Wide Excision of vulva with CUSA

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Hello,

I’ve read the posts on this board, and it seems no one is active anymore? I have been diagnosed with VIN2. I have surgery scheduled 7/25/22 which is two days before my 51st bday. I would love to hear from someone who has had a similar experience, guidance, encouragement. Anything. I know I need to ask more questions at pre-op, I just wish I knew what to ask. There is so little information about this, let alone recovery. I appreciate any information or assistance.

thx

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  • Belindasd1955
    Belindasd1955 Member Posts: 13 Member
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    I was just given my diagnosis, VIN grade2, same as yours. I'm 66. I will need an excision as well. I was just looking for info on the surgery and how that will go. They just did my referral today and my doctor said it typically takes about two weeks to get in for the appointment. So, I'm not sure when they'll get me in for the surgery yet. What do you know about the surgery and what to expect...same day? Hopefully we can each other thru this.💗

  • lauriegb
    lauriegb Member Posts: 12 Member
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    Hi Belinda! I am so happy to hear from someone but I am sorry that you are having to go through this. Yes, we can support each other!! My surgery is Monday so I decided to take the day off today and treat myself. It really helped my soul! The timeline sounds about right. I had my pre-op yesterday but frankly I’m not convinced people outside of gynecological oncology really know of this. My Oncologist didn’t seem really phased (other than I believe it was larger than she expected) but of course she sees much worse. (I bet she wins at poker!) 🙂 As you will see, there is next to nothing, at least best I could find. I did find a couple articles in the UK which was helpful. Basic things from Mayo, Cleveland clinic, etc. I have gotten a few things I hope will help after surgery. I’m thinking it will be similar post op like episiotomy, but no one has said. Evidently this has been around for a long time, but so few people have had it. I’m just really grateful it was discovered when it was. 🧡

  • Belindasd1955
    Belindasd1955 Member Posts: 13 Member
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    So nice to hear from you! I'm thinking positive thoughts that this will be a big step towards healing. I've found the same thing regarding lack of information. I also found a couple things from the UK and Australia, but just basic info from USA. I think my doctor (this was my first visit with her) is also used to seeing this that she didn't realize how shocking it was for me. I think that happens too often. To doctors, it's everyday. Yeah, i wondered about the comparison to an episiotimy, recovering from stitches in that area. After my biopsy I used a bag of frozen peas...ahhhhhh. Will definitely do that again. 💗 Thinking of you!!

  • lauriegb
    lauriegb Member Posts: 12 Member
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    So glad to know you are out there!

    So your doctor has seen this a lot? My regular Ob/Gyn had not but she knew it needed further testing. The Gynecological Oncologist had “ the poker face” I told you about. It didn’t seem to be a big deal to her, but I know she sees so much worse. I’m sure after seeing many sad stories, they become detached which is sad.

    I am going to try to attach a couple pictures of things I purchased through Amazon to hopefully prepare for post op. I’m not sure of the wipes w/ witch hazel; but at least I will have them. I read it helps with healing.

    I also bought sensitive skin wipes from cvs and bath wipes at Walmart in the handicap area in pharmacy. I also plan to wear lots of dresses for awhile. ( I live in Texas)

    I have never had children so this is all new to me. If you have any other ideas or suggestions, please let me know.

    All the best! Laurie

  • Belindasd1955
    Belindasd1955 Member Posts: 13 Member
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    Hi Laurie, a few of those things from Amazon look wonderful, especially the MomWasher and hot & cold pads! Well, and the witch hazel. I used it on my face many years ago and it was always cool and refreshing. After how it felt after the biopsy, that seems to be my focus now to prepare after surgery. Did they tell you how long you have to go commando? I don't wear dresses so I guess I'll have to do some shopping. I'm in Ohio so depending on when my surgery will determine just what i need to look for in a dress...sleeveless, short sleeves, long sleeves.

    Have they told you how long you'd be at the hospital? I have an appointment with the oncologist who will be examining me, and then scheduling the surgery. I know they'll tell me then, but my appointment isn't until August 15th. I'm just very curious about how this might go.

  • Belindasd1955
    Belindasd1955 Member Posts: 13 Member
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    I don't know if she's seen a lot of this but this gynecologist is the most thorough I've ever seen any doctor be! She looks to be about my age (66) so it could be that she's just practiced long enough to have seen this often, not sure.

  • Belindasd1955
    Belindasd1955 Member Posts: 13 Member
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    Thinking of you. I hope every day you feel just a bit better!! Anxious to know how you are today!!

  • lauriegb
    lauriegb Member Posts: 12 Member
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    Good morning. thank you for caring. Im actually not feeling too bad today. I just found a spot on my inner thigh that must have been hit with the laser on accident. Just to add to the uncomfortableness! Ha! No big deal though. I do believe having the laser is better, if you have the option. Its raw but no stitches. I read if you have invasive then they cant use laser. I am trying just over the counter pain meds today.

