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 .
It really is awful and it’s hard to know what to do or where to turn. It sounds like you could do with some more medical advice though if you’re not sure whether to keep it coil in so maybe it is worth seeing someone again. If you go to A&E they will have to assess and take some kind of action.
I would definitely recommend looking in to pelvic floor stretches and making sure you are eating loads of anti oxidants as these things can make a really big difference to pain management and it helps you to feel you have some control. Chloestevensphysio on Instagram has a video of some pelvic floor stretches, I do them in the morning and evening for 10 mins with deep breathing.
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
Hi Cocoacupid,
You're not going crackers or not to be believed and the explanation is simpler than that - the reach and extent of how this illness affects people isn't properly understood. Neither is the effect understood on different groups - so being neurodivergent may have an additional role in how the body responds. Plenty of medics aren't fully trained on what is known nor keep up with recent research, some are willing to admit that and many aren't confident to bring that to a standard conversation. A few are but that doesn't mean they have the answers either. All of us find that hard but for those who need more certainty to manage stress this is testing to the core. It creates significant additional stress. (So for example it's being noted now that women with ADHD often have a much tougher experience with menopause and there HRT maybe more important earlier. We can't fight our basic physiological self. Each of us is different).
Endometriosis can have significant consequences right throughout the body and its metabolism. This causes inflammation and stress which in turn feeds the endo which causes more immune system challenges. Getting good solid understanding to the best ability will help you unpick your specific pathway in this disease and begin to find a way to support yourself and be able to ask for specific assistance rather than the generalised I feel ghastly variety that DR's struggle with.
Work your way through Heal Endo by Katie Edwards and start any changes with only one or two at a time. Give things a solid 3 months trial and keep a record of its effect - even if it's none. We learn as much from what doesn't help as what does. Learn what dampens down the endo for you so you've got your personal tool box to hand. So for me it's Omega3 , Reservatorol, Bromelian with Quercitin, lacto free, Hypopressive pelvic floor work, gentle exercise, Plenty of water (3 to 4 litres per day !) Good Mediterranean diet, reduced stress and sufficient sleep. For others it will be other combos. Much of what benefits and supports endo is also what helps autism to be less florid ; to be more the peaceful five in one's life rather than a raging torrent of stress and pain. Disentangling the two is pretty nigh impossible frankly as they can feed each other which only ramps up the immune system playing havoc even further. Neither are the cause of each other both are bad together and make each other more florid.
Stress care is crucial in managing pain and minimising disease progression. Try Curable App programme to unwind the body's habit around pain responses- that is in a permanently switched on state jammed by the constant signals from endo. For additional pain relief a discussion with GP on Centralised Pain Relief and suitability for you is likely in order to turn down the volume on the internal distress which will aggravate everything. Endo pain is much worse than most as the tissue is nerve fibre rich without the same level of myelin sheath protection- it's literally raw nerves in there. Opioids and the standard pain relief does not work on those pathways so is minimally useful especially longer term. Many GP's don't realise that endo pain is nerve pain. Once understood they can approach it differently.
You have done nothing wrong. You are in pain and need help.
And that is the job of the medical teams it's literally what they are paid to do. Reduce pain, treat the patient.
If you are in pain don't feel embarrassed, let that be an alarm bell that you definitely need help and go to a&e.
Cycst can cause pain too maybe this needs removing.
What ever it could be scar tissue and endo DOES grow back. So trust your pain and get treatment.
A& e will treat you. Don't suffer!
thank s hun I managed to find some diclofenic suppository’s so have tried using them when I’ve been in work so I get a bit better sleep 😴 pain is awful 😢 and I hate how they say it’s my call what I want to do but I’m sure because of the size of cyst it’s turning and twisting as now I’m getting even more dizzy and feeling so sick . I feel like I’m constantly moving when I’m still xx
Mirena and breast pain
I just don’t know what to do anymore 
Pelvic physio - pain!
