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A Serious Look At Macromastia Medically From A Victim's Viewpoint

Having suffered from this condition for quite a number of years, I am going to to share some of what I have learned. Remember that I am not a doctor or medical professional and that all this is just personal opinion.

Since this condition started in seventh grade, I have been to many many doctors, gynecologists, endocrinologists, plastic surgeons and many other specialties. I have seen top notch doctors in both the US and the UK. Sometimes, I have traveled to distant cities in the US or the UK just to see a specific specialist. I have been examined, probed, scanned, tested and analyzed. So I think I have learned enough to be able to make some observations.

One thing that I have noticed is that macromastia crosses many medical specialties- No one area of medicine focuses on it; this, plus the fact that it is rare, not fatal, and involves mostly (but not entirely) women, has resulted in a minimum of research into macromastia and its treatment and causes. It just isn’t a ‘popular’ condition to study.

Besides the doctors I have seen, I have spent many hours reading all I can about the condition. I believe that I have read almost all the articles available that touch on macromastia. When I read a technical article, I look up the words I don’t understand, so by the time I am finished with it I have a real understanding.

In important addition to this, I have met and become friends-- or at least acquaintances-- with about a dozen other young women with this condition. Some I have met in school or in my local area. Although the approach is difficult or impossible for a man, it is easy for me to approach another girl with macromastia. I have never failed to make a friend of a girl I met and wanted to talk to. The talks almost always starts with clothes and ends with talking about men.

I was a member of an internet group which studied macromastia, now shut down, and I met several girls there. Two of them lived close to me enough for us to get together and I see then about once a month.

There is also another internet group especially for for girls and women with macromastia, and their medical professionals. It is a closed group and is only for women. You have to be authenticated by a doctor to get in. But since it is private, there is a very free exchange of photos, experiences and information. This group is still very active. Three girls from this group who live in the eastern US met for a weekend last month. They got many stares.

Combining the information I have acquired over the years from my own experience and these other sources, I find that there are some obvious conclusions.

It is very important to distinguish between macromastia and simply big breasts. Breast size is on a bell curve like many other things. Breasts can be very large and still be normal breasts. In other words, normal and average are not the same thing. For every AA cup there is a DD cup, so to speak. Big breasts on big (i.e., fat) women are usually not macromastia either. They are just fat.

The first thing that I have invariably noticed is that normal breasts, even very large normal breasts, stop growing at some point. They then don’t get much bigger. Macromastia breasts, on the other hand, continue to grow from the precipitating event onward. Whether the growth starts at puberty, stress or pregnancy, the breasts grow. The growth rate sometimes slows, but always continues. For example, I am growing only about a cup size every two years now, and hope it will slow down even more. So that’s one differentiating factor between large but normal and macromastia-- continued growth.

The second thing I notice in all my friends and research is that macromastia does not respond to dieting. Normal breasts get smaller in proportion to lost weight. But almost all the girls I know with this condition have dieted down below their ideal weight, reducing their thighs, stomach, and even neck size but their breasts remain the same size and continue to grow. Dieting has no effect on size or growth rate;- except to make them look bigger. So if you lose breast size when you lose weight, you don’t have macromastia.

Third is size itself. There seems to be a middle ground where a girl can have normal but far above average breasts and where she has actually has macromastia. DD cups are normal and most F (DDD) cups are normal too. But when we get into some of the sizes we are talking about here, H, I, J, K, L, cups on small band sizes, that is macromastia. It is not normal. It is a deformity.

Forth is the shape of the breast. This may surprise you, but I have found it to be true in 100% of the girls I have met. Normal breasts, when they get large, grow down, in a teardrop or a pear shape. Even a very large but normal breast, say a DD, grows downward.

But macromastia breasts are not teardrop shaped, they are ball shaped. Round. Maybe not the size of basketballs but the shape of basketballs. The result in every case is that the inner edge of the left breast and the inner edge of the right breast push each other outwards More like a “T” shape than the inverted “U” or “V” shape. With the macromastia condition, the breasts push each other out and past the chest.

Here is how you can tell macromastia.. Look at the girl facing backward. With a normal breast, you will not see any breast from the rear. No matter how big they are, they are falling downward. With macromastia, looking at the back from the rear, you see two quarter moons ( or half moons) of breast tissue sticking out from either side where the macromastia breasts are pushing each other outward.

This is one of the reasons why the bras have to be custom made. The large bras sold on the internet are just big copies of smaller bras, and they don’t work because the actual shape of the macromastia breasts is much more round and ball-like than the normal breast.

The significance of this distinction between large normal breasts and macromastia is in management and treatment.

Plastic surgery is a real money maker for hospitals; breast reductions are very lucrative. To get insurance companies to pay for them, doctors convince themselves, and us, that reduction is not just a cosmetic procedure but a needed medical procedure.

Reductions from large normal breast to smaller sizes are very successful. From a DD to a C or a D to a B, even a DDD to a B or C, the operation is almost always a success. The nipple is preserved, lactation is preserved and sensation is preserved. These are the kind of reduction operations you read about all the time.

However, with macromastia there seems to me to be much less change of success. Unless growth has totally stopped, a reduction accomplishes nothing…two years later, the breast is large again, but this time it is growing around the scar tissue from the operation so it looks grotesque as well as big. Even if growth has stopped, once the reduction is from a really large size, the nipple is lost, lactation is lost and sensation is lost. A cosmetic nipple is made from other body areas, as would be done with a cancer patient, but it is only cosmetic. The reduced breasts are numb, the nipple is numb and breast feeding is impossible. One girl who had this operation wrote in anther of the other groups that it felt like her chest had been ‘paved with asphalt”. Added to the near certainty that continued growth will result in a bigger breast anyway, standard breast reduction, although lucrative for the doctor and the hospital, is not a good choice, and very few slim girls with real macromastia have it done.

