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Re: Disappointed-Endo is a complex thing!
From: anonymous (anonymous@obgyn.net)
Wed Dec 31 19:40:06 2008
Please know that the majority of the bitchy, hateful, attacking posts
are from the same person over and over again! The sardonic and/or
sarcastic (I don't care which word describes it best, to me it is just
plain UGLY!) remark was from this person as are most of the "negative"
comments. She jumps on anyone who doesn't believe exactly as she does,
and that seems to be that all endo patients should only have excision
surgery, and prefers for it to be done at the CEC. The ERC website is
the best in her opinion and she states that repeatedly. Trust that the
comment about Trelstar was NOT meant to be humorous, it was meant to be
hateful and rude. If you can ignore the posts from her, there are
plenty of helpful ladies here who do care and will offer support.
At Sun, 21 Dec 2008, anonymous wrote:
>
>Thanks for the positve comments. I am new to this site and to posting
>and was shocked at the negative feedback I got from my question about
>Trelstar, another medication that causes chemical menapause. This first
>one I got was a sarcastic comment about how my prostate cancer will go
>away. Maybe during different times I may have appreciated the humor but
>not in my current and desperate state. I was ready to give up and not
>read any more but your post made me realize that maybe some other woman
>who are more positive will be able to help me through this difficult
>time. Thank you
>
>t Sun, 21 Dec 2008, JD wrote:
>>
>>Hi Nicki
>>
>>I am also in Australia (qld) and was diagnosed with severe Endo 3 years
>>ago. I had a lap in Oct 2006 followed by 6 months of Zoladex njections
>>(maybe what you are talking about...) 2 months into the injections I
>>started add-back therapy to balance out the hot flushes and crawling
>>skin feeling. While the injections made me feel pretty darn crappy for
>>about 6 months, I did feel margionally better for a good 12 months
>>afterwards. I personally wouldn't have them again though, but at the
>>time I felt it was my only option because the surgeon that performed the
>>lap wasn't a specialist and said he couldnt remove much so he would try
>>to shrink it.
>>
>>However, I have just had excision surgery 1 month ago with Dr
>>Wynn-Williams from Eve Health is Brisbane and am feeling pretty
>>confident that it was successful. And as I do not want to have children
>>I was happy for him to do what he could to get it all, my health is more
>>important to me than the ability to have children. I do not have
>>private health so it did cost me $4500 as an intermediate patient but I
>>would have had to wait 12 months if I wanted to go public.
>>
>>I have not been on this forum for over 6 months, although I have read
>>the odd post (like yours yesterday) and I have to agree that it can be
>>quite negative and downright bitchy sometimes. I know we are ALL
>>frustrated but we need to be supportive of others and not just out to
>>push 'our story' so much.
>>
>>It is nice to hear from someone over this side of the world!!
>>
>>Jaime
>>
>>>At Sun, 21 Dec 2008, Nicki wrote:
>>>>
>>>>Hi all who read this
>>>>I'll make this short, I don't want to ramble on.
>>>>I came here looking for information and support. I have certainly got
>>>>that from many here and I thankyou deeply. When you are told you have
>>>>this 'thing' and don't know much about it comming somewhere like this
>>>>can be very comforting.
>>>>I'm just disappointed with some of the, well, almost 'argueing' about
>>>>topics, and some of it is not comming over very nice at all...which is
>>>>very disappointing for a place that is supposed to care and support.
>>>>Someone recently started a thread about it being negative here, and I
>>>>think it has continued to be!
>>>>Look, in the end endo is a complex and not well understood condition.
>>>>Sure I don't doubt it that there are some Dr's out there who are giving
>>>>wrong/bad info, which is terrible. So yes it is up to us to be our own
>>>>advocates and find out information. But in the end we have to make
>>>>decisions about our own health care, and what is best for us. And sure
>>>>if someone doesn't understand - inform them...but make sure you have
>>>>accurate information, know their story well enough to make comment and
>>>>above all do it in a respectful way! For example, I'm going to have the
>>>>drug that puts you into menopause for 3 months rather than have my bowel
>>>>cut from my uterus and endo taken away from there. Some have slammed me
>>>>for this almost without knowing (or bothering to ask) that I've chosen
>>>>this because my goal at this time in my life is to preserve my
>>>>fertility, which would be compromised with such a big operation (mass of
>>>>scar tissue on my uterus). I will seek surgery after I've had my
>>>>children. I will be going to IVF and this drug is used there too before
>>>>an IVF cycle begins and has been shown to increase rates of pregnancy.
>>>>Everyone's story is different.
>>>>I'm sure most who come here are at one stage or another not unlike me -
>>>>scared, worried, confused, frustrated, seeking information and perhaps
>>>>guidance. They need kindness and support not negativity and more
>>>>confusion.
>>>>I wish everyone with endo the very best in their journeys to beat this
>>>>terrible condition.
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