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Looking for VIN info, please?

ALBunny
Posts: 8
Joined: Oct 2012

Hi, I'm new and I've been looking for info and support/people who can relate & understand, because I think I'm going to need it.

I'm 38 and last Thursday finally wondered why the heck I was itching (and have been for a while). We changed detergents a couple months ago & I thought that's what it was, but grabbed the ol' hand mirror to take a look anyway. I'm a very fair skinned person so imagine my surprise when I saw what's normally healthy pink is now partially dark colored, with 4 slightly raised dark bumps/spots and I can see another appears to be coming up - the skin has faintly changed color but it's not raised yet.

I immediately got on Google & started searching. There are few images out there (I can understand why, who wants their goodies displayed online for the world, literally?) but found a couple of photos that look very much like what I saw in my mirror, and of course they're VIN photos. I've been Googling since Thursday, hoping I could find an alternate reason for what I'm seeing, something other than VIN, but everything I find says VIN. So I'm calling my gyno tomorrow to make an appointment. I'm overdue for my yearly check-up anyway, ironically :-\

I've been crying a couple times a day over this. I'm scared. I'd never even heard of this until I got online to google "dark spots labia" and down the rabbit hole of info I went.

Would anyone who's been through this already, or going through this, please tell me what to expect? I've read women will have red, white, or dark lesions/bumps, that may or may not be slightly raised. And that the only way to determine if it's VIN is to biopsy. Is that accurate so far? How do they usually biopsy - scrape, punch, cut it out? What's recovery time for a biopsy? Are there any treatments they try before surgical options, or does it depend on what stage you are? I know the Doc can tell me all this, but I want to know something now. I feel helpless and know I'm trying to feel like I have some sort of control over the situation. My monkey wrench with medical situations is that I have drug allergies. I can't have ibuprofen, aspirin, codeine, sulfa products, and some antibiotics, to name a few. I have to wonder how this is going to complicate any treatment.

Any information is appreciated, thanks.

debrajo's picture
debrajo
Posts: 755
Joined: Sep 2011

Sorry I can't help you with info. I saw no one had answered yet and just thought I would step in so you wouldn't feel alone! I don't have vin( I'm over at the uterine cancer, UPSC, board), but my sister in law does have Vin. She had the initial surgery and two returns, but now she is fine and has a new job. Try not to focus on the recovery...there are a number of self-help ideas here(type in Vin in the sites search bar). Try not to worry, it is what it is, and you just need to take it a step at a time. Best, debrajo

ALBunny
Posts: 8
Joined: Oct 2012

I was starting to feel like I was just hanging in the wind over here, so thanks for replying :). So figure I'll just post until someone else with VIN is able to. Maybe my posts will help someone else just starting down the road who's unsure & looking for info as well. I have a friend, K, who had renal cancer at 25 (she's now 31) & has been in remission several years. She's been a help to talk with about the emotions I'm feeling.

I'm in the process of wrangling appointments. My insurance requires everything comes from the PCM, which is a pain. My GYN can only do a yearly pelvic without a referral. If anything is found during the pelvic that needs attention then I have to go back to the PCM for a specific referral back to her for it. So right now I'm trying to get in to see my PCM for a referral to my GYN. First availability for PCM is 12/4, but she sometimes has same-day walk-ins available, however I have to call at 7:30 am every morning to ask. I found out she does have one slot tomorrow, so I'm really hoping to get it.

One step at a time, for sure: 1) Appt with PCM to get this ball rolling.

debrajo's picture
debrajo
Posts: 755
Joined: Sep 2011

Keep posting,and if you get bad news, I would feel better seeing you go to an onc/gyn Most insurences pay for second opinions. Did you try the search bar? Where are you at? Don't just go with the first dx. Try to get a specialist. Keep me posted and good luck to you! Best, Debrajo

ALBunny
Posts: 8
Joined: Oct 2012

Thanks for letting me post while I wait for doc appts & diagnosis.

I did not get the walk-in appointment. The person at the scheduling line who said I could do a same-day walk-in to get a referral was very wrong. The woman I spoke with the next morning was very kind & apologetic, but firm about it. She said the person who misinformed me would be corrected asap & explained they take walk-ins for acute care only, you see whoever is available, and they do not issue referrals, period. My insurance requires referrals come from the PCM in an office visit.

So I have to wait until my office appointment on 12/4. Yes I'm sure. No, there's no other way. Yes, I'm positive. I spent most of Thursday trying to find a way in sooner, and there's not. But, in a few weeks GYN will have my med records from the old health system & depending on her schedule, hopefully I will have at least had my yearly check-up with her before 12/4 & can talk to her about this.

All I know to do for the next month & a half is to stay busy to keep my mind off things. I've only told 2 friends & have not said anything to my family. They'd only worry the bejeezus out of me with never-ending questions that I have no answers to. Sounds rotten, but they're best left in the dark until/unless I need treatment.

Oh, and debrajo you asked where I am, I'm in Central Texas & yes I've read all the VIN posts in this forum. I appreciate people sharing their experiences, any bit of info is appreciated & has answered some of my questions.

debrajo's picture
debrajo
Posts: 755
Joined: Sep 2011

What a terrible wait!!!! My sis-in-law goes through Temple, Tex. and has terrible problems with her insurance. I think the hospital where she had surgery was Scott and White. Could you maybe get a regular General Practicner or M.D. to refer you? Maybe to MD Anderson. Thats where I go. I live in south east Texas about an hour east of Houston. My sis in law was told that her kind cannot metestize into "real"cancer, but I don't know! Just a thought. I know I had to wait 4 1/2 months from dx for the uterine cancer to do the surgery. Talk about a basket case!! Keep me posted when you can and I can be found over at the uterine boards. Keep posting! Best, debrajo

ALBunny
Posts: 8
Joined: Oct 2012

No new info, and so far still unable to get an earlier appointment. I've been keeping busy and have been doing ok until a lot of stress at work today was the tipping point and I had a good long cry when I came home. 5 more weeks until I see my PCM to get the gyn/onc referral.

