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Old 02-17-2010, 07:33 PM   #1
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maxie7 HB User
Question pectus excavatum

Hi everyone
I'm a 24 yo woman Pectus Excavatum. I don't think it is severe, maybe moderate judging by the pics I have seen on the net. I guess I'm looking for info and support. I don't think I want to have invasive surgery to correct it, I was just wondering what non-surgical or minimal surgery methods are out there? I've scoured the net and I've found a brace that can be worn, but would involve a trip to Brazil. I also found something about a magnet that is supposed to lift the sternum out gradually. I don't have a lot of money and I live in Australia so traveling overseas is probably not an option for me. Any other methods? like physio? Or a brace that is not as far away as Brazil?
Also looking for female support. I have so many problems finding bras that fit and it's so humiliating getting fitted by those beautiful girls with perfect bodies. Anyone else have problems with bras? Any tips/suggestions?
Also - this is very embarrassing to write here publicly - I have saggy boobs. I don't know if this is a side affect of PE or years of ill-fitting bras. I have had 2 children but my breast were saggy before I had them, even in my teen years. I've worn supportive bras from the age of 11 so a lack of bras is not the problem. Any ideas/experiences?
I did not have PE from birth - pictures of me as a young child show a normal chest. I think I developed it in the early-mid adolescent years. I don't know if it's relevant but I also have over-developed muscles (the muscles that connect the neck to the shoulders, gives me a slanted shoulder look) and undeveloped muscles in my back between my shoulder blades and also in my upper arms and chest. Could this have something to do with my PE and my breast issues?
I have had a heart murmur (found when I was 14 thought to be caused by puberty growth spurt but I still have it) and I think limited lung capacity (as I have trouble doing things like exercise or blowing up a balloon) I also have heart palpitations sometimes but don't know if these things are caused by or just co-exist with my PE. I would like to be able to exercise more easily. I am wondering will these things worsen as I get older or is it possible that I will get additional heart or lung problems (as my PE is not severe) will my general quality of life or life expectancy be different because of PE?
Will my lung capacity and other problems be fixed or improved with corrective measures?

Thanks for taking the time to read

 
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Old 02-24-2010, 08:10 PM   #2
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ncstategal HB User
Re: pectus excavatum

Quote:
Originally Posted by maxie7 View Post
Hi everyone
I'm a 24 yo woman Pectus Excavatum. I don't think it is severe, maybe moderate judging by the pics I have seen on the net. I guess I'm looking for info and support. I don't think I want to have invasive surgery to correct it, I was just wondering what non-surgical or minimal surgery methods are out there? I've scoured the net and I've found a brace that can be worn, but would involve a trip to Brazil. I also found something about a magnet that is supposed to lift the sternum out gradually. I don't have a lot of money and I live in Australia so traveling overseas is probably not an option for me. Any other methods? like physio? Or a brace that is not as far away as Brazil?
Also looking for female support. I have so many problems finding bras that fit and it's so humiliating getting fitted by those beautiful girls with perfect bodies. Anyone else have problems with bras? Any tips/suggestions?
Also - this is very embarrassing to write here publicly - I have saggy boobs. I don't know if this is a side affect of PE or years of ill-fitting bras. I have had 2 children but my breast were saggy before I had them, even in my teen years. I've worn supportive bras from the age of 11 so a lack of bras is not the problem. Any ideas/experiences?
I did not have PE from birth - pictures of me as a young child show a normal chest. I think I developed it in the early-mid adolescent years. I don't know if it's relevant but I also have over-developed muscles (the muscles that connect the neck to the shoulders, gives me a slanted shoulder look) and undeveloped muscles in my back between my shoulder blades and also in my upper arms and chest. Could this have something to do with my PE and my breast issues?
I have had a heart murmur (found when I was 14 thought to be caused by puberty growth spurt but I still have it) and I think limited lung capacity (as I have trouble doing things like exercise or blowing up a balloon) I also have heart palpitations sometimes but don't know if these things are caused by or just co-exist with my PE. I would like to be able to exercise more easily. I am wondering will these things worsen as I get older or is it possible that I will get additional heart or lung problems (as my PE is not severe) will my general quality of life or life expectancy be different because of PE?
Will my lung capacity and other problems be fixed or improved with corrective measures?