    Chat later

  • veronicacall
    veronicacall Member Posts: 1 Member
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    Laurie, thank you so much for the pictures. I am 6 weeks after surgery VIN2. It has been a tough road. I plan to purchase one or two items I did not know existed. It would have made the first part of my recovery so much better. I am taking it one day at a time. I appreciate your information.

  • nan24
    nan24 Member Posts: 9 Member
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    Hi there. I was diagnosed with VIN 3, a few weeks ago. I go see the gyn/oncologist this week. I have been reading a lot and feel like excision is in my future. Not looking forward to this but I am too afraid not to!!!

    Any advice would greatly appreciated.

  • skippingLiz
    skippingLiz Member Posts: 13 Member
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    Nan24 - did you have your surgery? Mine is in 2 weeks and I'm really not looking forward to it.

  • Belindasd1955
    Belindasd1955 Member Posts: 13 Member
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    Hi ladies. I remember fear of the unknown being the worst. Preparation & having some of the products above made all the difference. I also didn't do myself any favors trying to be active vs staying in a position allowing the incision to be uncovered. I'm a real clean freak (don't go only kitchen without my hair being up, wash my hands constantly, clean & disinfect kitchen & bathroom everyday...), but I got an infection & you definitely don't want that! The upside down period bottle was invaluable!!! A donut to sit on, also NECESSARY!! Follow the doctor's orders to the letter & if you think you could be getting an infection, DON'T WAIT to contact your doctor! I waited & ended up in the ER on the weekend needing antibiotics by IV and an infusion of potassium. ( I take a supplement & was too nauseated to take them for several days.) I'm so grateful for this forum. Vulvar cancer is pretty rare & it was hard to find information. Anything you wanna ask, I'm happy to answer. Thinking of both of you!

  • nan24
    nan24 Member Posts: 9 Member
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    Yes. 3 weeks ago. Had WLE upper labia and also down on the fourchette. The fourchette is the area that has given me the most pain. I know it could have been much worse. Get the peri bottles. I bought 2 so I would have one in each bathroom. Also - order some neosporin with lidocaine in it ( also a tube of just lidocaine 5% from Amazon) it helps. Just check with Dr before using. I will say that it took 2 weeks before I really felt like doing much of anything. I also got a boppy pillow for when I wanted to sit in my chair vs. Laying down all the time. I still have some bleeding in occasion so I have to wear a pad most of the time...uugghhhh.

    I have my 4wk follow up this coming Thursday.


    Best of luck to you!

  • skippingLiz
    skippingLiz Member Posts: 13 Member
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    Thank you for your reply! Ouch! One of my lesions is in the fourchette region, and it stung and bled from the punch biopsy for over two weeks ... it's a troublesome little area. I did get a peri bottle to help with stinging from the biopsy ... I agree that it was a great investment. Did you have to stay in the hospital overnight or did you get to go home the same day?

  • nan24
    nan24 Member Posts: 9 Member
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    I went home the same day.

  • nan24
    nan24 Member Posts: 9 Member
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    Yes. 3 weeks ago. Had WLE upper labia and also down on the fourchette. The fourchette is the area that has given me the most pain. I know it could have been much worse. Get the peri bottles. I bought 2 so I would have one in each bathroom. Also - order some neosporin with lidocaine in it ( also a tube of just lidocaine 5% from Amazon) it helps. Just check with Dr before using. I will say that it took 2 weeks before I really felt like doing much of anything. I also got a boppy pillow for when I wanted to sit in my chair vs. Laying down all the time. I still have some bleeding in occasion so I have to wear a pad most of the time...uugghhhh.

    I have my 4wk follow up this coming Thursday.


    Best of luck to you!

  • skippingLiz
    skippingLiz Member Posts: 13 Member
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  • nan24
    nan24 Member Posts: 9 Member
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    Oh yes. 800 MG ibuprofen alternated with 650 MG Tylenol helped a lot. Added in a stronger pain med when needed as well

  • nan24
    nan24 Member Posts: 9 Member
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    Yes. 3 weeks ago. Had WLE upper labia and also down on the fourchette. The fourchette is the area that has given me the most pain. I know it could have been much worse. Get the peri bottles. I bought 2 so I would have one in each bathroom. Also - order some neosporin with lidocaine in it ( also a tube of just lidocaine 5% from Amazon) it helps. Just check with Dr before using. I will say that it took 2 weeks before I really felt like doing much of anything. I also got a boppy pillow for when I wanted to sit in my chair vs. Laying down all the time. I still have some bleeding in occasion so I have to wear a pad most of the time...uugghhhh.

    I have my 4wk follow up this coming Thursday.


    Best of luck to you!