The honest medical truth is, I think, that unless the breasts actually get so big that they interfere with everyday living, the choices are to live with them or have all breast tissue removed. Removing all breast tissue eliminates all future growth. After that, the girl can have a cosmetic breast built like with cancer patients, or just wear a padded AA cup.

What so many people don’t realize is that it NOT a choice of having these huge breasts or having them reduced-- if that was the choice, almost all girls with macromastia could have them reduced. With true macromastia, the choice is to live with them or loose them entirely.

That is why is is so unfair with other women say that “she must like being like that or she’d have them reduced”.

Something else, in 100% of the girls I have talked to, their macromastia breasts very very very sensitive. It is impossible to put into words how sensitive breasts get to be after they get into the macromastia size range. The alveoli are huge as is the nipple. Just the rubbing of cloth makes them erect and starts a physical sexual excitement. Once excited, a light touch is enough to send them into ecstasy. Just a guy blowing air on them is almost too much. The flick of an eyelash is about the right thing. With macromastia, the breasts become the focus of sexual stimulation as much as the clitoris is in normal women.. Not more, but as much as.

So the total loss of all breast tissue is much more of an issue to a girl who has grown up with macromastia than with a normal girl, to whom breasts are just sexual accessories. For us with this condition, they are the main event. Loosing sensation in them by total removal will profoundly affect our sex lives, and is therefore is to be resisted even more.

The result of all this is that the only intelligent decision to make if you are unfortunate enough to have this condition is to live with it, which is what most people do.

With proper posture, correct bras and the right sort of clothing, macromastia does not cause a lot of back or shoulder pain. That’s part of the pitch to get insurance companies to pay for reductions. Well fitting bra straps do not dig into the skin and a well fitted custom bra evenly distributes the weight of the breasts to the chest, shoulders, sides and back. It is not all that much of a problem once you get used to the custom bras and the custom blouses and dresses.

The biggest problems are social, and that is another story.

PLEASE add your comments to this--let’s build up a real comprehensive source of information for women with this deformity. For those of us who have this condition, or care about someone who has it, specific comments are very valuable. Let me know if you have any experiences that validate ( or invalidate) any of the five factors that I have concluded point to macromastia. Let me know your experiences with surgery, etc.

I am not going to go to the trouble of writing things like this unless everyone else contributes. Let’s really make an effort to get to know and help each other here. Guys too, you’re half of the world!




Martha1982 Martha1982 26-30, F 44 Responses Dec 2, 2011

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Adding to the discussions about medication interactions as well as soy below, I was randomly reading a book on culinary herbs, and there is one very short, out-of-the-blue paragraph in it that mentioned a class of them called "galactagogues," and then the subject was dropped. I'd never heard of the term before, and it means "substances that stimulate milk production." It lists the things that fall into that category as "anise, basil, caraway, black cumin, dill, fennel, fenugreek, and goat's rue." Whether any of this is scientifically accurate or not, I have no idea. But I do know that some of these, like basil, dill and fennel, are extremely common and show up in an awful lot of food. Is there any concrete research out there about whether or not substances in common foods can cause problems for someone has a pituitary tumor or is otherwise for whatever reasons more sensitive or more susceptible to environmental factors? Has anyone had success with dietary management -- i.e., avoiding certain foods -- as part of successful symptom control?

interesting...maybe a certain usually harmless food at a critical point in development.
probably too many variables to ever know.

Is there a link between macromastia and certain medications?

Is there a link with macromastia and lactinomas or pituitary adenomas that produce prolactin and cause lactation? If so, one may consider avoiding progesterone (as it is sometimes prescribed to correct hormonal imbalances) as progesterone may (possibly) lead to pituitary adenoma growth, breast growth and lactation in some women ( a theory to research further).

Thanks. I will pass that on.

An herb to research that also may affect lactation is Chaste Berry. I do not know if this herb has any effect on macromastia (positive or negative) but it could be looked into.

High levels of estrogen may be problematic and one may look into discontinuing soy products (again this should be carefully researched) but I have heard that soy milk and "American" produced soy products cause problems for some women with estrogenic cancers and other issues.

I was diagnosed with macromastia due to a lactinoma/pituitary adenoma that causes lactation. I chose a double mastectomy to relieve the pain over the hormone treatment that was suggested had a high likelihood of causing cancer. ( My Mom had this same condition and got breast cancer from the hormone treatment that was used to stop her lactation.) My breast tissue was very dense and I was at high risk for breast cancer. The mammograms are not well equipped to see through dense breasts.

You may consider pairing your annual a mammogram with ultrasound which has no radiation, is not painful and will provide addition images to help detect any sighn of breast cancer as early as possible.

You may decide to get a brain MRI (which is expensive but safe) to detect if you have a pituitary adenoma.

Ah, but the opposite is even more ironic. I have perfect, healthy breasts and no physical problems related to their size. Constant exercise, being very slim, and custom bras. Since I have needed crutches to walk, my upper body and back are even stronger.

So, if no possible medical reason for surgery, can't bring myself to do it for pure aesthetic reasons, so I look like a freak while you, with the mastectomy. look normal.

Hey Martha,
Here is more irony ... I decided to not have reconstructive surgery and I do not wear prosthetic breasts. My pectoral muscles were well-developed (probably from having to carry the large and heavy breasts) and so, my chest looks like a normal "male" chest if I wear a T-shirt. I do not wear prosthetic breasts of a padded bra because I like the feel of not having to wear anything under my t-shirt. Things are not perfect though - I have no nipples and I have pretty bad hypertrophic scarring (even 2 years after the double mastectomy.) I also have some pain on the left side from the scars. Still, I am fairly happy with my body and my partner is also comfortable with the change.


