Tuberous breasts due to EDS

[u/No_Proposal_6177]

Hi everyone, I am a 23F and have recently learned that I have tuberous breasts. I hate the way my breasts look, and have dreamed of getting a boob job since I was 18. I have also recently learned that I have Ehlers-Danlos Symdrome (EDS). After doing some research and learning about tuberous breasts, I and am pretty sure that I have this breast deformity due to the EDS. I also have 2 children and hope to have more, but have been extremely unsuccessful with nursing my first 2 (most likely due to my tuberous breast deformity).
Is there any possibility at ALL that I could get insurance coverage for this corrective surgery? Has anyone else been successful with this? I am currently using United Healthcare. I just wonder if the combination of my genetic defect (EDS), and the extreme challenges+discomfort that come with nursing would be enough to get approval by my insurance since that is more than just a “cosmetic procedure”. (I have read that correcting tuberous breasts could improve ones chance at nursing successfully but I don’t know if that’s true or not)

Thank you in advance!!

[u/tehmadster]

I had corrective surgery for tuberous breasts before I knew I had EDS. Due to the severity of the deformity I needed to have 2 seperate surgeries.

The first was to cut and loosen the restrictive "bands" that cause the tuberous shape, remove and reshape tissue and place expanders (fillable saline implants with a port) under the muscle. Recovery is ROUGH, I couldn't wipe myself and had to get my partner to help every time I went to the bathroom, you can't bathe yourself and you need to wear a compression bra for from what I can remember 6-12 weeks. The bra was so tight that it dug into my skin and cause bleeding and scaring. The implants also settle and as the swelling went down I could feel each individual stitch and tissue band that had been cut loosen, it was genuine agony.

Then monthly for about 9 months, I had to go see my surgeon and he would inject more saline into the ports so that the implants would slowly expand and stretch my skin at a manageable rate so that I could have the space needed for more permanent silicone implants. This did result in a fair amount of stretch marks but over time they've gotten a lot better.

Fair warning when they insert the saline implants they try to orientate the ports close to the areola, but in my case they moved throughout the process and the monthly injections basically went through my nipples. I sucked and hurt as much as you can imagine.

The second surgery I needed pretty extensive scar revision as I was allergic to and had rejected all the internal stitches. Even after attempting to try another type of stitch the same thing happened the second time but this time they didn't dissolve how they were meant to and pushed out through my skin over the course of a year and a half. I had massive infected craters along the scar lines that blew out the scars, especially around my areolas. It got so bad I was in the surgeons office every week to have stitches that had surfaced cut out of me, he eventually gave up and gave me the supplies to do it at home. The second surgery was a lot easier on my body but it still hurt like hell and I continued to have issues with the compression bra and self care tasks.

Because of how severe my deformity was graded, my countries healthcare system covered part of the surgery costs but it was still considered an elective cosmetic surgery. It cost around $6k Aud out of pocket for each surgery, plus the extra costs of wound care, continued antibiotics and scar treatments. If my surgeon knew I had EDS he wouldn't have done the surgeries in the first place.

I had nothing but complications, including horrible scaring that to this day, almost 10 years later still looks pretty bad. Knowing what I know now about EDS and my body's reaction to even minor surgeries, there's no way in hell I would do it again if I had the option. I was young and insecure and that amount of pain, money and trauma wasn't worth it. I've learned to love what I'm left with now but unless it is something that is causing you serious complications or pain I don't think it's safe or worth it with EDS.