Female Question

[JENNYC]

OK ladies....Abby has had labial adhesions since she was little. It's where her female parts adhere to themselves and close up. My cousin just mentioned to me that her child has them. I have always had CF in the back of my mind when talking to her and even suggested that she get her daughters tested as they are always getting pneumonia and just look frail and sick all the time. Well I called her a minute ago and she is was putting her Pre-K kid on oxygen. So I immediately asked why and she said that her oxygen levels were bouncing between 40-60!! She also told me that she had been hospitalized for pnuemonia repeatedly last year! (we don't see each other often or get to talk) I told her she needed to call the Dr immediately and let them know that she has a close family member that has CF. So they are but while we were talking she mentioned her daughters labial adhesions. I am now curious if lack of estrogen is a CF problem? I have read where it is caused from a lack of estrogen so now I am thinking since CF clogs up everything maybe it clogs up what ever makes estrogen. I have googled until I am blue in the face and can not find anything connecting CF and lack of estrogen. Any thoughts ladies or experience with this? Thanks

 

[Kaethe108]

Well, I dont know what these adhesions are, but estrogen is mostly produced by the ovaries. There is no gland that could be clogged.

 

[jaimers]

I know there were some studies done (or initial small trials showed a need for some studies to be done) regarding the affect of menstrual cycles on lung function but i don't think that low estrogen specifically was an initial finding, though i could definitely be wrong about that. google cf and menstrual cycles and you'll find quite a bit of material. Has your daughter's CF doc thought there was any correlation between her labial adhesions and cf?

 

[JustDucky]

I don't know about the estrogen component and CF, but if her oxygen levels are as low as you say, she had better be taking her girl to the hospital (if she isn't there already) and push for CF testing. I hope that they find answers soon

Jenn 41 wCF

 

[JENNYC]

Thanks everyone! No I have asked the CF team before and they refer me to her Pediatrician. And my cousins daughter is in the hospital now. Very scary...she was blue and lathargic. They are telling her that they need to remove her tounsils and adnoids. I just couldn't help but wonder if CF had something to do with the adhesions :/ I will google menstrual cycle and CF and see what I can find....thanks for the advice!! Love our CF community!!

 

[cabadie1]

My daughter has that as well. Our CF team also referred us to her pediatrician. They gave me the estrogen cream, in which it did open up. This was last year and has since closed up. I plan on scheduling another apt to try it once more. I have often wondered the same thing you have mentioned.

 

[Helenlight]

Hi,

I truly hope your cousin's daughter gets tested ASAP, It would be sad to see her get tonsils and adenoids removed when she is simply getting the wrong treatment (if she has CF, which sounds likely). Can you refer your cousin to the nearest accredited CF centre? It's so important for her daughter's health that she pushes for this.

I don't have experience with the labial adhesions, but I am aware that CF causes vaginal mucus to be thickened, and perhaps this has something to do with it. Could you ask your Dr/specialist if a simple lube would help? If so, it could be a better option than hormone creams.

All the best xx

 

[JENNYC]

Thanks cabadie1...that is how we treat Abby's as well...hers is a reoccurring problem that...has happened about 4 times, thankfully I have learned the signs to watch for and catch it early.

Helenlight they are pushing for testing...I am trying not to push too hard as I have mentioned it several times before. But thanks