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Post by angela on Aug 15, 2006 21:15:29 GMT -5
I am new to this board, and hoping someone can help me. It is my daughter that suffers from endo, she is now 18 and has had nothing but problems since she was 12 years old. At 15 she had 3 large Dermot cysts removed from her left ovary, at 16 she had another removed from the left, within 6 months abdominal pain and bleeding became worse and once again surgery was performed and endo was discovered. Endo was thick around both ovaries and fallopian tubes, behind the uterus and already spread to the bladder. Dr, cleaned up as much as she could and also cut some nerve endings to help ease pain. Now a year later she is in pain daily, she has been on a number of birth control pills, including the depro shot( in which she bled every day for3 months) and still remains in pain. She has seen 3 specialists whom all say the same thing, if she was older (28) they would give her a hysterectomy but at 18 she is too young and they don't want to take away her chances of having children, (at this time her chances of having a baby in the future sits at 50%). Latest Dr. wants to put her on Lupron, after much research she says no way, and I agree. This is my baby and as a mum it is so difficult to see her suffer this way, she has missed out on her teen years because of this problem. Is there anyone who can help her out, any advice on pain control,we are at a dead end right now.
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Post by ouchy on Aug 15, 2006 21:52:12 GMT -5
Hi, angela. Welcome to the forum. So sorry for your daughter! I have had endo since I was 12 years old (judging by the ever-so-familiar pain). One good thing you can take away is that doctors can't really judge a percentage of possiblity of becoming pregnant! A lot of them make guesses, but that's as far as they go. Also, after having a lap, there is like a 10 month-to-a-year window where your fertility actually increases, but they haven't discovered the reason for this yet, though! An awesome thing that your daughter can take advantage of (and I wish they would have had this when I was younger) is stick-on heating pads!!! They are GREAT!!! And no need to buy the expensive ones you can find in the menstrual pads section. Ones in the muscle rub cream section work just fine! I buy the cheapest ones, and they work awesome! You can also try progesterone cream from day of ovulation (she can use ovulation predictor strips and taking her temperature to find out when ovulation occurs) until the day of the period. I have to eat supper right now, but I'll post you later!
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Post by ouchy on Aug 15, 2006 22:30:36 GMT -5
Okay. I'm back. There is a plethora of info in the "Alternative Treatment" room related to natural treatments, so I encourage you to look there. I can say that I used the progesterone cream (for a different reason a couple months ago) from ovulation until I got my period, and the pain with my period was nonexistent! If your daughter doesn't have the standard 28-day cycle and you are interested in this method, you can buy what they call OPK's (ovulation predictor kits), which test for the lutenizing hormone--the last hormone to spike before ovulation--in the urine. This, combined with charting her temperature first thing in the morning when she wakes--before she gets up or talks or drinks water or eats anything--can pinpoint ovulation. The test strips show signs BEFORE ovulation, and the temperatures show when ovulation happened by a sustained temp. rise. If your daughter is still a virgin, don't fear anything, because she can take her temp. orally. There is a very good website that does all of the plotting and analyzing of the temperatures for you for free. www.fertilityfriend.com . (It's used mostly by women trying to become pregnant, but you can use it just to learn about your ovulation pattern, too.). This method will also show when your period is going to start, as the temperature will fall below the "coverline." Well, I hope she won't have to suffer forever! And don't get your hopes down on her not being able to have a baby in the future!!! There is no way to really get a % of what the chance may be. And, for some reason, should she be infertile, there are so many options and treatments these days. Hope you find some solace here. If your daughter is interested there is even a "Just for Teens" room on this forum .
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Post by Desiree on Aug 16, 2006 15:58:54 GMT -5
Hello. my name is desiree. i am 21 years old. i have been dealing with endometriosis for 7 years now. It has not been an easy road for me either. I had my nerves cut, supposally, but doesnt seem to help . I have had a surgury once a year for the last 5 years, I am back at the doctors. Trying to get another one. Please do not let her go on lupron. If she had a good specialist, he / she would not suggest lupron. i went on it. i regret it. pain is worse, and more problems since it. i just started continuous birth control. I am not sure if its going to help. But.. I will let you know. If she wanrts someone to tlak to please give her my screen name, jaxnma@yahoo.com. I am willing to talk to anyone with endo. Maybe my experience of doctors and problems, will help them take the right route later!
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Post by meldart on Aug 16, 2006 17:10:08 GMT -5
Hi, I am really sorry to hear about your daughters suffering and I would also like to say I think it is fantastic that you are being so supportive to her, I know that not all of our parents and loved ones have been so supportive and caring along the way. I agree with Ouchy about the heat pads, I wear one on my front and back most days just so I can ease the pain enough to walk, I find it really helps relax the muscles as I am tensing due to the pain.
