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Endometriosis Message Board
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Old 05-30-2011, 11:27 AM   #1
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saltire HB User
Trying to find help for my daughter

I am sooo frustrated... My daughter has had so many health problems for years and years, she is 17. I am starting to wonder if it could be endometriosis. She had problems before her periods started but is getting worse. When she started her periods she would get them every 2 weeks and would be in soo much pain she couldnt function, i had to take her to the hospital cause she was in and out of conciousness with the pain. She was put on birth control and is doing much better with this, still has pain but not as bad. She also has bladder spasms, Irritable bowel, pain in lower back, hips ( which radiates down her leg and makes her feel sick) and always has abdominal pain ( which could be from the IBS) has dealt with anemia, asthma, allergies, she has seen Urologist, Gastroenterologist,Rheumatologist, bone and joint doctor, Physical Therapy, she has had many many tests done, colonoscopy, endoscopy, bladder scope, mri's, xrays, the list goes on and on she never has a day where she feels completely well, she also has Orthostatic hypotension, gets feeling like her chest hurts and heart beats really fast.... Next step they want to send her to is a genetics doctor, not sure if i agree with that but am willing to try anything. I did ask her doc about endometriosis and he automatically said no :/ Sorry this is soooo long, i just wonder if anyone else with endometriosis suffers these things too?
saltire

 
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Old 05-30-2011, 07:53 PM   #2
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pinaay HB User
Re: Trying to find help for my daughter

Hey
I'm 17 as well, and I think that I might have endometriosis. My mom had it, and I seem to be developing symptoms.
Like your daughter, I have lower back pain, radiating muscle pain and when I started my period, it came every 2 weeks. I also feel the need to urinate as soon as I go to bed, even if I have just used the lavatories. My pain isn't so bad that it interferes with my lifestyle, but it's still there, and every woman is different.
I have had chronic feelings of muscle tenderness since I was 12 and I went to a chiropractor and rheumatologist. They could find nothing wrong. I'm not sure if this was related to endometriosis, but it could be.
I know for sure that I have ovarian cysts- I had an ultrasoud done when I was 13, and they were discovered. Your daughter might have cysts, as well. They are not dangerous, however, and rarely need treatment.You might want to ask your doctor for an ultrasound. If he/she doesn't think it's necessary, go to another doctor, until you find someone who will do it.
I want to mention that I don't know for sure if I have endometriosis. My suspicions are only because my symptoms are much like my mom's. I am going to see a gynaecologist in July, and the only way to determine for sure that the problem is endometriosis is by having a laparascopic surgery. This is a minimally invasive procedure, usually a day surgery, and recovery takes only a few weeks. Utrasounds can be used to diagnose endo, but usually only in very late stages.
I think that you might want to see a gynaecologist before seeing a genetics doctor. Your daughter's current doctor might have said that it wasn't endometriosis because your daughter is young. However, endometriosis is very common, even in young women. Dancing with the Stars' Julianne Hough has it ( you can look up articles online- I did, because I find it comforting to know that this is really a very common condition).Definitely ask the doctor if your daughter can get a referal to a good gynaecologist (you can look some up online to find a good one). Having a gynaecologist will be valuable for your daughter throughout her life, not just for this incidence. It is better to "get into the system" now,before she gets old enough to have serious "female problems".
In the mean time, to help deal with the pain, I recommend hot packs and light to intense exercise, if she feels up to it. Even stretching seems to help alleviate my symptoms, as does eating plenty of fruits and vegetables. It is good that your daughter is on birth control pills- my doctor told me that this is one of the non-surgical methods to treat endo, and prevent scar tissue from building up.
Overall, I think the best advice I can give is to assert yourself with the doctor. If your daughter wants an ultrasound or gynaecologist, make sure she gets one. Don't be afraid to "steer the ship" a little- it's better to be safe than sorry.
I hope this helps a little, and I hope my post wasn't too long!
Best of luck,
pinaay

Last edited by pinaay; 05-30-2011 at 08:55 PM. Reason: Spelling

 
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saltire (05-31-2011)
Old 05-31-2011, 03:21 PM   #3
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saltire HB User
Re: Trying to find help for my daughter

Thankyou for your help, I will definately look into taking her to a gyne. She has weird symptoms and its very confusing, just this morning she woke feeling very sick, nausea, shaky,very tired, very pale (her lips were even the same colour as her face) she could hardly function, This is not related to her period either. I checked her blood sugar and it was ok, and gave her something to eat which she had a hard time eating as she thought she was going to be sick. She eventually slept a little while longer and woke up feeling better, weak but better the rest of the day. I never thought to check her blood pressure as she Orthostatic Hypotension, and i wonder if this could have caused her to be like this. The last time this happened so bad was in Jan. I am almost at my wits end trying to get answers, they have diagnosed her with Fibromyalgia, which she has no pressure points so not sure about that. Thanks again, and hope you get on ok at your appt and you get some answers too

 
Old 05-31-2011, 04:59 PM   #4
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pinaay HB User
Re: Trying to find help for my daughter

I'm glad I could help and thank you for wishing me luck at my own appointment I understand how frustrating it is to not know what's going on. Fibromyalgia could definitely be part of the reason why your daughter's pain is so severe, but I find it's diagnosis to be somewhat ambiguous, since there's no real, concrete test for it. Her recent symptoms could be caused by her hypotension-you probably should get her blood pressure checked, just in case. This is a useful website for more info on endo
http://www.womenshealth.gov/faq/endometriosis.cfm
I hope it helps.
I don't think it's ever a disadvantage to be ''over cautious'' by checking every possible thing that could be wrong. I hope she feels better soon

Last edited by pinaay; 05-31-2011 at 05:35 PM. Reason: Spelling

 
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