This sounds morbid and very extreme, but I can’t remember what not being in pain feels like. My whole body aches, all the time. I have period-like cramps everyday, regardless of whether I’m actually on my period or not. I was diagnosed with costochronditis 5 months ago and that pain has been constant since.
Every time I see a doctor I tell them how much pain I’m in, that the endo pain is back after my laparoscopy and that my rib cage throbs all the time when I breathe or talk and they just hand me painkillers. They offer no help, no solution. Just more painkillers that make me fall asleep so I can’t take them when I’m in work.
I work full time and I’m lying in bed right now crying in pain and I don’t know how I can go to work tomorrow. I’m on my final warning for sickness so I have to because I can barely afford to live as it is.
I want a child so bad but my boyfriend isn’t ready and everyday my pain gets worse and worse and I don’t know how much longer I can cope with it. I want to be a normal 23 year old. I want to be able to walk long distances without feeling like I’m going to collapse, I want to be able to go out without being bed ridden for days afterwards from exhaustion. My body is a prison right now. I keep having stupid thoughts because I just can’t bare to carry on with this pain anymore. I don’t know what to do.
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I am 100% the same as you. I decided enough was enough a few months back and got in touch with my local Mind charity. They have been absolutly amazing.
Being able to speak to someone openly and frankly without feeling judged and silly.
Please give them a call/email and see what they can offer in your area.
Keep speaking on here too x you are not alone, you are strong, beautiful and brave. If getting out of bed is the best you can do some days, then pat yourself on the back for doing that because I'm not sure many others could x
Oh my goodness you poor thing, I go through moments of feeling like crap tbh this weekends an example. Please don’t think this way, you’re worth something to the world. Remember you are loved and that the people around you need you. I understand to a degree on the pain aspect (endo). I have tried acupuncture, it helped me relax and somehow I’m not in pain anymore maybe psychological? That’s me anyway and we’re all different. Sometimes we put too much pressure on ourselves. It’s like one little thing and all our insecurities tumble into one another I.e wanting a baby, sick of pain, v poorly family members, no one understands. On the good days this all disappears, almost a blur. Keep active don’t let this suck you in xx
You are not alone, keep talking. You need to seek help. Firstly, there are helplines you can call, the endo helpline is great with people who understand: endometriosis-uk.org/helpline. There are also the Samaritans who you can contact any time: samaritans.org/how-we-can-h.... Also, getting in touch with your local Mind charity as mentioned by Lj1984. There is help out there and light at the end of the tunnel. We are all here for youx
Lots and lots of gentle hugs. You aren't alone however bad it feels right now. Do please call the Samaritans if you are having suicidal thoughts or call 111 or 999 immediately if you feel unsafe.
I get such thoughts too, I've been off work for over 6 months now since before my excision but ive been left with chronic fatigue and permanent if mild to moderate pain. I start back to work on Thursday and really don't know if I can manage it. You are a super hero for keeping going as long as you have.
Have you tried trigger injections to try to reduce the ligaments inflammation? I've been offered that for my coxodynia
Forget about the future and baby plans for now and just focus on looking after you in the here and now sweetie. Ifyou feel strong enough to go back to the consultants and say you've deteriorated and push for more robust treatment.
I've never replied to anyone's post on here but you spoke to me on a level i truly relate to. I tried to reach out to my doctors on a few ocassions but more than once my anxiety got the better of me and couldn't bring myself to speak about my deep disconcerting thoughts. I feel I've managed to drag myself out of the pit of severe darkness but every now and then it rears its ugly head.
I have been diagnosed with adenomyosis and awaiting a lap to find out if I have endo as well. The pain and fatigue is soul destroying. I have gained 3 dress sizes since the chronic pain crippled me. I have managed to reduce my hours to 3 days a week but still find this difficult most days. I am also desperate for a child but have had to put plans on hold to get my body and mind in check. Believe me you are not alone in feeling this way.
If you ever feel you need someone just to console in, I am willing to listen and give as much advice as I am able within my knowledge.
I'm so sorry you are having such a horrible time, it sounds like you are going through hell and that the last few months have been really tough.
Is there anyone you can go to for a chat? And a cuddle? It sounds like you need some positive support around you. It's so frustrating when the pain just doesn't stop, pleas know you are not alone. I had warnings in my old job and the stress was horrendous, I started a new job and my pain is so much better. I never would have believed in a million years stress could have made my pain worse. Try not to push yourself too hard, have a hot bath and try to relax if you can. Living with pain is hard and takes a very VERY effing strong woman to put up with it and to reach out on here for help is brilliant. Well done you!
I hope you feel better really soon, is there anyone you can be referred to for your pain? Please try to talk to someone today and just get things off your chest if you can, sending big big hugs and happy vibes. You can do this xxxx
I am so sorry to hear you’re feeling this way. As other posters have said; you’re not alone. You can message me anytime for a chat.
Speaking to Mind is a great suggestion.
Please to see another GP within your practice ASAP. Maybe consider asking for some antidepressants? Certain types can help with pain, and can be prescribed for costochronditis. This could have the dual affect of lifting your mood and assisting with pain.
You may also want to ask for some sort of talking therapy to assist you as well. I’d MIND cant help you with this; ask the GP to make a referral.
Please speak to a GP ASAP, tell them the truth about how you’re feeling.
