Hi, I've been putting off writing this for at least four months as this condition is so traumatic but we don't get enough help, at least here in the UK, so I'm trying to do something about it. Sorry if I have worded anything unclearly or repeated myself, as you can probably guess I am not in a good state usually.
this is a long post, but important, for it to be of any use I hope the mods will consider pinning it as it’s taken so much effort and I’ve not seen anything similar. I think it will only have use as a long-term post to be replied to over time. I found a post from years ago where somebody was doing their own survey but I can’t find anything about the results so I thought that all the information being public to begin with will mean that it stays visible and useful even if I personally don’t manage to come back a lot (because of trauma).
SUMMARY: I’ve made a list of questions which I will post below. Maybe if people reply with their story/symptoms we can create a collection of information that can give insight into if this is one disorder or multiple disorders with overlapping symptoms but completely separate causes and treatments. In your replies to each question (answer as many or as few as you want) please note if you’d recently taken SSRIs, had physical trauma, any other cause before your symptoms started. That is the key thing we want to find out I think.
I’m not sure the best way to do this but below I will post a list of topics and then people can respond and anybody who wants to reply about the same thing can reply to that person so that the discussion is nested and at least slightly organised!
After reading medical documents and forum posts and seeing a doctor it seems there’s so much that hasn’t been researched about this condition, despite it being so awful. The fact that one of the main causes (I think 45% of sufferers) is SSRIs and potentially SNRI/amitriptiline, but they are also some of the main treatments, makes it so difficult for us decision-wise. Like I’ve read of some people being warned off treating with those, while others are being offered them without mention of any risks. I’m convinced we as a group must have some information that the doctors either don’t have, as there’s not enough research. And if there are doctoes successfullt treating it then most of us will not rececive that information without getting it here or something changing.
The main thing I’m wondering about is whether there’s two main types of this disorder which aren’t even related and which are being treated under the same umbrella disorder. The three main causes from what I have read are a) nerve compression from tight pelvic floor muscles, b) nerve damage from childbirth or an injury, c) SSRI’s, usually coming off of them. So could there a version of PGAD which is a variant of puedendal neuralgia and then another with similar symptoms but which is not actually the same thing at all.
You can skip the rest of this post and jump straight to answering any questions if you wish as the rest is mostly just my thoughts behind this.
Long version:
IMO the pharmaceutical companies making money off SSRIs should be funding this research, as they’ve had two decades to put accurate and descriptive warnings on their medicine but they clearly aren’t taking responsibility. It seems like we have to do a lot ourselves. For some people the symptoms start immediately after a medicine change or childbirth/injury, or have always been present; but for others the cause is less obvious. If there was research to more easily figure out the cause then it would be safer to decide on treatment. For example if there’s a specific symptom which is only present from physical nerve damage then statistically SSRIs would be the safest treatment, etc, but when you’re unsure (eg I had slight trauma to the area the same year as stopping SSRIs) it’s impossible to know whether to risk trying them.
There are so many separate threads on here often asking repeat questions, which is fine, but I thought it might be useful to have it all in one thread but also as a way to do some research ourselves. I read a thread from years ago that somebody had being surveying people, but I couldn’t find any trace of it so I thought it best to have it on a visible thread, so it isn’t lost if it gets abandoned. I’ve been trying to post this for many months but I definitely have whatever the non-post version of PTSD is, so felt unable until now. But over that time, any time I had a symptom or thought about a possible, or read about a potential cause I noted it down. Below I will post them all as separate comments and hope that over time people will reply to each symptom with information about their known causes.
Regarding SSRIs: We don’t know if SSRI’s are causing damage by themselves, or if instead, the numbness they can cause means that people are not feeling injury to the area, or are being more forceful during sex because of this and are causing injury. But this seems unlikely as I’ve heard some people have symptoms after taking SSRIs just one single time? Or is this not the case, I just can’t find much information at all. And either way it is still SSRIs causing the danger and should be warned about before taking/in the pamphlet. There is also a PSSD community on here which is essentially SSRIs causing the opposite issue, which makes me think that the SSRIs are causing damage; I’ve read there is may be small fiber damage (but that is from memory, I may be wrong).
In your replies please note if you took SSRIs or had a physical trauma etc etc sometime before your symptoms started so we can piece together if there’s any trends between these. If there’s anything I haven’t asked please feel free to add your own comment below for people to reply to it.
Please write any information that you can, it doesn't have to be an answer to every question! Anything will help. Thank you