Since writing my blog post “My battle with Vulvar Intraepithelial Neoplasia (VIN): Part 2 After Surgery” life has shown me that as per usual things don't happen like we want or expect them too. I left off on that post on a positive note saying basically with a little more time I'll be completely healed and back to normal. Unfortunately that isn't exactly how it went for me. Knowing that truth, I have felt like the women who find my blog because they are dealing with this same issue deserve for me to be as open about this as possible. I don't want it to appear that life just goes back to completely normal after this surgery because that's not what always happens. It just depends on each individual persons case. So I've really felt led to share the next season of my healing journey with you fellow warriors fighting this battle who may need to read that you're not alone.
My vulvectomy surgery really shook up my life, and changed my normal in ways I never thought about. I am still finding my new normal. I'll be sharing my emotional and physical journey to my “new normal” in hopes that my being vulnerable and sharing this will help women on the same or similar journey as me.
This month is a year since my biopsy and diagnosis. I remember being scared and nervous about the diagnosis, upcoming surgery, and the 'unknowns' of all of it. I always try to find the positive in situations to help me to deal with things and get through them. So what I told myself was basically that we now knew what it was, at least it wasn't cancer yet, the surgery would remove the problem, and once I got past surgery and healing from that my life would go back to “normal”. Oh how naive of me! I am glad that those thoughts did get me through those horrible first months after surgery, but it really set me up for disappointment, confusion, and depression after that eight week recovery time.
I really believed I would get to a point of not being aware of my vagina/vulva like a normal women. As the days passed it did get better, but not the complete healing I expected. The wound healed, and the VIN itch/irritation/pain was gone. However, I've never gotten complete relief. I still have irritation and discomfort almost daily. I still have to sit on a cushion or donut pillow. I have to limit my activities to not over do it and cause a flare up. I can't sit to long or walk to much. As time passed and I saw I wasn't getting back to normal I really started to get depressed and angry. I had done what I was supposed to do so why wasn't I any better than I was? It was very frustrating.
On top of that I had to put my Etsy shop on vacation mode for about a month or so because of my healing. At the same time Etsy did a bunch of changes that helped them, but not so much us small business owners. This caused my sales to drop to literally nothing. I started back working my business as best I could, and was still getting no sales. It was all piling up on me.
I felt so let down by God and life because I was still suffering from the VIN/vulvectomy issue, and my little business that I worked so hard to get to a good place was failing. I pushed myself so hard to work as full of a day as I could even when it was hurting me, and then to get no results from that hard work was crushing.
On top of all that I was also dealing with people thinking I was taking to long to heal. No one actually said those words to me, but I would get comments like “You're still using the donut pillow?” “It's been this many months why aren't you better?” “It's been this long why can't you do this activity?”, and such. Sometimes it wouldn't be so clearly verbalized, but the “are you faking at this point because you should be better by now” attitude will still be in there and implied. This attitude of others started making me believe something was wrong with me, and maybe I should be more healed by now.
All this piled up on me, and the depression set in. I stopped working my business as much because why bother when nothing I did helped, Etsy only seems to care about themselves, and most of my own family and friends didn't even support me or believe in my business. I was giving up on ever having relief from my physical issues as well. It was a pretty dark time for me. I felt so alone. My doctor while great at diagnosing and surgery was no support for the healing process and how things would be after surgery. I realize he's a man who's never had a vulvectomy, but you'd think he or his staff would have more after care suggestions. I had no clue if what I was experiencing was “normal” for post vulvectomy or not.
I really needed the support of other women facing this issue, but had no luck before surgery finding anything like that so I hadn't even tried since surgery. I felt so alone, and couldn't understand why I was still having a different type itch, irritation, and the physical limitations I was having. I got desperate and finally started searching again for some type of support group or information group on Facebook. This time I was able to find a group. I found the “Vulvar Cancer & VIN Support Group” on Facebook. It's a private group, and you have to have been diagnosed with either Vulva Cancer or VIN to request to join. It was just what I was searching for, and I joined immediately.
