Extensive Laser Vaporization/Partial Vulvectomy

LCME said:

Nobody listens
Mindy:
Thanks for replying, I too am shocked that gynos really don't know what they are looking at. Our surgeries were very close in date. How do you feel? I know you are itchy like me. How can we tell the difference from normal itching to abnormal itching? I understand laser usually has to be done a few times and usually the cure rate is 95 percent and it keeps it at bay for at least 5 years. I bet the laser must have hurt? If my most recent biopsy is positive then I will try the Aldara creme and in April when I return he will see if it worked, if not then he will do the laser at that time. How old are you? And how old is your Aunt? I'm 46. I don't smoke do either of you? I have Hashimotos Thyroiditis. Do wither of you have an autoimmune disorder because I heard it may be related to endocrine disorders. I am asking these questions because our medical community doesn't seem to know anything. Maybe there is another link besides HPV, because many women have HPV and never get this. I am married 20 yrs and can count on one hand my sexual experiences
I went to school with girls who slept with everyone and none of them got this. I am very frustrated as well as sad and sometimes depressed. I can't relax, I worry if and when it will come back? if it will be invasive? will we catch it? Or will I become something of a freak as they keep taking more tissue and cutting me open, someday to maybe lose my genitals completely? Family and friends don't understand, they think it isn't cancer so move on. Or that maybe I'm feeling sorry for myself. I'm upset about using all my vacation time for doctor appointments, surgeries, etc. Is this what life has become being worried if this is ever going to stop? I just am not myself since this. I am sad, pissed off as well and mentally drained. I'm glad I can tell you my stuff since I know you understand. Where are you from? I'm from the NYC area. Awaiting my biopsy results I guess I'll get them next week. I am now changing my underwear a few times a day and washing with a soft cloth with warm water only, it is helping a bit with itching. no more soap, no more dyes and perfumes in laundry detegents as well as fabric softeners. I am washing my underwear separate with a double rinse. And no more shaving too close in that area
Ok thanks for listening, keep in touch. Linda BTW: How close were your Aunts surgeries?

Keep your head up!
Linda,
Today I feel better than I have all week. I only ended up in the tub once last night so maybe it's almost over. As far as the itching goes I still itch at night which is how it was before surgery so I don't really know if it's because of it healing or not. I guess I won't really know until it's 100% better. To answer your question about the laser part I honestly don't know since my doctor did both at the same time. I do know that where he lasered it's a burn and it's still sensitive. I'm jealous you can wear panties. I'm stuck in dresses and skirts to keep it "aired out". I did attempt mens lounge pants and that was a mistake it seemed to do more harm than good I hurt so bad the next day.

About me personally... I just turned 30 New Years Eve and I reside in the Kansas City area. Overall I'm pretty healthy other than I'm at high risk for diabetes and I do smoke. The smoking I was told will greatly increase my chances of this coming back so I've started to cut back and will hopefully be done before the end of the month. Although I've not exactly been an angel, I don't think of myself as a person who's laid around. I've always been picky about who've I've messed around with and have always made it clear to them that I'm it, there's to be no one else. I can relate to how you feel about HPV. I contacted my old gyno to make sure there was actually a test done and there was and it was positive. I have told a few close friends and they really made me feel like crap. They made me feel like I was dirty and just whored around. I was thinking to myself, I had sex and I apparently made some bad choices but the only difference is I know. Now I know who my real friends are.

My aunt has had 3 surgeries, I know her last one was 2 years apart from the second one. I feel weird talking to her about my problem because she's my aunt and all. I just figure she obviously has first hand knowledge and doctors try to sugarcoat everything which I hate.

I've been off work since December 22nd and I can't wait to go back. I've always been an active person and being home all the time and dealing with all of this is depressing me. Thankfully I have FMLA and a boss who is very understanding and keeps reminding me that it'd do more harm than good for me to return to work before I'm certain I can deal with it. The pay is killing me to. I have my rent and bills paid and my smart dad made me pay ahead on some of them so I'm good there. LOL I told my father this is the most expensive surgery I've ever had in my life. I'm always making trips to Walgreens to find something to help with the pain or itching.

