How are you managing long-term effects of pelvic radiation?

I had a radical vulvectomy last year and now have vagina prolapse due to the area being weakened. I did not have radiation or chemotherapy as it had not spread to my lymph nodes. I tried a pessary but was too painful. I go for a pet scan every 90 days.

I had vulvar melanoma and I think I was 2B.

I did not have any surgery & even if I did they still did talk about radiation after. Maybe they were trying to treat me aggressively. I am very small boned in the hip & groin area. My lesion was deep and they would have had to do some reconstructive surgery & there would not have been enough skin for that. Glad I didn’t have surgery. I hear the recovery was difficult. Either way we are faced with a new normal. Saw my oncologist last week she said I do not have rectum prolapse it’s a polyp she did a biopsy on. ? I get irritated a lot down there. Maybe it’s my detergent? Not sure what to do!! Do you suffer from any other side effects?

Please make sure you are not using anything with fragrance and that you are wearing 100 percent cotton underwear. I am learning new things about this disease every day

I am learning that my clothes detergent is definitely affecting me. I want my clothes to smell fresh. & clean but for sure I think that is an irritant. Always wear cotton underwear! Do you use any creams for irritation?
Thanks for responding!

Is there anything you can share?
It’s hard to get answers!

@andwho, I updated the title of this discussion to get more input from members like @cls316 @rainyp @cmb2022 @jeanadair123@terradean @vsinn2000 @scm @ima1survivor @bobette1 @wheaton @ahartmarblhd and others.

Here are some related discussions:

- How to handle loose stools after pelvic radiation treatments? https://connect.mayoclinic.org/discussion/pelvic-radiation/
- How did you feel after pelvic radiation was completed? https://connect.mayoclinic.org/discussion/how-did-you-feel-after-pelvic-radiation-was-completed/
- Vulvar cancer radiation: Helpful tricks & tips to manage pain? https://connect.mayoclinic.org/discussion/vulvar-squamous-cell-cancer/
- What Kind of Radiation Did You Get for Your Gynecological Cancer? https://connect.mayoclinic.org/discussion/types-of-radiation-treatments-for-gynecological-cancers/

Andwho, will you need surgery for the rectal prolapse? How are you managing it?

As it turns out after seeing my obgyn oncologist it was not a rectum prolapse. She took a biopsy, was benign polyp.
Never had that prior to radiation! Never had a lot of things prior to radiation. I love my radiologist, he told me what to expect going thru treatment but no one tells you what to expect after! Who love to hear what anyone else can share !

I have lichen sclerosis, which can be an indication that something else is wrong. I went into surgery at Moffitt to have some of my vulvar removed. I have had no chemotherapy or radiology. I had absolutely no pain before or after the surgery.

My vulvar cancer started with lichen sclerosis which would come & go for years. It turned into a very deep lesion that was too deep for surgery. Since I am very small in the groin and thigh area there wasn’t enough skin to do reconstructive that would have had to be done for surgery. Radiation & chemo was their choice. I am cancer free as of now but things are not the same down there! Many different side effects that come & go. The latest is irritation & itchy. Any suggestions?