I supposedly have endo now, was in hospital in February for back pain and they found five chocolate cysts, told me I have endo and gave me zoladex, I am on targinact, gabapentin and amitryptyline for the pain. I cannot get out of bed for an hour every day until the pain meds kick in. I'm sick of it and gynaes who won't or don't properly investigate!! I saw my consultant last week for the first time after being in hospital and first he tells me I'm basically wasting his time as I have not had a scan, I'm sorry, was I supposed to order that?? Then why have I just been taking the pain meds and not gone to the pain clinic, again, I'm sorry, was I supposed to organise that?? THEN tells me they don't know if it's endo or not and do I think it is?? Flipping eck doctor, pass the buck much??
Sorry for the rant but I'm tired of feeling rubbish, the hot flushes, back and leg pain and insomnia are killing me, I cannot work and I feel like I'm just existing, not living. How do they expect us to live when we are in too much pain to work and nobody is actually managing our treatment or indeed diagnoses? The consultant says he will just keep me on zoladex as it's too hard to operate. I will get add back hrt, but hang on, isn't it the oestrogen that feeds this horror of a disease?
What do you all do about work? I'm a self employed pilates instructor and sport massage therapist. Neither of which are easy when you feel as if you've been laying on the motorway all night with trucks going over you.
Arghhhhhh!
Ok I feel better. Again. Sorry for the rant.
Written by
sbactive
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Poor you! You're definitely allowed to have a rant.
It's probably worth looking for a more experienced endo specialist. It doesn't sound like you have much confidence in this one and having faith in your dr can relieve so much stress and worry. Ask for a second opinion, ask to be referred to someone else, fork out for a one of private consultation with someone with a really good reputation then ask for the rest of your treatment with them to be via the nhs: however you do it I think finding someone you have faith will do you the world of good.
As for work I don't have much advice I'm afraid. I've been signed off for about 6 months but that can't carry on indefinitely and I imagine it's really difficult for you bring self employed. If you find out the magic answer to that then let me know!
Thank you for your reply, I have asked for a second opinion and have an appt with another gynae, hopefully he will be more proactive!! Navigating the health system is almost a full time job! Pain killers now kicked in so I can at least walk and get up. This disease is awful, and I'm so glad for this forum and to know I am not imagining all this!!! Thank you
You poor thing,thats awful....your consultant saying you wasted his time....you did have a scan for your choclolate cysts...I dont know how you coped with five,the pain must have been hell....I would defo go to a different consultant coz he sounds like he hasnt got a clue and sending you away with drugs...why didnt he do a laparoscopy,asking you if you knew what it was....run pet lol....I feel your pain,its the most cruel horrific disease going and no-one gets it and everyone drifts away as there bored of it,if they cant see it then they dont understand it....thank god for this site....everyone supports each other and we all understand what the pain is like...crucifying.....Your case sounds very similar and unfortunately I had to give up work,its a chore getting through every day as it is with endo,the highlight of my week is going grocery shopping with my husband as thats all my body can cope with,have been house-bound for over a year now and can do very little,its such a depressing disease and I genuinely dont think it ever goes away.....your right about the hrt,just came off mine after taking it for 3months and its made things a lot worse...wait until you see your new consultant before taking it and the very best of luck with your appointment,let me know how you get on x
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