My battle with Vulvar Intraepithelial Neoplasia (VIN) began I believe around 2008, although I didn't have a clue that's what it was at the time. I actually just found out the beginning of September 2018 that was what I was dealing with. Since then I realized that I should share my personal journey with others to help bring more awareness to this disease, and also to let other women dealing with this issue know that they are not alone.
I can't remember the exact date or even the time of year, but I distinctly remember the first time I felt that first symptom. I was going to the bathroom like normal, but one small spot on my lower vulva burned like crazy. I remember thinking it was weird, and so out of the ordinary. I immediately started trying to remember if anything had happened that would cause it to be sensitive like that. I couldn't remember anything happening so I decided I must have scratched it, or something without realizing it. It felt better within a few days so I just moved on with my life. I assumed that it was just some random one time thing where it was irritated and got better.
Life moved on, and I had no more problems with it for a while. Then one day I went to the bathroom, and there was that burn again. I knew it was the same spot, or general area. I remember thinking this is really weird. I tried to remember doing anything to irritate it, and I could think of nothing. It felt better within a few days, and so I dismissed it as a random thing again.
Then slowly over the years it started to happen more and more often, and the spot grew bigger. The burning, stinging, irritation, and pain would last longer and longer. I tried over the counter medicine for yeast infections, and the feminine anti-itch type creams. Neither helped. By 2014 it had gotten so bad that I finally went to my family doctor about it. The day I had the appointment I happened to be flared up so she was able to see it. She looked at it, and said she really didn't know what it was. She even went and got a medical book to try to figure it out. She thought maybe it was Lichen Sclerosus, and sent me to a dermatologist. And, she also recommended me go to a gynecologist.
When she didn't know what it was that really concerned me, and I decided to look into things myself. I looked up Lichen Sclerosus, but it just didn't seem to completely fit with what I was experiencing. So I did a search for just general vulva issues. In that search I found out about VIN (which is precancer of the vulva), and vulvar cancer. As I read all of the information I thought it really sounded like my symptoms matched VIN. However, I'd never been diagnosed with HPV to fit the “usual type VIN”, and my age didn't fit for the “differentiated VIN.” It also said that it was relatively rare.
I was really trying not to freak out from my web search self diagnosis. I told myself that I was not going to think the worst just from a web search. I was going to wait until I saw the “professionals”, and see what they thought it was. I was fully confident that at least the gynecologist that specializes in the whole general vagina area would know, or suspect it if it was indeed VIN. So I figured if one of the doctors I was going to see didn't suspect it to be VIN then I would know I was wrong on my web search self diagnosis. After all I didn't completely match that diagnosis because of my young age and not having had HPV, and it's rare so I decided to let the doctors do the diagnosing.
The day I went and saw the dermatologist I wasn't as flared up. She didn't seem to think it was Lichen Sclerosus, but also didn't really know what it was either. She gave me some prescription strength hydro-cortisone cream, and I was supposed to go back. I left thinking “why would I go back when you have no idea what it is?” I knew I had my gynecologist appointment coming up so I figured I would just use the cream until then and just see if it helped. It didn't.
My long time OB/GYN had moved so I decided to see my daughter's doctor. The day I saw my new gynecologist it wasn't flared up. However, I was also having some issues with what we believed to be scar tissue under my skin from having three children in the same area that was having the flare ups. I told him all of my symptoms from both the skin issue and the under the skin issue. He couldn't see the skin issue, but he could feel the under the skin issue. He put some sort of numbing ointment on the area to see if it helped the symptoms, but it didn't. He and I both concluded that the scar tissue was probably pulling the skin in that area, and that was most likely what was causing the skin issues I was having. He gave me an estrogen cream to use at home to try to help with the scar tissue problem, but said that it would be a slow process to see if it would help. I was to use the cream, see if it helped, and come back in like six weeks to follow up. I kind of had an answer, and at least we were taking the steps to see if this would fix what we thought was the problem.
I knew that VIN was relatively rare, but I truly believed that my regular gynecologist would at least be aware enough of it to suspect it when hearing my symptoms. After all, you can have it with no physical symptoms or visible signs, which I assumed he was aware of. So when he didn't bring it up, neither did I. I trusted him to know, and apparently he didn't even suspect it. I was so relieved that he didn't even mention VIN that I naively decided to dismiss it, and not worry about it anymore. I didn't want to come off as “that crazy patient” coming in saying they have some rare disease. I really wish I would have been that crazy patient now though.
