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Re: high ca 125- endo or ovarian cancer?

From: Claire (anonymous@obgyn.net)
Fri Sep 30 02:54:06 2005

Hi Roxanne

I was referred to a specialist in June because of a throbbing/pulling pain in my right ovary area. My spec took my history and said that it sounded like I had endo because of the symptoms I had. General feeling of being unwell all the time. I did have numbness in my right groin area and sometimes right down to my foot, I also had pain in my lower back on the right which radiated down my butt check and leg, and also sometimes radiated around the front right up to my ribs. Yes, headaches too - lots of them, and pain in my hip too, it ached and sometimes felt like it was clicking. I was constantly battling with tiredness over the last 4 months and had all this discomfort/pain constantly. I was just slowly getting worse. I was skeptical about endo because I thought it was all about really bad periods/heavy bleeding and infertility. I've never thought my periods were majorly bad - I just thought they were normal, but they have got worse since I've had my kids - but they were still manageable with the odd painkiller. Also, I have two kids 5 and 3 years old, and I thought it affected your fertility (but I know now this is not always the case) So typical of my nature, I was searching for answers elsewhere (ie: internet) and some reading really scared me, as I was convinced it couldn't be endo. A couple of days before my lap I found this website and spent hours reading the posts, and I kind of related alot of it to how I was feeling. So part of me felt a little relieved that yes it could be endo. Anyway, yes - I was absolutely scared out of my wits about the surgery and what they were going to find. I burst into tears in my room before surgery, in the lift on the way down, outside the theatre - but everyone was so lovely. When I woke up in recovery I immediatley wanted to know what was going on - the nurse told me I was fine, and said my spec reported the severe endo etc.....I was relieved and happily went back to sleep... I totally know what you are going through - my heart goes out to you - its an awful experience not knowing what is going on inside, but once you know, at least you know what your up against, and if it is endo, then you will find a way of managing it. I have so far (but it is early days yet) I will find out my CA125 out of interest next week when I have my post op check. Be brave, you will get through it. My 4 1/2 year old daughter told me the night before that I had to be brave and have courage like the Lion on the Wizard of Oz - so I tried really hard for her.. Let me know how you get on, and if I can help any more Claire

At Thu, 29 Sep 2005, roxanne wrote: >
>At Thu, 29 Sep 2005, Claire wrote:
>>
>>Hi there, I had all those symptoms you described - every single one and
>>I thought I had ovarian cancer or something horrid like that. Turned
>>out just to be severe endo - I don't mean to sound flippant about endo,
>>as its pretty awful for alot of woman who suffer with it - but it
>>doesn't kill you, it can be managed, but everyone is different, and
>>finding the right management treatment for you could take a little time.
>>I've opted for the natural nutrition approach, and I feel fab now - my
>>lap was 4 1/2 weeks ago, and I have been pretty much pain free ever
>>since, except for today - period due tomorrow so I feel a bit
>>uncomfortable but then my periods have never been a real hassle to me,
>>it was just when I got all those constant aches and pains like what you
>>described and they never went away..... I had my CA125 levels checked
>>but I was too scared to ask my specialist but she never said anything to
>>me so I presumed they were ok.
>>I have also read that CA125 can detect cancer or endo. Good luck for
>>your lap - let me know how you get on
>>Claire
>>
>>At Thu, 29 Sep 2005, roxanne wrote:
>>>
>>>Hello to all,
>>>
>>>I have been reading all of the posts and I was just curious if anyone
>>>else has had a high ca 125 reading? mine was 112 - it went from 150 to
>>>112- I had a 7mm cyst on my ovary and now it is gone.. so all of my
>>>docs suspect endo and say that some of t he highest ca 125s they have
>>>seen have been w/ endo then I read that high ca 125s are present in over
>>>80% of malignancys!! given the way I feel... back aches, bones ache,
>>>headaches that never go away, pain in hip joints , swelling in abdomen,
>>>odd pulling sensation in abdomen , odd leg and arm sensations- like a
>>>numbness and it feels like someone is grabbing my arm... does endo
>>>really cause all of these symptoms?
>>>
>>>I am scheduled to have laproscopic surgery on the 11th of Oct - now I
>>>wonder if a gyn/onc wouldnt be a better choice? anyone else having this
>>>delima?
>>>
>>>Take care,
>>>Roxanne
>
>--
>Hi Claire,
>thanks for the message- so you never knew your ca 125? how were you diagnosed?
>What other symptoms did you have? did you have numbness anywhere? I have it in my groin area and in my side like its radiating... so weird! any headaches? were you as nervous as I am going in to surgery?
>thanks for your reply:)
>roxanne
>

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