2014 has been quite the year for me. October was my one year vulvodynia anniversary, I got married in July, and my mind has been through hell and back. However, I have learned a lot through out this year that I think is important to realize.
1. You are not crazy. When it comes to chronic pain and conditions that people cannot physically see such as vulvodynia, the pain is real and no, you are not just making it up. I am not sure how many times I saw my gynecologist for a burning vagina and the nurses were like “well, it looks normal, besides a small amount of inflammation”. Or, the dreaded, “let’s check you for all STD’s possible”(so embarrassing!!!). Despite all the embarrassment, it is important to keep pushing through doctors that don’t understand in search for new ones that do. I now have a great gynecologist who knows about vulvodynia and is receptive towards treatments that I suggest, even though she doesn’t have many answers for me. AND I have a pain specialist who understands that it is the pudendal nerve that is associated with vulva pain. So, continue your fight and push through in order to find doctors that understand the condition. This takes a lot of research and time spent BUT you are not crazy!! This is totally real, unfortunately.
2. Not Everyone is What They Seem- This was the HARDEST lesson I have learned this year. Sometimes, the people you think that would be the most understanding turn out to be the ones that talk about you behind your back. It is especially hard when they are family. However, some people will surprise you and really want to be there for you. Either way, it is important to embrace the positive influences in your life and keep the negative people away. Unfortunately, sometimes those negative people are family so it is important to realize that those characteristics reflect on them and who they are but it has nothing to do with you and its important not to let what they say effect your mood.
3. No One Really Understands- The medical community that is. For some reason, all vulvodynia treatment is different. Either they want to cut your vulva off, prescribe you nasty creams, or inject you with medication. There is a lot of controversial treatments that are associated when it comes to vulvodynia. It is just really trial and error at this point because every body is different, or so they say. So don’t get your hopes up every time you get a new treatment. That wears you down like no other. Just keep in mind that you may have to try several things before you find something that works for you. This goes for ALL chronic pain sufferers.
4. Support Groups/Blogs Are GREAT- Before starting this blog, I felt so alone in my journey and I felt like I was the only one with a burnt vagina and I felt hopeless. However, after starting this blog I have had the opportunity to read about other people’s journeys and fabulous women have reached out to me. Finding people who really understand and are going through similar circumstances helps heal the mind of any ill feelings and really lets us know that we are not alone. So, THANK YOU to everyone that has commented or reached out to me through this blog. It really means the world to me!
5. You Change As A Person When You Face Chronic Pain- Chronic pain is hard. Either you can let it make you depressed and crazy (literally, I was close, HA!) or you can learn to deal and work on being positive. Personally, I think it is a mixture. It is hard not to get depressed when you have an unrelenting pain that is severe. BUT it is important to force yourself to think positive and keep your mind in a good place. Especially in the beginning of your chronic pain journey, it is easy to fall into a deep depression but FIGHT to tell yourself positive thoughts in order to not allow the depression to consume you. However, there are some positive changes that do happen. I find that I am more sympathetic to people and their problems and understand more when someone tells me they are sick or also face a chronic issue. You really learn a lot about yourself and your capacity to fight, love, and LIVE your life even though you are in pain.
6. Remain POSITIVE!- I know this is hard sometimes but it is IMPORTANT to force our thoughts to be positive. This is the only way to survive chronic pain/illness. Not everyone is going to understand, be sympathetic, or be there for you but it is important to realize that you are not crazy, this is real, and all you can do is deal with it. Being positive will make your mind feel better and ultimately make your illness feel a little better. Every day may be a fight to be positive but focusing on that fight is really the most helpful piece of advice I could ever give anyone.
If you have any more advice or things you have learned please comment below. Thank you to each and every one of you that has taken time time to read my blog, commented, or reached out to me. Blogging has been the most humbling and helpful experience I have had through out my chronic pain journey.