The thing about Chronic Pelvic Pain is that there are also so many other things that can come with it. It's an umbrella. You can feel all the symptoms, some of the symptoms, or just one. In this post, I really want to go into further detail about the symptoms I feel or have felt along with some that other young women I have spoken to have felt.
The Need To Pee
My first symptom. I remember it like it was yesterday. It was so hard to explain. I remember going to all my early doctors and being asked over and over again, " Do you feel Frequency or urgency?" I always felt like I needed to pee. Later down the road I realized it wasn't the standard feeling of needing to pee. It was a tingling feeling. And I realized it was a tingling between my urethra and my clitoris and I couldn't tell which one (but more on that later). Every night before bed I would go to the bathroom just about three times (still sometimes do) just to make sure. Sometimes I would push and like a drop would come out. But I kept feeling this tingling that felt so similar like I needed to pee. Again, still do in flare ups (term I use when my symptoms come back).
Ants Crawling up and Down
This was always the best description I could come up with. Which was helpful, because when I googled it I found other people that felt the same way and that people call it restless leg (after much research). It can also be described like electric current feeling up and down the thigh.
Here's a big one. One that many refer to as "arousal". But I just feel it is unfair to call it "arousal". It is not arousal that feels like when you are turned on. It is stimulation in the genital region. The media, what little there is out there, has tried to sexualize this condition and it is really annoying. When some people are stressed they feel it in their head or back, I get my ache in my genital region. Yes, it is weird when first thinking about it, but at the end of the day it is a part of the body with nerves just the same. For me, it feels like a tingling, almost internal vibration feeling. A temporary fix to the feeling is putting pressure on the clitoris. Which is why some people, including myself have masturbated to alleviate some of the pain and discomfort. The stimulation, once started, is aggravating. Even masturbating does not take away the pain as it comes right back. It is impossible to sleep some nights when I have flare ups and can't stop putting pressure on my clitoris. Sometimes, I think of it like the way a guy rearranges his balls. He feel uncomfortable and immediately grabs his crouch and rearranges his balls. Guys, imagine feeling the discomfort of squished balls (but more painful) a thousand times a day with no amount of rearranging relieving the discomfort. For me, I feel discomfort and quickly pushing my two fingers I press from one side of my clitoris and push it to the other side, like against my right thigh. It is temporary, but it relieves some of the pain quickly.
During some flare ups, my clitoris, or vagina region in general, has a pulsating feeling best described as throbbing. Imagine you stub your toe. You know that throbbing feeling I'm talking about? Just as your where you hit it begins to swell? That's the feeling I get.
Urethra And Clitoris
UGH. That is all I can say. This one is one of my least favorites. But it is what helped me self diagnose. I literally, in 2012, googled "Feeling like I need to pee in my clitoris." AND THAT IS EXACTLY WHAT IT FEELS LIKE. A lot of the time when I orgasm it is the same feeling as when you hold in a pee and finally let it out. Other times when I am peeing, I feel it is my clitoris. My doctor likes to put it that the nerves are so closely intertwined, which is why this is happening to me. The best way to explain is that clitoris pain AND pleasure and the feeling of needing to pee feel the same to me. Thus, the stimulation feeling constantly. AND THUS WHY ITS HOULD NOT BE CALLED AROUSAL!
Could be just me. But I thought I would share anyway. When I was first diagnosed and just starting on anxiety meds, I remember feeling paranoid that I was going to pee in my pants (Later, discovering this was because of my restless leg syndrome creating currents up my leg). I also had paranoid thoughts people were staring at me and laughing at me. I don't have this anymore, but I can tell you the 8 months of feeling these paranoia feelings caused a long term effect. I still feel self-conscious at times like if I sweat too much in a work our class, for example.
Listen ladies, unless he is 8.5 inches and your tight as a clam, SEX SHOULD NOT HURT. This took me a long time to understand. I went from losing my virginity in a car (and not in the back seat) to not having sex again after that for about 3 years to having a mostly sexual relationship with my then partner (not realizing I was never orgasming) . Sex was not the most pleasant experience for my first 5 years of having it. I think talking about pain and sex deserves it's own post. I will be going in further on this point in a later post.
Lower Back Pain
It is pretty normal for pelvic pain to radiate down your back, your SI, and your butt. It comes with the territory. Physical therapy, stretches, yoga, and routine massages can really help. It is important not to overlook this pain because the more pain you feel the more tense and tight you will make your body, continuing the train reaction causing IC and RGS/PGAD!
The orgasm part in all this gets a little confusing. Some women with RGS/PGAD have uncontrollable orgasms due to the stimulation in their genital region. For me it is a bit of the opposite. I hold so much tension and clench everything up. "Others take hours to achieve an orgasm or never reach one, and therefore have no resolution to their arousal." - WEBmd. This part sucks, but obviously compared to the pain and constant unbearable discomfort, it is minimal.