sanibel426
05-19-2007, 09:20 PM
Hi, I am new to this site due to doing some research of my own. I started out with CIN III in my cervix back in 1998 and several procedures done until finally the freeze one worked. I have had clean paps ever since. BUT about 2 yrs. later, I began experiencing bad itching on the left side of my vulva and the doctor said I had HPV and gave me some Aldera cream. That helped for a few outbreaks over the course of 2 or so yrs, on and off. Then it got much worse in Dec. 2005 and after the biopsy, I was told I had stage 3 dysplasia and it had to be removed by scalpel surgery only, a vulvavectomy. I was so scared. I went to 2 different opinions and they all said the same thing, surgery was my only option. I had my surgery on 9/22/06 and I'm not going to lie, it was really hard. I was told it can take up to a yr. to fully heal and I will never be the same "down there", considering the extensive surgery I had, my oncologist was amazing and he did an amazing job. I thought things were going really well, I went for checkups every week for the 1st month then every 4 weeks for 4 months then my 6 month they looked at my cells under the microscope and I was told there were no signs of the disease returning, I was so overjoyed! Then a few weeks ago, yup, the itching/burning has returned and I had a terrible feeling it was back. I just went Thursday for my 8 month and my doctor gave me the most heart wrenching news, it is back. She thinks it is only "mild", but back to the oncologist I go for her to look at it and decide if I need biopsies. I am so beside myself because I did everything they told me to do. I bought a juicer and drink carrot juice every day (suppose to boost your immune system which is key to HPV which causes our dysplasia) I have taken aveno baths on a regular basis, I put Vitamin E from a soft gel on my vulva every morning and every night, I use my Gynecort cream, I take black tea SIDS baths, I only wear white cotton undies (colored ones are bad for women like us due to the dyes), you name it, i've done it. But when I saw this message board tonight, I felt l little better reading everyone's stories, I really thought I was the only one with this VULVA DYSPLASIA. Most everything you read on the internet is about cervical and not vulva which made this ordeal so frustrating. I am here to help anyone I can, I've been through allot and I know I will be going through more and to have women like you out there to help me through it all really makes a difference. I look forward to your replies and sorry if things are misspelled, I'm on a laptop :)
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becks77
05-20-2007, 04:58 AM
hi sanibel and welcome to the board.
it was sad to read your story, but also glad that you shared it, and i hope things start to improve for you.
i too am new here, thats because i am just on the first step having 6months gao at 29 just got my first abnormal pap, so had a coloscopy, and biopsy (which came back clear), but now had my review pap (which im, waiting fro results for)a nd at the review coloscopy already been told the cells havent healed themselves.
so i dont knwo what the definition is of my condition yet, tho know there has been talk of leeps. but what id o know is i have found this boatrd a great place for advice and support from those who have been through it - i know it sounds awful but docs re great at saying "it wont hurt" but unless they have been through it how do they really know how something feels?
anyway ionce more welcome to the board.
beckie x
it was sad to read your story, but also glad that you shared it, and i hope things start to improve for you.
i too am new here, thats because i am just on the first step having 6months gao at 29 just got my first abnormal pap, so had a coloscopy, and biopsy (which came back clear), but now had my review pap (which im, waiting fro results for)a nd at the review coloscopy already been told the cells havent healed themselves.
so i dont knwo what the definition is of my condition yet, tho know there has been talk of leeps. but what id o know is i have found this boatrd a great place for advice and support from those who have been through it - i know it sounds awful but docs re great at saying "it wont hurt" but unless they have been through it how do they really know how something feels?
anyway ionce more welcome to the board.
beckie x
luzon
05-27-2007, 09:14 AM
Hi Sanibel,
I just read your story and you have had one bumpy ride , I hope that things will improve for you ,good that you have taken up good habits , carrot juice ,I am sitting here drinking mine !
Thank you for sharing .I have a big fear of vulva cancer my sister had this two years post cone for CIS at the age of 33, and I see that the link between the two is HPV .
I had other the last few months two cones for CIS and have glandular involvement so I know that there is a chance of it coming back ,but also I want to speak to my oncologist , I have a follow up tomorrow about watching out for vulva cancer .Sharing your own story makes us all aware of how much we need to try to look after our health and get regular health checks .
Best of luck ,Miri
I just read your story and you have had one bumpy ride , I hope that things will improve for you ,good that you have taken up good habits , carrot juice ,I am sitting here drinking mine !
Thank you for sharing .I have a big fear of vulva cancer my sister had this two years post cone for CIS at the age of 33, and I see that the link between the two is HPV .
I had other the last few months two cones for CIS and have glandular involvement so I know that there is a chance of it coming back ,but also I want to speak to my oncologist , I have a follow up tomorrow about watching out for vulva cancer .Sharing your own story makes us all aware of how much we need to try to look after our health and get regular health checks .
Best of luck ,Miri
skeetsmccann
08-26-2008, 08:05 PM
I've had vulvular dysplasia too. Surgically removed twice now, but I think we're looking at a third time within two years. I have a biopsy done every six months. I had a lymph node removed in February due to chronic infection that was resistant to antibiotics. I feel like the Bride of Frankenstein.
Pickle Eyes
08-26-2008, 09:12 PM
Sanibell, you have really been through it! You, too, Skeetsmccann!
I didn't know anything about vulvar dysplasia or cancer until about March or April when I was diagnosed with cervical cancer.
I really hope you both get some good information here. You are both in my thoughts and prayers.
I didn't know anything about vulvar dysplasia or cancer until about March or April when I was diagnosed with cervical cancer.
I really hope you both get some good information here. You are both in my thoughts and prayers.
Mod-S4
08-26-2008, 11:53 PM
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