In my last blog I shared my VIN journey up to the day before my radical partial vulvectomy surgery. If you haven't read that blog post yet you can catch up with my story by reading it here. It has now been nine long weeks since my surgery. I'd like to share with you my healing journey over these past weeks. However, first I need to address two things before really getting into my story.
I am writing and sharing this very intimate and personal story for two reasons. One is to do my part to bring awareness to this rare disease, and hopefully save at least one woman's vagina/vulva or possibly even life. The second reason is to try to help other women who suffer from this disease. However, I realize that this is a very intimate and uncomfortable subject for some people. I'm not going to be all graphic and gross, but I will be very open and raw about my surgery and recovery. So if you prefer not to read about those intimate details you shouldn't read any further.
I'd also like to address the women who are reading this because they too are battling VIN, and are searching for answers, knowledge, and support. My hope is by being vulnerable and sharing my story openly that other women going through this won't feel as alone, and it helps them on their healing journey. You ladies are the reason that I'm going to share such specific details of my surgery and recovery. I feel if you know the actual details then you can use it as a point of reference for yourself. Please remember that everyone's case is different. Your journey will depend on your situation. I pray blessings and healing for each of you.
Now to get to my story. I'll start with a little background information. My surgery was scheduled for a Friday morning. My doctor had told me to plan on staying in the hospital until Sunday, but it would depend on how I was doing. I would need to have a catheter in for at least the first twenty four hours or more to keep the area clean, and to keep me in the bed. He said if I did really good that I could possible even go home on Saturday. My husband took off ten days from work so that he could stay in the hospital with me, and to be home to take care of me afterwards.
The day before my surgery I was such a bundle of nerves. I truly trusted that I was going to be alright, but I was really not looking forward to the process of that healing. I couldn't focus to work, but I really felt the need to be creative. I decided to paint my #savetheVs sign to use for my blog, and to take a picture with before my surgery. It's the picture above with my awesome husband. It did help pass some of the time that day. My husband and I both were very anxious that night. Neither of us slept well.
The morning of the surgery I took a Valium before leaving the house. That really helped me stay calm, positive, and strong. The surgery went well, and I was moved to a room by around lunch time. Once in my room with my family, my husband explained that the doctor told him that the surgery went well. He told me that the doctor said it was about a three inch cut. I just tried not to think about it.
I wasn't allowed out of the bed for the first day. However, it was driving me nuts being on my back that long and I talked one of the assistants into letting me stand up for a few minutes. When she told the nurse that I did good getting up I thought the nurse was going to flip. She explained to her that I was on bed rest, and not allowed up. Looking back maybe I should have stayed in the bed, but man my back hurt and it felt good to just stand for a few minutes. Luckily there was no harm done.
I was also only allowed a liquid diet for the first twenty four hours. I was not made aware of this before my surgery, and I was not happy about it at all once I found out. I do understand why, but I still wasn't happy about it. However, I ate my liquid diet realizing it would make certain things easier for me, and just reminded myself this was just the beginning part of my healing journey and it would get better.
I took all of the pain medicines I could all day and most of the night Friday. I knew they wouldn't let me go home if I was still taking the morphine so I stopped taking it early Saturday morning. After that I just took the pain pills. My doctor came in late that morning to check on me. Him and my husband looked at the surgery site, and he said it looked good. He said because I was doing good that I could start on a regular diet, and get the catheter out. That meant I could get up and move some too. He said that I could go home later in the day if I was able to pass urine, and hold down solid food. I was able to do both so I was able to go home Saturday afternoon. I was so glad to be going home. There's no rest to be found in a hospital.
An interesting side note is that none of my nurses even knew about VIN. I knew that it was rare, but I was still surprised that not even one of my many nurses had heard of it. I had to explain it to every one of them. They were all very helpful, kind, and sympathetic of my condition. One even went to the labor and delivery department of the hospital to get me a squirt bottle to rinse with after my catheter was removed. I am very thankful for their kindness and care.
My recovery instructions were pretty simple. Don't lift heavy stuff. No sex obviously. Rinse after using the restroom, and then pat dry. It's important to keep it dry even if you have to use a blow dryer instead of patting dry. Movement as tolerated. Ice pack as needed. Pain pills when needed/as prescribed. I could tolerate very little movement so I was pretty much confined to the bed for the first two to three weeks.
I didn't want to look at my vagina. I could feel how swollen it was. I could feel how big of an area it was. I didn't need the visual. I was curious about the 3 inches the doctor had said because it sure felt bigger. My husband who checked it for me, and doctored me said that he thought it looked more like four inches to him. We never actually measured it to find out. To give you an idea of the size, it started beside my rectum and went all the way up to just beside the top of my clitoris. I was cut very close to all of that, and a large area removed. Then the skin is pulled tight to close up the whole area. Because of how big and far back my incision was, and how tight my skin was pulled now I wasn't able to sit flat even on a donut pillow. Also, walking just rubbed things together which made me feel raw and on fire pretty fast. Therefore, I stayed in bed unless I had to go to the bathroom, and that was about it.
I am very blessed to have a wonderful supportive husband. He waited on me, and got me everything I needed. Kept me fed. Kept me in ice which was my best friend. Helped me with pillows. Whatever I needed he was there. When he had to go back to work it was on second shift. So he would leave for work, and then about 2 hours later my sixteen year old son would get home. Then he would take care of me. I don't know what I would have done with out my two favorite guys taking such good care of me. I felt so spoiled. It was actually hard for me to be the one getting taken care of because I've always been the caretaker of the family.
