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17 year old daughter with endometrosis
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!
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@amwein, just checking in with you and your daughter. I hope that you will keep us updated with your Mayo visit and experience. Sending well wishes your way. 🙂
Jamie
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1 Reaction@amwein I am a social worker and advocate in the endometriosis field. I would be happy to chat with you and send you a bunch of resources and online support groups. (I even know of one especially for teens and I started one for moms of teens) Endometriosis is incredibly devastating and debilitating and impacts all systems in the body. Symptoms not only include period pain, pain with ovulation, but bowel issues like constipation and diarrhea, painful bowel movements, frequent urination, back pain, leg pain, pain with intercourse and fatigue. You want to find a specialist who can meticulously remove endometriosis from all of the impacted organs while preserving fertility. There are no specialists in Rochester, but I can send you support groups that have lists of specialists (On facebook: endometropolis and nancy's nook are two ones that have specialists). Please feel free to reach out to me by private message on Connect. Sending love and light to you and want to let you know that there is hope and with the right care your daughter can get some relief. Also for more resources you can go to caseyberna(dotcom)
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1 ReactionThe Mayo Clinic's information on endometriosis contains myths and misinformation. Is there a way to petition to update it?
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1 ReactionThank 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!
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2 ReactionsHi everyone,
My name is Laura and I was dignosed with endometriosis, and getting an hysterectomy on Dec 26th 2017. I get a wierd sensation in my pelvic area, and I only get pain with sexual intercourse. Other then this I don't get pain, I only have one overy left and I search this and what I read doesn't make since. I am married and it's going on 14 years and I would live to have my husbands baby, he helped me raise my daughter (his step daughter) and because of this I can't. Has anyone had this and still carried a child? If so can you please contact me before I make a mistake and regreat this later. Thanks.
Hi ,Laura
I had endometriosis also.
They did a dnc.which they explained to me that it's little fluid sacs,that pop.some times u see blood.
But I don't have any problems any more,also hun,if u want another child, I wouldn't do something, so permanent, u might come to regret later.
Best wishes and check on,just having a dnc done..♡
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1 ReactionThank you for the feedback,
The doctor I seen says the DNC won't work because the endometriosis has spread to my overy (I only have one left, and had a tuble) which my card won't pay for a reversal and the fertility cost so much. The more I ask question I get denigned because I'm 45 years old.
Thats,unfortunate, being so young.
That's a Big problem, these days.
I hope u don't have any more problems with the surgery.
Good luck.
Thank you, for you help.
Hello Laura! I'm sorry you are going through this- I'm sure it's scary and emotional. Have you sought out a second opinion?
I would like to connect you with other members @twins4ever, @catrogocki, @michellecrcrn and @fmassad to discuss whether they have been able to carry a child or not after diagnosis. The above discussion gives links to Mayo content on endometriosis.
Keep us updated and let us know how you are doing and what decision you make. Future readers will benefit from any information you offer. 🙂