One very interesting thing socially that I have noticed ... I HAVE NOT HAD ONE guy harass, flirt, or stare and my "breasts" since the surgery. Before, unwanted sexual attention and even harassment by men was common (and I had only a mild case of macromastia.) It is a relief to be free from unwanted attention and harassment.

I think we get so accustomed to unwanted attention that we forget that this is not, or should not be, the norm.

I often dream that I am flat chested.

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I applaud martha for her honesty and openess about a condition that afflicts a great many women.

She has given some great insight into the difficulties faced by many of these women.

I am sure she has done her research in the area of macromastia.

I would only add the following.

www.pubmed.org

a free searchable index of every published medical journal
and article.

it has a lot of great information. Many articles are NOT free but some are.

I am very anti-soy for many, many reasons, and breast health is right at the top of the list.

Soybeans are full of phytoestrogens, which is plant based estrogen that can really screw up your hormonal system and throw many hormone levels off, not just estrogen. If you are in any way sensitive to estrogen, especially with MM problems, you MUST AVOID it as much as possible!

It takes about 5 wheelbarrows full of soybeans to cook and condense down into a 32oz box of soy milk. I know women who drink 2 of those a day!

Btw, soybeans are poisonous when raw, they must be cooked (then usually fermented). Also, Over 90% of soy produced in the U.S. is genetically modified and the crops are sprayed with the herbicide Roundup. Soy has been advertised as organic, healthy, full of good stuff… but it is really a cheap-*** weed that grows fast and inexpensively, which is easy to farm and provides gigantic profits, much like the ugly high-fructose corn syrup business model.


Some snippets from http://authoritynutrition.com/is-soy-bad-for-you-or-good/

“…In one study, infant girls fed soy formula had significantly more breast tissue at 2 years of age than those who were fed breast milk or dairy-based formula.”
“Another study showed that girls fed soy formula were much more likely to go through puberty at a younger age.”

“There is also evidence that soy formula during infancy can lead to a lengthening of the menstrual cycle and increased pain during menses in adulthood.”

“Animal studies show that soy isoflavones can cause breast cancer. There are also human studies showing that soy isoflavones can stimulate the proliferation and activity of cells in the breasts.”

“…In one study, 48 women were split into two groups. One group ate their normal diet, the other supplemented with 60 grams of soy protein. After only 14 days, the soy protein group had significant increases in proliferation (increase in number) of the epithelial cells in the breasts, which are the cells that are most likely to turn cancerous.”

Also, for a pregnant woman drinking a lot of soy, who knows what kind of effects that huge amounts of phytoestrogens have on a developing embryo? Actually some scientists do know, and none of it is good.

As for any positive effects of consuming soy, you can find plenty of other plants to eat that will provide the same benefits or better. And tastier!

Why risk it? Keep soy products out of your diet. I don’t know anyone who missed it when they quit cold turkey, soy is not exactly wonderfully delicious.

Also take a look at:

http://www.menshealth.com/nutrition/soys-negative-effects

http://www.optimumchoices.com/Soy.htm

SOY SUCKS!

Yes, soy sucks.

But if a girl ate enough soy and it got into her breasts, she could squeeze them unto chow mein.
"
"Breast soy sauce" said the waiter, I thought you said "best soy sauce"

LOL Good Lord.
Can you give me the location of this restaurant?

It's under the palm tree at the end of the world.

Read the poem

As a lactose intolerant vegetarian, I've never been willing to totally throw soybeans out the window. The problem with soy milk and other soy products these days lies more in how it's usually made than anything inherent in the product itself. Yes, soybeans in their raw form contain all of those chemicals that are very bad for you. But much of the world's population has been drinking soy milk and eating tofu and similar things for thousands of years without any ill effects. Traditionally soybeans were soaked for the better part of a day and boiled multiple times for very long chunks of time, too, and doing that breaks down all those chemicals and makes whatever you're making safe for consumption. What's different now is that industrial scale processing and slow cooking are two concepts that really don't go well together, and much of what you'll find in a grocery store today has been made with too many corners cut. It's definitely something to be careful about. It isn't just the phytoestrogens, it's also the protease and trypsin inhibitors that might not be fully removed, either.

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I've been doing a lot of research into this at the moment. I am unsure whether I actually have macromastia but suspect if I do it is a mild case. I was a 32DD for most of my youth (am now 37yo). When I fell pregnant 3yrs ago my breasts grew significantly during pregnancy to a 36GG, I was probably bigger than that but just couldn't find any bras instores bigger than that. When my milk came in I swelled another 2 cup sizes. I breastfed for 4months then weaned and happily my breasts went back down to a 32E. Skip forward a year and literally overnight I grew a cup size just randomly. I continued to grow another cup size every couple of months until I was a 32G. I found this painful, embarrassing and struggled to cope mentally with this size on my small frame. I saw so many Dr's, did so much research myself and eventually came to the conclusion that I had to take fairly desperate measures. I asked my gp for a prescription for Bromocriptine and began taking 2.5mg twice daily. Within 1 week the painful weight had gone from the breasts. Within 2 weeks I had lost a good cup size. Within 2 months I was back down to a 32E and the softness and shape of my breasts had completely changed from ball like to tear drop again. I saw a specialist as a follow up and shared my story; he was astounded at the results and admitted he would never prescribe Bromocriptine to an individual who didn't have a prolactinoma. (I had all my hormones tested which all came back normal). I have now been taking Bromocriptine for a year and no longer have any side effects. I had to add another 1.25gm at night as my body got used to the Bromo and my breasts started to swell slightly but for now it feels under control. I suspect I will be upping my dose again in another few months. Just wanted to share my story and results and hope that if any of you are interested in trying this therapy and hadn't heard of it, that it could help you.

