Two issues: Labial Fusion and Vestibulodynia

Posted by chelbell1234 @chelbell1234, Nov 5, 2022

Hi all,

I wanted to reach out and see if any women have dealt with similar issues. I had a telehealth appointment with the Women’s Health department at Mayo in September, and then they did an internal consult with the Gynecology department. I will be traveling to Rochester, MN in early December for an in-person appointment. It is considered an evaluation/surgical consultation.

Some background information! I am a 25 year old woman who is dealing with two gynecological issues. The first is an issue that happened a few years ago. I had a labiaplasty (labia minora reduction surgery) done by a gynecologist in my hometown, due to having a condition called labial hypertrophy. The surgery went very poorly; most of my labia was cut off and the remaining tissue I have is “fused”. My labia minora was cut extremely short and then it was sewn outwards into my labia majora. Basically I don’t have much labia minora left, it’s completely everted and under a ton of tension. It’s hard to explain but the eversion/tension has caused so much pain and makes intercourse impossible. It has not gotten any better with pills/creams/injections/physical therapy. My vulvar anatomy is just unnatural now. There are various plastic surgeons in the US who do surgeries to “release” the fusion so the labia minora isn’t sewn into the labia majora, but I honestly don’t know who I can trust. I don’t know if Mayo Clinic has dealt with anything similar.

In addition to this vulvar deformity issue, I have had a lifelong condition called Congenital Neuroprolifitive Vestibulodynia. This is where you are born with too many nerve endings in your vestibule (tissue right outside of your vagina) and it makes any sort of penetration excruciating. I have had provoked pain since I first used a tampon, and intercourse has always been miserable. I’ve been through years of treatments with no improvement. I’m at the point where I’m wondering if a vestibulectomy is a viable option for me. This surgery involves cutting out sections or all of the vestibule tissue, and creating a vaginal advancement flap to cover the open wound. From what I understand, this surgery can be very effective for women who were born with the condition.

So basically, I am dealing with these two issues. I feel like the labia fusion issue is more of a plastic reconstructive surgery issue, and then the Congential Neuroprolifitive Vestibulodynia is a gynecological issue. I have tried emailing the gynecologist that I will be seeing, but I am unsure if she got it. I am unable to contact her or anyone in gynecology in my patient portal because I haven’t technically seen anyone yet.

I guess I am very confused about what I should be expecting from my visit in December. I’ve called every day for cancellations but think I will just plan on my original date now. In my patient portal, I just have one appointment which is titled “Evaluation/Surgical Consult” with a gynecologist. She specializes in minimally invasive gynecology procedures. I am unsure if my issues will also require a plastic reconstructive surgeon. If so, does that most likely mean I will be sent home and then asked to travel back at a later date? I have absolutely no idea what to expect and what the gynecology department can or can’t do when I come in December. The gynecology department schedulers told me I may or may not have some sort of surgery while I’m there, so I really don’t know how to plan for travel and accommodations when it’s up in the air.

I just wondered if anyone has any advice on what to expect, any additional steps I should take, or if they have been through anything similar. I understand my case is somewhat complex. I’m just very scared of making the trip there and getting told to come back at a later date if my case requires multiple different specialists.

I am currently on disability from these issues. It’s very hard for me to sit/stand/be active at all from the labiaplasty damage, and then pain from Vestibulodynia. I was really hoping these issues could all be addressed when I go in December, but I am increasingly worried of being told to come back months later or not at all. I don’t know. I just haven’t had many good experiences with hospitals in the last few years and it’s been somewhat traumatizing.

Thank you for reading all of this and any advice you may have! I appreciate it <3

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willows | @willows | Nov 6, 2022

Chelbell I am so sorry for your problems. I had a situation arising from my lichen sclerosis. Part of my labia was fused to my clitoris. It caused a lot of discomfort as I grew and matured. I needed surgery to remove the fused labia and create a skin covering for the clitoris. The skin over the clitoris was then stitched back to prevent it from re-fusing to the clitoris. I was in hospital for almost a week. The stitches were removed a month later. I guess you could say the operation was successful in that it did what was necessary. The only problem for me is that the surgeon couldn’t create a hood form that women have to cover the clitoris. Instead the best he could was create two flaps of skin. Sometimes they open, depending how I move around, then the underwear or seam of a pair of pants will rub on the exposed clitoris and that hurts. Years later new fusions developed that were less complicated and could be removed in the a doctor’s office under local freezing. As a result of the LS most of my labia have disappeared. Destroyed by the LS, with the exception of one side. I am waiting for that side to melt away too or for more adhesions to form! Here is hoping that you get your problems solved and that your condition is manageable.