Thanks for taking the time to read
Hi, I'm a 31 year old female and have moderate pectus excavatum. I'm in a similar position in which I would like to correct the issue, but donít want to go through the surgery considering the risks. My understanding is that we donít see the pectus problem until we hit puberty and start growing more. Then the two sides of the rib cage donít grow at the same rate, and the chest goes in. I have always been on the tired side, but it got worse when I got into my early/mid 20s. I developed a heart murmur, a tricuspid valve prolapse and a mitral valve prolapse. This gives me chest pains and heart palpitations on occasion. I also have a tendency to pass out if I'm standing up for too long (which is more of a vasovagal issue). I also have issues working out and doctors aren't sure if it is asthma or my heart/pectus issues. I can be a bit Type A, so if I really push, I can build myself up over time enough to run a bit. Also, I have the same muscle issue that you do! My shoulders slope due to bad posture and I have no muscle in my upper back, especially between my shoulder blades. So...as for corrective ideas...from my understanding, the magnet is still in clinical trials; however, there are a few places that now build braces. I have found one person in Canada (http://www.pectusbracing.ca/) and I have heard rumors of someone in England building braces. I have heard that rolfing or other massage therapy or yoga can help with posture issues, which in turn may help with the appearance of pectus issues and shoulder issues. I'm now starting to include lift more weights for my back so I have yet to see if that helps. I've heard swimming can also help, but I never saw a difference when I used to swim. I hope that helps a bit...just know that there are tons of us women out there going through the same thing you are...and..it isn't just a cosmetic issue! Feel free to post some questions if you have any for me!

Last edited by ncstategal; 02-24-2010 at 08:17 PM. Reason: mistyped words

 
Old 03-16-2010, 06:22 PM   #3
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ceo408 HB User
Re: pectus excavatum

Quote:
Originally Posted by maxie7 View Post
Hi everyone
I'm a 24 yo woman Pectus Excavatum. I don't think it is severe, maybe moderate judging by the pics I have seen on the net. I guess I'm looking for info and support. I don't think I want to have invasive surgery to correct it, I was just wondering what non-surgical or minimal surgery methods are out there? I've scoured the net and I've found a brace that can be worn, but would involve a trip to Brazil. I also found something about a magnet that is supposed to lift the sternum out gradually. I don't have a lot of money and I live in Australia so traveling overseas is probably not an option for me. Any other methods? like physio? Or a brace that is not as far away as Brazil?
Also looking for female support. I have so many problems finding bras that fit and it's so humiliating getting fitted by those beautiful girls with perfect bodies. Anyone else have problems with bras? Any tips/suggestions?
Also - this is very embarrassing to write here publicly - I have saggy boobs. I don't know if this is a side affect of PE or years of ill-fitting bras. I have had 2 children but my breast were saggy before I had them, even in my teen years. I've worn supportive bras from the age of 11 so a lack of bras is not the problem. Any ideas/experiences?
I did not have PE from birth - pictures of me as a young child show a normal chest. I think I developed it in the early-mid adolescent years. I don't know if it's relevant but I also have over-developed muscles (the muscles that connect the neck to the shoulders, gives me a slanted shoulder look) and undeveloped muscles in my back between my shoulder blades and also in my upper arms and chest. Could this have something to do with my PE and my breast issues?
I have had a heart murmur (found when I was 14 thought to be caused by puberty growth spurt but I still have it) and I think limited lung capacity (as I have trouble doing things like exercise or blowing up a balloon) I also have heart palpitations sometimes but don't know if these things are caused by or just co-exist with my PE. I would like to be able to exercise more easily. I am wondering will these things worsen as I get older or is it possible that I will get additional heart or lung problems (as my PE is not severe) will my general quality of life or life expectancy be different because of PE?
Will my lung capacity and other problems be fixed or improved with corrective measures?

