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Pain in back and legs connected to Endo?

I was diagnosed with Endo 3 years ago via laparoscopy. I had relief for about a year post-surgery but the pain has fully come back. I have tried a bunch of birth control pills and none have worked. Over the summer I developed new symptoms. I now have painful back cramps which send pain radiating through my hips and down my legs. I get numbness and tingling in my feet and pain in my hips that makes it hard for me to sleep. I also have pain in my tailbone and crotch area when sitting down.

I have had x-rays, been tested for multiple autoimmune diseases, seen a foot doctor, go to the chiropractor, etc. They haven't found anything that can explain the leg pain. I have also started seeing a physical therapist and am going to start pelvic floor therapy as well. I went to see a complex gyno specialist and brought up the back and leg pain. I have done research on sciatic Endo and brought that up as well. She told me that sciatic Endo is super rare and that I probably just have "back issues".

I really think that the back and leg pain is connected to my Endo. It flares up before and during my period to the point where I am limping from the pain. Has anyone had similar symptoms? Were you able to get help for this? It is so frustrating to have my pain overlooked 🙁

  1. Hey! So I’m a teenager experiencing issues that seem to be related to either PCOS or endo, although I don’t have a diagnosis. I also have had chronic hip pain for the past few years that worsens before and during my period. It’s gotten to be something that inhibits my ability to manage the day-to-day stuff. Unfortunately, doctors won’t take me seriously either. My physical therapist (also a hip specialist) said endo would make sense, and the period aspect of it stumped my orthopedic. I have had one gynecologist (currently on my third) tell me it very well could be endo but it wasn’t worth diagnosing. Now I’m just trying to manage :/

    1. I was diagnosed “by elimination” today! We are looking at surgery for confirmation in the near future. My doctor is working with me on a pain management plan too. I cried happy tears for the first time in a long time, it was so refreshing to be listened to.

    2. That is great news, ! I am thrilled you kept advocating for yourself until someone really listened. Shame on the doctor who told you it wasn't worth diagnosing right now. Your future fertility could be at risk and your mental and physical health in general. Please keep us posted as to how you are feeling and how the surgery goes. I will be thinking of you. Gentle hugs. - Lori (Team Member)

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