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body issues and scar tissue

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Cystic Fibrosis
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Posted 12/8/2004 9:30 PM (GMT -8)
Hi, I am an 18 year old female living with cystic fibrosis and asthma. I have a few questions that i can't seem to get answered, so if anyone can help me it would be great. First off my mother got her period at 16 years old, I am 18 and have not yet gotten it. Is it possible that my cf is preventing it from coming? What should i do? 2nd) I seem to have a distended abdomen and I am very very upset, because i want a flat stomach like normal girls, but when i eat I even look pregnant. Is this a sign of cystic fibrosis? or is it just my weight gain? Will it even out if i get my period? can it be lost? finallly, I have been very very sick latley. For the past 2 years i have been sick alot I mean I have been living on steriods and antibiotics and it seems like i am immune to them. I am sick and on meds atleast 3 weeks out of every month. I went in the hospital and was fine then got sick once and cant get rid of it again. The problem is i have scar tissue in my left lung from previous infection. can anything possibly help at all? I refuse to go in the hospital every month. Can there be a surgery to go in and get rid of the tissue? any help would be greatful thanks!!!!!! :)
Posted 12/23/2004 6:19 PM (GMT -8)

HI. My name is Catherine 24 cf.

The period thing, all I can recommend is that you go see your gynocologist about it. I have had mine since I was 12, and it has always been EXTREMELY painful and very heavy, which I have been told was because of the CF.

The tummy. Don't we all wish we could have a flat tummy, but UNFORTUNATELY with CF, it is a very hard thing to do. For some it is more dramatic than others. As my doctors always say, exercise (blah ;-) ) is the best that you can do, besides take your pancrease and other medications. Steriods, like prednisone, will also help extend your stomach, as one of the side effects is that you are always hungry.

And again...unfortunately...as the disease progresses we all will become sicker and our bodies will not react the same to the antibiotics as for some we become tolorant to them. You can try some healthy things like taking MSN, which is sulfur, to try and boost your immune system. (it will also make your bones stronger for the osteoporosis) Talk to you doctors and see what they suggest about helping to boost your immune system, besides doing the incredible amount of antibiotics and steriods. Look around your environment and see what can be changed that could possibly be helping to contribute to you being sick. Like, are there a lot of smokers around you, etc...

That's all I can suggest right now. Hope it helps a little

Posted 1/12/2005 3:23 PM (GMT -8)

Hey my name is Leslie and I'm 25 female with cf.

I, too, have had some issues with my physical appearance.  I've always been really freaked about getting the cf 'hump back' thing.  And along with having the extended stomach.  I've always been really self concscious about having scars on my stomach along with a tube feeding button that I've had since I was in the 5th grade, try explaining that when making out with a boy for the first time.  And I have a scar on both sides of my chest from port placement.  And now I'm getting ready for the biggest scar of all, the double lung transplant scar all the way across my chest.  Don't worry you're not alone in worrying about these things.  Sometimes I think God I should just be greatful to be alive, I shouldn't worry about the vain stuff.  But we all do.  It does get easier and you do learn to love your body.  I was always embarrassed because I'm very thin and didn't develop when all my friends did.  But honestly now, guys really don't care about that stuff.   And about the period thing, I got mine at 15 and it was really sketchy the first couple of years, I'd go months without one, but now they're pretty regular and I don't have bad cramps or anything.  I would see a gynecologist.  I'm sure your cf dr can recommend one that works with other cf patients. 

If you'd like to talk please email me at lcourtney23@cs.com.  Leslie!!!

Posted 2/5/2005 11:57 PM (GMT -8)
My periods arnt normal and i am 21 wiht CF. My stomache makes me look like im pregnant after i eat too. It sucks. The period thing i dont know what is wrong with me, i never really bleed, its real rare. but it can be due to weight, so if u dont weight the normal weight you mgiht not get your period. ANd if u are takin steroids, u might not have enough estrogen and have to much testortrome. I just recently had that checked and i was lackin estrogen. I think the steroids have had a big impact on my image. They have made me grow alot of hair where i dont usually get hair and my periods are not normal anymore. I think steroids have a big lasting effect. You should see a gynocologist and ask about ur estrogen since u were on alot of steroids and havnt had ur period.
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