Searching for help/answers

I am new to this forum and hoping to find some help/direction. I am 41 years old. I had a total hysterectomy/Bilateral salpingo-oophorectomy at age 26 due to Endometriosis - stage IV. I was told this would "fix" the problem at that time. I took hormone replacement on and off for approx 10 years. I have osteoporosis. I have been experiencing moderate to severe back/pelvic pain which has been getting progressively worse and is now at the point where it is interferring with my daily activities. I know when I had the hysterectomy that there was endometriosis on other organs - uterus and rectum where fused together. I'm wondering if the endometriosis has come back? I do not have a GYN - nor have I been to one in at least 10 years. I live in a different state than I did when the surgery was performed and cannot go back to that doctor. Where can I go to get help for this? I've mentioned the problem to my primary care physician and do not get the impression that he takes the potential problem seriously. Any help or direction would be appreciated.

It can be hard to find care after a hyster as some doctors feel you have nothing for them to work with. Hyster does not cure endo and if you had it on other organs it is likely still there. My bowel is stuck to my cervix with it. I have been told complete excision of the endo is the best bet and I will likely have remaining ovary removed to stop the estrogen as that is what it feeds on. I don't know how docs work in your area but demand a referral to an endo specialist likely a reproductive endocrinologist.

Welcome to HysterSisters! I hope we can offer you some helpful information and resources!

First, I would suggest starting a pain/symptom diary. You can use ReliefInsite’s online pain diary or at least get some helpful suggestions from that one as to what type of information to keep track of. The more detailed you can be the better. Having a pain diary can help you and your doctors "see" what might be going on.

Second, besides seeing your primary care phyician, have you consulted with any specialists regarding the osteo? It is possible that all the pain is a result of the osteoporosis. Or there could be more going on such as endometriosis. Is there a pelvic pain specialist in your area? How about an endometriosis specialist?

Who helps you with your HRT? That doctor may also be able to offer you some help.

Right now you need to find a doctor who will listen to you and help direct you to the specialist who can do the tests to see what the root of your pain is from and go from there. You may find you end up a handful of doctors as each one deals with his/her specialty. It might take some time but be persisitent!

We do have a pretty extensive Resource Database you might want to look through for information.

I wish you all the best and hope you can find a medical team who can help you feel your best soon! in there! S