ENDO Messages for May, 2007: Re: 22

Re: 22 - Scared & Confused

From: D (anonymous@obgyn.net)
Mon May 7 21:05:36 2007

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In reply to: thatgirlinblue: "22 - Scared & Confused"

>-My biggest question is if everyone feels like they're fighting for
>answers when they go through this?

Pretty much, yes. Endo is very poorly understood by most doctors, and finding one who can treat the disease properly - by thoroughy excising it - can be difficult. It's really important to find a good doctor! There's a yahoo group devoted to endo doctors that's a good place to look, the link is at the bottom of this post.

It's also important to educate yourself! Every patient should be informed about their illness and treatment - it's the only way you can make good choices.

>-My next question is reguarding the irregular PAP results, in
>conjunction with the biopsy to match. Should I be more aggressive about
>seeing if this is in fact a sign of cervical cancer or do you think the
>doctor is right in not talking to me about it because he doesn't think
>it's a concern? I've done research on google as best I can, and I can't
>say my search results have me very settled.

I think it's really up to you - it sounds like you want to talk to the doctor about it and I don't see any reason not to just call them and ask them to explain. You could also see someone for a second opinion on the pap or any of this. If you aren't happy with your doctors, or if you don't feel like they are communicating with you or taking you seriously, you can always change doctors. I just know that I've had to drop more than a couple doctors since this started.

>
>-How bad is the Lupron shot? I'm young & I'm afraid of how this is going
>to effect my relationships with those close to me and the fact that I'm
>an office manager who works on a 1 on 1 level with people every day -
>It's important that I am emotionally stable & able not to get upset
>because it can be very trying some days.

Please do a LOT of research before agreeing to Lupron! It doesn't help everyone, and can cause some significant side effects. Essentially, you'll be thrown into chemical menopause which can be harsh. You can only take it for a year at most, and when you stop your pain will likely return when your periods do. If you read back over old posts you can find many on Lupron, both pro and con.

>
>-Lastly, while my first period after the surgery was expectantly extra
>heavy it is now 11 days after it & I've already started another extra
>heavy cycle last night with no tissue so far. This morning I was very
>close to the 1 pad an hour = ER trip rule, but for now it seems to have
>slowed some.

Are you still on the pill? I'm sorry I don't have any ideas, but if the bleeding doesn't slow down by tomorrow I'd call the doctor. In any case, I hope you are writing your symptoms down - keeping a diary of your pain & symptoms can be very helpful for figuring out what is going on.

It's really unfortunate that your doctors didn't do everything necessary at you last surgery! It sounds like they didn't remove all the endo, considering your pain levels and their time restrictions - the operation report would say exactly what they did do. There are doctors who can thoroughly remove all your endo by excision - and they wouldn't leave something like a hernia unrepaired! If you can get to an endo specialist, I recommend it.

Being your own advocate is difficult, but it can make a huge difference in the quality of care you receive! There's a link to another really good support group at the bottom of this post - the Endo Research Center yahoo group has been really helpful to me.

Hope this helps!

-- Find an endo specialist in the ERC's EndoDocs group: http://groups.yahoo.com/group/EndoDocs/

Try an excellent endo support group: http://groups.yahoo.com/group/erc/

Next message: lori: "discharge after lap"
Previous message: anjuli: "Re: Calling all post-Lupron ladies...I need some advice...HELP"
In reply to: thatgirlinblue: "22 - Scared & Confused"

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