If you ever need to talk to someone please message i'll listen

So from a scientific curiosity, what is the tissue makeup that is found in a breast with Macromastia? In our 21st century medicine, has anyone started looking at genetic changes or abnormalities that could be affecting it? What about breast cancer? Does it cause an increase risk? Is it harder to spot due to tissue density?

Thanks alot for the story.

I think it's really important to get the girl's side of view 'cause I've read many stories about girls surrounded by people thinking: "the bigger, the sluttier", which is often completely wrong, and hurts the girl.

There must be some kind of lack of information about breasts, 'cause I just recently stumbled upon the term "macromastia", and if I earlier were to see one having this disease, I would instantly have thought: "fake!"

Sex plays a really big role in teenagers' life, and yet, we don't get to hear much about the fact, that many girls suffer because of having too much sexuality attached to them, and in this case, will have to either loose it all, or keep it all with no choise "between".

Something like this shouldn't be kept a "secret" with many having no idea what "macromastia" is. Just like AIDS, macromastia can be a very disturbing (don't know if that word fits...) disease, that people don't necessarily have know everything about, but still should have an idea.

While reading your story, I got very happy to see, that there are communities dedicated to macromastia girls, so you have a possibility to share experiences, get tips and such.

I hope for all macromastia girls out there, that they will become able to live with them, and gain respect and sympathy, and that the world will some day get a better understanding for macromastia, so a stupid disease won't get to ruin your lives

Hhhhhh.yup

The information about shape and connective tissue is very interesting to me. I have think about it more.

The answer to the fat question at least for me is that they stay the same size and shape, although they appear bigger when I am underweight and maybe a little smaller when I am up a few pounds. The shape and growth rate is unrelated to body weight.

Oh, almost forgot to say, that it was great to really get an insight on macromastia! :)

Wow, this is a very informative post. Thank you for writing this, Martha! I had read that true macromastia is a connective tissue disorder. That explains the symptoms that you mentioned.

Connective tissue supports and shapes the breasts. That's why women with macromastia have ball-shaped breasts. They're mostly made up of connective tissue, so they're held together firmly and retain their shape instead of taking on the teardrop shape of most breasts. This is why they don't reduce in size with weight loss. They're mostly made up of connective tissue, not fat. Losing weight really won't decrease their size.

This does make me wonder...do they accumulate fat? They aren't affected by weight loss, but do they grow with weight gain? I don't think they would be affected by weight gain. Does anyone on here know?

Thank you for the article and your observations.
I, too, am one that has been blessed,(inflicted), with macromastia.
I started puberty at 12. A tall skinny kid whose figure was more of a broomstick than a girl.
Almost immediately upon the onset of puberty, my figure exploded. I was growing at a rate of a cup size a month in the beginning. I grew constantly from 12 to the age of 19, going from flat chested to a UK cup size of K-KK,(M-N US sizing). Then at 19 growth slowed to being almost not perceptible.
I did grow a cup and a half size during pregnancy.

Some things different for me than your observations: I have talked to girls who were mostly average height or very petit.
I was always taller than average settling at 5'10".
Shape: mine didn't turn out to be "volleyball" shaped like others. Mine turned to a bit of a "ski slope" shape.
Things that you observed that are spot on to me:
Bra fitting; I learned there is no replacement for a custom bra. Being expertly measured, then having them made for YOUR size, shape, and lifestyle makes all the difference in the world for comfort. I live on a large cattle ranch, and having them made to help with the labor we do and riding horses...there are no words to describe the difference it has made for me. Important! Get measured often! I usually get remeasured 2-3 months to allow for changes for new bras being made.
Sensitivity; Oh my! Yes, your description is exactly correct in my case. Nothing like having giant breasts, flame red hair, and being even more obvious due to the extreme sensitivity...wow, it can be embarrassing....
Being noticed; everything considered, I've come to accept that I'm a bright neon light on a dark night. Though, it is still difficult,(tiresome), to being stared at, the comments, I'm learning to be less self conscious and walking with pride.
Growing up; the most difficult time for me was having my closest "friends" turn on me. Simply because growing up, to them I became the worst kind of girl you can imagine. That is what hurt me the most.
Reduction: this isn't something I would consider, unless it affected my overall health. To this point, I have no physical pain or any other adverse physical problems. They are part of who I am, will not willingly part with them.
Overall, I am proud of my appearance. I'm unique, I'm beautiful, I can turn on the sex appeal like most women can't. Learning to accept how it is, goes a long way for mental well being, too.

Thank you for this article,, I was completly in the dark about the condition you have,, Your article was well written, informative, and you were as objective as a person could be in you opinions. Well done !

Thank you for your effort with this, and I'm so sorry this has happened to you. It's gotten so hard to be like this. I'm trying my best to get by while living with gestational gigantomastia right now, and there are a few differences between the things you've said here and what I'm dealing with.

The thing you said that scares me is that they will always continue to grow. That isn't what I've been told so I hope my doctors are right and this is wrong. This should stop with delivery, and it is likely that I will have at least some regression afterward. It's also likely that I'll still need surgery for full resolution even if I have a lot of regression, either for further reduction or removal of stretched out skin tissue. I stay focused on that. I don't know how I would manage if this had no end point. I'm so sorry that it's been that way for you and anyone else.

Mine have become much rounder in shape and denser in the last couple of months like you've said, but it is not happening evenly so they have become more misshapen than anything else. They are not quite the same size as each other either. It has made finding a truly well fitting bra at any point of this ordeal impossible, and even if I could find something, it would not remain well fitting for long because of how quickly this keeps happening. So there's no way right now that I can get right fitting bras and clothing to distribute the weight and solve the problems it's giving me. If all of this was happening over years instead of a few months maybe it would be different.

