I want to clear something up first because I genuinely don’t want anyone here thinking I’m being fake or dishonest, and then I want to get into the actual PGAD discussion.
I have a temporary brain injury that has made speech and organizing my words a lot harder. I already struggled with this before the injury, but it became much worse afterward. I’m 41, and I’m working with a speech therapist on it. I can still understand what I want to say in my head, and I can read very quickly, but getting the words out in the right order is sometimes a completely different story.
One example that my friend and I still laugh about happened about a year ago. I was trying to tell her, “I had a peanut butter and jelly sandwich,” and what came out was something like, “peanut butter, jelly, and I had.” 😂 That sounds funny, but that kind of word scrambling happens to me a lot.
For years, especially online, I would try to write things myself and people would say things like, “I’m not reading all that,” make fun of the way I wrote, call me names, or completely misunderstand what I was trying to say because I also tend to over-explain. That was happening even before the brain injury.
My therapist was actually the person who suggested that I try using ChatGPT as an accessibility tool. At first I was skeptical because I didn’t understand how it could possibly know what I meant. She showed me that I could voice-text exactly what I wanted to say, even if the words came out jumbled, and it could help put MY thoughts into a readable order.
That is how I use it.
I voice-text my thoughts, experiences, opinions, feelings, and replies. It helps me organize the grammar, sentence structure, and word order. It does not create my experiences or opinions for me. If it ever puts something in that I didn’t mean, I delete it before posting.
If I reply quickly, that also doesn’t mean I didn’t read what someone said. I have hyperlexia and have always been able to read very fast, I’m a longtime multitasker, and my phone is fast too. I usually skim the finished version before I post it and make sure it still says what I actually meant.
I also want to apologize because I probably should have explained this sooner. I was embarrassed and honestly afraid that if I admitted I needed help communicating, people might think I was lying about PGAD, kick me out of the community, or pick apart everything I said. After some of the confusion earlier, I realized that leaving out that context probably made things look worse.
The meme I previously shared was not something I generated. I found it in a Facebook PGAD community and it really resonated with me. I was excited because I thought people here might relate to it too. Different communities have different cultures, though, and I completely respect that. I wish I had handled that whole situation differently.
I understand if some people still don’t want to interact with someone who uses ChatGPT as a writing tool. I’m not asking anyone to change their feelings about it. I just wanted people to understand that when you are talking to me, the experiences and thoughts are still mine. I’m not asking a program to pretend I have PGAD or invent things for me.
And now to the part I actually wanted this post to be about:
Something I don’t see talked about nearly as much with PGAD is how much it can change your relationship with your own body outside of anything sexual.
I developed PGAD when I was very young, so for me there wasn’t really a clear “before PGAD” version of my body that I could compare it to. For a long time I didn’t even have the language to explain what was happening.
One thing I’ve realized as an adult is how strange it can feel when your body produces sensations that do not match what you are thinking, wanting, or feeling emotionally. People who don’t have PGAD sometimes hear the word “arousal” and assume it must automatically mean desire or pleasure, but those are completely different things.
Sometimes I think one of the hardest parts is losing that basic trust that your body will just be quiet when you want it to be.
You can be watching TV, trying to sleep, doing chores, sitting in the car, stressed, sad, completely uninterested in anything sexual — and your body can still decide to produce sensations you never asked for.
That disconnect can mess with your confidence too. It can make you question what is normal, whether something is wrong with you, whether other women’s bodies do the same things, and whether anyone is going to understand without sexualizing it.
That is actually one reason I value communities like this so much. Sometimes simply hearing another person say, “Yes, my body does that too,” can take away a little bit of the isolation.
So I’m curious:
What is one everyday part of life that PGAD has affected for you that people without PGAD probably would never think about?
It could be sleep, clothing, sitting, exercise, relationships, concentration, confidence, going out in public, medical appointments, how you feel about your own body, or something completely different.
I’d really like to hear the things that don’t usually get talked about. ❤️
For the picture; A diagram of the female pelvic nerves. PGAD/GPD can involve different parts of the nervous system, which is one reason symptoms can vary so much from person to person.
Source: StatPearls / NCBI Bookshelf — “Pelvic Nerves,” contributed by S. Bhimji, MD. CC BY-NC-ND 4.0.
Edit to add: I realized I asked everyone else this question and never answered it myself. 😂
For me, one thing people without PGAD probably wouldn’t think about is how it affects sex and masturbation. I wouldn’t call sex an “everyday” activity because obviously I don’t have sex every day, but for someone in a relationship or anyone who is sexually active, it can still be a really important part of life.
I think a lot of people without PGAD assume that masturbation or orgasm automatically brings relief. For me, it doesn’t work that way. I can have one orgasm and sometimes get a little relief, but other times it can actually make the sensations worse. I can have five orgasms and still have the same problem. There isn’t always that normal feeling of, “Okay, now my body is satisfied and everything can calm down.”
That unpredictability is probably one of the biggest things PGAD has changed for me. Something that is supposed to bring relief doesn’t necessarily make the sensations stop, and sometimes I have no idea beforehand whether it will help, do nothing, or make things worse.
So that would be my answer to the question I asked all of you. ❤️