What would have helped you?

Hello ladies,

I am a second year nursing student and we are currently doing an assignment on health promotion and empowerment. we have to make an artifact and i have decided to make a booklet on endometriosis that can be given to women at the point of diagnosis.

I decided to do this as when i was given my diagnosis i wasn't given any information about what the condition is or what i can do next whilst i am waiting for medical treatments to commence so i was very confused and quite shaken up.

I would like to know all your opinions and ideas on what would of help you at the time you where diagnosed.

Thank you all in advance.

5 Replies

  • Less of a waiting time between appointments with gynecologist and getting medical treatment (i seen my gyno in september and was told i would be referred for zoladex injections, and still haven't had the appointment through for them).

    Proper information on the medicine available, altho i was told i would have to have the injections i wasnt told about any of the symptoms or side effects, or even what kind of drugs they were, i had to find out online!

    More emotional support,, people who understand what its like, gps should help to find support groups.

    I also feel like i know more about endo than any of the doctors i have seen, so i think they should be more educated on it too.

    I dont know if thats helped with your assignment but goodluck xxx

  • I find out that i soufer of endometriosis 13 year ago, have 2 operation in italy, i'm from romania and i could tell u that the only fact that a woman have endometriosis is the pain of his life. If a woman let this effecting this life is verry bad.First of all the doctor in italy they keap my mind good, the try to make me to don't think at endometriosis , but to made abstraction of it, to coabited.When i'm angry all my pain are doubelling.The diet is essencial in this, but i soffer from one think, i want babys and we can't.

  • My doctor gave me a print out from the Internet! Real honest information is needed, I had a lap 2 years ago and was barely given any information with regards to grade, where it was, how they removed it etc. I wasn't even told it could and probably will come back which is what I'm facing now! GPs definitely don't seem particularly knowledgeable which is a shame because when you have to find your own information out online, that can be quite scary! X

  • shorter gaps between appts, being able to get hold of someone once the shock of the consultant has worn off. i had loads of questions after i took in the endo diagonsis then i had to wait 6 weeks for my next appt.

    More information on my post op sheet, a follow up appt for my wounds to be checked and a shorter gap between lap and the next appt with consultant.

    More information on the lap, how they do it, post op care etc. I found out all of that on here :(

    Side effects of the medication, zoladex etc. info on the coil i.e how long cramp and bleeding may last.

    on the plus side- i got a lovely leaflet at my first appt which lead me here very quickly- Bedford hospital :)

    good luck :)

  • I think the following would have been useful:

    An explanation of what endo is

    Treatment options explained with pros and cons

    Pain relief options explained

    A leaflet to give family/friends explaining what endo is (could be detachable from your booklet or tucked in the back)

    A list of helpful links including support groups

    A list of useful aids such as tens machine, electric heating pad/throw, those stick on one time use heated pad things you can get in the chemist, badger balm muscle rub,

    A few recommended books on endo

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