Thanks for taking the time to read
I'm about to turn 20 years old, and just discovered that what I have is called Pectus Excavatum. I have always had what I referred to as my hole, for as long as I can remember. It never bothered me until I started getting boobs, and like yours, mine are saggy (which they shouldn't be at my age) and one is slightly bigger than the other. I've also noticed that my left ribcage sticks out more than my right. And I have always attributed my shortness of breath to being out of shape or allergies, but after reading about PE, I'm starting to think that it might be the cause. I made an appointment with my doctor for next week to ask her advice on what I should do, but I'm not sure if she'll be any help because it seems that most doctor's I've been to don't recognize it, because they have never once offerred me any explanation.
I guess I'm replying to see if you have done anything for it yet? Because I am starting to be really bothered by it. I don't wear swinsuits in front of anyone, I have the hardest time finding a bra that fits right, and I'm mostly just incredibly self conscious about it. This is embarrassing, but I am too nervous to do anything more than makeout because I don't want anyone to see what's under my bra. Do you think any insurance companies will cover a breast augmentation? Or should I look into the entire PE corrective surgery?
What did you decide to do, if anything yet? OR what are you thinking of?

 
Old 03-17-2010, 01:27 PM   #4
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maxie7 HB User
Re: pectus excavatum

Hey thanks both of you for your replies
I haven't done anything about it yet, I'm thinking my first course of action will be to see my doctor. I'm thinking about going to a physio to see if they can help with my overdeveloped/underdeveloped muscles. I'm also hoping that if I build up some muscles in my chest I might help the boob problem. Ceo408, I'm self conscience about my boobs too, but my hubby always says they're great, he might just be saying that coz he's my husband, but my body hasn't changed much since we first got together (except for having 2 kids!) so I think he wouldn't have stayed with me if he found me repulsive If you find the right guy he'll love your boobs too it's soo hard though being a young woman with saggy boobs and a hole in ya chest i know! All other girls our age are flaunting their bodies and looking hot, and well I personally just don't feel sexy at all.

ncstategal, I'll reply to your post later on I'm sorry I gotta run now!

 
Old 03-17-2010, 01:33 PM   #5
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Re: pectus excavatum

I don't know of any females with this but I do know of 2 males, both currently teenagers and they both had corrective surgery here in the states, somewhere in Virginia. One has had the brace removed already and the other will have it removed this summer. Both seem to have done quite well...of course, they were both around 12 or so when the surgery was done.

 
Old 03-21-2010, 07:05 PM   #6
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ncstategal HB User
Re: pectus excavatum

Quote:
Originally Posted by ceo408 View Post
I'm about to turn 20 years old, and just discovered that what I have is called Pectus Excavatum. I have always had what I referred to as my hole, for as long as I can remember. It never bothered me until I started getting boobs, and like yours, mine are saggy (which they shouldn't be at my age) and one is slightly bigger than the other. I've also noticed that my left ribcage sticks out more than my right. And I have always attributed my shortness of breath to being out of shape or allergies, but after reading about PE, I'm starting to think that it might be the cause. I made an appointment with my doctor for next week to ask her advice on what I should do, but I'm not sure if she'll be any help because it seems that most doctor's I've been to don't recognize it, because they have never once offerred me any explanation.
I guess I'm replying to see if you have done anything for it yet? Because I am starting to be really bothered by it. I don't wear swinsuits in front of anyone, I have the hardest time finding a bra that fits right, and I'm mostly just incredibly self conscious about it. This is embarrassing, but I am too nervous to do anything more than makeout because I don't want anyone to see what's under my bra. Do you think any insurance companies will cover a breast augmentation? Or should I look into the entire PE corrective surgery?
What did you decide to do, if anything yet? OR what are you thinking of?
Hi ceo408, I am heading to Canada in May to get fitted for a brace to correct my pectus issues...if you are interested, I'll keep you posted on the progress. I didnt know I had pectus excavatum until I was about 22 and started having more health issues. I just knew I looked different than other people. At 18 I was diagnosed with asthma, which gets much worse with exercise, and allergies (environmental, food and chemical allergies). Then, in my early 20s, I was diagnosed with a heart murmur, mitral valve prolapse, tricuspid valve prolapse, a vasovagal issue, and raynaud's syndrome. I have seen a neurologist, a rheumatologist, and a genetic counselor to make sure I dont have anything else going on do to some other health issues (my doctors wanted to rule out marfan's, rheumatoid arthritis, lupus, etc). So, I have a bunch of annoying little things wrong with me but nothing "major." This year, I actually quit taking all of my inhalers except for when exercising and I feel much better!! I'm guessing I dont have true asthma. So, anyhow, just like you, my left side sticks out more than my right, which seems to be how most of us are. I had a CT scan and it showed that my rib cage is "pushing" on my heart, which is one reason why I (and most people with PE) have low exercise tolerance. And as for the breast issue, I just dont have much! I'm assuming breast issues are part of PE too since every female with PE seems to have an issue. That would be super awesome if insurance covered corrective procedures. I've never known anyone to think that I needed to have cosmetic surgery, but if it would make you feel confident, then it would be 100% worth it!

