Lack of breast development is common in certain syndromes of ectodermal dysplasia. We wanted to share a few stories of affected women who experienced lack of breast growth either in one or both breasts. Two of the women interviewed chose to get breast implants, while the other did not. Names and identifying details have been omitted to protect privacy.
I had not been aware that a lack of breast development was a possible symptom of ectodermal dysplasia. When I was about 13, I noticed that my right breast was not developing. For many months, I chalked it up to them just not developing at the same rate. After a while, it couldn’t be denied that the right breast was simply not coming.
If I recall correctly, when it was discussed with my pediatrician, he suggested that it may or may not be part of my syndrome (I have HED). At the time, I believed it was just my luck to have another rare deformity. My everyday life went on as it always had, but, I was very upset about it. I didn’t let on too much to the emotional distress it caused.
Eventually, when I could no longer hide it with big shirts, my mother started sewing pads into the right side of my bras. It got to the point where I usually slept in them. It was strange; for most of my adolescence, I felt like I had to put myself together every day. Get up, put in my dentures, put on the “prosthetic” bra. I would even dream about it. To this day, I will still dream about leaving the house without dentures or all my hair has fallen out. The silver lining was that I had a doctor’s note that excused me from swimming for both 9th and 10th grade!
When I was about 16 years old, (I’m 42 now) I went to see a plastic surgeon. He had me put my hands together and he felt my sides. He said I was done growing and he could do surgery. We went with silicone, cause, what did I know. My parents’ insurance covered 10%. I believe this was due to the fact that it was a congenital defect. They paid out of pocket the rest. At the time, I think it was $3,800.
Surgery was a success. I was thrilled. For the first time, I could purchase bras that weren’t white or nude. They could have lace. I was pretty psyched. About 2-3 years later, I started having a lot of pain. My breasts were also changing shape. This is also at the height of the Dow Corning lawsuit. Everyone was talking about ruptures and women were suffering from all kinds of ailments due to leaking silicone implants.
They thought I was suffering from a rupture. So, I had exploratory surgery. Turns out, it was capsular contracture. The surgeon cleaned the scar tissue and placed them in the same spot. Insurance did cover that procedure. It wasn’t even a year later that I was in pain again. My surgeon, who was the best in my city, tried to tell me it was my menses.
That certainly didn’t explain why I was deformed again. I got another surgeon. He decided that we should take them out, replace them with saline, and place them under the muscle, which would limit the likelihood for the scar capsule to grow again. I believe my insurance covered the removal, but not new implants. He was a newer surgeon, so his fee was $2,000. This surgery was a success. I was about 22 or 23 at the time. For the next few years, things went along well until at age 26, I found a small lump that turned out to be a pocket of blood and tissue. Not sure if that was from all the surgery or not. But, I am told at my mammograms that they don’t see that every day. Story of my life…
The initial surgery was painful to be sure. It probably took a good two weeks to not feel so sore. And wow, nothing prepares you for what it looks like when you take the bandages off. The bruising, swelling… you feel like it will never be right. But, after each implant surgery, with about equal time for recuperation, I was pretty good. I was told by the doctor that it takes about a year to fully heal.
Then, I had kids…my first at 31, second at 33. My breasts got jacked up again. I went back to the surgeon who had done the last procedure. I was completely deformed again. My husband’s insurance paid for certain things regarding removal, but, of course, there was some loophole to get out of paying. It was over $7,000 out of pocket and a 3-4 hour procedure to fix me.
This time, I had them replaced, and evened out. I got a little bigger (those guys always want to make you bigger), but, I guess he was right. It suits me. This was the worst recoup of all my surgeries. I came home with drain tubes and was in a lot of pain. I was sore for weeks and weeks. But, like the other times, they healed and I’m pretty happy with the results.
I had to have follow ups for a year and then I “graduated.” Knock on wood, I won’t have to do it again. Can’t say there is anything I would do differently. I mean, what happened to me is simply luck of the draw. When I had to have this last surgery, I did seek out the opinion of a different surgeon, simply because I had never really done that before. I was in desperation mode the last two times. The first surgeon had a stellar reputation, but I just lucked out with the doc who did the initial replacement. So, I tried to do my due diligence and take my time before this last one. But, when all was said and done, I did go with him anyway. And he was amazing.