With sensitivity, it's all agony all the time for me. Any kind of touching or bumping just hurts to some degree. I am sure only being able take Tylenol for pain right now doesn't help. Again if this was happening over years instead of a few months maybe it would be different, but none of this feels good at all for me.

So for now I am just trying to hang on the best I can until the end of my pregnancy. It gets harder all the time, but I try my best to stay focused on my baby being healthy and this getting resolved one way or another. And I hope that will be sooner than later.

Thank -It's interesting. I am also a fellow sufferer.(34H)and have learned,by experience,much of what you have stated. I have noticed that mine get bigger with weight gain.I did not see anything about that in your post - only that they do not get smaller with weight loss.Is someone with true macromastia supposed to enlarge with weight gain?I think mine do get a bit smaller with weight loss, but I have not gotten close to my ideal weight in many years. When I was a teenager,I was a"C"cup- but,to be honest,I was never measured by a professional. I wonder how many women were actually bigger than they thought,even back then!!
My main goal is to decrease the weight on my chest so I can sleep better,and exercise more freely.They think I might have sleep apnea. For me it is also embarrassing when a doctor tries to listen to my chest, or hook me up to an EKG.
I do want the surgery,but it is not for cosmetic reasons in fact,I think I look goodthe way I am.I just cannot deal with the massive weight of them.
I understand what you are saying about the surgery - my insurance actually stopped paying for them- at first I thought they were just being sexist.Maybe this is the real reason.
My goal is to become anything between a C-DD (probably wishful thinking).

Also if you happen to know of that closed group,and can send meany link where I could request membership,I am in the medical field,and may like to join.

Thank you so much.

Thank you so much for this. I'm fed up with this but afraid of the surgery too, and trying to decide what to do at this point.

Um i know a chick who really actually has this and i can say this. Once it gets to a certain size it becomes something you just can't live with. During pregnancy my friends chest became so big that she could barely walk and when she did she only could for a very limited time and had to limp. As for the with the right bra back pain isnt a issue. Thats bs eventually as was the case with her you reach a size that you cant wear a bra with that no matter what its too small.

I grew up with someone who is likely to have had this condition. She is a good friend & eventually got married.

Her step-sister would explain her growth to me, which in hindsight wasn't really appropriate or necessary for her to do as it honestly caused me to become more & more distracted by knowing that about her. At fifteen, she was a C & was at an E cup some time later. She would often wear sports bras and had to have custom sized bras.

She is a very happy mum. It's very obvious that mother hood has caused her to become larger still. She loves her husband very much & I pray that she continues to have a beautiful marriage.

She is a very positive, happy person & she loves life to the full.

I will make no further comments.

You sound confident now that you are comfortable. I wish my last girlfriends were as comfortable as you. Please be my friend

I used to be with a girl who had gigantomastia. Of course, we never really went to learn any of the super scientific stuff. Then we never really did any kinky stuff (kinky stuff after marriage people and all xD) Most of what I did in regards to her breasts was hold them up for her when they hurt. It helped her out a lot, I know. I'm no expert, but I do like talking to girls who have the condition, since at least one guy HAS to care about them for reasons other than the fact that they have abnormally large breasts. xD And I do care about them for more than that.<br />
<br />
Good article. I don't know what I can add to such insight, but I'd like to be a friend maybe.

I wish there was something more to say, Mel09, to make it better; but there isn't. When I was your size, I bought bras a half size too big and wore then until they were a half size too small. I hope you are having your bras custom made, if you're not, e mail me and I'll help you find a source.

I don't know whether to laugh or cry. Im currently 38J, about to force myself to buy a K, or better yet, L cup. No known cause, and hard to get anyone to take it seriously as a problem. (not a candidate for surgery). I needed to feel like SOMEONE understood. Thanks.

Thanks for your kind words. Please feel free to re-post this as you have suggested. Also, it's MISS not MRS, so far at least.<br />
<br />
I agree that the edges of "normal" may go above DD but I think that HH is about the far most you could go and still be normal. HH seems to be approximately the point that the shape.\<br />
<br />
call me.

Very clear and comprehensive. Great post!<br />
<br />
One question, you first state that if the growth is not continually or indefinitely it's not macromastia. Later on you state that breasts ranging in the G-, H- ,I-, J-, K-ranges are not normal, it is macromastia. If i read you correctly, their seize alone would suffice to qualify? This seems contradictory.<br />
<br />
Also, i have dated women with I- en J-range cupsizes that i would consider normal. I'm pretty sure they didn't have continued growth (dated them long enough) and also that their breasts were no deformity as you put it. They were without doubt exceptional, but the women involved were perfectly abe to live with them and did not consider it a deformity or disease themselves. I would suggest that these women would qualify as an extreme within the boundaries of natural variation. This is also how they themselves generally approached it. As far as sensitivity goes, they were without exception very sensitive, even without the diagnosis of hypertrophy, which to me seems more common than with 'regular-sized' women.<br />
<br />
What say you, Mrs. Expert-by-Research-and-Experience?<br />
<br />
On another note, would you permit me to copy your post to my group 'I Oppose to Breast Reduction Surgery' and other groups i might start to share support toward afflicted women and to propagate against the tragedy of unnecessary surgery (adding you as the source of course!)?<br />
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Thanks for the complete and relevant information, happy surfing!

PS to cutedaddy. I am using USA sizes here. You're probably trhinking of European sizes, which are different

Martha, this is one of the most complete explanations I have ever read and yes I can tell our readers that I too can confirm much of what you are saying to be true and accurate. <br />
Thank you for taking the time to share and validate the data you have assembled.