 
Old 03-22-2010, 11:22 AM   #7
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Re: pectus excavatum

Quote:
Originally Posted by ncstategal View Post
Hi ceo408, I am heading to Canada in May to get fitted for a brace to correct my pectus issues...if you are interested, I'll keep you posted on the progress. I didnt know I had pectus excavatum until I was about 22 and started having more health issues. I just knew I looked different than other people. At 18 I was diagnosed with asthma, which gets much worse with exercise, and allergies (environmental, food and chemical allergies). Then, in my early 20s, I was diagnosed with a heart murmur, mitral valve prolapse, tricuspid valve prolapse, a vasovagal issue, and raynaud's syndrome. I have seen a neurologist, a rheumatologist, and a genetic counselor to make sure I dont have anything else going on do to some other health issues (my doctors wanted to rule out marfan's, rheumatoid arthritis, lupus, etc). So, I have a bunch of annoying little things wrong with me but nothing "major." This year, I actually quit taking all of my inhalers except for when exercising and I feel much better!! I'm guessing I dont have true asthma. So, anyhow, just like you, my left side sticks out more than my right, which seems to be how most of us are. I had a CT scan and it showed that my rib cage is "pushing" on my heart, which is one reason why I (and most people with PE) have low exercise tolerance. And as for the breast issue, I just dont have much! I'm assuming breast issues are part of PE too since every female with PE seems to have an issue. That would be super awesome if insurance covered corrective procedures. I've never known anyone to think that I needed to have cosmetic surgery, but if it would make you feel confident, then it would be 100% worth it!
I would appreciate it if you could let me know how the brace is. I'm going to my regular doctor this week to see what she thinks, hopefully she can tell me whether or not mine is too serious. I'm positive that I don't have a major issue, just little things that I thought were because of allergies or something. Thanks for everyone's updates. It's nice to know that I'm not the only one thinking these things!

 
Old 03-29-2010, 07:20 PM   #8
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riky HB User
Re: pectus excavatum

i currently suffer from pectus, i am 34 year old male, 34 years of hell from this disorder. it has completly dominated my life and activities and after it all i am just tired of it. i found a wonderful woman to mary and raise kids with that alegadly can over look pectus, but I always face insecurity issues in our marriage about it. I suffer from depression and often feel like throwing in the towel from this crap. I had an appointment in July of 09 and they said they could make me normal with an implant. cost is 8500.00
I have a fairly good carreer just not a good speller. lol. any way in this nice economy i can not come up with the money. fustrating to be normal at a price, my advice to you would be see a plastic surgeon as they can make you an implant to live a normal life. I wish you the very best of luck and I hope to all with this condition to find a way to be normal. I feel so much for women as hiding this has to be so hard with boobs. it is the focus for most men unfortunatley. I hope you may get your surgery and honey, get some great big breasts to go with it and please go to mardi gra and uleash the beasts as it would undo years of hell.

