Vulvar Cancer Awareness Forum

Vulvar Cancer Awareness Forum If you or someone you care about is struggling to cope with Vulvar Cancer, Vulvar Cancer Awareness Forum is ready to help.

We are dedicated to raising awareness of vulvar cancer, educating the public, advocating for research and better treatments, and offering hands-on support to patients and families. Since 2018, we’ve succeeded in helping countless individuals navigate and overcome challenging situations. It is our mission to raise awareness for this little talked about cancer as well as educate on it. We also activ

ely advocate for change and advancements in Vulvar Cancer treatments, early detection, development of screenings, etc. Besides that, we advocate directly on behalf of patients who are having difficulties going through the diagnostic stages, and those who have already been diagnosed. Knowing there is a lack of support for Vulvar Cancer Patients which often leads to feelings of isolation and loneliness, we offer three private support groups on Facebook, one for Vulvar Cancer, VIN (pre-cancer), and a family and friends support group. Our Support Group members are kind, patient, and open-minded with the experience, knowledge, and tools to help you cope with what you are going through. We all must walk our own paths through life, but we don’t have to do it alone. We’re here to help, all you have to do is reach out. On February, 1, 2021, we successfully launched our Vulvar Cancer Care Box program which is the first of its kind. The care boxes are designed to let patients know that they are not alone and provide them with some items that are needed, and to encourage them. The Vulvar Cancer Community may be largely overlooked, but we are changing that one step and one person at the time.

✨️ 𝙎𝙝𝙖𝙧𝙚 𝙔𝙤𝙪𝙧 𝙑𝙤𝙞𝙘𝙚 — 𝙈𝙖𝙠𝙚 𝘼𝙬𝙖𝙧𝙚𝙣𝙚𝙨𝙨 𝙑𝙞𝙨𝙞𝙗𝙡𝙚✨️We’re bringing back one of ourawareness initiatives: A series of “Vulvar C...
06/05/2026

✨️ 𝙎𝙝𝙖𝙧𝙚 𝙔𝙤𝙪𝙧 𝙑𝙤𝙞𝙘𝙚 — 𝙈𝙖𝙠𝙚 𝘼𝙬𝙖𝙧𝙚𝙣𝙚𝙨𝙨 𝙑𝙞𝙨𝙞𝙗𝙡𝙚✨️

We’re bringing back one of ourawareness initiatives: A series of “Vulvar Cancer Facts” shared directly from patients, survivors, and loved ones of patients. These quotes will be featured on our public social media pages to help educate, empower, and save lives.

We’re inviting community members who feel comfortable having their first name and photo included alongside their quote.

𝗛𝗼𝘄 𝘁𝗼 𝗣𝗮𝗿𝘁𝗶𝗰𝗶𝗽𝗮𝘁𝗲:

1️⃣ Send us a private message or email us at [email protected]

2️⃣ Share your fact — 1–3 sentences from your lived experience or perspective.

3️⃣ Add a photo of yourself with your comment.

4️⃣ Tell us how your first name should appear.

5️⃣ Optional: If you are a patient/survivor, include your age if you feel comfortable — Not required.

🗣 Your voice matters. Your experience matters.And your words may be the reason someone gets diagnosed earlier, advocates harder, or finally feels seen.

Thank you in advance for lending your voice and helping us raise awareness.

Together, we can create change. 💜

We are beginning a series of posts to educate on each type of vulvar cancer. Today’s focus is 𝙀𝙭𝙩𝙧𝙖 𝙈𝙖𝙢𝙢𝙖𝙧𝙮 𝙋𝙖𝙜𝙚𝙩 𝘿𝙞𝙨𝙚𝙖𝙨...
06/04/2026

We are beginning a series of posts to educate on each type of vulvar cancer. Today’s focus is 𝙀𝙭𝙩𝙧𝙖 𝙈𝙖𝙢𝙢𝙖𝙧𝙮 𝙋𝙖𝙜𝙚𝙩 𝘿𝙞𝙨𝙚𝙖𝙨𝙚 𝙤𝙛 𝙩𝙝𝙚 𝙑𝙪𝙡𝙫𝙖 (𝙀𝙈𝙋𝘿) — one of the rarer and most often misunderstood forms of vulvar cancer. It is typically a slow‑growing cancer that begins in the intraepithelial (surface) layer of vulvar skin.