I have friends who have this so................................<br />
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Having suffered from this condition for quite a number of years, I am going to to share some of what I have learned. Remember that I am not a doctor or medical professional and that all this is just personal opinion.<br />
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Since this condition started in seventh grade, I have been to many many doctors, gynecologists, endocrinologists, plastic surgeons and many other specialties. I have seen top notch doctors in both the US and the UK. Sometimes, I have traveled to distant cities in the US or the UK just to see a specific specialist. I have been examined, probed, scanned, tested and analyzed. So I think I have learned enough to be able to make some observations.<br />
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One thing that I have noticed is that macromastia crosses many medical specialties- No one area of medicine focuses on it; this, plus the fact that it is rare, not fatal, and involves mostly (but not entirely) women, has resulted in a minimum of research into macromastia and its treatment and causes. It just isn’t a ‘popular’ condition to study.<br />
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Besides the doctors I have seen, I have spent many hours reading all I can about the condition. I believe that I have read almost all the articles available that touch on macromastia. When I read a technical article, I look up the words I don’t understand, so by the time I am finished with it I have a real understanding. <br />
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In important addition to this, I have met and become friends-- or at least acquaintances-- with about a dozen other young women with this condition. Some I have met in school or in my local area. Although the approach is difficult or impossible for a man, it is easy for me to approach another girl with macromastia. I have never failed to make a friend of a girl I met and wanted to talk to. The talks almost always starts with clothes and ends with talking about men. <br />
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I was a member of an internet group which studied macromastia, now shut down, and I met several girls there. Two of them lived close to me enough for us to get together and I see then about once a month.<br />
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There is also another internet group especially for for girls and women with macromastia, and their medical professionals. It is a closed group and is only for women. You have to be authenticated by a doctor to get in. But since it is private, there is a very free exchange of photos, experiences and information. This group is still very active. Three girls from this group who live in the eastern US met for a weekend last month. They got many stares.<br />
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Combining the information I have acquired over the years from my own experience and these other sources, I find that there are some obvious conclusions.<br />
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It is very important to distinguish between macromastia and simply big breasts. Breast size is on a bell curve like many other things. Breasts can be very large and still be normal breasts. In other words, normal and average are not the same thing. For every AA cup there is a DD cup, so to speak. Big breasts on big (i.e., fat) women are usually not macromastia either. They are just fat.<br />
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The first thing that I have invariably noticed is that normal breasts, even very large normal breasts, stop growing at some point. They then don’t get much bigger. Macromastia breasts, on the other hand, continue to grow from the precipitating event onward. Whether the growth starts at puberty, stress or pregnancy, the breasts grow. The growth rate sometimes slows, but always continues. For example, I am growing only about a cup size every two years now, and hope it will slow down even more. So that’s one differentiating factor between large but normal and macromastia-- continued growth.<br />
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The second thing I notice in all my friends and research is that macromastia does not respond to dieting. Normal breasts get smaller in proportion to lost weight. But almost all the girls I know with this condition have dieted down below their ideal weight, reducing their thighs, stomach, and even neck size but their breasts remain the same size and continue to grow. Dieting has no effect on size or growth rate;- except to make them look bigger. So if you lose breast size when you lose weight, you don’t have macromastia.<br />
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Third is size itself. There seems to be a middle ground where a girl can have normal but far above average breasts and where she has actually has macromastia. DD cups are normal and most F (DDD) cups are normal too. But when we get into some of the sizes we are talking about here, H, I, J, K, L, cups on small band sizes, that is macromastia. It is not normal. It is a deformity.<br />
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Forth is the shape of the breast. This may surprise you, but I have found it to be true in 100% of the girls I have met. Normal breasts, when they get large, grow down, in a teardrop or a pear shape. Even a very large but normal breast, say a DD, grows downward.<br />
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But macromastia breasts are not teardrop shaped, they are ball shaped. Round. Maybe not the size of basketballs but the shape of basketballs. The result in every case is that the inner edge of the left breast and the inner edge of the right breast push each other outwards More like a “T” shape than the inverted “U” or “V” shape. With the macromastia condition, the breasts push each other out and past the chest.<br />
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Here is how you can tell macromastia.. Look at the girl facing backward. With a normal breast, you will not see any breast from the rear. No matter how big they are, they are falling downward. With macromastia, looking at the back from the rear, you see two quarter moons ( or half moons) of breast tissue sticking out from either side where the macromastia breasts are pushing each other outward.<br />
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This is one of the reasons why the bras have to be custom made. The large bras sold on the internet are just big copies of smaller bras, and they don’t work because the actual shape of the macromastia breasts is much more round and ball-like than the normal breast.<br />
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The significance of this distinction between large normal breasts and macromastia is in management and treatment. <br />
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Plastic surgery is a real money maker for hospitals; breast reductions are very lucrative. To get insurance companies to pay for them, doctors convince themselves, and us, that reduction is not just a cosmetic procedure but a needed medical procedure. <br />
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Reductions from large normal breast to smaller sizes are very successful. From a DD to a C or a D to a B, even a DDD to a B or C, the operation is almost always a success. The nipple is preserved, lactation is preserved and sensation is preserved. These are the kind of reduction operations you read about all the time.<br />
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However, with macromastia there seems to me to be much less change of success. Unless growth has totally stopped, a reduction accomplishes nothing…two years later, the breast is large again, but this time it is growing around the scar tissue from the operation so it looks grotesque as well as big. Even if growth has stopped, once the reduction is from a really large size, the nipple is lost, lactation is lost and sensation is lost. A cosmetic nipple is made from other body areas, as would be done with a cancer patient, but it is only cosmetic. The reduced breasts are numb, the nipple is numb and breast feeding is impossible. One girl who had this operation wrote in anther of the other groups that it felt like her chest had been ‘paved with asphalt”. Added to the near certainty that continued growth will result in a bigger breast anyway, standard breast reduction, although lucrative for the doctor and the hospital, is not a good choice, and very few slim girls with real macromastia have it done.<br />
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The honest medical truth is, I think, that unless the breasts actually get so big that they interfere with everyday living, the choices are to live with them or have all breast tissue removed. Removing all breast tissue eliminates all future growth. After that, the girl can have a cosmetic breast built like with cancer patients, or just wear a padded AA cup.<br />
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What so many people don’t realize is that it NOT a choice of having these huge breasts or having them reduced-- if that was the choice, almost all girls with macromastia could have them reduced. With true macromastia, the choice is to live with them or loose them entirely.<br />
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That is why is is so unfair with other women say that “she must like being like that or she’d have them reduced”.<br />
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Something else, in 100% of the girls I have talked to, their macromastia breasts very very very sensitive. It is impossible to put into words how sensitive breasts get to be after they get into the macromastia size range. The alveoli are huge as is the nipple. Just the rubbing of cloth makes them erect and starts a physical sexual excitement. Once excited, a light touch is enough to send them into ecstasy. Just a guy blowing air on them is almost too much. The flick of an eyelash is about the right thing. With macromastia, the breasts become the focus of sexual stimulation as much as the clitoris is in normal women.. Not more, but as much as.<br />
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So the total loss of all breast tissue is much more of an issue to a girl who has grown up with macromastia than with a normal girl, to whom breasts are just sexual accessories. For us with this condition, they are the main event. Loosing sensation in them by total removal will profoundly affect our sex lives, and is therefore is to be resisted even more.<br />
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The result of all this is that the only intelligent decision to make if you are unfortunate enough to have this condition is to live with it, which is what most people do.<br />
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With proper posture, correct bras and the right sort of clothing, macromastia does not cause a lot of back or shoulder pain. That’s part of the pitch to get insurance companies to pay for reductions. Well fitting bra straps do not dig into the skin and a well fitted custom bra evenly distributes the weight of the breasts to the chest, shoulders, sides and back. It is not all that much of a problem once you get used to the custom bras and the custom blouses and dresses.<br />
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The biggest problems are social, and that is another story.<br />
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PLEASE add your comments to this--let’s build up a real comprehensive source of information for women with this deformity. For those of us who have this condition, or care about someone who has it, specific comments are very valuable. Let me know if you have any experiences that validate ( or invalidate) any of the five factors that I have concluded point to macromastia. Let me know your experiences with surgery, etc.<br />
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I am not going to go to the trouble of writing things like this unless everyone else contributes. Let’s really make an effort to get to know and help each other here. Guys too, you’re half of the world!