Over the next year or so I continued to see my gynecologist, and we tried different creams and stuff. We talked about doing a surgery to help with the scar tissue to hopefully give me some relief. He did get to see it flared up at least one time during that time period. When the creams weren't working we decided to go ahead with the simple surgery. He let me know upfront that he could not guarantee that this would work, but that it was all that he knew to do at this point. However, never once did he suggest that I see a specialist, or get a second opinion. Because of that I didn't suspect it was anything worse than scar tissue, and agreed to do the surgery. I was relieved that it wasn't anything more serious, and hopeful that the surgery would end all my suffering.
My husband had to travel out of the country for work so we scheduled the surgery for while he was gone so I had plenty of healing time. We did the surgery in May of 2015. I went through my healing period, but I never felt 100% relief. I thought, and was praying hard, that the burning and itching were just from the healing and such. I went to my 6 week follow up, told him about it, and what I thought. He agreed and said that I should start to feel better every day. I didn't need to come back till the following year for my regular yearly appointment. I went home feeling encouraged that I was indeed healing and going to start feeling better soon.
Sadly that's not how this story ends. The scar tissue part did feel somewhat better. However, the itching, burning, stinging, painful symptoms on the skin never left. They actually continued to get worse, and the area grew. Some would think that I went back to my gynecologist and continued to try to figure it out, but I didn't. You see it was during this time that my non-smoker, healthy, active father was diagnosed with stage four lung cancer, and then passed away. I was also having some issues with my kids and marriage. To say that my world was crumbling around me would have been an understatement. I was completely overwhelmed with everything happening all at once.
I had spent years trying to get answers on what was wrong with my poor girl. I had shown her to way more strangers than I'd ever cared too! Then all they ever said was they didn't know what was wrong. So I'm going through the uncomfortable process of showing strangers my most intimate part for them to have no answers. It seemed to me that no one thought it was cancer or VIN, and so it must be that Lichen thing or something like that. My family doctor warned me way back at that first appointment that there are some skins issues you can have on your vulva that they just can't fix. That you just have to deal with for the rest of your life. At this point I really believed that was probably what it was. I just didn't have the emotional strength to go through the examines and embarrassment again to just be told yet again that there's nothing there, or they don't know what it is. I felt completely defeated by this issue and everything else going on in my life at the same time. So I put on my big girl panties, and suffered through because it's the only choice I thought I had.
It was during this time that I dug even deeper into natural healing, but no matter what I tried the condition just continued to get worse as time moved on. I know the stress of it all couldn't have been helping. I would consider going back to the doctor, but then would talk myself out of it because why bother when there's no answers. Even though I was growing stronger emotionally and spiritually I wasn't healing physically, and so I really had given up hope on having a normal vagina again.
As time passed the area grew bigger and bigger, and the time between flare ups grew smaller and smaller. The symptoms all became worse. It came to the point of it basically bothering me everyday. My husband encouraged me to go back to the doctor to try and get some relief, but I just couldn't make myself go down that road again. I basically gave into the idea that I had to deal with it for the rest of my life.
I couldn't understand why God wasn't healing me. I believed He could. I prayed for healing. My family prayed for my healing. I had way more than a mustard seed of faith that God could heal me. I even learned Reiki just to try it a different way. The healing just never came. I then found myself thinking things like: “Where is God? Why isn't he healing me? I don't understand why He's letting me go through this. Why do others get healed, but I'm not?” I just couldn't understand it all.
The pain and suffering from everything that was going on in my life pushed me to search for my personal truth about God. So I started educating myself about different religions from now and the past. I saw how so many of the story's were very similar to each other. I started educating myself, and pushing myself to see things from different perspectives. I don't want to get too off topic with my spiritual journey. That's a topic for another day and another blog post. Let me just sum it up that through that journey I found emotional healing and balance and a closer relationship with God than I've ever had. However, I still didn't receive my physical healing I so desperately needed.
In March of this year I couldn't take the torture of the symptoms anymore so I broke down and went back to my gynecologist. I was so afraid he was going to say there was nothing that could be done, but between my husbands encouragement and my misery I had to at least try one more time.
I went, but I wasn't flared up that morning. I explained my symptoms, and said I was wondering if maybe some of it was from perimenopause changes. He examined me, did the pap smear, and said he didn't see anything unusual. Then he patronizingly told me that I wasn't in menopause like I didn't already know that because I'm still having a regular period! Then he said that he didn't feel comfortable doing anything else with the scar tissue issue because he didn't want to cause more scar tissue. I actually agreed with that. He yawned at least 3 or more times while in the exam room with me. I started crying because I felt dismissed with no answers or hope. I said basically "Don't you understand that I'm suffering with this like everyday? Can't you do something?" He had that look a man gets on his face when he can't give a woman the answer they want, but he still wasn't really saying or offering anything further. I was like "Well can we at least try that cream again? Let's at least try something!" I'm still in tears. He agrees to let me try it, and says to come back in six weeks for a follow up. However, it was very apparent that it was just to shut me up, stop my crying, and get me out of the office.
