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LEEP in 2007, now a partial vulvectomy and perinectomy this coming Thursday...

Posts: 2
Joined: Aug 2011

I had a successful LEEP procedure in 2007 for a CIN2. After years of clear paps, I was pretty confident that I wouldn't be having any further issues (at least for a while). Sometime in late 2008, I began experiencing symptoms similar to a yeast infection. My now former GYN said after several office exams that since I didn't have a yeast infection and she couldn't find anything "wrong," that it was probably all in my head. Needless to say, I stopped seeing her after that. My current GYN decided to put me on a topical steroid, since he couldn't find anything. A year later (March 2011), I saw him again and let him know it wasn't helping. After an acetic acid skin test, he noticed a lesion on my lower vulva/perineum. He biopsied and found it to be VIN1, and decided to refer me to an gynecologic oncologist in the area. After another biopsy two weeks ago, the gyn. onc. let me know that he wanted to do a partial vulvectomy and perinectomy.

Dealing with the fear of the unknown in this instance has been near crippling at times - no matter how hard I tried to cope, I had full-on meltdowns for three days straight after the biopsy on the 29th. I'm afraid that the recovery will be agony, and that sex with my fiancé will not be the same (sounds silly and superficial at times, but it's a big deal to me).

Posts: 55
Joined: May 2010

I had a LEEP done back in 2002. Everything was clear even all my pap. I had the same symptoms as you did and told my Dr that all the stuff they gave me over the years was not helping so he did a biopsy and it came back vulvar cancer. I had a partial vulvectomy done last years with 9 of my left lympnodes removed from my right groin and left lymph nodes removed from my left side. I also had laser treatments. I had VIN 3 in alot of areas and VIN 1 in some places. Its been a years since the surgery and I am fine. Its not silly to feel this way and its not superficial. I had those same worries b/c and I am a single 30 year old and I thought man how and when will I be able to explain this to a new boyfriend. It is a hard on anyone with this problem. You think how is he going to look at me after this. Everything went back to normal for me. Even though I do not have a boyfriend it still works. (LOL) The surgery was painfull I am not going to lie and dont want to scare you but the pain does go away. You will just have to give yourself time to heal. The hardest part is healing mentally but you will make.

I hope all goes well with you and your recovery.

Posts: 2
Joined: Aug 2011

Thank you so much for sharing your story - I can barely imagine what you've gone through, and I hope you stay healthy!

My surgery yesterday went well, and now I'm resting up at home. I'm anxious to get all of this behind me, but I know it'll take time.

Your wondering about how a new boyfriend will look at you is pretty much exactly how I've felt, and I can't tell you how comforting it was to know I'm not alone in thinking that. Here's to getting back to normal again :)

Posts: 2
Joined: Aug 2011

I just found this site and have been reading non-stop for 2 days.I am 4 weeks post-surgery.Had a partial vulvectomy and although the first 3 weeks were very painful,I am feeling good now.Once I am completely healed I will start chemo and radiation for 5 weeks.I'm learning that there are no silly questions or feelings when you find out you have cancer.I have a very supportive husband but I too worry about my sex life.Will I even want one?Does anyone else find this term"vulvar cancer" embarrasing or is it just me?I seem to call it anything else I can think of.Maybe it's because I have 5 sons.One of them jokes he could write a book called"Everything you need to know about vaginas"Hope you are doing well after your surgery.Do you have to do radiation too?
And yes....Heres to getting back to normal!

Posts: 1
Joined: Oct 2011

I have just been diagnosed with Vin 3. Today I went back for a six week check after starting Immoquimod cream. Feel really frustrated. I saw a different doctor,and feel cheated really. Where is the consistency in care? I didn't feel at all confident with the information she gave me. So hopeless, next check up in 6-8 weeks, but feel it is pointless if I am going to see different people all the time. Has anyone else been passed around consultants? I am in the UK. Not sure what to do next.....

Posts: 181
Joined: Jan 2009

When I was first diagnosed with vulvar cancer, I had a hard time wrapping my head around it, because I was totally unaware about cancer in the genital region, and I was 55 yrs. old! With surgery, recovery and radiation treatments ahead of me, I decided to be open and say the word 'vulva' as much as I could, mainly to educate other women about this.All of us that have been affected by vulvar cancer, VIN, lichen sclerosis, etc., need to be open about this. Remember when no one would talk about breast cancer? First we need to educate our daughters, use proper names of body parts, talk to our girlfriends and most importantly talk to our gyn about this. Many doctors are not up to speed on vulvar issues, so we need to know our own bodies, what is normal and what is not, and question what we don't understand.Did you know that we should be doing a monthly self exam on the vulva, just like the breast exam? No one told me either. I don't like the 'cutesy' names for the vulva..it is not a vagina, or a cootchie, or just 'down there'.I am very passionate about this because I have read too many stories of women that go to doctor and are given an antibiotic, or a cream or told it's nothing, and then find out later is it cancer or pre-cancer, this should not happen in this day and age. Please, ruxpin..do not be embarrassed about having vulvar cancer, it is cancer, a terrible disease.
My VC from 2009 just metastasized to right femur bone and I am in second round of radiation( almost done), and will be starting chemo in few weeks. Can I ask which chemo they used for you? Was your vulvar cancer squamous or adenocarcinoma? By the way, I think it is great that your sons know enough about womens anatomy to write a book...they need to be educated too! Knowledge is power.

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