I too worry about if and when this will return. I don't like missing work and using all my time to deal with female problems, especially since I've only been with my company for a year. I really wonder how we'll deal with all of this when Obama's healthcare deal kicks in. I pray god comes back before we ever have to deal with that.

You're in my thoughts and remember to keep your head up! )

Mindy

LCME said:

Nobody listens
Mindy:
Thanks for replying, I too am shocked that gynos really don't know what they are looking at. Our surgeries were very close in date. How do you feel? I know you are itchy like me. How can we tell the difference from normal itching to abnormal itching? I understand laser usually has to be done a few times and usually the cure rate is 95 percent and it keeps it at bay for at least 5 years. I bet the laser must have hurt? If my most recent biopsy is positive then I will try the Aldara creme and in April when I return he will see if it worked, if not then he will do the laser at that time. How old are you? And how old is your Aunt? I'm 46. I don't smoke do either of you? I have Hashimotos Thyroiditis. Do wither of you have an autoimmune disorder because I heard it may be related to endocrine disorders. I am asking these questions because our medical community doesn't seem to know anything. Maybe there is another link besides HPV, because many women have HPV and never get this. I am married 20 yrs and can count on one hand my sexual experiences
I went to school with girls who slept with everyone and none of them got this. I am very frustrated as well as sad and sometimes depressed. I can't relax, I worry if and when it will come back? if it will be invasive? will we catch it? Or will I become something of a freak as they keep taking more tissue and cutting me open, someday to maybe lose my genitals completely? Family and friends don't understand, they think it isn't cancer so move on. Or that maybe I'm feeling sorry for myself. I'm upset about using all my vacation time for doctor appointments, surgeries, etc. Is this what life has become being worried if this is ever going to stop? I just am not myself since this. I am sad, pissed off as well and mentally drained. I'm glad I can tell you my stuff since I know you understand. Where are you from? I'm from the NYC area. Awaiting my biopsy results I guess I'll get them next week. I am now changing my underwear a few times a day and washing with a soft cloth with warm water only, it is helping a bit with itching. no more soap, no more dyes and perfumes in laundry detegents as well as fabric softeners. I am washing my underwear separate with a double rinse. And no more shaving too close in that area
Ok thanks for listening, keep in touch. Linda BTW: How close were your Aunts surgeries?

Keep your head up!
Linda,
Today I feel better than I have all week. I only ended up in the tub once last night so maybe it's almost over. As far as the itching goes I still itch at night which is how it was before surgery so I don't really know if it's because of it healing or not. I guess I won't really know until it's 100% better. To answer your question about the laser part I honestly don't know since my doctor did both at the same time. I do know that where he lasered it's a burn and it's still sensitive. I'm jealous you can wear panties. I'm stuck in dresses and skirts to keep it "aired out". I did attempt mens lounge pants and that was a mistake it seemed to do more harm than good I hurt so bad the next day.

About me personally... I just turned 30 New Years Eve and I reside in the Kansas City area. Overall I'm pretty healthy other than I'm at high risk for diabetes and I do smoke. The smoking I was told will greatly increase my chances of this coming back so I've started to cut back and will hopefully be done before the end of the month. Although I've not exactly been an angel, I don't think of myself as a person who's laid around. I've always been picky about who've I've messed around with and have always made it clear to them that I'm it, there's to be no one else. I can relate to how you feel about HPV. I contacted my old gyno to make sure there was actually a test done and there was and it was positive. I have told a few close friends and they really made me feel like crap. They made me feel like I was dirty and just whored around. I was thinking to myself, I had sex and I apparently made some bad choices but the only difference is I know. Now I know who my real friends are.

My aunt has had 3 surgeries, I know her last one was 2 years apart from the second one. I feel weird talking to her about my problem because she's my aunt and all. I just figure she obviously has first hand knowledge and doctors try to sugarcoat everything which I hate.