I get in my car and just cry. I didn't want to come again for just this reason! Then he made it even worse by not even trying to figure out what it could be, and basically dismissing me. I was like “That's it! I'm done! I'm never going to the doctor again for this! I guess I am just doomed to deal with this forever!” I gave up, never went back, and it just continued to get worse and worse at a more rapid pace than ever before.
In July I had to go to my family doctor for my allergy medicine. While there she was updating my medication list, and asked if I was still using the estrogen cream. That led to me explaining my last visit with my gynecologist, how horrible it was, and that I had given up on help with it. I told her that it was worse than ever, and I rarely got any relief. She said I have one more doctor that I recommend you to see if you're willing to try one more second opinion. It was actually the fourth opinion, but who's counting! I said well why not. She explained that he is an gynecologic oncologist, but not to let that scare me. She didn't think it was cancer. It was just that he see's a lot of usual stuff and deals with scar tissue and such, so she believed he maybe able to help when no one else could. I was very hesitant about going and my anxiety was high about it, but I knew I should at least try.
I went to my first appointment with very little hope for answers. I figured I couldn't be disappointed if I didn't expect much. I was supper anxious that morning. I was crying in the room while I was waiting for him to come in. I thankfully pulled myself together before he made it in the room. He was very nice and considerate. When he started the exam I asked like I have done with all the other doctors if he needed me to point out the area that was bothering me, but he said there was no need for that because he could clearly see what I was talking about. I was shocked! Someone could finally see what I was talking about! I wasn't crazy! He asked if it was ever biopsied, and it was his turn to be shocked when I said no.
Next he said the first thing we have to do is get a biopsy so we know what we are dealing with. He drew a rough picture/diagram of my vagina/vulva area, and put this big oval on the side I have the issue on. He then said that what he saw was atypical and that it wasn't that he thought it was cancer, but rather he just wasn't sure what it was. He explained that whole area was a concern. He said that he'd have to get small samples from 4-6 spots within the area because it was such a large area, and he would just cauterize them. He also explained for us to stay friends after that we had to do the biopsy at the hospital under sedation. Of course I agreed, and we scheduled the biopsy for the following week. At first I didn't freak. I was just relieved to finally have someone who took it as serious as me, and to hopefully be getting answers from the biopsy that would lead to my healing. He said that he wasn't thinking it was cancer so that gave me hope.
When I woke up from getting the biopsy I found out that instead of just cauterizing the spots back closed, like planned, that he had to stitch up the five spots he biopsied. This made the healing process slower. All I knew was it was a big swollen, painful mess. As I was healing from that and waiting for my appointment the following week to get the results I decided to search vulva problems again. I wanted to see just what he could be looking for if not cancer. I figured this way I would be more prepared when he was telling me about my biopsy results. In my search I found VIN and vulva cancer again. It all came flashing back how the symptoms matched. I knew this had been about a ten year battle, and I was very concerned that it was going to come back showing cancer because it had been going on so long. All I could do was wait and pray.
The follow up appointment day finally arrived and my husband took me. The doctor checked my stitches and then said to go ahead and get dressed, and we would meet in the other room to go over the results. That's never a good sign. I was about to jump out of my skin waiting for the doctor to come in and finally find out what is wrong with me. He came in, and explained that I had a large area of severe vulvar dysplasia. That it wasn't to the cancer stage, but that it had to be removed before it reached all the important stuff that it's dangerously close to. That he would have to do a vulvectomy to remove all the bad skin plus a little of the good skin. I knew how big the area was that bothered me. I knew how close it was to stuff. I was scared. We agreed to schedule the surgery as soon as possible, and I went home to continue healing while waiting for the surgery.
I researched severe vulvar dysplasia, and found out that it's VIN. Later I saw on my blood work papers the diagnosis code was for VIN 3 which is the highest most sever stage. When I realized that I actually had what I had self diagnosed myself with all those years ago I got really angry. When I read that small areas can be treated with a cream I thought I was going to lose it! I'm angry at myself and at my gynecologist. I mean how could a experienced gynecologist not be aware enough of this issue to even suspect it? My whole professional career has been about advocating for others, and yet I didn't advocate for myself? I didn't once say 'Do you think it could be VIN?' WHY? WHY? WHY! If he would have been aware of the condition or I would have just asked about it then maybe we would have caught it sooner, and this spot wouldn't be so big. Now I have to get this big spot that is dangerously close to some really important things cut off of my body. I have to be disfigured and deal with these changes for the rest of my life all because the doctors didn't suspect a rare disease, and I didn't speak up for myself. Yes I have a lot of anger about that.
