Some days I can't even watch the simplest TV show because the pain consumes everything about me. I just contort my body trying to find that one position that I can tolerate somewhat. Other days I can manage my pain levels enough that I can do things. But never much. The fatigue doesn't allow it. This is nothing like the person I was or the life I use to live. So now I, like you, understand what it is like to live with chronic pain. We don't deserve it. But bad things don't just happen to bad people.
We can't help misunderstanding something because we haven't experienced it - especially when experience is the only way to truly understand it. Try to forgive yourself for your presviously uneducated outlook. Easier said than done, but work on it. We are all human. None of us ever get it all right. Recognising our mistakes and owning up to them is a big part of growing.
I am sorry that you are struggling. I do hear you and you do matter.
Thank you all for your kind words, I am actually crying as I read them. Its hard to believe pain is worse today but I have taken morphine which is my last resort so hopefully it will ease off. My heart aches for all of you but I know you are out there struggling too. I am so grateful for this site, I couldn't bare the isolation without all of you. It's so easy to get lost in despair when every day is a repeat of the one before and nothing gets better no matter how hard I try. I do realise that pain affect my mood, days like these I feel useless-a burden on my family and I hate it. I see the worry and fear in my sons face and knowing I am the cause is hard. Like many of you I have massive complications medically and have come very close to losing my life a few times. I am in the midst of a run of bad days, they happen sometimes and leave me bedbound but they will pass and I know I will have good days again. I thank you again and again for your support x
I am copying this to each of you that has responded to my message because I don't know if you will see it otherwise and it matters to me that you know how much you have helped me xxx
💓 i see you and I understand you!
Thank you all for your kind words, I am actually crying as I read them. Its hard to believe pain is worse today but I have taken morphine which is my last resort so hopefully it will ease off. My heart aches for all of you but I know you are out there struggling too. I am so grateful for this site, I couldn't bare the isolation without all of you. It's so easy to get lost in despair when every day is a repeat of the one before and nothing gets better no matter how hard I try. I do realise that pain affect my mood, days like these I feel useless-a burden on my family and I hate it. I see the worry and fear in my sons face and knowing I am the cause is hard. Like many of you I have massive complications medically and have come very close to losing my life a few times. I am in the midst of a run of bad days, they happen sometimes and leave me bedbound but they will pass and I know I will have good days again. I thank you again and again for your support x
I am copying this to each of you that has responded to my message because I don't know if you will see it otherwise and it matters to me that you know how much you have helped me xxx
You’re not alone, be strong xxxx
How are you feeling today?
I really really really hope you feel better and you get some relief!
Thank you all for your kind words, I am actually crying as I read them. Its hard to believe pain is worse today but I have taken morphine which is my last resort so hopefully it will ease off. My heart aches for all of you but I know you are out there struggling too. I am so grateful for this site, I couldn't bare the isolation without all of you. It's so easy to get lost in despair when every day is a repeat of the one before and nothing gets better no matter how hard I try. I do realise that pain affect my mood, days like these I feel useless-a burden on my family and I hate it. I see the worry and fear in my sons face and knowing I am the cause is hard. Like many of you I have massive complications medically and have come very close to losing my life a few times. I am in the midst of a run of bad days, they happen sometimes and leave me bedbound but they will pass and I know I will have good days again. I thank you again and again for your support x
I am copying this to each of you that has responded to my message because I don't know if you will see it otherwise and it matters to me that you know how much you have helped me xxx
Couldn’t read and leave. I hope now that lockdown has eased you’ve managed to get out of the flat and get some air. Are you having any surgery to help you? What is the plan long term?
Hang in there it sucks big time and you feel like you arnt believed but we all know what it’s like honest we do. Don’t think about ‘leaving’ your loved ones, because they won’t just miss you, they will never be the same again. X
Already had hysterectomy and ovaries removed, docs lasered what endo they could but my bowel is really bad and was too dangerous, there isn't anything they can do for my bladder either. I was diagnosed as severe stage 4 endo and multiple surgeons have said it's they ever saw. First attempt at hysterectomy failed as tried to do it laparoscopically and had to go private to get a surgeon to agree to open me up as all nhs docs said it was too dangerous. The surgeon who did it is a pioneer with endo treatment and world renowned and while it helped me a bit it still left me like this. I have been through pain clinic treatment plans twice and tried every alternative therapy you can think of. My insides are a mess and been told there is nothing else that can be done. My first surgery was in 2013 , my last was 2017, this is my life. I am trapped because of circumstance and because of pain, my lockdown began in 2018 when my husband took ill, I am dependant on him to get out and now he struggles just to breathe. My son is everything to me but he is autistic, has learning difficulties and also lives in pain after surgery to remove cancerous tumour. Truthfully I wish I could end on something upbeat, I used to be great at the positive sounding platitudes but there is no end date to our lockdown. I can't even get help from social services because of covid , I know wanting to swallow a bottle of pills isn't the answer, that it's depression- but it's hard to keep going like this. I hear how pathetically weak I sound , believe me I was a fighter my whole life but pain is winning. Sorry to be such a downer. This site is the only place I tell the truth, to my family I am strong and reliable mentally if not physically. I wish you the best and thank you for taking the time to message me. I would be lost without the people here x
Wow I am so sorry you are going through all this. It’s so unfair that a family can be put through so much 
I know it must be really really hard for you. But I am only a message away if you ever need a chat. Even if it’s about something random, know you are not alone, I can’t help with your medical needs but I can help with your mental ones.
Have a good day and take care
Xx Kim x
You are not weak either, far from it. Xoxo
Thank you xxx
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