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Vulvar Biopsies & Lichen Sclerosis Vulvar Biopsies & Lichen Sclerosis

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Unread 07-31-2004, 11:12 AM
Vulvar Biopsies & Lichen Sclerosis

In July 1999 I had a vulvlar wide excision for VIN I. Then in January, I had two biopsies which came back as Lichen Sclerosis. My GYN gave me Clobetasol ointment and told me to come back in 6 months for another colposcopy. I had the colposcopy yesterday. He found two more spots to biopsy. I'll go back to get the results of those on 9 Aug.

Does anyone else with Lichen Sclerosis have colposcopies every 6 months? Am I having them because I've had VIN in the past? I realize these are questions I should ask my GYN and I plan to on my next appointment. I just wondered if anyone else is in a similar situation. I am glad my GYN is being thorough, but those darn biopsies are not pleasant!

I also had an endometrial biopsy yesterday due to endometrial polyps found during a vaginal ultrasound I had in April after I began having spotting and heavy biweekly periods.

Any time I have biopsies I get rather concerned about cancer. That's why I chose to post this under cancer concerns. Another concern is that I have HPV. (I don't know which strain.) I had an endometrial biopsy (he removed a polyp in the office - ouch!) a little over a year ago and it came back benign so I am very hopeful this biopsy will be benign also.

My husband is convinced that I need to change GYNs and I have some concerns myself. If you will bear with me on this very long post I will share some of my reasons and see what you think.

1) Was the vulvar wide excision the right choice of treatment for VIN I? (This was outpatient surgery. After surgery I noticed a rough spot on the right side of my head and found dried blood in my hair. The next day my right eye was black! My GYN never mentioned anything weird happening during surgery.)

2) In December 2001 (age 42), I was put on femHRT. I had not had a period for 3 months, had significantly thinning hair and a hormone test revealed I was in perimenapause. After that I started having periods regularly and my hair thickened. By December 2002, I was still having regular periods. I was taken off femHRT. The next period was over 6 weeks long.

3) When I first saw my GYN in 1999, he was associated with a group of doctors at one medical center. Before my next annual exam I received notification that he had gone into practice for himself. I had to pay $24 to have my medical records copied and go pick them up from the medical center in person to give them to him. (They were lengthy because my first GYN had faxed all his records to my new GYN.) I saw him once or twice in his new office before he moved into a practice with a group of OB/GYNs at the only other hospital in town. I saw him there once. Then he moved into practice for himself at his current location in 2001. He has had at least two different partners at this office. The first partner I saw there was a woman and now he has a man for a partner. Does this seem like he doesn't get along with other doctors?

When I go back for the results on the 9th, if he recommends surgery, I think I will definitely seek a second and possibly third opinion. I was scheduled for a D & C and hysteroscopy the first week in April, but I backed out and opted for the endometrial biopsy instead.

I am very nervous about general anesthesia even though I've had five prior surgeries!

I would appreciate any input anyone can provide. Thanks for taking time to read this lenghty post!

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Unread 07-31-2004, 07:26 PM
Vulvar Biopsies & Lichen Sclerosis

(((Dee))) Welcome to Cancer Concerns! I'm glad you found us!

I can't answer all of your concerns, but hopefully by the time everyone has responded, all of your concerns will have been addressed.

I'm not in exactly the same boat as you. I just had laser surgery for vulvar carcinoma-in-situ (VIN III/CIS). We've been watching for it for a while since when I had my hysterectomy there were abnormal cells found at the vaginal opening. So, I have had a colposcopy yearly since my TAH. I'm guessing I'll be having one at least every 6 months now, since I've been treated for VIN. I agree--those biopsies are not fun things. If your doc doesn't use a numbing cream, ask for one. This last time I had Xylocaine cream applied to the area, waited 30 minutes and then had the lidocaine injection. It cut my discomfort back about 50%. And of course, I live with an ice pack attached to me for the first few days.

Anyway, I don't have lichen sclerosis, but I know that it typically does not become cancerous (though there are instances where it has become cancerous for some women). So, I'm guessing that your colpocopies are for the VIN. A wide excision for VIN I sounds rather aggressive to me. I know a lot of times it is simply monitored at that level because it can spontaneously regress. My gyn/onc preferred to do the laser removal over the wide excision because women typically heal faster from it, and he believed that the outcomes were similar. But perhaps the lichen sclerosis made that not an option for you.

Personally, I will not complain about frequent colposcopies--I'd rather be thoroughly looked at and get a little more piece of mind. Now, if I end up biopsied on a regular basis, well, I won't be nearly such a good sport!

You said you have HPV--is that known because of the VIN or because you've had abnormal PAP's or other symptoms? Just curious.

