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  1. #1
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    Default scared, confused, worried! please please help me!

    Good morning ladies,
    I have something on my mind and would like to see who has felt or is feeling the same?!
    First off i am 19yrs old, 20 in a few months, i have been going through excruciating pain, along with many terrible symptoms,every cycle for the past 6 months ( yeh im a newby, and really need a bit of advice or some one to listen and understand ).
    Since sept '13 docs have stuffed me around over 7different docs say it is endo, but i am yet to see a gyno or have surgery. ( i have referrals to 2 different gynos)

    So I would like to ask you lovely ladies a few question, to help me cope, understand, feel less alone? Because im feeling pretty down and confused.

    1, How long did you go through this before action was taken and had the diagnosis?
    2, What were your symptoms and what was your seriousness/ level? ( complete mind blank, cant think of the word, i have read a few times some ladies gyno has told them they are a level 3 for example- catergory? Dunno )
    3, Has any one had confirmation of infertility and unable to have birth? How did you get through that/ have you?
    vs
    4, People who have been able to conceive, was it natural? Any complications?
    5, Does any body recommend anything to help with endo, while i wait for my appt as i truly dont think i can take much more?!
    6, How did you react when you found out, how did you over come this feeling of despair and emptyness!
    7, is this condition for life? Is it always this painful? With these symptoms? Every cycle? Does it ever get better or will it keep getting worse?

    Also please feel free to add anything that helps your get thru this, being the pain or mentally!

    Sorry ladies, I have a million things i want to share/ say/ ask but i dont want to seem over the top,
    I am just a very worried, scared, confused & emotional person atm. I think i make myself worse when i sit here and ask my self, what if you do have it? what if i wont be able to start a family? What if what if what if!
    No doctor has properly explained what my next step is, what i have in store for my future? Or what will happen?
    I have googled my little heart out trying to get every piece of detail, but what i need, is real woman that has or have experienced this!
    Thank you in advance, please give me the information i need to try put my mind at ease.
    Thankyou.

  2. #2
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    Your first step is seeing the gyno. The only way endo can be diagnosed is through a laparoscopy, which is day surgery. I wouldn't stress too much about all the questions until you have a diagnosis. I've had endo for years. I can conceive naturally with no problems. It all depends on where the endo is located so you can have it without it affecting your fertility.

    In regards to pain. I take nurofen plus & panadeine extra. I've had several treatments but it always comes back for me.

  3. #3
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    I could not read and not respond. I could have written your post when I was 19 years old. I remember clearly my doctor at the time saying "oh you probably cannot have kids" and then left me. I was devastated. They offered me no help, information or sympathy.

    On top of that my mum does not talk about these sorts of things. We are very close unless it's about this.

    I have PCOS and have just been diagnosed with primary infertility . I'm just starting my first round of clomid.

    The best thing I've found is getting a great gyno - I love mine she is amazing. I've only had a one hour session with her but I received so much information and she just got into it, prescribed what I needed and made me so comfortable.

    It's also good to have people to talk to. If you need it, please pm me. I'm happy to just listen if that's what you need.

  4. #4
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    I have been surgically diagnosed with endometriosis and PSOC. I had horrible pains for years with no answers. One day I started noticing this mass on my right side that I could actually see and feel. After an ultrasound they found that I had a cyst on my right ovary the size of a fist. It wasn't until I had surgery to get the cyst removed that they found endometriosis. My cyst was actually sort of a blessing. I'm not sure what I would have done if I continued to have pain and no answers. You need to make sure that you have a gyno that actually listens to you and is concerned with you. No one knows your body better than yourself. Another thing to remember along the way is to value your friends and accept that some people will not always understand your struggles. That is one thing that I wish that someone would have told me is to not push people away. It was just easier for me to push away my friends and family than to constantly cancel plans or leave events early because I was exhausted or in pain. Do not do this. Your friends and family will be your biggest support system. AND always remember and remind yourself everyday that you are not alone! We all struggle and are here for each other. If you ever have more questions or a shoulder to cry on just know that there are many with endometriosis and are always willing to help someone who needs it. Stay positive!

