A year of pain and still no answers. Looking for the experience of others

[JoJo2891]

Hi. I'm seeking experiences here not because I have been diagnosed with endometriosis but because this is what I think I have. My aim is to seek out the experience of others so I can consider my next medical step.

For just over the last year I have been experiencing anything from mild to debilitating pelvic pain. This can radiate from my lower pevis up to by belly button, out towards my left hip and round to my back. I can also experience pain in my thighs. The pain in my pelvis is often the worsy of all and feels like stitch with stabbing pain. It hurts at rest and during any activity and can occur at amy time of my cycle. Even turning over in bed can feel like a chore. Some days I feel 'normal' but I can still feel a hint of discomfort.

I guess I've always had pain, particularly bad during periods and mid-cycle, but have always dismissed them until recently.

I get period pain at least a week before my period which is in addition to the pain I have described above. My periods are frequently heavy and with clots.

I also feel the need to frequently pass water, particularly before and during my period and mid-cycle. I can also experience pain during intimacy.

So far I have had 5 ultra sound scans, a CT scan, physio, myltiple blood and urine tests, a urology referal, been treated for PID, and I'm still no closer to knowing what is wrong with me. I'm exhausted and sought counselling at the end of last year because I just couldn't cope. I've just completed my course of physio and although mildly helpful the core issues still exist. I take codeine to 'manage' the pain but this is often ineffective when it is at its worse.

I'm planning to return to my GP to discuss the possibility that I could be suffering with endometriosis. I'm just looking to seek the experiences of others in the hope I can present enough information to them to be taken seriously and to see if I could be right.

Thanks in advance for taking the time to get back to me.