During all my research into VIN I got very frustrated because I couldn't find any support information that I wanted and needed. There is plenty of information on the medical part of it. However, a lot of the links you think will help you actually take you to stuff about other conditions. There is virtually no support or help to be found. If there is I haven't found it yet, and would love to know about it. I did find one page where women could ask questions, but they didn't get answers sometimes for months if at all it seemed. Reading their short stories/questions did help me feel not so alone, but it wasn't enough. I also searched for natural cures and help, but found nothing. This left me feeling very alone and frustrated.
In the weeks since my biopsy results I have been riding the fine line between feeling grateful and blessed to find out what it was before it was cancer, and feeling really pissed off that my gynecologist never even mentioned it as a possibility and I didn't either. It's been a very emotional time for me. However, it has also helped me to grow spiritually and emotionally. I have been doing my meditations and self Reiki more regularly. This has helped me to hear from God more. God has told me two important things about this situation. One is that going through this process and surgery is my path to healing, and that I am going to come through it fine.
The second thing that God told me is that I should share my story with others. This was funny to me because one of the first things I said after my diagnosis was that I wasn't going to be sharing this on Facebook because it's such a embarrassing and not talked about issue. I've actually told very few people in my life, just my immediate family and those few who needed to know. Then God tells me to blog about it! I'm like, “Really God? I only have this new little blog that my own family and friends don't really bother to read. How is that going to help anyone?” Then he reminded me of my failed searches for help. He said basically, “What if just one woman searches for help and finds your blog, and that makes her go to her doctor and get checked and saves her life or vagina? Sure it's embarrassing to talk and write about your vagina, and put it on the internet for the whole world to potentially see. But, if you can help others in your situation feeling so alone and scared isn't it worth it?”
Given that my whole adult life has been about finding my own healing and helping others find their healing there was no way that I could let embarrassment or fear stand in my way of doing what God had asked me to do. He even whispered the dreaded “If not now, when? If not you, then who?” So here I am now being brave, trusting God, and writing all about my vagina for my small unknown blog. I'm praying that by being vulnerable and sharing my story I will help or even save at least one woman's life.
That's my VIN story so far. I still have not completely healed from the biopsy and I'm dealing with the VIN being flared up. So although I have all the anxiety I am really ready to get this process over with and find my complete healing. I'm still having good moments and bad moments because my emotions and anxiety are taking me on quite the roller coaster ride from minute to minute. I feel so blessed that I have such a rich background in psychology, mental health, natural healing, energy healing, Christianity, and spirituality that I have been using to pull me through all the emotions that go along with this disease. Plus I have an awesome supportive family that I couldn't face this without. I can only imagine how hard this process would be for someone who doesn't have at least some of that. Realizing that has really helped to encouraged me to write this to encourage and support those who need it.
One other little thing I didn't get worked into my story was part of a conversation I had with my husband and son over dinner the night I got my biopsy results. We were discussing the results, and how it's such a rare thing. I jokingly said maybe we can make a movement to bring more awareness to the issue and use “#savetheVs”, and I through up the peace sign with my fingers at the same time. We all laughed because I had already said I wasn't even going to share this with many people, and it just sounded and looked so funny! However, the more I thought about it the more I found it kind of catchy. I figured if I'm going to be blogging about it anyway I would just put it out there in the universe, and see if it sticks! So, I painted a sign saying “#savetheVs” to use with this blog post! I'm also going to take a picture with my awesome hubby and I holding it while I'm in pre-op getting ready for my surgery. I'll share it with my part two blog about how things go after my surgery, and maybe share some general information on VIN.
I feel confident in my coming healing, but to be honest I'm not looking forward to the painful process. My husband says I'm strong, but I say I have no choice. I'm choosing to face this hurdle in my life by standing strong and finding my healing, and not letting the embarrassment of the issue stand in my way of getting the word out about this rare disease that there is help for.
I pray that my sharing this will help other women facing this issue. You are not alone even though it may feel like it. Our lives and vagina's may be forever changed, but we are still blessed to have a life to live. So let's find our healing, and then live this healed yet changed life to the fullest! Don't be afraid or embarrassed to share your story with others too. You never know who's life you may be saving. Let's #savetheVs together!