Broken

I guess I’ve come here today to vent, I have suffered years of pain and got my official stage 4 endo diagnosis just over 5 weeks ago. In the last six months I’ve deteriorated rapidly and in the last 3 in particularly I’ve been off work more days than I’ve been in. Since my lap the pain has been pretty much constant, the wait list for my next op is one year. I was given prostap to alleviate the symptoms. At the moment I’m in the flare stage and I’m miserable, the pain is horrific so my meds were increased (3x500mg mefenamic acid, 4x 100mg tramadol and 3x60/500 co-codamol daily) as a result I’m constantly nauseous/vomiting which has created a vicious cycle where I can’t keep my meds down so the pain in increasing. I’ve called my consultant’s office who said they would call back and haven’t, I called back and got straight to voicemail so I left a message. My gp has done all he can. Is this it? Is this what life with endo is like? I’m 25 and today I’d genuinely consider trying to find a gynae who would just take everything out. I’m supposed to start training as a midwife this month. This disease is taking over my life and I don’t know what to do. Today I feel broken.

2 Replies

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  • A next year wait is too long - I would suggest you speak to your GP and ask him/her to make enquiries and get you referred to an endo centre elsewhere with shorter waiting lists even if that means traveling further from home. Demand for the services of expert endo surgeons does outstrip supply, but there are ways to speed up getting an op.

    Aside from being willing to travel further afield, you can also let your surgeons secretary know that you are ready and willing to standby for any short notice vacancies that crop up.

    Patients do have to cancel ops at short notice for a host of reasons, and depending on the schedules and availability of any other specialist surgeons you might require for your op, it may be possible to get seen sooner if you inform them that you are flexible about where you have the op and also able to accept a short notice one.

    It isn't always the case that someone can be flexible -if they have pets and kids that need care arrangements made, then fixing a date would suit those patients more, but if you can show you are desperate and willing to take whatever is on offer then there is a much better chance you can cut down the time to wait.

    Also the flare stage doesn't last forever -it isn't nice at all, but it will ease off before the proper side effects of the drug begin to kick in. Hopefully they won't be so bad for you, and you do feel better for being on Prostap than putting up with the pain while you wait for the op. I can't guarantee that of course but it is something to try and if it doesn't work out for you then you can stop it and go back to other ways to stop periods. Wishing you all the best and hope you're feeling better very soon.

  • thank you Impatient! i live in Northern Ireland and there are very very few surgeons (i even think mine might be the only one) who is recommended or willing to operate on severe endo. its very frustrating. I have volunteered to go in short notice, be he said himself that the wait it that long his patients rarely cancel. I'm going to stick out the prostap a little longer and hope it works.

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