Having my implants does a great deal for my confidence. There was no way I wasn’t going to do it. There was also no way I wasn’t going to rectify the capsular contracture either. And I’ll tell ya, you get used to seeing your breasts the way they are. After surgery, each time I was fixed, I’d go back to the surgeon and he’d show me the before pics. They would upset and astound me to see how deformed they were. I have never regretted any of my operations.
I had deep suspicions that my lack of breast development was related to ectodermal dysplasia, but really I just thought, because I’m smaller it was more fitting for my body shape to be smaller (though that didn’t explain the nonexistence!) Also, I did a lot of gymnastics growing up. Gymnasts are usually small, right?
I didn’t really get a confirmation of my repressed suspicions until I was 25 years old and was connected to the Women with ED Facebook page. Apparently my mom knew all along though. To be honest, I had never looked that much into ectodermal dysplasia until I turned 25. I was mixed with anger (I think just over having to deal with ectodermal dysplasia in general, even if it is more mild) and a feeling of relief from knowing why.
My lack of development didn’t affect me growing up. I think ignorance is bliss. And I wasn’t very sexually mature either while I was in high school. However, it’s increasingly affected my self-confidence with dating. As far as I know, I was not teased for being flat-chested while I was in school.
I’ve worn a kid’s size bra since college, probably the smallest remotely correctly fitting bra I’ve found. I guess the fact girls are getting more developed earlier has worked in my favor. I’ve tried the padded ones on but I just feel fake and not confident with them even in the dressing room so I’ve never brought one. I mostly did sports bras in high school. Now I find I’m going braless more often. It’s so much more comfortable. But I don’t feel my age physically.
I have considered getting implants. I still do. I haven’t yet for several reasons. First is cost. And I’m upset health insurance won’t cover even part of them. They do for breast cancer patients. Not saying they shouldn’t for us, but it’s not like we choose to have ectodermal dysplasia, or that it doesn’t affect us mentally either. Secondly, having had surgeries and working in the medical field, I know it will hurt. And I know things can go wrong. I’m in a constant debate for the future.
I wonder if getting implants would make me more confident in the dating scene. I’m sure it would help. I feel like I’m stuck in a child’s body. I’ve rarely gotten romantically close with men because of it. Though I have an internal battle (same feeling went for getting my teeth redone) if people don’t like me for me, $#%@ them! So I think that and the fear of the pain stops me. And the money. I could travel to so many cool places with that money!
My advice to other women with ectodermal dysplasia, is that implants are a very real possibility. Think about it. Listen to yourself. Do what you think is best for you and not for society’s idea of a perfect body.
I’m crying writing this. Maybe I should get implants.
I am now 58 years old. My HED is mosaic and affects one side of my body so one breast developed, the other didn’t. We had no idea about ectodermal dysplasia at the time.
I would say it had a major impact on my teenage years. I felt like a freak. I only ever told one friend at school. Changing for sports in a communal area was my worst fear. No one ever said anything, so I doubt they noticed.
My first implant was at 17. I am in Australia and my health fund paid for it no problem.
Because there was absolutely no development, it was initially agony. I had a cage over the bed to prevent even a sheet touching me. Any movement sent me through the roof. That didn’t take too long to settle.
When I got home, I was so excited and wanted to show everyone but obviously couldn’t. It was the best feeling to be “normal.”
I had them changed two more times when they went “wrong,” but still have the last one from 1985.
I had three children. They tried to get me to feed on that side to no avail because there really wasn’t a nipple to attach to well. I had no trouble breast feeding on the other side alone though, I guess I looked very lopsided at the time!
My eldest daughter went through the same thing. I thought because I had been there, it would be helpful. But, she was badly affected emotionally, shied away from people and dressed in baggy clothes. She had an implant at 17, too. If it was possible, I would have done it much earlier and changed a few times to help get through the horrible teen years.
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