🔍 𝗖𝗼𝗺𝗺𝗼𝗻 𝗦𝘆𝗺𝗽𝘁𝗼𝗺𝘀:

• Persistent itching
• Red, scaly, or crusty patches of skin
• White thickened skin patches Ulcers or nodules
• Bleeding from skin patches
• Burning
• Pain

These symptoms often mimic conditions like eczema, psoriasis, or chronic yeast infections — leading to frequent misdiagnosis. If symptoms persist or fail to respond to standard treatments, always insist on a biopsy.

🧬 𝗘𝗠𝗣𝗗 𝗙𝗮𝗰𝘁𝘀:

➡️ It typically affects postmenopausal women, though it can occur at any age.

➡️ EMPD may be primary (limited to the vulvar skin) or secondary (associated with underlying adenocarcinoma of glands such as Bartholin’s or sweat glands).

➡️ The disease can remain superficial for years but may eventually invade deeper tissues if untreated.

➡️ Recurrence after surgery is common, so long‑term follow‑up is essential.

Because EMPD is rare, awareness among both patients and clinicians is vital. Persistent vulvar irritation, discoloration, or skin changes deserve attention — not dismissal. Empower yourself and others to seek specialist evaluation and a biopsy when symptoms don’t resolve.

💌 𝙋𝙡𝙚𝙖𝙨𝙚 𝙨𝙝𝙖𝙧𝙚 𝙩𝙝𝙞𝙨 𝙞𝙣𝙛𝙤𝙧𝙢𝙖𝙩𝙞𝙤𝙣 𝙩𝙤 𝙢𝙖𝙠𝙚 𝙤𝙩𝙝𝙚𝙧𝙨 𝙖𝙬𝙖𝙧𝙚. 𝘼𝙬𝙖𝙧𝙚𝙣𝙚𝙨𝙨 𝙙𝙤𝙚𝙨 𝙨𝙖𝙫𝙚 𝙡𝙞𝙫𝙚𝙨!

IT'S THAT TIME OF THE MONTH AGAIN 🪞First, take a deep breath, and look at this as part of your self-care routine rather ...
06/01/2026

IT'S THAT TIME OF THE MONTH AGAIN 🪞

First, take a deep breath, and look at this as part of your self-care routine rather than an uncomfortable task. When you're ready, begin by getting into whatever position helps you actually see everything — standing, squatting, sitting over a handheld mirror, or lying back on your bed with your legs open. Whatever feels easiest and comfortable for you.

Now take a slow look around:

✨️ Look at the area where your p***c hair grows. Notice any moles, spots, bumps, rashes, white patches, red spots, pimples, moles, lumps, or anything that just looks “new” or “off.”

✨️ Find your cl****is and check for any bumps, growths, moles, lumps, white or red raised patches, or other changes in color.

✨️ Look at your l***a majora (the outer lips). Feel for any lumps and look for moles, rashes, sores, white or red patches, or wart‑like growths.

✨️ Do the same with your l***a minora (the inner lips).

✨️ Then check your perineum — that little space between the va**na and the a**s. Look for bumps, rashes, sores, or anything unusual.

And here’s the big thing: If you see something that doesn’t look right, don’t ignore it. Even tiny changes matter. Reach out to your doctor and get it checked. Vulvar cancer is very treatable when it’s caught early.

There’s no screening test for vulvar cancer — the only way to know for sure is with a biopsy. That’s why these self‑checks are so important.

Sharing this helps other women learn how to check their vulvas too — and that knowledge can truly save lives.

𝗞𝗻𝗼𝘄 𝘁𝗵𝗲 𝗧𝘆𝗽𝗲𝘀 - 𝗨𝗻𝗱𝗲𝗿𝘀𝘁𝗮𝗻𝗱 𝘁𝗵𝗲 𝗥𝗶𝘀𝗸𝘀.Vulvar cancer is not one-size-fits-all. There are multiple types, each with differ...
06/01/2026

𝗞𝗻𝗼𝘄 𝘁𝗵𝗲 𝗧𝘆𝗽𝗲𝘀 - 𝗨𝗻𝗱𝗲𝗿𝘀𝘁𝗮𝗻𝗱 𝘁𝗵𝗲 𝗥𝗶𝘀𝗸𝘀.

