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  • Writer's pictureLior

How To Explain This To Others

In the beginning, it was just easier for me to tell people I had a bladder disorder. It was short, sweet and to the point. Even after my surgery, which was only eight months ago, I told some people it was a small procedure relating to my bladder.

For some reason "bladder" is less embarrassing than saying "vagina" or "clitoris". Why? I really just don't know, but I am over it. All part of the body, all God's gifts to mankind.

BUT. I get it if you are not ready for that yet. It took me eight years to be so open about it.

There will be times you will be out and can't drink alcohol due to medication or flare ups. There will be times you are sleeping somewhere and need to explain your meds and creams. Or a time you will need to explain bringing a waffle pillow on a flight after a surgery (Me, this passed November).

I am all for honesty as of now. So the more young women willing to be open about these conditions the closer we are to breaking the stigma and giving ourselves a voice. Imagine a day where every OB/OBGYN will be required to learn about chronic pelvic pain, RGS, PGAD, IC, etc..

Now, if that sounds daunting and you are just not ready for that, it is completely understandable. Instead, you can tell people things like "bladder issue", "bladder procedure", "Pelvic dysfunction", and "cysts". I find "pelvic dysfunction" is just vague enough as well. Ovarion cysts is a common one as well.

If you do hope to tell the truth about it, but are unsure how to approach it, that is totally understandable. Take a look below for some ideas:

I have chronic pelvic pain along with a diagnosis that is a bit more uncommon. It effect my genital area (or pelvis area) by shooting down painful or uncomfortable stimulation. Unfortunately, the current name of this condition misleads people about the true symptoms of the condition. Persistent Genital Arousal Disorder does not actually cause any arousal, instead it causes unwanted tingling feelings in the genital region. Imagine hitting your funny bone constantly throughout the day, but in your genital region. Or imagine the same feeling as a small jolt of electricity. I also have restless leg syndrome which feels like electricity bolting up and down my thigh.

I think it is best to approach the name of it because it is so misleading. I have had friends approach me timidly once I came out talking about things. Like, why does it mention "arousal". The problem is that the tingling sensation can be closely explained by saying arousal. The tingling does feel like unwanted arousal, BUT not the kind of way people think of arousal. That is why I have such a huge issue with arousal bring in the name. Because with it, comes the connotation of sex. Also, for people without the disorder it is hard to imagine the idea of arousal being associated with discomfort. it is hard to understand how it can even be a bad thing.

I try to tell people, imagine you have the feeling you need to sneeze, that feeling right before, but no sneeze comes out. Isn't that like the worst feeling! Ok, imagine having that feeling in your clitoris/urethra (genital) area multiple times a day, with no relief. Every-time you want to sneeze it just does not come out.

I once met a 14 year old girl with RGS/PGAD who told me when she wore jeans it felt like someone was molesting her. Like an invisible person was molesting the area, without there being any other thing going on besides the fact she was wearing jeans.

Try to find an analogy that works for you. Words like stimulation, tingling, discomfort, pain, and electricity can all work. As I mentioned in a previous post, the pain is hard, but telling people can sometimes be even harder. I feel beyond lucky to have had the support system I have had since the beginning of this journey, but I know that does not always exist. It is important to know there is a community out there! We have facebook groups, conventions, and networks. Doctors all over willing and ready to do virtual doctor visits and examinations. If you are not ready to talk about it to others yet, reach out any time to me, or any facebook groups. If you need any recommendations whether it be for OB specialists, physical therapists, or counselors/therapists that specialize in chronic pelvic pain.

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