  5. #5
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    Quote Originally Posted by manda2107 View Post
    Good morning ladies,
    I have something on my mind and would like to see who has felt or is feeling the same?!
    First off i am 19yrs old, 20 in a few months, i have been going through excruciating pain, along with many terrible symptoms,every cycle for the past 6 months ( yeh im a newby, and really need a bit of advice or some one to listen and understand ).
    Since sept '13 docs have stuffed me around over 7different docs say it is endo, but i am yet to see a gyno or have surgery. ( i have referrals to 2 different gynos)

    So I would like to ask you lovely ladies a few question, to help me cope, understand, feel less alone? Because im feeling pretty down and confused.

    1, How long did you go through this before action was taken and had the diagnosis?
    2, What were your symptoms and what was your seriousness/ level? ( complete mind blank, cant think of the word, i have read a few times some ladies gyno has told them they are a level 3 for example- catergory? Dunno )
    3, Has any one had confirmation of infertility and unable to have birth? How did you get through that/ have you?
    vs
    4, People who have been able to conceive, was it natural? Any complications?
    5, Does any body recommend anything to help with endo, while i wait for my appt as i truly dont think i can take much more?!
    6, How did you react when you found out, how did you over come this feeling of despair and emptyness!
    7, is this condition for life? Is it always this painful? With these symptoms? Every cycle? Does it ever get better or will it keep getting worse?

    Also please feel free to add anything that helps your get thru this, being the pain or mentally!.
    It can be very confusing and scary in the early days but there are support systems out there. To answer your questions:
    1. I suffered symptoms from the onset at around 14 yrs old. My mum and sister both had it so we knew there was a possibility I would get it too. At 16 they put me on the pill. 17 I saw my first gyno and was told it was all just part of being a woman. I saw another two gynos and admitted to hospital numerous times before finally get a laparoscopy done at 21 yrs old.
    2. I was a stage 2 which they class as mild. Lucky that there were minimal lesions but excruciating pain every month. I would be off work for a week at a time incapacitated. I had severe breakthrough bleeding and very heavy bleeding every month. Terrible fatigue and nausea also to go with it.
    3. We've only just startedTTC and I haven't been told I'm infertile but I was told on numerous occasions that I should just have children to fix me. Unfortunately I wasn't in the space at 21 to make that decision so I made the conscious decision to wait until I was ready emotionally and physically. Since going off Yaz (which managed my symptoms perfectly! Highly recommend it) all my symptoms are starting to return which concerns me but no point worrying until you have definitive facts.
    5. Try Yaz contraceptive pill if you aren't TTC as it worked wonders for me. If you are TTC then maybe ponstan. That was the only thing that would take an edge off for me. And heat packs. Avoid alcohol and caffeine. It only makes it worse.
    I was lucky that I had an amazing support network. Find a good gyno and don't be afraid to push for some answers. It's your body....you know it better than anyone.
    I know ladies who have been told they're infertile due to severe endo and have conceived naturally and given birth with no complications so there is hope for all of us. Get the facts and don't dwell on what ifs.

  6. #6
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    @manda2107 my answers are in the questions. Hope ur feeling better by now

    1, How long did you go through this before action was taken and had the diagnosis? 15 years or so. Doctors said take painkillers and go on the pill, it's "normal"
    2, What were your symptoms and what was your seriousness/ level? stage 4 severe. Ovaries and abdomen were totally bound up.

    3, Has any one had confirmation of infertility and unable to have birth? How did you get through that/ have you? I was told not to bother ttc naturally, go straight to ivf.

    4, People who have been able to conceive, was it natural? Any complications? We took 6 months to try naturally before starting ivf and hey presto, pg in 3 months

    5, Does any body recommend anything to help with endo, while i wait for my appt as i truly dont think i can take much more?! Pain management and steps to reduce the flow - avoiding sugar really makes a difference for me, also agnus castus/vitex (from health food store, takes 3 months to fully take effect)


    6, How did you react when you found out, how did you over come this feeling of despair and emptyness!
    7, is this condition for life? Is it always this painful? With these symptoms? Every cycle? Does it ever get better or will it keep getting worse?


 

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