Vulvar cancer is not one-size-fits-all. There are multiple types, each with different characteristics, behaviors, and risks — and awareness can save lives.

This graphic highlights 6 types of vulvar cancer, including the most common and the more rare forms. Knowing what they are helps patients, caregivers, and clinicians recognize symptoms earlier and advocate for timely care.

✨ Awareness matters
✨️ Education empowers.
✨️ Early detection saves lives.

We encourage you to:

• Learn the types
• Learn the Symtpoms
• Listen to your body
• Speak up about changes
• Share this post to help spread awareness

Together, we can break the silence, reduce delays in diagnosis, and support those impacted by vulvar cancer.

💜 WEEKLY WINS 💜
05/31/2026

💜 WEEKLY WINS 💜

05/25/2026

𝙒𝙝𝙮 𝙔𝙤𝙪’𝙧𝙚 𝙎𝙚𝙚𝙞𝙣𝙜 𝙩𝙝𝙚 “𝘼𝙄 𝙄𝙣𝙛𝙤” 𝙇𝙖𝙗𝙚𝙡 𝙤𝙣 𝙎𝙤𝙢𝙚 𝙤𝙛 𝙊𝙪𝙧 𝙂𝙧𝙖𝙥𝙝𝙞𝙘𝙨

Facebook sometimes adds an “AI info” label to images, even when the content itself is 100% real and human‑submitted. We want to explain what that means so our community can stay focused on what truly matters: education, awareness, and support.

Here’s what’s actually happening:

➡️ Design apps like the one we use to create our graphics include built‑in AI features (such as layout tools, background removers, or text suggestions).

➡️ Facebook’s detection system automatically flags any image created with tools that contain AI components.

➡️ The label does not mean the story, question, or content is not real or AI‑generated.

It simply means the graphic design tool used to format the post uses AI somewhere in the background.

Every question, story, and message we share comes directly from real people in our community. The graphic is just the wrapper, the heart of the content is human.

✨️ 𝙊𝙐𝙍 𝘾𝙊𝙈𝙈𝙄𝙏𝙈𝙀𝙉𝙏 ✨️

We will always be transparent, responsible, and mission‑focused. Our goal is to keep the spotlight on awareness, education, survivorship, and support, not on a technical label that Facebook applies automatically.

If anyone ever have questions about our content, we’re here. But we hope this helps clear up confusion so we can keep the conversation centered on what truly matters.

Vulvar cancer is real and it is far more common than most people realize. It is often missed and misdiagnosed, which del...
05/25/2026

Vulvar cancer is real and it is far more common than most people realize. It is often missed and misdiagnosed, which delays detection and treatment.

🔍 We encourage everyone to make monthly vulvar self‑exams a consistent part of their personal health routine.

➡️ Sharing this information can help someone receive a diagnosis sooner — and that can save a life.

Please take a moment to share this post and help raise awareness. 💌

✨️ QUESTION OF THE DAY ✨️
05/18/2026

✨️ QUESTION OF THE DAY ✨️

05/18/2026

We’re celebrating Sabrina Silas today. She completed her radiation treatment and rang that victory bell with courage and grace. 🔔🎊

Let’s surround her with love in the comments and lift her up as she steps into this new chapter of healing and recovery. 💜🙏🏼

We’re thrilled to share that is leading a groundbreaking clinical trial for Lichen Sclerosus. Dr. Krapf is truly one of...
05/07/2026

We’re thrilled to share that is leading a groundbreaking clinical trial for Lichen Sclerosus. Dr. Krapf is truly one of the leading experts in this field - a clinician with unmatched passion, precision, and a relentless drive to transform LS care and treatment options for patients everywhere.

This is a major step forward for the LS community, and subsequently our community as well

For full details, see below. 💜

Still dealing with itching, burning, or tearing down there? 💔

You don’t have to just “live with it.”

We’re enrolling for a lichen sclerosus clinical study exploring a non-steroid treatment option ✨

📍 Tampa area
💌 email [email protected]

Let’s see if you qualify 💗

Address

P. O. Box 3316
Bethlehem, PA
18017

Telephone

+14848930360

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