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Apr 25, 2017 · 17 year old daughter with endometrosis in Women's Health

Thank you very much! Someone else on this group mentioned Nancy’s Nook and I am overwhelmed, in a good way, by all the information. I so appreciate your email. We opted to not return to Rochester for endo because the research does not support that Mayo can manage/treat endo as well as other drs. We received wonderful care for her GI issues, but this is something that will not justify travel to Mayo. We are hoping to have her come to the Pain Rehab program in July in MN. I will email you today, thank you!

Mar 8, 2017 · 17 year old daughter with endometrosis in Women's Health

We are going to Mayo in Rochester soon! I am very hopeful. When they let us know that the pelvic pain clinic would see her, I cried. Thank you for the links!

Mar 8, 2017 · 17 year old daughter with endometrosis in Women's Health

Thank you and best of luck to you as well! I hate to see her suffer and I am sure your wife feels the same way about you. My very social daughter is also becoming a hermit and it is hard to watch. She went to school today for the first time in 10 days – had to pry her off the couch, but she did it! 😀 Best of luck to you – you’re in my thoughts as well. No one should suffer like this!

Mar 8, 2017 · 17 year old daughter with endometrosis in Women's Health

-Yes, blood work shows she is anemic, but otherwise normal
-thyroid is normal
-Surgery April 2015 removed endo tissue in 4 areas – excision via a lap (I am confused by the “or” but I am so new to this and only in looking at the mountain of medical records we submitted to Mayo in MN am I understanding how little I know! Gallbladder was also checked at same time and was healthy
-She eats a healthy diet – high fiber, low fat, LOVES sugar, but has cut back. We tried gluten-free, dairy-free, sugar-free, free-free and nothing seemed to change how she felt. She eats everything in moderation. The things she really limits: dairy, gluten, and sugar. She does not eat fast food. We cook at home a lot.
-We thought she had the best Dr. in our city for her type of situation, being a teen with endo, but after we were referred to Mayo, the Dr. became very defensive and combative. In looking at her notes, comparing them to other drs, they are very limited in what she has to say about our daughter as a patient. Some drs see her and have pages of notes, the GYN has 3 sentences. She prescribed her Aygestin 100 mg (up from 50) and that has been the only course of treatment since Jan. of 2015, but she wanted to jump her to Lupron – we want a 2nd opinion. She does not do internal exams.

I joined the FB page, thank you!

She has tried her hardest to remain active and goes to an arts high school where she is in a musical theatre program. She loves to dance and sing, but on days she has dance class, she comes home crying in pain. She can no longer drive to school.

Mar 8, 2017 · 17 year old daughter with endometrosis in Women's Health

Thank you! When I am “Dr. Web”, I go to Mayo first.

She has had terrible periods since they began when she was 12, but was officially diagnosed when she had a laparoscopy in April of 2015. She was in the children’s hospital with pancreatitis AND her period 5 months in a row. It took a long time for anyone to listen to her father and I that there had to be a coorelation. After her surgery, she had some relief, but the symptoms began again in Sept. of 2015 with more hospital stays.

Mar 8, 2017 · I'm new here.... in Chronic Pain

I am so sorry – I have to manage insurance issues frequently and just when you become an expert, something changes. One thing I have learned is that you do need to be persistent. Sometimes they might have old information in the system so they applied it to the wrong insurance, or the codes do not match – and MRIs are only done as ordered. If you had one sceduled for your back, they cannot add on the brain scan unless the Dr. changes the order completely which would require a new approval. All very frustrating for you, I am sure. We have been there too. Make sure you become your own best advocate! Can you talk with your Dr. to see what they advise as far as going to the appts. as scheduled? Keep after the insurance company. Keep track of your bills, statements, etc.

Going at 6:30am is totally believable as is going at 10pm at night! Those machines run around the clock. 😀 Good luck!

Mar 4, 2017 · I'm new here.... in Chronic Pain

Did you find an answer? I have had terrible back pain, and have found a good chiropractor in Jax, but unsure of sharing that type of info in these forums (new here!) I swore I would never go to one, but after trying PT for years, he helped me in weeks. Another thing that has worked and doesn’t require much effort as far as leaving home, co-pays, appointments is something called the Miracle Ball Method. You can find it online – good and gentle stretching for back, neck, legs. Hope you have found relief!

Mar 4, 2017 · 17 year old daughter with endometrosis in Women's Health

Hello – I am new to this format/forum. My 17 year old daughter was diagnosed with endometrosis in April, ’15 via surgery. She has been getting progressively worse and also has chronic pancreatitis which seems to flare up when she gets her period. We are heading to Rochester in hopes of meeting with someone there to help us as she is aging-out of the children’s hosptial that has managed her care until now. She is on her 24th hospital stay since July ’14 with the combo of these two chronic conditions. Pain level is severe, her GYN has provided little options for care. Her pelvic pain is so bad that she can hardly walk some days, going to school is a struggle and she is feeling very isolated and lonely. There are no support groups for her in town. Any direction, suggestions, help is much appreciated. Thank you!