Emotionally this was a very hard time for me. I got so tired of looking at the same four walls and watching TV. I was so sore from only being able to lay flat, or on my sides/hips. My vagina hurt constantly. I was really surprised by how much the stretching skin hurt. That really caught me off guard. Ice gave me the most relief. I took Aleve, and used a natural pain medicine.
I couldn't and didn't want to use the opioid pain pills they prescribed me. One because they gave me such bad constipation, which was a terrible thing considering where my incision was, and secondly because they are just so dangerous. If you are having this surgery do yourself a favor and start with the stool softener the day before surgery, and continue till you're done with the pain medicine.
I felt like I was just numb. I couldn't focus on TV, phone apps, or anything. I just kept telling myself over and over that everyday was going to get better. I can do this. It's going to get better soon. It could have been so much worse. I would be hurting and depressed and sore and just done. Then I would realize that I'm not allowed to be done. I don't get that choice. I have to go through this, so just get through it as positive as you can.
Everyday did get better excluding those first few days. I cried at least once every day, but really only my husband knew that. I would cry because of the pain. I would cry from the frustration of not being able to do anything. I had worked hard to build my little business and it was finally getting to a good place. I knew everyday I kept it closed the harder I was going to have to work to build it back up. I would cry because of the overwhelming emotions of having my vagina forever changed. I would cry from just being overwhelmed by all of it. But, always I would pull myself emotionally back up and remind myself everyday is going to be better. My healing was coming. Meditation, prayer, and Reiki really helped me stay focused on just getting through each day.
About two or three weeks after surgery I started trying to sit on my donut pillow everyday just to see if I could. I was always disappointed because I couldn't. My healing was taking longer than I wanted and had anticipated. I could tell others where wondering why I was still in the bed. Was I that bad off? No, but I still couldn't walk much with out getting raw, and I couldn't sit. So in the bed reclined is where I stayed. I would remind myself that I wasn't just being lazy. I was taking this time to focus on my healing so that I could do whatever I wanted later. I had to remind myself of that a lot.
I put off looking at my surgery site until the forth week. I didn't want to see it all swollen and stuff. I figured at this point it was closer to what it was going to look like healed. I waited till I was alone, and used a mirror. I have to agree with my hubby, it did look more like four inches. I kind of knew what to expect from my research, and from just feeling the site when I cleaned it. I didn't start crying immediately. I just felt kind of numb again.
Then over the next few hours I was processing it and crying on and off. It's hard to put into words what I was feeling. Mourning the loss of a part of myself. Knowing I'll never look normal again. Deciding that's ok because it could have been so much worse. I had to remind myself again that I was lucky. I will heal, and be fine. It seems like after that day things started getting better faster physically and emotionally. Then again that was the half way point of the eight week recovery period.
I spent the first four weeks pretty much in bed or the sofa. From four to six weeks I was partly in the bed and partly able to sit some to work. From six weeks to eight weeks I slowly built up to working mostly full days. I should clarify that I work from home so I'm able to work some, then rest, and then go back and work some more as needed.
Today makes nine week since my surgery. All the incisions are finally healed up. I'm still a little sore. I have to switch between sitting and standing because I still get sore sitting for to long. I still have to make sure I don't walk to much and over do it. By to much I mean stuff like going Christmas shopping all over with my mom a few days ago. Opps! Maybe that was to much, but I survived! I'm still using the donut pillow when sitting, and assume I will be for a while longer. I will be happy when the day comes that I'm not aware of my uncomfortable vagina pretty much all the time like normal women. I have moments now, but then I forget and overdo it. I'm just going to continue to take it one day at a time because each day is better for sure.
I had several people tell me how strong I was with dealing with all this. My hubby told me at least once a day. I didn't feel strong. I felt like an emotional wreck! I felt anything but strong! I felt like I was just doing what I had to do to survive the minutes, hours, and days of healing. The pain came in waves most of the time so I would "ride it out" till it was less severe. I would allow myself a little time to sit in my misery, and then I would mentally force myself to think positive. I would literally repeat over and over in my head sometimes "Tomorrow will be better" until I believed it again. That's how I survived and found my healing. I pushed myself to be strong, and leaned on my loved ones. I realize now though that I was strong. Being strong is being afraid, in pain, and all that yet still rising to the challenge of doing what you have to do with the best positive attitude you can.
I'm happy to say that I am basically healed, and feeling so much better. The scarring is still tender, but those things take time to completely feel better and heal. I have my three month check up in January. I'll have to keep getting checked several times a year for the time being because unfortunately VIN can come back. Now that I know what I'm dealing with I will be hyper aware if I feel anything unusual with my vagina. I'll be going straight to my doctor and getting it checked now that I have a doctor that is familiar with VIN. I am so thankful for my healing, and getting my life back.
For the women who are reading this who are facing VIN now, I'd like to encourage you that it's going to be alright. This to shall pass and you will find your healing and relief from the symptoms. If you are having a vulvectomy then I highly recommend ice packs, donut pillows, stool softeners, and a water squirt bottle. Also, remember that everyday after surgery will get better. Stay strong. I also want to encourage you to share your story with others in whatever way you are comfortable to help spread awareness of this disease. We can all do our little part to help save as many women and vulva's as possible. Together we can #savetheVs!