Can we talk about vulvar and vaginal cancers?

A close up image of an orchid type flower

Can we talk openly about vulvas and vaginas?

It’s Gynaecological Cancer Awareness Month and we’re taking the opportunity to raise awareness of the rarer gynae cancers.

We understand that many people find sexual organs to be an embarrassing or awkward subject. Many people might not even know the correct names for these body parts. So what happens if you get diagnosed with cancer (or a pre-cancerous condition) ‘down there’?

We’re highlighting how women, trans men and non-binary people can find support from the Community. It’s a place where you can be completely anonymous and chat with others in similar circumstances.

Whether you’ve just been diagnosed with vulval/vaginal cancer, need emotional support or practical tips to help with healing after surgery, you’re likely to find someone who understands.

"How were you after the operation and has it taken long to recover? It'll be good to chat with someone who's been through the same operation."   Community member, vulva cancer forum

Whatever age you are, we hope that you'll be able to find people who relate to what you're going through. 

"I was diagnosed with cancer of the vulva 6 months ago aged 33 and have really struggled to find others who have had similar treatments and particularly who are of a similar age." Community member, vulva cancer forum

You can also join the groups if you're supporting someone else with cancer. 

"I have joined this forum for my sister! She was diagnosed with vaginal cancer last July 2020...Please need some advice or anyone who has had this surgery and what it entails." - Community member, vagina cancer forum

Vulva and vaginal cancers are fairly rare, so it can feel really isolating when you're diagnosed. By joining the vulva and vaginal cancer forums, you can meet others who might be struggling with similar feelings. 

"I've recently been diagnosed with stage 3 vaginal cancer. I've been told by my oncologist how rare this cancer is..." - Community member, vagina cancer forum 

"It is nice to hear someone else who has had vulva cancer. There’s not many of us!" - Community member, vulva cancer forum

"I came on here because I feel like i need to connect with somebody else who has had this done." - Community member, vulva cancer forum

We know that it can mean a lot to find other members who are going through, or have been through similar diagnosis and treatment. Hearing from members who are feeling a lot more positive a few months after surgery can be inspiring, like this member reporting back to their group:

"I came outta my partial vulvectomy looking like a battlefield and now 3 months on I have a brand new bajingo!! It's amazing how quickly the body does heal itself. The one thing I will say is if you do self-examine keep an open mind after surgery as I totally freaked out after seeing myself...there were stitches everywhere and I couldn't figure out which bit went where? So keep a open mind that it'll be early days and the way you look after surgery won't be the way you look forever. That and plenty of painkillers, loose fitted clothes and bed rest!" 

In the vagina and vulva cancer groups, no subject is taboo. Cancer and treatment in the pelvic area can cause changes that can affect your sex life. Some people might find it difficult to talk about with their loved ones or discuss with their medical team. The Community is here to show you that you're not alone and through shared experience, you can feel supported in facing difficult issues.

“I would love to find out how other members have got on with resuming sexual intercourse after having this type of operation. I know lubrication and the lack of any feeling will be an issue but any advice would be greatly appreciated because at the moment I'm not even sure if I can ever contemplate intercourse again”Community member, vagina cancer forum

The members of the vulva and vagina cancer groups are great at sharing tips to help each other through practical and emotional issues. Whether you're coping with the initial diagnosis or need practical tips to help you recover from surgery, they're all here for one another. 

"I had VINIII surgery about a year ago. When they stitched me up they almost sewed my vagina opening closed! Now it is very painful to have sex. They told me to do use dilators to open the skin but it’s not working! Help!" - Community member, vulva cancer forum

Some patients who've undergone treatment may need to use 'dilators' to help with vaginal narrowing. You can find more information about this on Macmillan's information pages here. Members often find the Community to be a useful place to discuss intimate matters and help each other feel much less alone.

"Glad you were brave enough to  join  the  group  as everyone  here is really supportive. Please ask anything and post at any time. I know that several of ladies here and also in other gynaecology groups like womb cancer have experience  of  using  dilators. I am sure they will be happy to share their stories with you." - Community member, vulva cancer forum

"Do your dilators when you are relaxed and don't overthink it, if you're tense, your vagina will be too" - Community member, vagina cancer forum

We're so proud of the way you all support one another through some really tough times. It can be a scary and isolating experience to be diagnosed with a gynaecological cancer, but at least you don't have to face it alone. 

We'd like to share this message of hope from one Community member:

"You are all fantastic you are strong and determined to keep on going, life is definitely worth fighting for.  My journey has had its share of complications, however after each problem and days of tantrums from myself I always resolved to keep on truckin' no matter what!"  - Community member, vulva cancer forum

Do you have a diagnosis or vulval or vagina cancer, or experience of pelvic surgery and its side effects?  If you feel comfortable doing so, we'd encourage you to join a group and ask questions / share your experience. If you need help finding your way or using the site, please do get in touch.

If you'd like to find expert information from Macmillan, you can find our vulval cancer pages here and vaginal cancer pages here.

The Eve Appeal also has lots of information and support around gynaecological cancers.

Please don't hesitate to comment below, or contact the Community team by email (community@macmillan.org.uk) if you have any questions or feedback around this blog.

Anonymous
  • Brilliant blog Steph, 

    Even though I didn't have vulva cancer the tumours I have were against my vagina so the surgery I had to have was similar to a lot of others on the forum. You are so right that its hard to talk about that area of your body and thinking you will never be able to be intimate again with your partner is a really scary thought and throws up lots of emotional problems. 

    Its been so helpful to connect with others for advice and to feel that you helping them 9n their journeys too. 

  • Thank you so much for this lovely feedback 

    Although I'm sorry that you had to go through that diagnosis and surgery, I'm really glad that you've found the Community for support. 

    Thank you for being a member of our Community and for being here for others. A virtual hug can be warmer than you might think and it can make  big difference to be able to connect with people who understand.