I am an awful blogger.
Since my last post, I honestly have not had the time to even think about updating you all on my story or even getting a small post out there. Being back at work full time and being able to see friends again has of course consumed all my time (which I am definitely not going to complain about), but I am back and ready to share with you, one of the happier days throughout my suffering – the day my pain was given a name!
(Side note, the set back and the awful flare up I had in my last post has well and truly gone and I am feeling fabulous again)
Okay, quick recap: August 2019, all STD tests came back negative, and I had just been told that my pain was imaginary and that my head had ‘made it up’ because I was stressed. I mentioned in last week’s post that after this, I hit the lowest point I had ever been in, so let us talk about it. Instead of moving forward and trying the next step, whatever that may be, I chose to stop. I chose to stop making appointments, I chose to stop trying to relieve the pain and I chose to stop imagining a normal life again, because truthfully, I could not see one. I spent, what felt like months and months, crying myself to sleep, sitting around all day and pushing away those closest to me until I felt even more isolated and alone. (I do not recommend this) However, when you are suffering with something like Vulvodynia, or any other chronic pain condition, that not a lot of people understand, it is HARD. I, like many, never really understood just how hard it was. You wouldn’t be human if you didn’t allow yourself to feel every single emotion. You wouldn’t be human if you didn’t cry and scream and ask the world, why you? You are not weak if this is how you are coping right now. You are not weak for feeling. But what you choose to do next is where your true power lies. Back in week three of this blog, I spoke a lot about support systems and a lot about my boyfriend. I am grateful that he allowed me the time to feel this way, but I am more grateful for what he did next. I remember the night like it was just yesterday. It had been a long week and my mind was probably the darkest it had ever been. I remember laying in his arms, sobbing my heart out and this was the first time I said the words, ‘I don’t want to wake up tomorrow, I’m done’. A few moments passed and then he looked at me and said, ‘The only way that you’re ever going to get better is if you get up and do something about it. Yes, it’s awful and I’m so sorry that you’re in pain, but you need to do this for you’. So that’s what I did.
I spent the next two months doing everything I possibly could to get my life back. Although I was still experiencing the most horrific pain, the control I now had over the situation was making things that little bit easier. (One would say that I don’t work without control, and they would be correct) I was determined to diagnose myself and fix the problem that many doctors had failed to do. I spent my days trying every possible home remedy out there in hopes to gain some comfort back, for example, every anti itch cream that you can think of, I tried. I spent most of my free time in sitz bath’s, which let me tell you, not what I saw myself doing in my early twenties. I was taking any sort of pain medication that I could get prescribed to me. I constantly had ice packs down my trousers and swapped out all washing detergent/soaps and shampoos, with fragrance free alternatives (so basically water based everything which gives off no smell at all, and makes you question whether you’ve actually just had a shower or not) I also spent hours and hours searching the internet for any clues at all (although I really had no idea what I was looking for).
Then something happened. I came across an article that described everything I had been suffering with and it had a name. Vulvodynia. I knew without a doubt that this was the condition that had plagued me for the past two years. I showed it to my Mum as well as my boyfriend who also believed that we had just cracked the case. I was straight on the phone to my doctor and had an appointment booked the following week. Let me tell you, the change in me whilst I waited for my appointment to come around was next level. I finally felt like my hope had returned and everything looked so much brighter. Sitting here now and looking back on it, I am so glad that I did that for myself. To pull yourself from such a dark place and put in the time and effort to make yourself better is one of the hardest things to do and if you have ever had to do it, just know that I am extremely proud of you and I truly believe you are incredibly strong.
October 4th will always hold a special place in my heart for as long as I live. October 4th I marched into my doctors office, told her all about my research and presented her with the condition in which I was certain I had. To which she replied, ‘I couldn’t agree more’. By the end of the day, my jaw ached from smiling so much and boy had I missed that feeling! The next step for me was to visit a specialist at the hospital to clarify my diagnosis and finally start the right treatment.
If you are dealing with this condition, or symptoms like this and you have zero answers, I promise you, this day will come for you and it will be the best day. So, keep going because you all deserve this.
One of the main reasons as to why I started this blog is because of how little information is out there regarding this condition. Vulvodynia, to this day, is still one of those conditions that goes misdiagnosed for years and it is extremely sad. Sad because still, women are too afraid to seek help regarding their health, as we have been taught to believe that speaking about our private parts is ‘embarrassing, disgusting and shameful’. But how often do you hear the word ‘Penis’, on a daily basis? Just something to think about.
As the weeks are rolling by, my blog is reaching more and more women, and I am learning just how many of us are affected by something like this. I feel extremely proud that others are beginning to become more comfortable with the idea of sharing their experiences and their pain because it really does go to show that all it takes is one person, one voice, to start a movement in the right direction, and I could not be happier that there is at least one space in which you can find the information that I spent two years searching for.
Tiff x
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