Vulvar Cancer Support Group

Cancer of the vulva (also known as vulvar cancer) most often affects the inner edges of the labia majora or the labia minora. If you or someone you know has been diagnosed with vulvar cancer, use this community to talk about your experiences and gain support through other people going through a similar struggle. You're not alone

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humorhasit 03/11/2016

There is so little information out there about post-op care for vulvectomy. What I do find is a general "keep it clean, dry and don't sit on it" spiel. Pretty sure we have that covered.

My partial vulvectomy is scheduled for March 31st. I've been digging for information as much as I can to be prepared. This is what I've managed to put together so far:

Supplies:
- Sitz bath (usually provided by the hospital)
- Ring pillow (or a neck pillow depending on preference)
- 100% cotton panties and loose clothing
- Ice packs (can make these at home with rubbing alcohol and water)
- Stool softener (and laxative if necessary)
- Squirt bottle and/or hand held shower head (I'm opting for both. Bottle for travel and work, shower head for home)
- Peroxide
- Distilled water
- Topical cream such as lidocaine (if necessary) and/or silvadene (Rx from Dr.)

Some tips from others:
- Use a folded towel to sit on when soaking in a tub
- Use a pillow between the knees for sleeping on side
- Air out often and use blow dryer on cool setting after cleansing
- TLC, whatever makes me comfortable
- Leave the panties in the drawer for the first few weeks and go commando
- Have things bedside to avoid frequent trips for this and that
- Keep bathroom supplies organized and within reach of the toilet and tub (I put together a rubbermaid caddy for each and a travel pack)
- Find and maintain emotional support outside of family.
- Keep my sense of humor intact

I would love to hear from others. What did you do post-op to help ease the pain and discomfort, aid healing or help with emotional distress? What tips and supplies would you add to the list?

nancyseawellsanders 03/18/2016

I had a partial vulvectomy on March 11. I assume your partial is the top half? (Anterior)? I am happy to say that my experience was much better than I had expected, with everything I had read. The pain was totally tolerable, and about the same level of pain I was experiencing before surgery. Of course, that being said, I was in pretty bad pain! LOL....I have not had to use a pillow. I do sit most of the time on the sofa with my feet up on the coffee table, though. It is more uncomfortable to sit straight up. I found that for the anterior portion, that the sitz bath wasn't doing a lot of good - the water wasn't reaching the area, so I have added taking the bag that comes with the sitz bath and filling it with water and letting the water run over the top half. I'll fill the bag a couple of times. I haven't used any kind of ointment. I think they want you to keep the area clean and dry. I have been going commando at home. I had some minor bleeding for a few days so on those days I wore loose cotton panties with a mini pad. I do use Miramax daily and make sure I get enough fiber. The last thing you want is to be constipated while you're healing.

Best wishes on your surgery. I hope all goes well, you have minimal pain, and that you heal quickly and completely!

rlexus 03/20/2016

I so wish I had done more research like you have before my surgery. Your list is very perfect! Do the bath tub with iodine in water ( should look like tea) the sitz bath from hospital does not help at all and is so hard to do at home. You will need pads....long and thin and for a while...I am still having to wear them. (Surgery was Feb 8)
Hope this helps some if you have any questions that I might be of help with feel free to reach out to me! Good luck! Hugs and prayers!

nancyseawellsanders 03/21/2016

Glad to hear someone else say they are still wearing g pads. I was beginning to get concerned...I am 10 days out from surgery and still having a small amount of drainage. I see the doctor in two days so I will be sure to ask about it.

rlexus 03/21/2016

I am 6 weeks post op and it is a lot lighter but so annoying....having not had to deal with that in 15 years I forgot how much they suck. Everyday I hope and pray the drainage will stop but it's still there. Most of my stitches broke on day 2 so I have had to heal from the inside out....they told me that is why I still have the drainage but should go away in another week or so.

rlexus 03/22/2016

Good luck at you Dr appointment tomorrow!
Hugs and prayers!

heimbca 03/23/2016

Will you be in the hospital for very long when you have your surgery? How did you know you had cancer--what were your symptoms? I will be getting a biopsy in a couple of weeks if the present irritated area around my whole inner labia hasn't healed up with estrogen cream and steroid creams. I don't know what cancer looks like--I look in that area every day (sorta difficult but finally figured it out). Keep posting and let us know how you are doing. It's scary I know. I am scared of the surgery if I have to have it (have atrial fib and am on blood thinners which will have to stop) so nervous about possible stroke too. Nasty stuff.

humorhasit 03/24/2016

Nancy, my partial will be the entire left side and a good portion of the perineum. I'm looking forward to just getting it over with. The anxiety has been calmed a little by preparing and staying busy. My husband installed the new shower head and thankfully it has multiple settings so there is a gentle spray, whew! It's encouraging to read your experience and I'm glad you are doing well

humorhasit 03/24/2016

Rlexus, excellent idea with the iodine, adding that to my list. I stocked up on pads but didn't get the thin ones, so those will be added as well. Thank you :) I hope you are doing well.

heimbca, I should be able to go home the same day as my surgery, it's considered outpatient. I have precancer according to the biopsies, and lichen sclerosis. I have had pain in my lower left side since last June and a wicked itch in the vulva area that came and went. I honestly had no idea until my gynecologist appointment and she asked me about the discolored lesions. She believed it was melanoma. I've never been happier about a doctor being wrong. You're in my thoughts and prayers for clear biopsies.

