<b> Hi </b>I wanted to start a thread examining how cf affects you as a female. For me, it ties into everything: sexuality, body image, relationships, on and on. I'm hoping to start a website specifically for women with cf. Ideally it will cover the medical, social, and emotional issues that we face. My idea is for people to post questions they have, and I will then research the answers and put them on the site. So what do you want to know, and what do you have to say? .
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especially for women
- Thread starter scarlett
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wow, this is an awesome idea! a website!well, there's the issue of antibiotics and how they can make you an yeast infection and dryness. i hear a lot of CF girls/women complaining about it. there's how some girls/women with CF, when they cough, there's a little "dripping". [somebody here in israel does a research about CF and gynecology and she interviewed me and she asked me that, she said some complain about that happening].there's the issue of delayed puberty, how all girls have breasts earlier and periods earlier than us CF-ers, and we all know how that can be frustrating. i think all of CF women can tell a lot of stories about those issues and more...
<b> Thanks to everyone who has replied </b>I can relate to the leakage issue. Doing kegel exercises can help some. Some problems I've had as a woman with cf have been:- people thinking I'm pregnant because my stomach gets so big. strangers often just come up to me and say "when are you due?" or something like that. sometimes I pretend I'm actually pregnant rather than just being embarrassed or having to explain things.- being uncomfortable having someone do pt on me because of my breasts. After I started developing I never again let my parents give me PT. And when a guy does it, it weirds me out.- being the last girl to develop, the last one to get her period, and all that. I was so flat for so long, and then I "blossomed" so late (and quickly) that a lot of people thought I had gotten implants or was faking it.- feeling too sick to put any effort into my appearance, which just makes me feel worse about myself. I always feel better if I bother to put on decent clothes and makeup, but a lot of the time I just don't feel like I can get out of my sweats and brush my hair.- being embarrassed when i have to spit out mucus because it's "unladylike". it's worse if i don't have a kleenex and i'm just walking down the street or something. Sometimes I'll be irrereverant and "spit like a man" (think "Titanic") but othertimes I feel really vulgar.anyone with anything to add, <a target=new class=ftalternatingbarlinklarge href="mailto:scarlett212@hotmail.com">please e-mail me</a>. Your input is appreciated.THANKSscarlett
Oh what a great idea! I'm so glad to hear that I'm not the only one who has these kind of problems. Not like I really thought that I was, but just to have others to talk to is a comfort. It's also helpful to have a backing when I try to explain this kind of stuff to my boyfriend. I love him, but sometimes I feel that he doesn't take me seriously when I say, "not tonight, dear (insert problem here)." It's like the people who are close to us forget we have CF (and I'm glad that I'm a person to them and not a girl with CF) and they don't understand that it really affects every part of our bodies sometimes. I even have to remind my mom sometimes that I'm spitting in public because I have to. It sucks because not only do we have to deal with our own bodies, but having to explain ourselves makes it frusturating. Sometimes I feel like people don't believe me when I tell them stuff, like they think I'm just trying to get some sympathy. And that just pisses me off. CF is hard on all its patients, but I think women have a whole other list of problems that arise because we are women. It's really hard to be an independant and self sufficiant woman when there are times you are in so much pain you can hardly get out of bed. CF takes a toll on your relationships and friendships, work, school. This website is a great idea. Debbie
