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Thread: new to forum - endo sufferer

  1. #1

    Default new to forum - endo sufferer

    Hi



    I am new to the forum scene but was recomended to this site for some advice and support in relation to endo. About 5 weeks ago i was diagnosed with stage 4 endo prediminantly in my bowel, and my gynae has now referred me to the Endo clinic at the RWH. I was wondering if anyone has been through similar experiences and been to the RWH endo clinic?

    thanks!!

  2. #2
    ~Jane~ Guest

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    Hi YDI

    are you in Melbourne? My gynea is one of the unit heads and an endometriosis specialist at RWH Melbourne and is fantastic.

    Let me know if you are in Melbounrne or not before I start waffling on about the wrong dr's.

    Cheers

  3. #3

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    Hi Jane,
    yes i am located in melbourne so feel free to waffle! i have an appointment scheduled for december am do you know if i am able to request a spoecific Dr or is it who is available on the day?

  4. #4
    ~Jane~ Guest

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    Hmm I don't know if you can ask for anyone in particular, but if you can see if you can see Dr Healey. I have been seeing Martin for about 6 years now and while I still have endo (had a lap at the start of this year) it's not as bad as it used to be and I have been in a lot less pain since seeing him. He is a great doctor, bit of a character but a fine surgeon and very kind man.He is very straight down the line and tells it as it is which is what you need with endo.

    I have only ever seen him through his private practice but I have had a look at the RWH website and have heard of some of the other dr's listed and would imagine that they would be good as well. I have been to other clinics at RWH and they have some fantastic specialists work there, it's just the luck of the draw who is on when you book in I guess.

    I hope it goes well for you, I was diagnosed with endo back in 1993 when I was 19, I am now 32 and have had 9 laps all up. I have had severe endo which involved my bowel and ovaries and ureters and lymph nodes, but with my last lap it wasn't as extensive. It's a hard disease to live with, especially the pain aspect, I know it had really affected my life up until the last few years. I guess for me it has been a degree of getting as much surgery as possible (without having too much) and learning to accept it as part of my life, and unfortunately despite what some clinics say, there are some of us where it does keep coming back.

    Can you give the RWH and ask who you are booked in with? I'd be interested to see who it is.

    All the best and feel free to ask any qs

    Cheers
    Last edited by ~Jane~; October 30th, 2006 at 08:24 PM.

  5. #5

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    Hi Jane,

    thanks for your reply, comforting to know that you have heard most of the doctors names. I have suffered with this for at least 6 years. i have been to that many doctors and in that time and i have been referred to gastroenterologists and been told i have ulcers, IBS, and indigestion issues. i have been in and out of the ER where they have administered morphene for the pain. I demanded a referral after talking to my friends mum who is a muscolo skeletal therapist and said it definitely is not IBS and i had my first lap 5 weeks ago which showed up stage 4 endo in my bowel, left ovary and POD. nothing was removed via lap as it was too extensive and developed that i need to now see a specilaist in the area. Relieved that they finally know what is going on.

    I will find out who i am booked in with at the RWH and let you know. thanks for your advice though its always good to speak to someone who understands what its like.

  6. #6

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    Dear YDI

    I too have had severe endo like Jane, also involving my bowel. I had a 20 cm bowel resection in May, and I am now really good. My periods vary some months they are normal others they are a bit of a menace but nothing like they used to be. I went through ECCA in Sydney, using Dr Michael Cooper and his colluegue Dr Matt Morgan, who is a colo rectal surgeon. Prior to this op Michael did a cystotomy on my bladder to remove the endo there and on my right ovary. I too went undiagnosed but always knew that endo was present. That female instinct.

    Ensure you get a good surgeon, but Jane is the one to speak with in regards to treatment in Melbourne. She has been around the traps so to speak and is in the know with these guys. If you have any questions regarding your pending op, let me know, i am happy to answer any questions.

    If you want to find out more info and the latest ways the drs carry out there surgery check out the ECCA website. Google search it. Sorry can't post actual site, due to forum rules.

    Keep us updated on your progress

    Leis x

  7. #7

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    hi jane,

    i called the RWH to find out who my appointment was scheduled with and the clerk said you will be put in with whoever is available on the day and at that time. A bit taken back i said oh ok, have there been any cancellations that perhaps i can slot into an earlier date, she said we are not like that here honey, people dont call up and cancel they just dont turn up ,so to answer your question no.

    a question for you though, was there a long wait between your initial appt and the next (surgery date, follow up etc)

  8. #8
    ~Jane~ Guest

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    I have never gone through the public system so I don't know what the waiting periods are like, only ever gone private and it's been a while since I started to see my gynea, sorry I can't help you with that one.

    Do you have private health insurance at all, it's definately handy to have when you have endo. You poor thing, it sounds like you have had a rough time with it.

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