It's never a bad choice to get a second opinion from another doc. Sometimes it helps to hear the same information come from a second person. Sometimes you get different information which might help you feel more comfortable with the choices you make in the future. Different docs do things differently. That doesn't mean necessarily that one is the wrong way and one is the right way. It may just indicate that Doctor A has developed a preference for Treatment A and Doctor B has developed a preference for Treatment B.

I wouldn't necessarily worry excessively about the fact that your doc has had a couple of different partners. Sometimes a doctor may join a practice and decide they want to go out on their own or go with a bigger practice. Sometimes they don't see eye-to-eye on office management. Sometimes they may have personality clashes. It could be any number of things, and does not necessarily indicate that your doctor is not a good doctor. You're going to have to go with your gut there.

Good luck! I hope your biopsies come back negative. Until then, I will be keeping you in my thoughts and 'ers. Keep us posted!

Unread 07-31-2004, 08:47 PM
Vulvar Biopsies & Lichen Sclerosis

Thanks for the reply, Jeanine!

I had several abnormal PAP smears during 97 and 98. I had the cryo (freezing) and still had an abnormal PAP in 1999. I was told I needed a D & C. I was seeing a GYN in the small town where I live and didn't want to have surgery at the local hospital. I decided to seek a second opinion from a GYN in a nearby city with much better medical facilities. That's when I found my current GYN. He did a repeat PAP and it was abnormal. He recommended trying the cryo treatment again. I didn't expect it to work, but I guess it did. I haven't had another abnormal PAP smear. During my exam he noticed some white areas on my vulva and took some biopsies. They came back VIN 1. (I know I had the largest white area for some time because my previous GYN had asked me if they bothered me, but when I said they didn't, he didn't seem concerned.) After that I had the vulvar surgery. He also told me I have HPV after some test result. I don't remember if it was after the PAP or the biopsies.

After doing some research, I thought the wide excision for VIN 1 was a bit agressive, too. I had that in July 99. I was not diagnosed with the lichen sclerosis until I had two biopsies in January of this year.

Thanks for the suggestion about the numbing cream. I'll definitely mention it to my GYN next time around. The injection did not seem as painful yesterday as it did the first time. I guess it was because I knew what to expect. The first time was a real surprise!!

I am glad I am having the colposcopies more often, too. I do want any new problem areas identified as early as possible. I just wonder if I am going to have to have biopsies more often because you can't really tell lichen sclerosis from VIN without a biopsy.

I appreciate your viewpoint on the situation with my GYN moving from place to place. I had not considered it in that light. I do prefer going to him in his private practice office. The second large practice he was a part of felt like a "cattle call". Maybe he didn't like that environment either.

Thanks again,

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Unread 07-31-2004, 11:51 PM
Vulvar Biopsies & Lichen Sclerosis

If you're looking into second opinions (never a bad idea!) then I would recommend seeing a GYN-oncologist for further culposcopies. They're the experts, and will know what further steps you might need to take, if any.

Good luck to you. I think, since you do have these concerns about your treatment in general, it still might be time to look around for another GYN. Maybe you'll find someone that you're more comfortable with -- or maybe you'll get some confirmation that your first GYN has been on the right track after all.

Unread 08-01-2004, 10:22 AM
Vulvar Biopsies & Lichen Sclerosis

Thanks for your advice, Audrey!

After reading so much about gyn-oncologists on this site, I looked for one in my area, Southeast Alabama. I haven't located one, yet, but I'll keep looking!

Unread 08-01-2004, 01:01 PM
Vulvar Biopsies & Lichen Sclerosis

Try the Society of Gynecologic Oncologists:

Hit the find-a-doc button and then put in your geographical info. I hope this helps!

Unread 08-01-2004, 10:43 PM
Vulvar Biopsies & Lichen Sclerosis

Hi there,

You got some great answers, i just was going to adress the black eye and blood in your hair after your surgery. I have seen several people after surgery (when going to their first post-op), who have similar things. (For example: broken blood vessels in the white of the eye; blackened area of an eye). I was told that sometimes this happens when someone is coming out of anesthesia and they are not yet totally concious - they can move around alot (get aggitated) and get a whack in the eye. Most times the anesthesiologist has it better under control, but sometimes this happens.

Don't know if this is how your deal happened, but some food for thought. Take care, Judy
Unread 08-02-2004, 06:37 AM
Vulvar Biopsies & Lichen Sclerosis

Thanks for the link, Jeanine! I found one in Columbus, GA and two in Pensacola, FL. They are all within a days drive.

Thanks for the possible cause of the black eye, Judy. I didn't think of that. It took me by surprise since I never received a black eye even with the two surgeries I had on my sinuses.

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