Martha, how big are your breasts, and do they cause you any problems now that you are in a wheelchair--being able to work the chair or getting in and out, etc.? Just curious.

very informative. as a guy, it is rather difficult to find any fruitful information on gigantomastia. I suppose unless you have it yourself, it's rather hard to find information in general.

lcz415, thank you for sharing this!<br />
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Your wife may be no more in this world, but when you share the experiences of both of you, then she will kind of still live on in spirit amoung us.<br />
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In my country, I sometimes hear the proverb "Der Mensch ist erst wirklich tot, wenn niemand mehr an ihn denkt." It means that a person is only really dead when nobody thinks of her/him. You two gained very rare experiences. Some of them may be cruel, some of them may be nice or eye-opening, but they are rare and when you tell other people about them, you make an important contribution to a puzzle, to the big question of what human life comprises. Imagine an alien with an enormous intellectual grasp from another galaxy that comes to earth some millenniums later asking the question what could it mean beeing a human creature. Your and your wife's written down experiences would complete that picture that this alien would see if it would find some kind of backup of human's (written down) intangible inheritance.

I've been on the fence about going into more detail with this, since I'll never be able to ask my wife's permission to do so, but I decided it would probably be good to supplement some of the things Martha said with what happens when this condition doesn't progress in a gradual fashion.<br />
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It's impossible to underestimate how disfiguring this becomes, especially if it occurs with rapid growth spurts. In addition to the sheer size, weight, and shape issues already described here, the skin is put under a terrible amount of stress when it has a rapid onset. Discoloration occurs in patches all over the place, as do very pronounced stretch marks. Bruises and areas of red irritation form all too easily. Not only do the nipples and areolae become huge, they also become very dark, and if they grow too quickly, temporarily inflamed. To say this is all incredibly uncomfortable is a major understatement. The breasts themselves become extremely veiny, and even spider veins start to pop up.<br />
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After a growth spurt ends and the irritated skin is able to recover, everything said about increased sensitivity is very, very true. But, it's very much a double-edged sword. As long the breasts and nipples are growing too quickly and haven't begun to recover from doing so, there's absolutely nothing vaguely good about that sensitivity. It's just plain excruciating, even just the rubbing of cloth on the skin. Even after recovery, and the increased sensitivity of the kind Martha described takes over, the line between ecstasy and "too much" can be accidentally crossed very easily. I can say from my perspective that it was almost like there was a trip wire between ecstasy and agony that was constantly moving back and forth, and neither of us could be totally sure where it was at any given moment. You always have to be very, very careful. Plus, there's always the lingering worry of embarrassment if a situation happens in public where something brushes against them and triggers a level of excitement that's hard to hide, but usually it's just really, really painful if they bump into something, which tends to happen way too often.<br />
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Wearing a correct, well-fitting custom bra genuinely does work wonders for relieving strain on the back, neck, and shoulders, fixing weight distribution, and resuming something more like a normal life. The problem is that it doesn't help much when a growth spurt hits. You have to then wait until after you're sure it's over to be fitted again, and then have to wait some more for the new correct, well fitting bra to be made, dealing with all the back, shoulder, neck pain, headaches, balance issues, and reduced mobility that brings in the meantime. The correct, custom-made bra relieves all of those things, but then another growth spurt hits, and then that no longer helps much, either.<br />
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Hopefully some people now have a clearer idea of just how debilitating this is.