I am so very blessed to have found this group. It has truly been an answered prayer. I quickly realized that I was not alone. The group had maybe 200 women at the time? From their post I saw that everything I was going through was normal for the disease's we are dealing with. I realized that I wasn't crazy in the things I was thinking and feeling. It was such a relief to know that other women going through the same thing as me where feeling and dealing with the same things. It really did help my depression lift.
The group has grown so much just since I joined earlier this year. There are now 452 members of this closed private group from all over the world. We are very open and raw with each other. It's our safe place to say and ask all the things we can't to people who don't have this disease so they don't understand or have a clue. It truly is a blessing from God, and I appreciate the women who formed it and worked so hard to make the group what it is today while at the same time dealing with their own issues.
If you are facing vulva cancer or VIN I highly recommend that you join this support group! The information you get is so helpful. I so wish I would have found it before my surgery. All the tips they have for dealing with post operation issues would have really been helpful. It is the online support group you've been looking for! Amazing supportive fellow warriors!
I do feel like I should give a warning before anyone joins though. As much as it has saved me and helped me with my journey, it has also brought me down. We are very open about our individual diagnoses and journeys in the group because that's what it's for. There are women who have extreme cases to mild cases. Women with VIN 1 to women with multiple diseases at once. So you will see women who have recovered quickly with no issues, to women whom have lost everything down there and are left with nothing but two bags. It's hard seeing that as someone with these diseases because we know that we are never really out of danger. Both diseases can come back. VIN can turn to cancer. Cancer can spread. This is a depressing truth that I personally don't like to think about. So some day's I just can't read the post because they take me down a negative rabbit hole that I don't need to go down. Other days it's uplifting to know your not alone, and to be able to help other women in similar situations. If you do decide to join just know that it's normal to not be able to handle the group all the time. It's alright to come to it when you need it, and step back when you need a break.
The support group really helped me get control of my depression because it showed me that what I was thinking, feeling, and experiencing was normal for the disease I am battling. It helped me to be able to better let go of it when people would make insensitive comments and insinuations about my healing process and speed. Most people don't actually mean to be offensive, they just don't know what to say so stupid crap flies out their mouths. It's helped me to be confident in the length of my individual healing process, to realize that I will never have my old normal back, and that's it's alright to have a new normal.
After realizing and accepting that I have to find my new normal I began to really pull out of my depression and work towards making my “new normal” the best it can be. I've found helpful tips from the group that are helping me physically feel better, and be able to do more. As I started feeling better I decided to again dive into my business and try to rebuild it. After much work and research and trial and error I have built my business back up to a little better than before my surgery. I still have a ways to go for it to actually bring me a profit, but I am grateful that I'm at least breaking even now most months. I thank God for Etsy and Google advertising that brings me customers from all around the world. I put so much into each of my pieces, and so it feels like there are little pieces of me all over the world now.
I would like to say thank you to my small group of friends and family who do support me by simply liking and sharing my shops social media post, and/or purchasing from me. It's amazing the difference a “popular” (liked and shared more) post can make. Although the vast majority of my friends and family don't support me in my business venture I don't want those few who do to be offended by my honesty in this blog post about the hurt that the lack of support causes me. Y'alls support means the world to me and I appreciate it more than you know.
This last year has truly been one of the biggest challenges in my life. It has definitely made me stronger. I am proud of myself for allowing it to grow me rather than break me! I am also proud of myself for being so open and vulnerable about my journey to hopefully help other women going through the same battle. I pray that this blog post reaches as many women in need of it as possible. Here is another link to the Facebook group "VIN Support Group”. I hope that y'all will get to the point of sharing your own story and journey with others to help spread awareness of these rare diseases. Remember that we are strong because we have to be, but we are still STRONG! May God bless you and carry you through your own healing journey.
EDIT 12/21/19: The support group has grown so much that it had to split into two seperate groups. One for vulva cancer and one for VIN. I changed the links above for the support group to now go to the VIN support group. If you have vulva cancer you can click this link for that support group: Vulva Cancer Support Group