<blockquote>Quote<br><hr><i>Originally posted by: <b>scarlett</b></i>- people thinking I'm pregnant because my stomach gets so big. strangers often just come up to me and say "when are you due?" or something like that. sometimes I pretend I'm actually pregnant rather than just being embarrassed or having to explain things.- being uncomfortable having someone do pt on me because of my breasts. After I started developing I never again let my parents give me PT. And when a guy does it, it weirds me out.<hr></blockquote>i relate to both problems...i had once somebody thinking i'm pregnant at this party i went to. what's worse was that not only my stomach was swollen but i also had a shirt on that looked like a maternity shirt... and the guy i was with, who's my best friend and gay [!] was thought to be the dad. so somebody approached him and asked him when the baby's due and somebody else offered me their seat... it was frustrating. most of the time though it's frustrating because there are "Flat" days and "swollen" days and it causes an outfits problem. i cannot plan ahead for a date or anything.breasts and chest pt - was a huge problem when they started to develop. i almost couldn't have chest pt because of the aches. and it's very uncomfortable for me when my mother gives me pt. and one time in the hospital when they didn't have a female physiotherapist available and they brought me this young guy - and i was 17, very sensitive age... argh! but i think when it comes to talking about breasts we have a lot to say with no relation to CF <img src="i/expressions/face-icon-small-smile.gif" border="0">
I was reading what you said about being bloated and that people think that you are pregnant. I am going through the exact same thing. But I don't know what it is caused from. Do you? I have not always had this problem. At first it would come on for about a day or two and then go away, but now it seems as if its here to stay. So far my doctors have tested my liver, but that was't it. If you could tell me what it is caused from it would be a huge help.<a target=new class=ftalternatingbarlinklarge href="mailto:Gneeds2Speed@aol.com">bloated</a>
Hi,I'm a 30 yr old female with CF....I also have this same problem! I absolutely hate it! It makes wearing jeans very uncomfortable! When I get them to fit in the waist...they dont fit anywhere else. It seems like I have had this problem for as long as I can remember! Guess we're all in this together heh?Dea
I agree with the bloating thing. I have the same problem as drea if i find jeans to fit my waist they are baggin in my butt and legs. I hate to go shopping. As for the vaginal yest infection thing lucky i havent had any much to the suprise to my doctors but i do have topical skin yeast infections which make my skin feel like sand paper and all red. Not the most attractive looking. But after going through 6 different meds my dermatologist put me on diflucan and it cleared up my chest and back and my cf doc and gyno like it cause it will help ward off any vaginal yeast that may pop up now that i'm on zithromax all perminatly. So if u girls are have such problems with yeast talk to your doctor about diflucan as a maintance med. I think to have a site just for us ladies with cf is a wonderfull idea. Cause lets face it men dont understand and never will.
<blockquote>Quote<br><hr><i>Originally posted by: <b>Dea</b></i>Hi, I absolutely hate it! It makes wearing jeans very uncomfortable! When I get them to fit in the waist...they dont fit anywhere else. <hr></blockquote>This is the type of thing I'm trying to address on my website (which I may or may not ever actually go through with - but I'm really trying to). I have an entire section on how to dress to hide bloat. I've found that low waist jeans fit the best and the most often. The advantage of a higher waistband for me is that I roll my jeans at the top when I have a stomache, and the way they dig makes it feel a lot better (bizarre but true!) On my worst days in terms of stomach size, I tend to go for a cute stretchy skirts with a big sweater, or empire-waisted dresses. I still have no idea how to actually stop the bloating from happening in the first place. I have a rather unusual problem (for CF, that is) in that I can't take laxatives because I'm recovering from bulimia and I used to be addicted to them. I have to get by on less intense methods like citrucel and plenty of fiber. Eventually I think I'll have to accept that I'll never have Britney Spears' stomach and that my little buddha belly is cute in its own way . . . however, I'm talking just a little bit of a stomach, not like the 7 months pregnant look. But for the times when I really do look like a mum-to-be, I've mastered the art of getting people to give me their seats of the subway!thanks to everyone for replying!~scarlett
going on with the bloating theme---how does it go with you ladies? does it seem to be related to what/how much you eat, bathroom, lung condition? and how long do the bloated phases last?with me it seems there's no obvious indication. i can start the day flat like britney spears and end it looking five months' along pregnancy, but the next day be at my usual again. my usual condition is a little tummy, which i think isn't CF-related but a result of genes, my maternal grandmother was thin and had a great body but had tummy. and it doesn't seem to be related to anything, foods, bathroom, lungs, whatever.