Very useful addition to the original post, thank you!

Starting from wich size (cup size, weight of each breast) I would have to change my daily routines because of the breasts? -A: Once a bra is not an option daily routines change. Image changes. Lack of breasts can cause self loathing as much as oversized. It seems to be a matter of more and more changes - less and less information or support. <br />
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Starting from wich size (cup size, weight of each breast) they would become a nuisance in daily life?<br />
A: I have no idea. Guys pulling bra straps is not as bad as D cup where cloths no longer fit right. <br />
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How much would my breasts affect my daily routine and my daily thoughts when they were: In a range from an A cup to a C cup? In a range from a D cup to an FF cup? In a range from a G cup to a JJ cup? Larger than a K cup? Larger than an N cup (British sizes)?<br />
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To what percentage of my time per day I would think about my breasts before I would spot that they <br />
may possibly grow larger than the breasts of other girls around me?<br />
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To what percentage of my time per day I would think about my breasts when I would detect that my breasts are unusually large now?<br />
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To what percentage of my time per day I would think about my breasts when I were officially diagnosed with rapid onset of macromastia?<br />
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To what percentage of my time per day I would think about my breasts when I would have to wear JJ cup bras?<br />
G:(for gues) JJ cup would be almost 90%. From bathing, cloths, working around them, having stuff fall in the clevage, looks, wanting smaller ones, etc. <br />
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To what percentage of my time per day I would think about my breasts when I would have to wear my first custom made bra?<br />
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To what percentage of my time per day I would think about my breasts when the total weight of my breasts would exceed the limit of 5 kilograms, 10 kilograms, 15 kilograms?<br />
G(guess) - Women with DD or F cup seem to think about their breasts, societies reaction, etc most of the time. It is a relief when they do not - Please correct me. Note: How much time do guys think/dream about finding a woman with 5, 10, 15 kilos of breast ??<br />
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When I were asleep, were my breasts a topic in my dreams? If so, to which extend?<br />
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Would I get nightmares related to my breasts when I were asleep?<br />
From what I've heard and talked with people - yes. Nightmars at night and during the day. Some are normal as the brain tries to work out "what ifs' as well as anger and self loathing. Long story and may vary from person to person. <br />
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If so, what would be the plot of a typical nightmare? - As a guy mine was dreaming they came to life and totally took over her. Very scary, very sad. <br />
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How would I sleep with them? - Creativly. (grins) The use of pillows can help sleeping on the side. Side only though one friend sleeps sitting up. Very large breasts, ehh, very large for macromastia. 20 kilo would be a huge reduction. <br />
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How would they interfere with body hygiene and body care? - Imagine strapping two free hanging basket balls on. From washing, to rashes under the breast to haivng to reach around just to wipe oneself on the potty. Even doctor's visits may be curtailed for fear of going outside. <br />
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What would it like when I would exercise or just run? Swimming seems to be the best and most "liberating" The breasts float. It can also scare some for they float as "if they had a mind of their own" <br />
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Would they interfere with me while I were driving a car? - Yes. One lost any free space between her and the steering wheel. <br />
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Would they interfere with me while I were using a computer? - Typing, web surfing - yes. Either get in the way or cut blood circulation off in the legs if left there for too long. X-Box not as much. Some Wii games are hard. <br />
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How would it feel when the breasts would lay on my belly or on my lap when I were sitting on a computer?<br />
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How would it feel when climbing stairs (upstairs, downstairs)?<br />
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How would I feel in the moment when they grow? = I've been told "depressed" or "damn just when I got adjusted to them another growth cycle. " Fear that it will not end. Oddly feelings of looking worse. Women can be very hard on themselves. <br />
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How would THEY feel in the moment when they grow?<br />
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How would it feel INSIDE THEM when they would grow?<br />
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How would THE SKIN of them feel when they would grow? - Should be tight, breasts may get firm for a few weeks. Varies alotl. <br />
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What about stretch marks? Would they hurt? - All I have ever heard is fear of them. No pain. <br />
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How would they feel in the summer when it were warm and humid? - lots of sweat under the breast. Fear of BO from them. <br />
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How would I cope with the fear and uncertainty about the question when they finally stop growing and how much else they may grow in the future? Would I be scared? Would I be furious? Would I resign somehow? Would I accept my fate? Would I try to rebel against my fate? - YES, yes, yes, yes, and I believe yes. Please support these women with a medical condition with honesty and loong term support. 99% of who / what they are is, *is* , normal. Deserves a normal life. (lowers voice and takes a deep breath)<br />
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What would I do in order that my breasts don't grow any further? How were the results of these efforts that I could typically expect? How would they affect my mood and my self esteem? -- Ahhh a way to stop them, that elusive cure. Even just knowing how big would help or that they will stop. <br />
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How would my breasts interfere with buying clothes? Starting at DD cup size cloth selection becomes harder. Bras more expensive. Wearing things that draw the eye away from the bust is needed. Wearing or going bra less is no longer permitted. It just gets more pronouced from there. <br />
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How often per year I would have to buy new bras when my breasts would grow to a great extend? Would I have to buy more than one bras to be able to wear one while the other bras are in the wash? Often. Also like underware its not one bra but three to six at a time. <br />
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How much money one bra would cost during the different stages (A to C, D to FF, G to JJ, larger than K)?<br />
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How much money I would have to pay for all my bras within a whole year during the different stages (A to C, D to FF, G to JJ, larger than K)?<br />
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Sorry Out of time Will try more later. Hope the women agree or are atleast getting a good laugh or insight. <br />
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G