The Condition Affecting Women No One is Talking About

“Vulval intraepithelial neoplasia (VIN) is a condition where there are pre-cancerous cells in the skin of the vulva. The symptoms vary from woman to woman. Some have no symptoms and the area of VIN is noticed on a routine visit to the doctor. Other women complain of vulval pain or itching which can be quite severe. Others have irritation or painful sex. Some women even notice a lump or thickening of the vulval skin.

In VIN, the pre-cancer cells are located within the epidermis or the very top layer and are only a millimetre or so thick. The abnormal cells do not penetrate deep down into the dermis so as a consequence, it is easy to see on the surface of the skin with the naked eye the affected areas. We use the word pre-cancer, NOT because the cells are cancerous or you have cancer, but because the cells MAY (or MAY NOT) develop into cancer over a period of years. The exact relationship between VIN and vulval cancer remains unknown because so few studies have been carried out.

Generally VIN is divided into three stages — I, II or III — depending on how abnormal the cells are. VIN III is the commonest presentation among women and this means that the abnormal cells are present throughout the epithelium (remember it is only a millimetre thick!). In VIN I only a third of the cells in the epithelium are abnormal, whereas in VIN II, two thirds of the cells in the epithelium are abnormal.

The symptoms do vary from woman to woman. Some have no symptoms and the area of VIN is noticed on a routine visit to the doctor. Other women complain of vulval pain or itching which can be quite severe. Others have irritation or painful sex. Some women even notice a lump or thickening of the vulval skin.

Again, like the symptoms, this is variable among different women. Some women notice thickening or hardening of the skin and others have splitting or breakdown of the skin. Some women feel there is nothing wrong with the skin.

VIN is diagnosed by a vulval biopsy where usually a small pea-sized amount of skin is removed from the affected area. Sometimes two or three biopsies are required. The procedure may be carried out under local anaesthetic in the clinic or your doctor may suggest that you come into hospital to have a biopsy removed under general anaesthetic.

A biopsy is essential so that the pathologists can see down the microscope to make sure the area is VIN (and not other skin conditions) and also to see exactly what degree of abnormal cells there are.

This remains unknown. There do appear to be two age groups who get VIN: women in their 60s to 70s and women in their 30s to 40s. In women in their 30s and 40s, VIN does appear to be associated with the family of ‘wart’ viruses (human papilloma viruses) which can cause change in the appearance of the cells down the microscope causing VIN to develop. VIN is noticed to be more common among women who smoke, but whether there is a direct relationship remains unknown.” -Vulvar Pain Society

Read the Story of a young Latina mom who accidentally found out she had VIN. Her story resonates with many women struggling with VIN. Time and time again doctors misdiagnose and some women don’t get treated in time before developing full blown vulvar cancer. We hope her story helps women do monthly vulvar checks and advocate for themselves during routine check ups with their doctors.

The Vulva Check: My Story

“On May of 2018 I was diagnosed with Vulva intraepithelial neoplasia (VIN). The first thought that came to my head is what the heck is that?! Turns out it’s abnormal cells growing in the surface of your vulva, that eventually can become cancer. Who would of thought your pretty flower can get cancer?! I couldn’t believe that the itching and a few dark spots would lead to that kind of diagnosis.

It all began during my third pregnancy. My labia began to itch pretty bad but it was very similar to the itch you get when you shave and your hair is growing. The itch didn’t go away, it was quite irritating I personally thought maybe it’s yeast. I did the over the counter treatment and it would ease the itching a bit but eventually come back. Then on August 2017 I had my stillborn. A month after I had my sleeping baby a small bump appeared on my labia, again it looked like a razor related issue. I thought, ok, this might be an ingrown hair because the itchiness was pretty intense. I went to my OBGYN with my husband. As my doc checked me, she said “it doesn’t look like anything to be concerned about let me swab it for herpes.” She swabbed away and stepped out the room. I took one look at my husband and said, “if that comes out positive your dead.” He looked at me with great concern and assured me he had not done anything. Poor guy, lol. The Dr. came back with results saying it was negative and that it might just be an irritation of some sort.

By December 2017 I had a few dark spots all over my vulva. I tend to look at my flower often and I’m aware how I look and those spots were never there before. Again I thought maybe this is just hormones from having a baby. February 2017 we move to Guam (Navy Wife) that’s when I went to the doctor and explained all my symptoms. She took one look at me and said, “I don’t think this is anything to worry about, but let’s take a punch biopsy of it just to make sure.”

The pain of a needle poking your labia is no freaking joke! It’s painful! After the results came in I went to a oncologist OBGYN. This doctor put me under to take deeper tissue biopsies and cervical biopsies. The results came back confirming not only did I have VIN3 which is one stage away from cancer, but I had HPV. Apparently HPV is connected with VIN3. Please keep in mind I’ve never had an abnormal pap and I had a pap done right after my pregnancy. So the symptoms of this disease where already appearing before I even knew I had HPV. Check you vulva! Please it’s so taboo to talk about your vagina and there isn’t enough awareness for women.

I hope my story can encourage you to take a mirror monthly if not weekly and look at your pretty vulva making sure all looks good. Get to know her because you are your best advocate. There’s no regular check ups for doctors with this disease, it’s something you have to be aware and communicate to your doctor.”

About the Author: Marcella Restrepo Cevallos is of Colombian descent. She was born on September 5th, 1990 in Cleveland, Ohio. She was raised in New Jersey. She is currently living over seas in Guam with her husband and children. She prides herself in being a Navy wife and a former homeschooling mom. She identifies herself as a child of God who wants to make her Father known through the love and works He does in her life.

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