There are two reasons I can think of for this problem. If you are not taking enough emzymes you are excreting to much and this causes bloating. The other is a yeast build up in your digestinve system. Try yogurt or acidophillus tablets. The tablets can be purchased at grocery stores.Shannon
Hi, I think that a web site for women with CF is a great idea. I have had a lot of problems with women issue so to say. Right now I am to sick to really exercise and I have the bloated look and I hate it. I also hate that I am just to tired to worry about my appearance and that makes me feel bad because I want my husband to be proud to show me off, but I never feel that nice looking right now. I also have the dripping from coughing fits, and this is not an easy thing to deal with. I have also noticed that right before my period I get really congested and my breathing gets whacky on me. Anyway, I wanted to say I think it would be a great idea to have a web site to go to and ask questions about women things. I can't wait to see the web site up and running. Good Luck!!!!Melissa 29 w/CF and MRSA
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i> I have also noticed that right before my period I get really congested and my breathing gets whacky on me. Melissa <hr></blockquote>i heard that happens to quite a lot of CF women. ladies - how about periods? are you regular? and did you get it relatively early/late as your peers? i'm very irregular and once i didn't have my periods for 6 months, without any apparent reason, and then it just came back. also i got mine very late, at 14 and 8 months when i was already fully developed and my girl friends who were younger had theirs already. and to add to it, my mother started her periods when she was 12. so i was really late.
Hello, I have very irregular periods they I can go 2 months without one and then get one that lasts for about 2 weeks. I had my first period when I was 14 and 3 months. My sister had her first one when she was 12 years old. Just thought I would add my 2 cents. Melissa 29 W/CF and MRSA
Hi Melissa, Have you considered Yoga? It has been a very easy way for me to reduce stress and keep fit. You can start very simple, and do it right at home. I study hatha yoga, which focuses more on the streatching and breathing rather than buring fat like some of these modern yoga classes. The breathing can be a little challenging if you aren't feeling well, but it also helps with airway clearance. I do my yoga routiene for about half an hour after I do my pulmozyme. and afterwards, I feel more relaxed and limber. It helps stretch those muscles that you pull during coughing fits, and the best part is that you can taylor it to your needs, and go at your own pace. This is a good website with step by step yoga postures, but buying a simple video is a good start. <www. santosha.com/asanas/asana.html>You ladies with the irregular periods should have the obgyn check you. I know CF might affect your cycle, but better safe than sorry. Perhaps a birth control would help regulate them. I am on the Depo-provera shot and have responded ideally. Also, this type of bc does not go through our digestive system and is less likley to encounter problems, plus you only have to worry about it once every three months! And it is less likley to be affected by antibiotics. If you are bloating, it is most likley caused by enzyme defficiancy, or that they are deactivated by stomach acid. Take tums every day, or have your doctor prescribe an antacid. Also, you may have a CF diabeties issue. <a target=new class=ftalternatingbarlinklarge href="https://www.santosha.com/anasas">null</a>
I just wanted to mention that in the october <i> Glamour </i> there is a tiny little blip about a 30 yr. old woman with cf who had a lung transplant. I think it's always good to see cf getting publicity, especially in something so wide-read. <i> Glamour </i> also did an article on Laura Rothenberg a few months back, and in general have good women's health coverage. In the current issue there's a really interesting article by Jamie Weisman about whether a woman with a serious illness has a right to be vain, for example should she be worried about wrinkles or just insanely thankful that she's had the opportunity to age? It was a fabulous piece, I thought . . . Well, I've had my period for almost 4 years and its still highly irregular. I had my estrodile tested and it was normal. I didn't get it until I was 15 and a half but my mom (non-cf) also got hers kind of late. thanks again to everyone who has replied!~scarlett
<blockquote>Quote<br><hr><i>Originally posted by: <b>scarlett</b></i> In the current issue there's a really interesting article by Jamie Weisman about whether a woman with a serious illness has a right to be vain, for example should she be worried about wrinkles or just insanely thankful that she's had the opportunity to age? <hr></blockquote>that's a really interesting debate topic. how do you ladies feel about that?