Anyone with vulvar cancer?

@mabosh: Welcome to Mayo Clinic Connect; a open forum for you to discuss your concerns, seek recommendations and share your experience.

I'm wondering if this is the medical condition you're inquiring about, a slight difference in spelling: https://www.mayoclinic.org/diseases-conditions/vulvar-cancer/symptoms-causes/syc-20368051.

This area refers to the external female genitalia. If cancer has been detected in the area, accompanying symptoms can include a constant, foul smelling odor. While seeking/obtaining care for the underlying issue, it's best to cleanse the area with warm water - no soap due to the possibilty of irritation. For the same reason, avoid douching or scented vaginal products. Underwear should be cotton, breathable material and avoid anything tight around the genitals, ideally sleeping without any constrictive garments at night.

Is an oncologist currently involved in providing treatment?

@grammato3 yes same symptoms waitingbto start radiation in may unfortunately I have done almost the things you mentioned but the foul smell keeps on getting worse yhooooo

@mabosh That must be uncomfortable for you. There's another possibility to consider, a medication you can ask your medical provider about: metronidazole gel 0.75% applied externally that can be helpful at reducing odors related to this type of condition.

Would you feel comfortable inquiring about this?

@grammato3 very I've even lost confidence at this point im ready to try everything to improve the condition im in

@mabosh, I'm tagging a few members like @tammielynn @kanderstag @wheaton @andwho @bobette1 @mobilepmc, who also have experience with vulvar cancer.

As you prepare for radiation, you might also find this discussion helpful:
- Radiation and chemo for vulvar cancer https://connect.mayoclinic.org/discussion/radiation-and-chemo-for-vulvar-cancer/

You might also wish to join the monthly support group meetings on Zoom led by a Mayo Clinic social worker. The next meeting is on Monday, May 11. See more information here:
- GYN Cancer Support Group Meeting: Women of S-Teal https://connect.mayoclinic.org/event/gyn-cancer-support-group-meeting-women-of-s-teal-84c0173f/

I’m sorry to hear about your problems with genital odor. I did not experience this however I received so much support with the effects of radiation that I did experience from the nurses helping out in the RADIATION treatment area. They are very knowledgeable and able to address most every issue that arises.

Be sure to make your issues knowing and hopefully you will receive some help.

Wishing you much support and good luck!

I just was diagnosed with vulvar melanoma and there is an odor. I can't smell it. I hope others can't. However, I strongly believe my 1 year old female dog does by her behavior. She keeps jumping up to me in that area. I just push back and say - Stop It! But she does it pretty much every day. I hope she understands that I'm working on it and I got her message.

Hi. I'm new here. FYI, I had my first biopsy surgery about 2 weeks ago and in 2 more weeks I have to go back for a second surgery to clear the 2 cm parameter of where the mass once was. I had a 5 mm vulvar melanoma. I still can't believe this whole thing.

@teedee66 I'm with you that your dog can smell the change. Our animals, including cats, have so many more cells for smell than we do.

The diagnosis of vulvar melanoma must have been such a shock for you. I'm putting myself in your place when we hear a diagnosis from the doctor. Something we are never prepared to hear. I'll share this. When I received my diagnosis of endometrial cancer I felt like my hearing became super loud and I thought at first oh, that's can't be me. But it was. Like you, I was fortunate that treatment with surgery was scheduled within two weeks of the diagnosis. Getting that schedule and treatment meant everything to me. I could then feel more hope because I didn't have to sit with the diagnosis wondering what's next. I needed that treatment plan to have hope with optimism.

What are you doing to care for yourself? Do you go for walks with your dog? Take a soothing bath? Eat some comfort food you enjoy?

Hi @mabosh I hope everything is getting easier for. I too was diagnosed with vulvar cancer in 2018. I did not have an odor prior to treatment. Unfortunately you are experiencing this unpleasant condition. There is some extremely helpful advice here already. One of the most important things that you need to do for yourself is ask questions. Ask your doctors, nurses, PA, anyone that is involved in your care. I am sure they will be able to explain the odor and suggest ways to eliminate or improve it. I still go to all of my doctors appointments with a written (and sometimes very long) list of questions. The best part is I get the answers. You know your body better than anyone, please don’t be afraid to advocate for yourself. Please let us know how your treatment goes and how you’re doing. You got this💪