Hi, I am new here. I also have Chronic Pelvic Pain syndrome. And I have it for a long time, now almost 20 years. The funny thing is that the first 15 years I was convinced that it all was psychosomatic/MBS. And I did psychotherapy for 7 years. So, I thought I must have found out what causes this pain, which can be almost unbearable. Since 4 years I am having again periods with more pain. I also had new diagnostic procedures and found a very good urologist who is very much into psychosomatics. She tells me that there is basically nothing wrong with me, just tight muscles due to dysfunctional coping with my emotions, especially anxiety. So, I really do relate to all you you, who also have chronic pelvic pain, and yes, it's seems to be very stubborn. After a period of 7 months with no pain, I again have pain, now the third weeke with pain starts. And I am bit at my wits end ...
My main problems are right now: what have I overseen? Could there still be anger, rage, guilt or shame that I haven't worked through? And how to become outcome independent? Despite the fact that I have such a long experience with the pain and the fact that it can disappear, when I am doing fine, I still struggle and get anxious.
Are there others who have the same experience?
Greetings from Denmark!!
Dear Time,
Thank you for your contribution to my thread, I am so sorry to hear that you have suffered with CPPS for such a long time and to an unbearable level at times. I relate entirely to what you are going through, of course.
As you know, I am still very new to the TMS - less than a month in - so my knowledge and experience is naturally lacking compared with others. That said, I am already getting the strong impression that while identifying and expressing emotional distress is very important, and a notably useful means of doing so being to pen ones thoughts in a journal, the "outcome independence" is more important.
I think it is only by accepting the pain and doing the activities one fears, wholly understandably due to apprehension about further structural damage, that improvement can probably be found. I don't know this for sure, given that I am still suffering from CPPS/PN....
But you admit in your post that at even at "good times," when the pain is absent or much reduced, "I still struggle and get anxious". Perhaps this then is the crux: the pain cycle is continually fed by fixation with the pain and fear as to when it is next going to arise, which leads to avoiding activities that might facilitate its return.
I know, for one, that I do this exact thing. When the pain comes, I think on it even after it has gone: I "grade" the pain, innately, thinking: "oh, I did such-and-such today and the pain was at this level, whereas yesterday..." And I get anxious, worrying when it will return, because in truth - I'm afraid of the pain.
And so even when the pain is absent, the effect of it is still there for me: fear and anxiety.
In the past, I allowed that fear and anxiety to prevent me from leading a normal life. I am trying now to do the opposite. It's hard. My progress is slow, I had a good day yesterday and a less good one today, but I feel that I am getting somewhere. For instance, sitting and ejaculation pain has been a big issue for me...but it isn't so much now. Whereas before, I worried before sitting down or prior to ejaculation and consequently seemed to condition myself to have pain by forensically monitoring myself during the act rather than just "doing it" and not expecting pain - now I just do it, uttering the following phrase: "
I would rather do [X] activity and have pain, than not do [X] activity but live in fear of the pain".
Or rather: "
I would rather that I do this activity and feel pain, if that's the way it's got to be, than not do it and live in fear of the pain. I will do this activity no matter what the outcome, nor will I think about it afterwards irrespective of the outcome, and I won't judge it by its outcome. I will just do it because I want to sit/walk/run/swim etc".
And on the most recent occasions, I haven't suffered pain while doing so. That doesn't mean I won't in future, but it does help convince me that psychology has a huge role to play here. Instead, my pain seems to be correlated more these days after brisk walks and for no apparent reason, I have yet to become "outcome independent", to use the term, with other activities. But I think I'm getting there and I hope so very badly that you find some much needed and deserved improvement in your symptoms. In addition to this, I still journal and reflect on my emotional state.
If it were structural, or wholly structural, I wouldn't think the pain could be OK doing x activity one day but not another day. Structure is structure and if something is damaged, and an activity brings it on, then it should happen every time. In that respect, being free of pain for 7 months is certainly significant. I was free of pain last year for three months. At the time, I initially attributed it to talking an antibiotic for just 3 days that damaged my legs (temporarily). In hindsight, I now know what I didn't know then: I never had prostatitis (this was before the CPPS or PN diagnoses) and I didn't take the tablet anywhere near long enough for it to have helped me. 3 days is laughably short when the prescription was meant to be taken for months. I stopped getting the pain because my mental focus had shifted entirely onto my legs. When the legs recovered, the pelvic pain ultimately returned with vengeance.
I keep thinking, there was a poster on here - I believe his username was Ezer - who had two operations in his pelvis to correct alleged pudendal nerve entrapment (which has, following a 2015 peer-reviewed paper, effectively been quashed as a viable etiology for causing PN given that it was found in numerous cadavers of people who had never suffered from pelvic pain in life), and had been in an actual accident with perceived trauma as the trigger of his illness: and yet he still managed to come through this by means of treating it as TMS. I had no physical trauma prior to coming down with this condition, all I had was extensive emotional distress at the time and constipation (which has been resolved).
I can't say I really buy the idea that something like this, to this magnitude, "just happens" structurally out-of-the-blue or as a consequence of something minor like being seated for too long (if that were the case then surely every elderly, housebound, disabled person or late-night office worker should have CPPS/PN but they don't. Why then in young or middle aged and otherwise perfectly healthy individuals who have undergone no or little physical trauma?). So, I have to believe that there's something in this TMS and outcome independence .
If Ezer and others can do it, I feel and hope that we can too.
