ENDO Messages for September, 2008: Re: Thanks for advice mls99 & anonymous. Here's a long story for those who suffer all sorts of symptoms & pain. Hope someone finds it interesting or helpful

Re: Thanks for advice mls99 & anonymous. Here's a long story for those who suffer all sorts of symptoms & pain. Hope someone finds it interesting or helpful

From: bren (anonymous@obgyn.net)
Mon Sep 22 00:08:35 2008

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In reply to: anonymous: "Re: Thanks for advice mls99 & anonymous. Here's a long story for those who suffer all sorts of symptoms & pain. Hope someone finds it interesting or helpful"
Next in thread: Candace: "Re: Thanks for advice mls99 & anonymous. Here's a long story for those who suffer all sorts of symptoms & pain. Hope someone finds it interesting or helpful"
Reply: Candace: "Re: Thanks for advice mls99 & anonymous. Here's a long story for those who suffer all sorts of symptoms & pain. Hope someone finds it interesting or helpful"

At Sun, 21 Sep 2008, anonymous wrote: >To the "annonymous" reply:

Thanks for the message. It's very kind & such a wonderful thing how those of us who've never even met each other could be such a line of support compared to "friends" we've known for years. Anyways, for your painful bowel movements, my doctor had me try Miralax...seems pretty popular since whenever I go to Wal-mart for the small bottle (since it's cheapest there), it's always sold out. =) Well, it does seem to help somewhat & it doesn't taste like anything. You just mix it into your favorite drink like juice or punch and drink away. You do have to hydrate a lot since it causes all the fluids to accumulate into your intestines so that it softens your stool & eventually allows you to "go" w/o any pain. It's not like a regular laxative that will cause your stomach to flip out or cause pain, so it doesn't hurt to try, especially if you are really constipated. Using an enema or suppository might seem "that's something I can never do-no way" type of deal, but sometimes you really don't have a choice if you want to relieve yourself...especially since I'm sure constipation causes more pain and bloating. Try the miralax, it usually works w/in a few days. How has lupron been for u? I heard many negative things about it. My obgyn specialist wanted to put me on it when he first diagnosed me by physical exam only but something I said or how I reacted about wanting kids in the future & how I don't want anything to lessen that chance, he decided to try my on birth control (Yasmin) instead...I had negative side effects w/ that so he had me switch to progesterone only pill (depo provera pill form), which hasn't given me any negative side effects that I can notice. I don't even know if I truly have endo since I don't know my results from the laparoscopy. He even mentioned adenomyosis & the only way to diagnose or treat that is by having a hysterectomy, which is definitely not an option for me since I am not married yet therefore don't have any children yet either & am longing for one or two. The most debilitating part of this disease or whatever is causing all my symptoms is the limited energy (fatigue w/ malaise + lethargic) & especially the nerve pain in my pelvis & down my legs along w/ lower back pain. I used to have IC symptoms before depo provera where I would constantly feel like I had to use the restroom (like a UTI, but no problem releasing fluids) w/ burning & would cause me to wake up 3-4 times a night & the mornings were worst when it was time for my medication & usually I have to go back to sleep after meds or lay there for 30-60min in order to move, but this bladder problem gave me no choice but to crawl out of bed to the bathroom nearly in tears each morning. I know I've been misdiagnosed a few times at urgent care & ER of a UTI (blood in urine, but no bacteria? & some trace of something-tissue I think? oh & anxiety) before anyone had any idea that endo could be causing all this. This long journey has taught me a lot. Experience is what brings upon compassion. Also, it's amazing of what many doctor's don't know or are inexperienced in many areas or how easy it is to misdiagnose or lead to a diagnosis as something psychological. I'm lucky to have a doctor who believes me. MY PCP has been great in managing my pain, my obgyn specialist (altho' he doesn't know everything about endo) he's been great, & my rheumatologist even tho' out of his area, he ordered series of test & x-rays to somehow help.All my neg. experiences came from the 1st neurologist I met, the 2nd obgyn specialist for 2nd opinion who never even heard of sciatic endo, & urgent care & er doctors. So the possibility of meeting a "good"-true-sincere doctor is rare, in my opinion. Anyways, sorry for the long stories. I'm just hoping some might come across my posts & it might be of some encouragement or help or even just interesting to read....And many of you probably know what it's like to recover from a lap. I'm sorry, but my doctor said it wouldn't be that painful & I should be back to work by 2-3 days, there's nooooO way I can go back to work after only 3 days especially since I teach & am on my feet all day & have kids who love to hug me around my tummy! Hope I get to meet many of you on this forum & just chit chat. I was going to make my own web/blog page, but too much of a headache & hassle to try to get it started. *sigh*

>Hi Bren,
>
>I feel the same way about this being my only outlet for support. Friends
>think I'm faking or pushing them away, when the truth is i try to tell
>them what's wrong and they dont believe me and think i'm saying im in
>pain just to get pain pills. I too have not had much of a social life
>since i had surgery 3 months ago. I also have painful bowel movements,
>but I guess I'm still new at this and chalking it up to part of the endo
>experience. Any info you have is appreciated. Im on Lurpon, but am
>trying to figure out what i can do diet wise to make things better.
>
>Just so you know: it's not in your head. you're not crazy. I thought
>the same thing at first. The kind people here and other internet
>research has convinced me, finally, that my pain is actually real.
>
>I wish you well. Know that you are not alone. And keep bugging the
>doctors if you have to. It seems like a lot of us are getting brushed
>off, which really bothers me. I"m not sure if the docs think they are
>doing the best for us based on what they know, or if they just want to
>get rid of us. In any event, find someone that WILL help you. And
>remember we are all here for you.

--
Bren

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