If they don’t help you, go to your local A&E. Don’t suffer in silence xxx
I think a lot of us were in exactly the same boat as you honey, I genuinely thought that was it for the rest of my life until I took control , just remember no pain is forever !!!! Pain DOES go away you can make it go away their are many ways and I’m not talking about pain killers I’m talking through diet , lifestyle , hormones , seeing a different surgeon and even on its own YES all this pain can go away on it’s own I know people that suffered a great deal of pain from endometriosis who changed a few things in their diet while taking the pill and it was literally gone at that point , the pain never came back 💋💋💋 it will be alright and you will look back and feel like a stronger person believe me 💋💋💋 I thought that day will never come it did come , and although I get days where my pain is back I know it is only temporary and that I am on a road to recovery xxxx
You are definitely not alone, you have almost echoed everything I have been feeling recently as well. No one has any idea how this horrible condition can make you feel, the lack of energy, fatigue, pain, aches etc etc. and to top it off, the thought of never having your own baby is soul destroying.
I really hope you're ok, keep posting on here and seek as much support as possible!
You sound just like me about 5 years ago.. at about your age exactly too infact. Heart broken because we had been married for a year and still no children, to sick to even wash the dishes, and more pain than ever before not knowing yet that I had been dealing with stage 2 Endo, and a large cyst among other things.. Please know you have SO many options for help. I'm nearly pain free and most of that help came from diet change and avoiding estrogens, taking supplements, and progesterone creams. Please read my page. Ive put it together to share that there are many many helps out there. When so many dr.s are telling us we're crazy, or the pain is "not that bad" or worst of all "we can't find anything wrong with you" Rosesandremedies.com this tells my story and all the remedies and things I've tried to get to being 95% pain free now. I'm sure something in there can help you! Love and blessings. Never give up hope! And if you have a love and want for children like that I'm sure God will grant you them. Just beg Him. Remember He's in charge of creating life. That's the most important thing I've come to realize in all of this. He gives the children. No matter how hard we try to get them here. It'll happen when He wills it. Blessings
Darling, you must go back to your doctor and tell them exactly how you feel, they will have to do something. I know it is a hard conversation to have, but telling them you feel suicidal is a game changer. They should be able to put you in touch with a crisis team so you at least have professionals to talk to and as other posts have said they will give you medication to help with your low mood. Also ask to be referred back to your gynaecologist for further treatments. It might also be worth asking your docs to do another full blood count because you could have another underlying condition that is making things worse. I have hypercalcaemia (high levels of calcium in the blood) which exacerbates the anxiety I get during my monthlys which in turn makes the pain worse. I really hope you have the strength to fight and get the help you need. We're all rooting for you. Xxx
Poor girl, I feel your pain. So many days I've wanted to give up. It's hard to talk people who don't understand. I used to struggle to the point it affected my marriage. I wouldn't talk to him about how I was feeling because I felt like he would roll his eyes and think I was making excuses not to have sex. Some days the pain just took away my will to live. I couldn't even walk most days without the excruciating pain from my hips down to my toes. I was fortunate enough to find something that worked for me to help manage pain almost a year ago. I am NOT 100% pain free Every day but it sure has increased my quality of life. I take a natural product called Emulin by IGalen. It is available worldwide and is a natural anti-inflammatory with so many benefits. I felt great, slept amazing and had so much natural energy. I almost forgot I had endo for several months. It may be something to look into for You? Aside from that please talk to your doctor or find a service that can help guide you. There is hope put there, don't give up!
All of your responses and support has meant the absolute world to me. I’ve read every single one of your responses today and you’ve all made me feel so much better, thank you.
I’ve had an awful experience with a girl I know who has endo criticising me for struggling and asking for help. I post about my endo on social media for advice and to raise awareness and a girl I know sent me a message today saying that talking about my endo was negative and because she is stage 4 and she remains positive, she doesn’t understand why I’m stage 1 and struggle so much. She also said she dislikes how much I post about it because she doesn’t want to be reminded that she has endometriosis and she tries not to think about it.
At a time when I already feel rubbish it’s really gotten me down. We work together and she hasn’t been very nice to me because I’ve had time off for my endo and sending me messages like that whilst I’m in work has made me feel so uncomfortable. I don’t know why she feels the need to compete when we could just support each other but it’s made me feel incredibly sad.
I wouldn’t pay any attention. Perhaps she is struggling to deal with it, stage 4 is the most severe and it has consequences in the long term - possibly. Posting on forums is a good way of venting your frustration. I’ve got stage 3 and I can’t feel it anymore, my friend has stage 2 and has been in hospital with it. It affects everyone differently xx
It really is so hard to cope with. One of the hardest things I find is because people can't see what's going on inside they don't understand. Especially with regards to the long list of symptoms it causes.
I find the exhaustion itself so hard to deal with it literally just sucks the life out of you.
I have a few other conditions on top of the endometriosis and unfortunately haven't been able to work for the last 3 years.
Like most of us, I am so frustrated and feel like I'm drowning in it all.
I'm really sorry to hear you feel like this, sadly you are not alone at all, and I too feel the same.
I think chronic conditions are very isolating, it's hard for other people to understand and it's hard for us to understand how much our lives change or are different to that which we imagined for ourselves.
I have a few other chronic conditions and due to pain and fatigue I don't really go out much and it's very isolating, and I have those kind of thoughts, as much as I try to keep them at bay.
I know people say get support, or go to a support group, but then some of us live in areas where there is literally nothing, no Mind group, far away from an endo support group, and nothing really (I'm not even in a remote place). So it's clear to see why so many people struggle.
I can't really offer any solutions, but just wanted to say, you're not alone in feeling the way you do.
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