Phantom pains-Over one year post surgery?

I am so confused and upset and in pain. This is absolutely horrible. I had my hysterectomy a year and a half ago and am suddenly getting a lot of pelvic pain and pain in vagina. Went to a gyn who specializes in endometriosis because the pain feels very similar to the endo pain. She classified it as pelvic pain syndrome with no definitive cause. Then she says that it could be "phantom pain". She was saying my body is adjusting and could be kind of "missing my uterus, ovaries, etc. " And that this pain could go on for a long time as in years!!! Really wants me to look forward to the future-NOT!!
My question is has anyone else experienced this over a year from surgery? I didn't have this pain until recently. When it hits, it just aches for hours and hours. I just can't imagine that my body is "missing" my uterus and ovaries. So anyone else hear of "phantom pain" for after a hyster related to complete hyster. Any advice or suggestions are appreciated. I just don't know what to do.

First, are you keeping the pain diary I have suggested in the past? If you have been, then you and your doctors can see a better picture of what is going on and it is easier to note any changes and new pains. There is a such thing as phantom pain. If you have been keeping the pain diary and have had consistent care from the same doctors, it should be easier to determine if phantom pain is the culprit or not.

Also, not to be cynical, but did you see an actual endometriosis specialist or a doctor who knows about endometriosis? There is a difference. Unfortunately, without surgery there isn't going to be a way to definitely rule out endometriosis but the more knowledgeable and skilled the doctor, the better able s/he will be at determining if endometriosis is the culprit. Again, the detailed symptom dairy is going to be critical.

Being upset and stressed can increase and cause pain so keep that in mind. My doctors reminded me over and over again and I know they are right from personal experience.

With both an endometriosis and IC diagnosis, you could experience all kinds of pain from the rib cage to the thighs. It can be frustrating and miserable and not all doctors are going to be good at diagnosing and treating it, especially if you don't have doctors you have seen for awhile and on a consistent basis. The longer a doctor knows you and the more the doctor knows about you, the better able s/he can be at treating chronic pain issues especially if you are keeping a detailed symptom diary.

s

Thank you for the information. I have been keeping a pain diary so that should be useful with this. I hadn't thought about the IC being a cause of this also but it makes sense. I know what you mean about the stress and pain. I have been working on that to get my stress down and hopefully get the pain down. I know that if I get stressed out or even start to that my bladder starts spasming. How weird is that? I can start to get upset and within minutes I get the pain. Luckily I am starting to realize this and immediately take steps to relax. Not easy for me as I am a Type A and have never done this before but now have to . Thank you again. I just hadn't heard of this occuring after a year-not the pain which I had heard of but the phantom pain. So hopefully the pain diary will help them to help me.