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Post by denna on Aug 20, 2006 21:12:08 GMT -5
welcome angela, hmm, my mum must have feel like you too. i actually cried in the church when i got married. i'm happy for my mum coz at last i got married - i know my mum has been so worried that i might not get married. and now...i know she must have feel like you are feeling for your daughter. i've been suffering long too and i have never thought this would affect my mum so deeply until now.she has helped me a lot going through this pain.
i'm not sure what to advice but just being there with your daughter will help her and knowing you are in the forum to find some help for her is amazing.
Do try the endometriosis diet as recommended.Help her with her diet for a start and may be try some alternatives if she doesn't want to take Lupron.Take care all the best
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Post by angela on Aug 22, 2006 19:11:51 GMT -5
thanks for being here, yesterday i had my daughter( Kayla) look at this sight so she could see that she is not the only one dealing with this problem. I believe it brought her some comfort knowing there are so many other woman out there dealing with endo and she is not the only one. Hopefully I can get her to open up and talk with you desiree. I love this sight I have find it so informative, it is helping me to understand even more of what she is going through.
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Post by stephanied on Aug 23, 2006 22:00:31 GMT -5
Hello, I was 18 when I was diagnosed with endo, I'm 20 now. I'm on continuous birth control (ovcon 50). I had to try many different pills before this dosage but it works like a dream. I do still have my off days where I'm in pain but it's much better than not being able to get up at all. I also take midol just to ease the back aches, bloating, and cramps. If you're not seeing a specialist try finding someone in your area who might specialize in endo. Or just try to get some other opinions. You're daughter is clearly a strong woman and my thoughts and prayers are with her.
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Post by angela on Sept 6, 2006 13:50:51 GMT -5
kayla has an appiontment on the 12th with a new specialist, this will be the 4th Dr. Thanks to this site and the information we have gathered we have much more info to go with.
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Post by ouchy on Sept 7, 2006 21:36:12 GMT -5
Hi, angela! Fingers crossed! If you need any last-minute info/advice, ask away!!!
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Post by ouchy on Sept 11, 2006 20:44:29 GMT -5
Heyyy! I see you are online!!! How did it go???
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Post by angela on Sept 11, 2006 21:26:06 GMT -5
we go tomorrow at 10am, kayla has written a letter for the dr. she is fed up with just being a file to look at, she feels she is never taken seriously because of her age and gets frustrated when seeing a dr. ( last dr. said she was going to send her to a pain specialist to manage the pain, turned out kayla was tricked, she was actually sent to see a phyc for depression, angry she was but worked out well because she is not depressed, phyc said she was angry and fed up because no one has been listening to her) So she has written a letter telling how this disease has effected her life to this point and we can all hope that this time she is listened to and rather than mask the symptoms with pain pills and antiinflamitory pills and birth control shots and pills. I will keep you posted on her outcome, I almost wrote our outcome, I feel it is our disease, she suffers the pain and I do the leg work. alrighty i best go now beginning to feel a bit emotional.
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Post by ouchy on Sept 11, 2006 21:50:00 GMT -5
Good luck tomorrow! Kayla sounds like a strong woman!!! She is also very lucky to have you as an advocate. My mother never really stood behind me and just said that the pain was "all in my head." Kayla is so VERY lucky to have a supportive mother who undersatnds and wants to see her daughter get better!!! Hope tomorrow goes well! Best wishes! ~Ouchy
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Post by kaitlynblunt on Sept 15, 2006 23:56:33 GMT -5
Hey, I'm 18 and was diagnosed at 16. For me having endo and being a teen isn't easy, we live very busy lives with school, work and friends. One thing I found helped without 8 hrs of sleep a night i'm a mess in the morning with pain. Stress at school triggers it alot so I have to chill out. I'm on continuous birthcontrol thats a high dose. i get 4 periods a year which when you get your period the endo grows back worse after. Also then i don't get pain every month during that time. Heating pads, stomach massages, multivitamins, good underwear, and support is what gets me through. You can never be a normal teen with endo i don't go out every night or every weekend and party with my friends many nights its the couch and a good movie
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jtyra
New Member
Posts: 4
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Post by jtyra on Sept 18, 2006 11:25:10 GMT -5
Sorry to hear about you daughter, but maybe I can Help. My name is Jill and I'm 24 and from Boston. I have had serious issues with endo for about ten years now. I ve had four surgery's and been on the lupron twice. Good decision to not use it though, the side effects are unbearable. I currently take ultram for pain and although iv only been using it for 6 months, it really helps. It a non-narcotic pain killer and an anti-depressant. And though i don't like the idea of having to take drugs everyday to function, it vastly improves my quality of life. If i didn't take the pills I wouldn't get up, work, socialize, basically live. I often feel like i also have chronic fatigue syndrome because my body is so very tired, the pills really help. I also take Levora, birth control, continuously, so I don"t get a period. What does your daughter do for the Pain?? I sincerely hope everything works out for her because I truly know what It feels like to miss out on everything and not lead a normal life like everyone that surrounds me. Good Luck!! Jill
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