I’m in such agony again . I had excision surgery about 6 months ago to remove severe endo and unstick everything . Pain was constant and then I have had a scan which showed a 5 cm complex cyst. I’m more concerned now that it is back already I had a new coil put in. I’m still in absolute agony I go to the doctors see people that aren’t even drs and then they say if your pains that bad go to hospital but I can’t do anything for you as your unable to take opioid s as they take pain away but as soon as I have them I’m sick as a dog. I just am so fed up at the moment . I feel like I’m not believed even my cats know I’m not well I can’t hardly eat as i just feel so full . I’m getting so dizzy again just from sitting to standing . But as my readings as within. Normal range it’s like I’m not believed even. I had strep throat and had antibiotics but that’s when my pain has gotten even worse I’m just in such a state and just don’t physically want to be here anymore. The pain is more severe when I’m lying down . If it anyone can advise because I was told by consultant the lab confirmed all endo was removed I’m not convinced . I just hate this complaint . I dont go drs for the sake of it but I just feel like no one really cares anymore . Also as was diagnosed with fibromyalgia as well they probably think the pain is that . Any advise would be welcoming
worsening pain just feel lost : I’m in such... - Endometriosis UK
worsening pain just feel lost
I also am autistic aswell
I am sorry that you are having a bad time Cocoacupid, it's good that you have posted on here, as this is a community that you can share your experiences with people who are also having a difficult time and do care about you.
Would you be able to manage to keep a detailed pain diary and how this pain is affecting your life, sometimes its easier to get across how your feeling on paper🙂
I was worried the cyst had burst as I spotted for nine days but you would have thought the pain would have gone by now if that had been the case. This has been the case for a couple of months but this constant pain more like the last week or so. I even said to my consultant that after the operation I have had infection after infection it s like my immune system is all to pot . I also have fibromyalgia and I think they think if you pop all the pills you won’t feel pain etc but the dizzyness is more of a concern . I just have to sit to stand the room goes round and feel very sick but earlier I felt I was going to pass out with the pain but I feel the drs just after you have excision surgery it’s like yes your ok now you’ve got to be ok no reason for pains etc. it’s very hard for me though as if I don’t work I don’t get a good wage as state sick is not enough to live on so I’m like between a rock and. A hard place as I just feel so fatigued at present just have stayed in bed . Other than the drs . It’s just a sorry world for people that have endo or other gynecology problems it’s like how can something grow back so quick . When I stay off gluten I stay off lactose don’t have alcohol I don’t smoke as I have asthma and high blood pressure etc . But as the pain is that bad have been lossing weight as well. Unfortunately I don’t think I would be able to go private or anything as it would be too far out of county for me now. X
Sometimes we can do all the things we are supposed to do but in the end we can't necessarily control this disease. There is still so much we don't know about Endo, This is a horrible disease to have and its not our fault, don't blame yourself X
Thank you for your support😘
Hi Cocoacupid,
I am so sorry to hear you are having such an awful time with your endo right now. It is truly a horrible disease and it is so hard having different horrible pains all the time and not knowing what they are or having many options in terms of what to do about it.
Is there anything that you find helps with your pain? Any particular painkillers or stretches maybe? I personally find that pelvic floor stretches and deep breathing twice a day makes a big difference if I do it consistently.
Do you have a support network around you of people who you can go to when you’re feeling low? It sounds like there is so much going on for you right now, it must be incredibly overwhelming. What is it that helps you stay positive during these times?
Really glad you reached out as SunnyHappyDaisy says, you are not alone in this,
I agree to keep a pain diary if you can as it helps me to realise there are some better days, there are a few apps that are good,
Claudia
I just feel physically exhausted with this constant pain . I managed four hours at work yesterday until it got to the point I couldn’t cope as was feeling more worse from bending down etc . I thought to go in to get it off my mind . I try to work or see people to not feel so down but right now I know something isn’t right and nothing I do seems to help. The only option the nurse was to go hospital . But the thing is if it is gynea I doubt they will sped up the scan as that’s in four weeks . It’s like the pain is making me feel like I’m going to pass out. I try not to focus on. The pain but it’s hard not to when it’s been there for the last 18 days and getting worse. I don’t know whether to say to to have the coil out I’m just like lost now .
Hi there, sorry you're going through this. Yes it can grow back that quickly. I would ask to be referred for an updated MRI. At 6 months after my surgery, my MRI showed there was some of it back. Not enough for more surgery, but enough to change my medication. Hope you feel better soon. Meditation helps me , as stress and anxiety seems to make the pain worse. So you could give that a go, at least once a day, the headspace app is worth a try x
I’m so sorry for all your pain and uncertainty- I’ve been there, and am currently post lap (had to pay as could never get past ‘it’s just part of being a woman, wanna try the pill?) stage with the nhs, and I’m hoping for the best. so sick and tired of reading stories like ours, it’s actually criminal. We should all collectively sue the NHS for all the turmoil, shame and chronic pain we’ve had to endure for decades, some of us. Unbelievable x
Hi everyone just wondering if anyone can help with zoladex injection?
Scared, lost, in pain
Really suffering and just don't know what to do 😟
Mirena and breast pain