I've been off work since December 22nd and I can't wait to go back. I've always been an active person and being home all the time and dealing with all of this is depressing me. Thankfully I have FMLA and a boss who is very understanding and keeps reminding me that it'd do more harm than good for me to return to work before I'm certain I can deal with it. The pay is killing me to. I have my rent and bills paid and my smart dad made me pay ahead on some of them so I'm good there. LOL I told my father this is the most expensive surgery I've ever had in my life. I'm always making trips to Walgreens to find something to help with the pain or itching.

I too worry about if and when this will return. I don't like missing work and using all my time to deal with female problems, especially since I've only been with my company for a year. I really wonder how we'll deal with all of this when Obama's healthcare deal kicks in. I pray god comes back before we ever have to deal with that.

You're in my thoughts and remember to keep your head up! )

Mindy

mdbrett said:

hi again
Hi,

I just wrote and now re-reading some of your other posts and learning a bit more about your situation. I just wanted to say that I think there is a connection between this and an immune situation I have, which I'll explain in a minute, but my doctor doesn't agree. I just have a feeling that because our immune systems are compromised, we are succeptible to getting things like CIN and VIN and it makes me upset knowing the majority of peole have HPV and don't have problems but we are unlucky - but I'm trying to be positive (it's really hard, but I tell myself there are worse things I could have). I just don't think enough research has been done on the connections. I think there is a link to my conditions because I have herpes type 1 (contracted orally, to my horror and surprise), a lifelong gift from my very first boyfriend at age 21 (sorry if I sound cynical but it was my very first sexual experience and I thought my life was ruined...but luckily rarely get an outbreak). So for years since I was 21 and then at age 30 when I got high-risk HPV from one of the 7 men I've slept with in my life (I so wish I were a virgin at this point so I'd be totally healthy!), I too have been upset thinking about how my college friends slept around with all these men and I thought I was being conservative and careful and picked up 2 STDs from 7 men. 2 out of 7 just makes me feel awful, especially since I was so careful. I totally understand the frustration. I might even be angrier because herpes flareups only happen twice a year for me but the stigma has caused issues and breakups with many men I've tried to date. I'm sorry if I'm telling you too much information but for a very long time I've been convinced there is a connection between the herpes and the HPV and thought it was interesting you think maybe there is a connection between your conditions as well.

Ok, hope to hear back from you sometime soon about your thoughts on doctors and side-effects for me to expect, etc.

Moira

Moira
Hey I'm sorry to hear what you're going through. In regards to HPV and Herpes having a connection I'm not really sure. I recently had a friend of mine who's an RN tell me that everyone has one form of HPV/Herpes, how true that is I don't know. I know that back in October after putting up with the itching/burning I'd had enough and demanded I have every STD test done, Herpes was one of them. At the time my lesions wasn't really raised enough to biopsy, they looked more like "vaginal eczema" so they did bloodwork. The results came back that I'd never been exposed to any strain of Herpes, not even the one that developes cold sores. I would assume the virus itself probably lays dormant like HPV I dunno.

To answer the problems we have developing from insufficient immune systems I do 100% believe that. In fact my oncologist told me that when our immune system is low that we are at a higher risk of developing symptoms related to these viruses, which is why it's crucial to take excellent care of ourselves mentally and physically. I've noticed that since my surgery if I don't get enough sleep or I run myself down I do experience mild itching all over again. Maybe its just in my head but it's always at night for reason. If I soak in the tub and blow dry the area I'm fine. I do however still itch where they lasered and also the scars where my stitches were. I'm pretty OCD when it comes to looking down there, pretty sad my nightly routine involves staring at my vulva and surrounding areas every night before bed looking for anything suspicious.

I don't know how much help this post was for you,but I wish you luck and encourage you to really find a doctor who listens. If the doctor can't devote an hour to discuss everything and answer all your questions, I'd drop 'em ad go to the next.

Take care!

Mindy