I met my husband by chance in 2012. He was visiting a mutual friend in NYC for a birthday. When we met I had not been diagnosed yet. The weekend we met we hooked up, and to be honest I did not really think we would see much of each other again. I mean, he lived in Gainesville at the time, I lived in New York. I figured out what was wrong with me 3 months after that weekend.
As I have mentioned before, I am a very proactive person, especially when it comes to my symptoms. I always try to be ahead of my PGAD and Pelvic Pain. So when I saw my husband again, 7 months later, I was on anti-depressants, anti-anxieties, Gabapentin, Elmiron, and was actively going to physical therapy.
Once we started to hang out and I thought about being intimate with him, I started to realize I would have to figure out how to tell him. How to tell him that I wasn't sure if I could have sex. I wasn't sure about so much. He was a 22 year old guy, he was obviously thinking about it. I decided to just come out and tell him. I told him the names of the syndromes, and briefly explained I had a rough year figuring it all out. I didn't go into too much detail about PGAD, as I was not ready yet, but figured I gave him the name if he wanted to, he could look it up himself. He's a guy, so obviously he didn't look it up. He asked a couple questions, explaining he did not want to hurt me, so he wanted more information to make sure that did not happen. When we finally got around to it, he went slow and asked to make sure I was okay along the way.
The person I was first intimate with after being diagnosed with my list of dysfunctions is the person I ended up marrying. Listen, this was totally by chance, this was just how it was for me. And you have to know, I realize that. Having sex at that point was different than any other time before that. At that point in my life, being so beyond proactive and taking all the steps I needed to get better, sex was pain free. It made me realize that up until that point I considered good sex times when pain was minimal. Meaning, "ohh, it only hurt at initial penetration and a little at the end so that was great." I don't think I even understood that it was possible to have complete pain-free sex. And why would I? It had not happen before.
It took about 2-3 years for me to get really real about my PGAD with my husband (at the time just my boyfriend). We were on a beach and it was a nice moment, and I decided to tell him how everything started and what I did, how I felt. I told him I was having some symptoms again and I would be visiting my doctor to check things out. Understand, that at that point, I was looking for a job, I hated my living situation, and had a few other things going on. So it made sense that symptoms were coming back since my PGAD and chronic pelvic pain is all stress related.
Around that time, I invited him to meet my doctor, Dr Echenberg. He came to an appointment with me and Dr. Echenberg took the time to explain things and show him things. I think at the time it was a bit overwhelming for him, but looking back I think he sees it taught him a lot.
My husband and I have been together for Seven years, married for over three years. And this is what I can say about it all: Take the time YOU need to explain things. Also understand, this is a lot of information for a partner to take in, so be sure to give them time as well. Communication is key. Sex should not hurt, so if it is, speak up. Sex should NOT be something you endure. So if you are with a partner that cannot understand you may need to take things slow, or you may need to do things differently, well, he might not be the right guy for you. And I know, easier said than done. Trust me, I know. My boyfriend before my husband was not the best guy, and I realized I thought I needed to have a very active sex life to keep him around. I thought it was cool to be very into sex. Anyway, I thought it was normal that penetration hurt. I figured, "he must be big." Ladies, that is very rarely the case. Remember that our vaginas can push a baby out of it, so a big dick should work just fine.
Today, my husband has a pretty good grasp on things. When I told him I wanted to be more public with everything, he was extremely supportive. Chronic pain is difficult to understand. It is not like wearing a cask for a broken arm. So there are times where I need to remind him I can't do something or if I am having a bad flare up, I need to just communicate that. It is sometimes hard because "arousal" is in the name, but as I have explained to my husband and others, it is the wrong word to describe the pain. I suggest doing the same. Explain to a significant other why is was called arousal, but why it's actually not. Also, explain to a partner, this does not mean you cannot have sex, and it does not mean you can't have babies, it just means some times you need help or time. A good partner never wants to put you through anything that hurts, that includes sex.
Lastly, understand that PGAD does not mean you won't find love. It does not mean you cannot have sex. It just means you need to find your way to it. Having a good partner, someone that may not always understand the pain but is willing to be there and to listen, can make a big difference in your life. There are times I relied on my husband during emotional turmoil. There are times I took out my flare ups on him. But he has always stuck by my side.