ALBunny
Posts: 8
Joined: Oct 2012

The appointment with my Primary Care doc is next Tuesday. I'm glad, because this has been the longest 8 weeks of my life. Although I'm stressing a little because my period's due to start by this weekend & I'm afraid she'll tell me she can't look if I'm on my period & I'll be made to wait & have to go back. I'm also afraid she won't give me a referral. I had a crappy GP before changing to her, so I'm trying not to think she'll be like the last one. I think I will have a complete and utter meltdown if she tries to send me away without examining or giving me a referral.

What I'd initially thought was 4 spots turned out (after some, ahem, pruning) to be 2 definite spots and a skin discoloration close to the other two (which are next to each other) but it was not defined like the other two. It's become defined now over the last 8 weeks & there's no mistaking it's now a formed spot. So, now I have 3. :( The itching comes & goes, ditto on the burning. I hope (maybe foolishly?) they will only take some of the labia/that small area to get clean margins and that'll be the worst of it.

My husband's having a hard time with this & what those 3 little dots could mean. He has combat-related PTSD & usually I'm the one taking care of him. "Up" was on tv last night, so we watched it. If you've never seen it, it's an animated movie and really not for kids. It's funny, but bittersweet and the beginning is sad. It shows how a couple meets as kids, then grow up to get married & share a long life together until she falls ill and passes away. The husband & wife characters were similar to us in a lot of ways. So when the wife died, he was very upset and started crying & holding me. :\

It's been difficult not saying anything to my family, especially with the holidays here. Our families live out of state & we haven't seen any of them in 5 years. So of course, Murphy's Law, they all want us to come visit. But, I'll have to use my vacation time for any procedures/treatments. But I can't tell them that right now, because I have no official news to give them.

No one else has replied, but thank you for letting me post periodically over the last 8 weeks as I've waiting for my appointment. I feel like an intruder since I haven't even seen the doc for this yet. I'm so thankful for this board though, because there is so very little information out there about VIN, the treatments, what to expect, etc.

debrajo's picture
debrajo
Posts: 755
Joined: Sep 2011

I wouldn't worry about the period thing. They are use to all kinds of stuff during exams. Just tell the nurse when you go in and usually she will take care of everything. To put your mind to rest, call and tell them you might be on your period and what you need to do. Of all the journey, the waiting has always been the worst. You and your husband have already been through so much truama. I know about the ptsd. My husband did two tours of Viet Nam and one of my son's is a 15 year career Marine with three tours of Iraq and is about to go to Afganistan in March. Keep me posted, I don't check this board too often, but I am over at the Uterine cancer board where you can reach me. Try to relax, it is what it is already and you can't change is, so just cope one second at a time and breath! P.S. crying can be good...it releaves the stress and melt down sure do get the dr.'s attention! I've had a few myself! Best, Debrajo

ALBunny
Posts: 8
Joined: Oct 2012

Okay, I go for biopsy 7:40 Monday morning. The GP did not want to refer me, she said it's just moles and they look benign to her. She just kept telling me that it looks benign and I'm okay, said women over 60 get them. I pointed out I'm 38. I didn't think anyone could tell whether a mole or lesion was benign just by *looking* at it & particularly in a "tender area" as she put it. Anyway, I said I'd really rather have it to be safe, and she said ok, she'd refer me so I could have peace of mind.

edit to add: she says I'm ok because the lesions have clean edges (some do, some don't) & ergo that makes them benign, I have no pain (she never addressed the mild itching & burning), and there's no vaginal discharge (???).

debrajo's picture
debrajo
Posts: 755
Joined: Sep 2011

You did good! Keep pushing and pushing! You HAVE to be your on advocate. No one can "look" and be 100% sure. Had I pushed and thrown a fit I probably wouldn't have cancer now! Grrrrrr! Peace of mind is priceless! DO NOT let ANYONE talk you out of finding out what is going on. It may be just as she says it is, but now you will know. I could tell you horror stories that have happened to people I know who thought their dr. was GOD and "trusted"him/her and they are dead now! You let me know what goes on Monday and try to rest now that everything is in motion. Best to you, debrajo

Trixi23
Posts: 14
Joined: Mar 2013

I'm wondering how things have turned out for you?  I just got my biopsies back - both are VIN iii.  I hope you are doing OK.  Please update when you can.

 

Blessings,

Trixi

ALBunny
Posts: 8
Joined: Oct 2012

Hi Trixie - your PM sent an email reminder to me about my profile here.  I'm sorry I never updated from December, but in a word:  benign!  Best Xmas ever.  Then life in general - that'd been in a holding pattern because of all this - took off & now suddenly it's Easter.

In waiting those 8-9 weeks I feel like my eyes really opened to what is truly important in life, & what truly is not.  Stupid office drama & catty coworkers are definitely NOT important.  My husband and my family and the couple of friends who were there for me and let me cry & worry & be scared for what might happen, are very important because they love & care for me.  

I'm not given to prayer very often, but when I do, I do ask God to please help and heal the ladies on the VIN board.

Happy Easter everyone.

Trixi23
Posts: 14
Joined: Mar 2013

I'm so very glad that your biopsys are benign!!  You DID get the best Christmas present ever!

 

Happiness to you always!!

Hugs

Trixi

Trixi23
Posts: 14
Joined: Mar 2013

I'm so very glad that your biopsys are benign!!  You DID get the best Christmas present ever!

 

Happiness to you always!!

Hugs

Trixi

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