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: Candace (anonymous@obgyn.net)
Mon Sep 22 08:18:24 2008
There was this one girl who recently had a surgery. She had a thing
called a belly binder. Said it worked miracles. I couldn't find one to
fit my small frame at my local pharmacy, so I used a couple of ace
bandages. My fiance wrapped them snugly around my belly, and that
helped a lot with getting up and doing things. I have a 6 year old son,
who started kindergarten 5 days after my surgery this year. Another
thing that helped, and this may sound weird, but I would get a really
really super super soft pillow. I would lay on my stomach on it. I
wouldn't lay flat, but I would lay enough on it, to where the pressure
would help.
If you're in a car, for the first week, take a pillow with you. You can
hold it tighter, and it will help on bumps. Also have one in case you
cough. It's a lifesaver, and I don't know what I would have done for my
appendectomy, and my 3 endo surgeries without it!!!!
One more thing, indulge yourself, in little treats. It will help a lot.
Give yourself that extra piece of chocolate, or rent that extra movie
you've been wanting to see. Prop your feet up, or put them in a nice
orange juice soak (helps get rid of dry skin.) Pampering yourself after
major or minor surgery goes a long way to recovery. :)
At Mon, 22 Sep 2008, bren wrote:
>
>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
>
--
Candace
Wishing for pain free days for all!
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