17 year old daughter with endometrosis

Posted by amwein @amwein, Mar 4, 2017

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!

Liked by AVOCADO1

Hello @amwein! Welcome to our community! This must be tough to see your daughter in so much pain. Thank you for reaching out. You will find our community to be supportive and helpful.

I’m tagging fellow members @bethmcch @twinskl @freemary @gman007 and @rosemarya all of whom have experience with acute or chronic pancreatitis. I hope they will share their experiences. I am also tagging members @twins4ever, @catrogocki, @michellecrcrn and @fmassad– whom have discussed endometriosis. Please share and learn from each other.

@amwein, here is some information about endometriosis http://www.mayoclinic.org/diseases-conditions/endometriosis/basics/definition/con-20013968 and here is a link to our visiting Mayo Clinic group on connect http://mayocl.in/2bGLTKj.

Please keep us updated along the way so future young ladies, on connect, that may be going through the same thing can learn as well.

@amwein, how long has your daughter been troubled with symptoms?

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Aww I’m sorry to hear if your daughters struggles with endometriosis. It is a debilitating disease. It’s hard to give advice as each case is different. There are quite a few questions- was there any blood testing done? On her hormone levels? Thyroid? Is she currently taking anything ? During her diagnosis what did they do? Was surgery done? Was it excision surgery or just a lap? What is her diet like? So much correlates with each other. For instance, if her estrogen is dominant then it would be best to start her in progesterone. Bio identical (BHRT) is best. Have you looked into having her see an endometriosis dr that specializes in endo? There are a few support groups on fb – Dr.John F Dulrma Endometriosis and Pelvic Pain Has a Facebook page to join and get some helpful insight and info. Good luck to your daughter and hope she gets better

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Correction– the drs name is John F Dulemba. Sorry for typo

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@amwein, I am so very sorry to hear about your daughter’s condition. I have the non-stop severe pain that accompanies chronic pancreatitis and to have anything added on to that is unimaginable. I will certainly say a prayer for her and for you. one thing I have learned in my 11 years since I was diagnosed with pancreatitis is that my primary caretaker, my supremely kind wife, often has more difficulty than I do. She does not take any pain medication and can really do nothing to help other than to try and make me comfortable and she does so very well. I admire your daughter for suffering through her severe pain and still making it to school and attempting to maintain some normalcy in her life. I pretty much become a hermit when I am having a flare-up which is almost continuous at this point. I really hope she can find some relief from some source because she is way too young to have to endure this for months or years. One thing that keeps me a bit hopeful is that science is progressing so fast that I do believe that there will be discoveries that allow for treatment of CP that is something other than just attempting to relieve the pain. I don’t have the knowledge, but I am certain there are incredibly intelligent people also working on the endometriosis in the same way studies are being done for the pancreas. Again, you both will have my prayers and best wishes as she seeks treatment for her horrible problems.

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@amwein, I hope that you are soon traveling to Mayo in Rochester. Or maybe, you are there now.
Here are some links that I offer.

This is a discussion group on Connect. If you have any questions about your visit, I know that we have other members who would be happy to provide some assistance. https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/

And this is the Mayo Rochester visitor reference page. Very useful!
http://www.mayoclinic.org/patient-visitor-guide/minnesota/travel-lodging-maps
I hope that your daughter will soon be experiencing better days.
Rosemary

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@jamienolson

Hello @amwein! Welcome to our community! This must be tough to see your daughter in so much pain. Thank you for reaching out. You will find our community to be supportive and helpful.

I’m tagging fellow members @bethmcch @twinskl @freemary @gman007 and @rosemarya all of whom have experience with acute or chronic pancreatitis. I hope they will share their experiences. I am also tagging members @twins4ever, @catrogocki, @michellecrcrn and @fmassad– whom have discussed endometriosis. Please share and learn from each other.

@amwein, here is some information about endometriosis http://www.mayoclinic.org/diseases-conditions/endometriosis/basics/definition/con-20013968 and here is a link to our visiting Mayo Clinic group on connect http://mayocl.in/2bGLTKj.

Please keep us updated along the way so future young ladies, on connect, that may be going through the same thing can learn as well.

@amwein, how long has your daughter been troubled with symptoms?

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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.

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@michellecrcrn

Aww I’m sorry to hear if your daughters struggles with endometriosis. It is a debilitating disease. It’s hard to give advice as each case is different. There are quite a few questions- was there any blood testing done? On her hormone levels? Thyroid? Is she currently taking anything ? During her diagnosis what did they do? Was surgery done? Was it excision surgery or just a lap? What is her diet like? So much correlates with each other. For instance, if her estrogen is dominant then it would be best to start her in progesterone. Bio identical (BHRT) is best. Have you looked into having her see an endometriosis dr that specializes in endo? There are a few support groups on fb – Dr.John F Dulrma Endometriosis and Pelvic Pain Has a Facebook page to join and get some helpful insight and info. Good luck to your daughter and hope she gets better

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-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.