Just for giggles... When I saw my gynecologist, she had just rolled up to the table when leg cramps hit me. I yelled "Cramp!" and she literally kicked her feet and went rolling so fast even the nurse started laughing. My legs went straight up in the air and I had to stay like that for a few minutes while saying, "Well, this isn't awkward or anything." Thankfully she has a great sense of humor ;)

rlexus 03/24/2016

Lol! Mine was everything below the clit :( and then 2 spots they used the laser on. I think the laser spots were the worse... When you go to the bathroom they burn like hell.I hope Nancy's appointment went well.
Honestly the pain wasn't all that bad, I was so worried about infection and keeping it clean and dry.
I used the baby wipes every time I used the bathroom (without alcohol and perfumes) and it helped a lot!
Hugs and prayers!

skinnybinny 03/28/2016

I had a partial.

They did not send me home with a sitz bath or anything at all and did not give me any instructions.

My daughter asked a few questions like will there be packing which they told her no.

First off they did pack it and by the time I figured that out the packing had turned to cardboard and was irritating the heck out of me.

I was a big baby about the whole thing and didn't even try to look or touch for days. As long as I could use the bathroom without difficulty and shower I wasn't too concerned. No sitz bath necessary, no ointment.

Sitting and pain were the biggest problem for me and I've gone through numerous donut cushions.

Best of luck for your surgery and your healing.

lookbeyondtheclouds 03/28/2016

Hi, I had this surgery in August, and your list looks really good. I have just a couple of things to add:
having a couple of "easy on" lightweight nightshirts will make your life easier, so you can go commando, use the squirt bottle, etc. easily
24" x 24" "puppy training pads" (waterproof blue with soft white backing, cheap at WalMart) are convenient disposable protectors so you can lie on a bed or couch without worries
I am used to being really active, and lying around was difficult. Many nights I awoke, unable to get back to sleep. An over the counter, natural product that really helps is "Midnite." CVS has a generic brand. Great product with no side effects, just additional 3-4 hours of sleep.
The "power of positive thinking" is huge in healing research! For me, this meant only uplifting tv and movies, reading, people, prayer.
Good luck with your journey. Please keep us posted on how it goes, and I will be thinking about you and keeping you in my prayers.

rlexus 03/31/2016

Sending hugs and prayers today! We are here if you need us!

humorhasit 03/31/2016

I bought a boppy and underpads. Thank goodness I did! The bleeding would have ruined my bed :x Thank you for that tip Look!

I woke up, screaming, after the surgery and was in the worst pain I've ever experienced. That went on for twenty minutes while the nurse kept loading me with the next stronger pain med.

Since I've been home, I've been up and around quite often, used the ice packs, am currently sitting on this wonderful boppy with an underpad. I can only be up for a short period of time, I had a severe round with nausea and vomiting at the hospital and home (this is par for the course when I have sedation and pain meds).

Honestly, it hasn't been too bad except for the wake-up with no pain meds :x I'm feeling pretty good and have been able to keep the pain under control. My daughter's cat hasn't left my side, he's been in bed with me since I got home and twice tried to lay on my vagina >.< He hasn't left me alone all week really. He knew something was up and has been such a cuddly companion when I'm laying down. Apparently he believes he has magical cat healing properties to want to lay on my sore spot, LOL!

Thank you for the support and tips, things are going smoothly so far. Much love ladies, the inspiration and support from all of you has been a blessing.

lookbeyondtheclouds 04/02/2016

Thanks for the update, Humor! I'm glad you're off the ledge and onto smoother terrain, being able to manage your pain. Sounds like you have a "comfort cat" helping your endorphins (o:.
Good Luck with your healing--glad I could help, keep us posted on how you're doing.

humorhasit 04/03/2016

I didn't expect the swelling to be this bad. It looks as if someone attached a hose and pumped up the remaining tissue. I now walk as if I just finished riding a bucking bronco. Swing one foot forward, then swing the other. My husband gave me a "Yee Haw!"

I have three separate lines of stitches for a total of 74. The oncologist told my husband he went ahead and biopsied my cervix while doing the D&C. I should get the results of the biopsies and margins in a few days. He seems confident everything will come back clear.

Ice packs have been the saving grace in all of this. I'm extremely sore after a trip to the bathroom but as soon as I lay down and put an ice pack on, I get relief.

The cat, Merlin, is determined. My husband locked him out of the bedroom last night and he yowled horribly until we let him back in. The night before, he was really ticked off and started knocking things off the counter. A few nights of his shenanigans, we caved and now allow him to sleep with me at night.

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