 
Old 05-02-2010, 11:18 PM   #9
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sjmor HB User
Re: pectus excavatum

To ceo408...I am the same age as you and have pretty much exactly the same description as you..I honestly could have written what you said word for word :S. Even though I have become more confident as a person, I am more self-conscious of this problem than ever and I am having trouble coming to terms with the fact that it will never change. I had to have my jaw broken and fixed (bad underbite) when I was 15, and that was so painful I could never imagine voluntarily having any other bones moved around. I'm going bra shopping tomorrow..I've been putting it off for a while and have no remotely good ones right now, but every time I go bra shopping I become so depressed and embarrassed. As for guys, what I have experienced is they really don't care but I feel so awkward explaining it to a guy, and I will never believe that they don't find it weird at all. I live in cottage country, so I'm surrounded by lakes and I love swimming but I don't think I'll be up for putting on swimsuits very often for the rest of my life...I feel as though it has become more noticeable in the last year and a bit. Anyway, let me know if you come up with anything, custom made bras are just so expensive! Wish my luck on my shopping endeavors...

 
Old 01-30-2011, 10:39 PM   #10
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scannon212 HB User
Re: pectus excavatum

Hi all,

I am a 29 year old female and I too have PE. I had the nuss procedure done 2 years ago and still have my bars in place- they will probably be in for another 1-2 years given the severity of my PE (I was a 5.9 and breathing with 70% of my lung capacity according to pre-surgery tests.) I have had all kinds of frustrating issues crop up since I had my surgery, but I would do it again if I had to choose over.

Before I chose to have surgery, my doctor made me talk to several of his other patients to get to know what it would be like as well as possible. This helped me tremendously and I'd like to pass it on to others now. If anyone is considering having the nuss done (especially the ladies out there) I will happily answer questions for you and share my experiences. I will be candid because I think it's important you know what you are signing up for- and it isn't easy. For me it was worth it but you'll have to decide for yourself. < edited > For me it was really hard to talk about before- I was really embarrassed about it and didn't even want to talk to my Mom about it, let alone doctors, friends, co-workers... but most people tend to be really supportive.

Good luck to you all- please know you are not alone. PE is very common, but rarely talked about, so most people who have it are left thinking they are just weird or deformed. So not true- there are lots of us out there.

Last edited by hb-mod; 01-31-2011 at 12:37 AM. Reason: Please don't post personal information such as email, phone number or real name.

 
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Old 02-17-2011, 01:00 PM   #11
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ncstategal HB User
Re: pectus excavatum

For anyone who is interested, I have been wearing my brace about 10 hours a day for the last 8 months now and I am slowly seeing a shift in my ribs. It is going to take about 3 years of wearing it to see the finally results (just like an adult getting braces on their teeth), but I am very optimistic. In the last couple of months, I have been able to start running a little bit with only mild chest pains/palpitations. I think if my left rib didnt stick out so much, I may be able for wearing bathing suits and look somewhat normal. Also, I noticed there are tons of silicone breast forms available now in many different shapes, which would greatly help ladies like me, if you know what I mean. It is bad enough to have a big indentation in the middle of your chest and ribs sticking out, but then to worry about looking feminine and trying to find clothing that fits is not fun. I bet a teardrop or asymmetrical shape would help alot....fingers crossed!

 
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Old 02-28-2011, 03:46 AM   #12
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illest HB User
Re: pectus excavatum

Quote:
Originally Posted by scannon212 View Post
Hi all,

I am a 29 year old female and I too have PE. I had the nuss procedure done 2 years ago and still have my bars in place- they will probably be in for another 1-2 years given the severity of my PE (I was a 5.9 and breathing with 70% of my lung capacity according to pre-surgery tests.) I have had all kinds of frustrating issues crop up since I had my surgery, but I would do it again if I had to choose over.

Before I chose to have surgery, my doctor made me talk to several of his other patients to get to know what it would be like as well as possible. This helped me tremendously and I'd like to pass it on to others now. If anyone is considering having the nuss done (especially the ladies out there) I will happily answer questions for you and share my experiences. I will be candid because I think it's important you know what you are signing up for- and it isn't easy. For me it was worth it but you'll have to decide for yourself. < edited > For me it was really hard to talk about before- I was really embarrassed about it and didn't even want to talk to my Mom about it, let alone doctors, friends, co-workers... but most people tend to be really supportive.

