Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Hi All,
I just finished six months of Lupron and had my follow up Ultra Sound today. Unfortunately the Lupron was only mildly successful, after about four months on it i had about ten days during which i didnt need narcotics to deal with the pain, then it would return until the next injection. now that my six months are done, the pain is coming back. While on Lupron i developed really bad back pain. it could be completely unrelated as i have a mild scoliosis as well, but i have never in my life had back pain even remotely this bad. So now i get nerve blocking injections for my back, and the pelvic pain is coming back as well.I do physical therapy, have modified my diet, and take muscle relaxers and pain meds to manage.
Unfortunately todays ultrasound showed that my pelvic congestion syndrome is still there, and bad, and my doc found adenomyosis lesions in my uterus during the ultrasound. so now i have that on top of the endo and the PCS.
She told me she is at a loss. She says lupron typically give people a good two years without pain, but it just didnt work for me. My last lap did nothing to relieve my pain.... it feels like my body just gets worse and worse. I adore my doctor and she has been a great support through all this, but at this point she is not helping me. She says i can do a full hysterectomy but she really doesnt support that decision (plus i want more children if possible), and she doesnt know of any other treatment. She put me on Depot-Provera for now...
Im just so frustrated. I have tried everything my doctors told me to, from holistic, to surgery, to drugs, i do physical therapy, i live healthy.. and yet this just keeps getting worse. I am already losing out on promotions at work because i am constantly out for appointments and such... i dont want to sacrifice my career and my ability to provide for my son. these conditions have affected my quality of life so much, and i have to accept that, but i just cant accept someone telling me there is nothing i can do...
I just finished six months of Lupron and had my follow up Ultra Sound today. Unfortunately the Lupron was only mildly successful, after about four months on it i had about ten days during which i didnt need narcotics to deal with the pain, then it would return until the next injection. now that my six months are done, the pain is coming back. While on Lupron i developed really bad back pain. it could be completely unrelated as i have a mild scoliosis as well, but i have never in my life had back pain even remotely this bad. So now i get nerve blocking injections for my back, and the pelvic pain is coming back as well.I do physical therapy, have modified my diet, and take muscle relaxers and pain meds to manage.
Unfortunately todays ultrasound showed that my pelvic congestion syndrome is still there, and bad, and my doc found adenomyosis lesions in my uterus during the ultrasound. so now i have that on top of the endo and the PCS.
She told me she is at a loss. She says lupron typically give people a good two years without pain, but it just didnt work for me. My last lap did nothing to relieve my pain.... it feels like my body just gets worse and worse. I adore my doctor and she has been a great support through all this, but at this point she is not helping me. She says i can do a full hysterectomy but she really doesnt support that decision (plus i want more children if possible), and she doesnt know of any other treatment. She put me on Depot-Provera for now...
Im just so frustrated. I have tried everything my doctors told me to, from holistic, to surgery, to drugs, i do physical therapy, i live healthy.. and yet this just keeps getting worse. I am already losing out on promotions at work because i am constantly out for appointments and such... i dont want to sacrifice my career and my ability to provide for my son. these conditions have affected my quality of life so much, and i have to accept that, but i just cant accept someone telling me there is nothing i can do...
That surgery without removal of ovaries is useless anyway IMO. The ovaries will continue to feed the sneaky hidden lesions and BOOM, back at square ONE.
For me, the catastrophic surgery to remove everything, was necessary to save my life. It did end the lifetime of heavy periods of course, but NOT the pain. For 20 years I have 3 weeks out of the month that I am debilitated by pain.
Yes---CRAMPS, bloating, distention, constipation, pressure on bladder. I still have to keep a heating pad close by AND have begun taking opiates through a Pain Management Specialist through our hospital.
It seems that maybe you are blaming yourself. If so, PLEASE DON'T. You've done everything you should. I took 2 separate series of Lupron before my final surgery and during the 2 previous surgeries, which were botched. I got NO relief. It decimated my bone density, so I am currently "living" with DDD, bone on bone pain, as all cartilage is gone....facing replacement of both knees and left hip.
I'm not trying to frighten anyone. I'm giving you the cold hard facts of my experience. I trusted the doctors and took the Lupron. No one told me the damage it could do. Now there's nothing I can do except regret that I ever allowed that chemo-therapy to be injected into my body. Please don't shoot the messenger!!! Doctors are totally misrepresenting Lupron to us women who are desperate to get our lives back.
Hugs~~Pup
I have been concerned about bone density loss but my doc seems to think taking calcium is all that is needed. I wish she would order a bone density scan, just to make sure...
My next step is an upcoming MRI to get more detail on my pelvic veins and my lumbar/sacral spine, as i have developed really horrible pain in that region...