Vulva Cancer survivor

Wonderphinwoman

I am looking for other woman that have been through what I have been through. Let me begin from the beginning. When I was 38 my periods just stopped. I just figured I was going through early menopause. Well.in December of 2021 when I was 39 I found a lump. I was freaked out a little but kind of put it out of my mind. It took my 2 months to tell my husband about it. He just brushed it off so then so did I. At first I just thought that it was a cyst. 2 1/2 years later in January 2023 my husband kicked me out of the house and I was homeless for 4 months. The day our divorce was final I got into my apartment. Things were looking up. 3 weeks later at the age of 41 I found out it was cancer. I had my surgery on July 11th 2023. They removed my clitoris and lymph nodes. I went through a lot by myself. 5 months later I met a guy. My beatfriend asked me if I told him everything. I told her that I didn't see how I couldn't. He was very understanding and we are still together almost 11 months later. He has been amazing. But here is my issue. I have always been that person that gets into my own head and my feeling. We have not been able to have sex. I am just way to tight. I am afraid that what we do is not going to be enough. He says that if it wasn't the He wouldn't still be here. I am just scared and wanted to talk to people that truly understand what I have gone through.

NoTimeForCancer

Wonderphinwoman, you have gone through a lot, and vulvar cancer is so rare finding others who have gone through that is a challenge.

I am a visitor from the Uterine/Endometrial cancer page and like to check on our gyn sisters.

Good for you for telling the new guy everything. He eventually would have needed to know, so leading with honesty is the best part. I have been through less and don't think there is a guy out there who would be as understanding.

Sex is a part of an intimate relationship. I would suggest the Foundation of Women's Cancer, Educational Courses & Webinars, specifically the Uniquely you: Embracing Sex and Intimacy After Cancer. I am putting the link below, but in case it doesn't post, I hope you can find it.

https://foundationforwomenscancer.org/resources/educational-courses-webinars/

JHedrick20

hi there. This sounds a bit familiar to me. I’m 39 and have been through the ringer (since March 2024) of trying to get my doctor to take me serious when I expressed concerns about evident changes I noticed. Initially, my labs and tests were all coming back normal so I kept getting brushed aside. Had my annual in May and again everything came back normal. I noticed the skin changes and then a lump that was rapidly growing in my clitoral hood. I essentially demanded action and was transferred to a new doctor. Ultimately had biopsies done in early December and found our December 4th I had differentiated squamous cell carcinoma. At this point my lymph nodes were already swollen. I had them removed first December 18th and found out cancer spread there. I recently had the tumor removed December 26th. I’m almost a week post op and struggling with the pain and swelling. My husband has been extremely supportive through this whole process, but I am emotionally and physically wrecked. I had my clitorus removed and am experiencing nerve damage. I’m so tight, swollen and bruised. Did you experience this too?

NoTimeForCancer

JHedrick20, I am so sorry to hear how you have had to fight to be taken seriously. You are positive proof that we have to continue to advocate for ourselves.

It sounds good that you have a new doctor, a second opinion would have been my suggestion.

So wonderful to hear your husband it supportive, we all need the love and support from family and friends.

This page can be very quiet, so I would suggest checking with the SHARE cancer support site as well. It is for Women's cancers. (link below) You might find others who you can get answers and help from.

https://www.sharecancersupport.org/

Wonderphinwoman

https://csn.cancer.org/discussion/comment/1719936#Comment_1719936

Yes I did. I was surprised how well I delt with the pain. I am still numb in areas. I haven't been able to have sex since because of how tight I am.

Lsugurl1

I had stage 3 vulva cancer and had chemo and radiation. Mylast treatment was in August 2024. Radiation was torture and have lasting side effects from it. I went to my gyno oncologist 2 weeks ago and she found some spots to biopsy. I had the biopsy yesterday and it wasn't as bad as I thought it would be. I was scared of the lidocaine shot down there, but it just stung a tad bit. I see the results posted, just waiting for Dr to call me. It says High Grade Squamous dysplasia.

skippingLiz

https://csn.cancer.org/discussion/comment/1720602#Comment_1720602

I'm sorry that you are going through this. Personally, I'm not a big fan of the lidocaine shot down there 😳! I hope you hear from your doctor today. Being stuck in the uncertain waiting phase is very uncomfortable (even more than the lidocaine shot!) The results that were posted do not provide the whole picture, and you need the doctor to explain what they found. I waited for my doctor to call for a whole week after my results were posted online, and I was torture! I finally called. They didn't even realize thy had forgotten to call me. Going forward, I think I'm going to call if I don't hear from the doctor the same day.

Lsugurl1

https://csn.cancer.org/discussion/comment/1720603#Comment_1720603

Just heard from my nurse. I have VIN so she scheduled surgery on 2/19. They are going to do it with a laser and also do a pelvic exam while I am asleep, since I can't tolerate right now. Also, was contacted from the pt with pelvic floor therapy with the dilators.

skippingLiz

How are you feeling about the diagnosis?