Good luck to you all- please know you are not alone. PE is very common, but rarely talked about, so most people who have it are left thinking they are just weird or deformed. So not true- there are lots of us out there.


Yo i'm a 23 male with moderate pectus. I also assume its moderate due to the pictures i've seen. Is your pectus returning to normal with the nuss procedure? I would love to go through with the nuss procedure but i've been reading that its not recommended for people over a certain age because the sternum and chest begins to harden.. would love to know if you see improvements, because i'm constantly thinking about my pectus throughout the day.. its such a sore.. and you're right it is hard to talk about it with anyone, but i feel like if i don't i'm gonna live with it forever. Thanks.

Last edited by illest; 02-28-2011 at 03:50 AM.

 
Old 02-28-2011, 03:48 AM   #13
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illest HB User
Re: pectus excavatum

Quote:
Originally Posted by ncstategal View Post
For anyone who is interested, I have been wearing my brace about 10 hours a day for the last 8 months now and I am slowly seeing a shift in my ribs. It is going to take about 3 years of wearing it to see the finally results (just like an adult getting braces on their teeth), but I am very optimistic. In the last couple of months, I have been able to start running a little bit with only mild chest pains/palpitations. I think if my left rib didnt stick out so much, I may be able for wearing bathing suits and look somewhat normal. Also, I noticed there are tons of silicone breast forms available now in many different shapes, which would greatly help ladies like me, if you know what I mean. It is bad enough to have a big indentation in the middle of your chest and ribs sticking out, but then to worry about looking feminine and trying to find clothing that fits is not fun. I bet a teardrop or asymmetrical shape would help alot....fingers crossed!
ncstategal, i wish you the best.. how old are you and where did you get the brace?

Last edited by illest; 02-28-2011 at 04:02 AM.

 
Old 03-01-2011, 09:09 AM   #14
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ncstategal HB User
Re: pectus excavatum

Quote:
Originally Posted by illest View Post
ncstategal, i wish you the best.. how old are you and where did you get the brace?
Thanks! I'm 32. I went to Advanced Orthodynamics in Canada (outside of Toronto) for the brace.

Considering the brace is cheaper than the surgery, I decided to take this route. Plus, I've had half a dozen other surgeries (non-PE related) and am not thrilled about the idea of recovering from another one.

The orthotist explained that bracing for the ribs is similar to bracing teeth. It is still possible in adults; however, it takes longer to move the bones. It took me a solid 6 months of regularly wearing the brace about 10 hours a day (you can sleep in it) to see a change and I'll most likely be wearing it for 3 years (if I follow the directions of wearing it daily and doing a breathing exercise). The change must be someone noticeable because my sister notice that you couldnt see my ribs sticking out when I was wearing a slightly fitted shirt. I still have a long ways to go though until I look "normal." It may never get perfect, but the goal is for it to not be noticeable.

The lower ribs on my right side definitely stick out more than my left and I have one rib that almost overlaps the one above it. The brace fits over the protruding area on both sides and pushes them in. The goal is to have the middle start to pull out as the lower ribs push in.

Good luck to you!

< edited >

Last edited by hb-mod; 03-01-2011 at 09:44 AM. Reason: Please don't post unapproved website links, per Posting Policy. Thanks.

 
Old 03-03-2011, 01:49 PM   #15
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tooshytosay HB User
Re: pectus excavatum

Would love to have a chat with other women with PE. Outwardly I have a very full and active life and seem very happy. Inwardly my PE rules - it dictates what activities I do alone or with other people ( I feel I would be so much more sociable if I didn't always think ahead as to whether an activity might risk having to expose cleavage ie. clothes shopping with friends, getting dressed for fancy dress, beach, swimming, saunas etc) and it means I feel I've never dressed in the way I really would if I could choose anything. I went to the doctor once but it was such a big deal to admit to her how much it bothered me - I was in tears - and all she said was "there are plenty of high necked tops you can buy"!!!! I don't think anyone can understand how this is probably the thing that has shaped my life and character the most and yet no one knows about it (my partner has obviously seen it but has never mentioned it and nor have I)

 
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