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@gman007

@amwein, I am so very sorry to hear about your daughter’s condition. I have the non-stop severe pain that accompanies chronic pancreatitis and to have anything added on to that is unimaginable. I will certainly say a prayer for her and for you. one thing I have learned in my 11 years since I was diagnosed with pancreatitis is that my primary caretaker, my supremely kind wife, often has more difficulty than I do. She does not take any pain medication and can really do nothing to help other than to try and make me comfortable and she does so very well. I admire your daughter for suffering through her severe pain and still making it to school and attempting to maintain some normalcy in her life. I pretty much become a hermit when I am having a flare-up which is almost continuous at this point. I really hope she can find some relief from some source because she is way too young to have to endure this for months or years. One thing that keeps me a bit hopeful is that science is progressing so fast that I do believe that there will be discoveries that allow for treatment of CP that is something other than just attempting to relieve the pain. I don’t have the knowledge, but I am certain there are incredibly intelligent people also working on the endometriosis in the same way studies are being done for the pancreas. Again, you both will have my prayers and best wishes as she seeks treatment for her horrible problems.

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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!

REPLY
@rosemarya

@amwein, I hope that you are soon traveling to Mayo in Rochester. Or maybe, you are there now.
Here are some links that I offer.

This is a discussion group on Connect. If you have any questions about your visit, I know that we have other members who would be happy to provide some assistance. https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/

And this is the Mayo Rochester visitor reference page. Very useful!
http://www.mayoclinic.org/patient-visitor-guide/minnesota/travel-lodging-maps
I hope that your daughter will soon be experiencing better days.
Rosemary

Jump to this post

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!

REPLY
@gman007

@amwein, I am so very sorry to hear about your daughter’s condition. I have the non-stop severe pain that accompanies chronic pancreatitis and to have anything added on to that is unimaginable. I will certainly say a prayer for her and for you. one thing I have learned in my 11 years since I was diagnosed with pancreatitis is that my primary caretaker, my supremely kind wife, often has more difficulty than I do. She does not take any pain medication and can really do nothing to help other than to try and make me comfortable and she does so very well. I admire your daughter for suffering through her severe pain and still making it to school and attempting to maintain some normalcy in her life. I pretty much become a hermit when I am having a flare-up which is almost continuous at this point. I really hope she can find some relief from some source because she is way too young to have to endure this for months or years. One thing that keeps me a bit hopeful is that science is progressing so fast that I do believe that there will be discoveries that allow for treatment of CP that is something other than just attempting to relieve the pain. I don’t have the knowledge, but I am certain there are incredibly intelligent people also working on the endometriosis in the same way studies are being done for the pancreas. Again, you both will have my prayers and best wishes as she seeks treatment for her horrible problems.

Jump to this post

Unfortunately, I have seen a few bad apples, but also lots of very good docs in my 11 yrs. of very closely working with healthcare providers. In just one encapsulated account, I would not presume to say your daughter had a bad doctor, but it certainly does not sound like there was much interest in getting to the cause of the symptoms. I do have a conversation with each doctor I see for the first time, that I am not interested in their 3 min per patient recommendation from their “system” and if I can’t get as much of their time as I need to answer all my questions, then “have a nice life”. I am happy to wait a few extra minutes if they show the person ahead of me the same courtesy I ask for. I know you will not find that situation at Mayo and my limited understanding, is that they treat by committee. That does not paralyze them in analysis like i does companies, but does get a multi-discipline approach for your daughter. Please update us all after her appointment and I would love the feedback on how you feel about their approach to medicine.

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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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@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)

Liked by AVOCADO1

REPLY
@jamienolson

Hello @amwein! Welcome to our community! This must be tough to see your daughter in so much pain. Thank you for reaching out. You will find our community to be supportive and helpful.

I’m tagging fellow members @bethmcch @twinskl @freemary @gman007 and @rosemarya all of whom have experience with acute or chronic pancreatitis. I hope they will share their experiences. I am also tagging members @twins4ever, @catrogocki, @michellecrcrn and @fmassad– whom have discussed endometriosis. Please share and learn from each other.

@amwein, here is some information about endometriosis http://www.mayoclinic.org/diseases-conditions/endometriosis/basics/definition/con-20013968 and here is a link to our visiting Mayo Clinic group on connect http://mayocl.in/2bGLTKj.

Please keep us updated along the way so future young ladies, on connect, that may be going through the same thing can learn as well.

@amwein, how long has your daughter been troubled with symptoms?

Jump to this post

The Mayo Clinic’s information on endometriosis contains myths and misinformation. Is there a way to petition to update it?

Liked by AVOCADO1

REPLY
@endosocialworker

@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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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!

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Hi 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.

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