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Post by claireboe on Mar 22, 2011 20:23:06 GMT -5
I'm going nuts. I've been researching various natural treatments for endo for over a year for my dd.
She is on the pill without a break for her period, which I hate. She is still in pain all the stinkin' time, so I don't really know why we're still doing that. Dr. is pressuring to put her on Lupron, but really, neither one of us is willing to introduce something like that into her system that we can't take out. And, I haven't spoken to one person who would do Lupron a second time, so...NO.
We tried homeopathy, but it was not for her. We went to a naturopath, who did a few colonics, and said she could treat endo. Dd and I both started to feel that this wasn't the right fit for her, so we stopped.
We want to try bioidentical hormone therapy. I also would love for her to try to adhere to the endo diet. That one isn't coming easily.
I am starting to feel desperate. If I can't find something to help keep her off the pain meds, I don't think the doctor will continue to prescribe them. He keeps talking about how she could get addicted, as if I'm not concerned about that. She tries not to take the pain meds, so she does deal with the pain a lot.
The other part of finding her help is that the pain may not be from endo adhesions. She has pelvic congestion syndrome, for which the treatment is hysterectomy. She also has these blasted ovarian cysts that seem to pop up a lot.
Can y'all help me to focus? I'm not sure if I should find a true endo expert (M.D.), or just wash my hands of western medicine. Well, I can't completely anyway, because for now, we need the pain meds. I just ordered the Pro Sirona (sp?) oil that the Endo Association recommends to see if that could help a bit.
All these is complicated by having HMO insurance. They won't cover alternative medicine, including BHRT, and I will have to fight to get her seen by a true endo expert.
I feel really high maintenance right now. If anyone can help me focus, please do.
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Post by chicagogal2 on Mar 22, 2011 20:34:33 GMT -5
HI!
Well, I think some natural approaches would include pelvic physical therapy, acupuncture has helped alot of the ladies here, I personally do massage/chiropractic which has been helping alot. You can go online to you tube and search piriformus stretches. The piriformus muscle is in the butt and I have found stretching mine which is very tight from the endo ( probably clenching for pain management ) has helped. I take alot of baths as well with epsom salts to help relax, for some reason taking a bath helps things to calm down. Probiotics also help, get the refrigerated kind, that can help ease any IBS symptoms that come up. I was taking tramadol for awhile on my worst period days for pain but it makes me sleepy and with the massage I am getting by with just advil on my worst days. I hope afew of these things help! I'm still digging around trying to figure out what works for me. I'm trying to get pregnant so my options right now are limited to natural stuff for the time being.
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Post by Karen on Mar 22, 2011 21:02:44 GMT -5
Would it help you focus if you sat down with her and the two of you made a list of things that needed to be addressed, one by one, and then prioritize them? Then right down your list of options to treat each complaint, and perhaps that'll help you sort it out a bit, determine which treatment route to take?
As for the endo diet, if you're getting some resistance, can you at least ask her to try it for 2 weeks? Get the whole family on board if you can. Better yet if you can do it without them knowing for a meal or two! If it doesn't even start to work a tiny bit after those 2 weeks, then you can at least say you tried, but if it does and your daughter starts to feel a bit of relief, that can be a HUGE motivator to stick with it. Trust me! I don't think many of us love giving up a lot of foods that we're used to, but I'd rather give up pain any day...
I know how overwhelming it is, I think we all stumbled around until we found something that works. It'd be impossible to try everything at once, and if you did, it'd be hard to know which treatment made the biggest difference! Prioritize, then make baby steps. And most importantly, keep your daughter involved in it. She might give you some insight as to what's going on that she hasn't mentioned before or that you hadn't thought of!
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Post by pretty on Mar 23, 2011 11:24:01 GMT -5
I agree with Karen. Maybe sit down with your daughter and compare things: would it be better to have a fatal disease, that's not painful, that can't be helped with diet? In my world, I try to look at the positive. I'm glad, if I have to have a disease, that it's one that first doesn't kill me, and second, I am able to take steps that really aren't that hard, like eliminating certain foods from my diet, that makes a huge difference in my symptoms. I bet there are a lot of kids out there with CF, MS, cancer who wish they could feel a bit better just with a few diet changes. I know many women just don't want to look at this disease AT ALL and have a lot of anger and despair around being 'sick' - they just don't see it as fair. I understand that. But I feel like we all could really suck it up and look at it for what it is - it WONT kill you, but it will make you suffer like you wish it would! For me, I'm not very financially flush this year, and I have to make some sacrifices as far as my medical care, but at least I can follow this diet, and like I say all the time, once you have been on the diet pretty strict for a month, you can then discover the glories of 'cheating'. It's not like I NEVER eat a slice of pizza, or chocolate, or coffee.... I just have to do it consciously, and usually on the weeks not right before or during my period. Yeah, I occasionally still have bad constipation or pain here and there, and I'll always probably have pain with sex, and ovulation - but that is NOTHING compared to the moaning and groaning I was doing last year! I was missing one or two days of work EVERY WEEK! That is a pretty substantial difference. So give your daughter a little perspective. I still think she will be more motivated by feeling awful than by anything anyone says to her, she's that young, and I bet she's totally sick of hearing about endo, and probably wishing that if she just ignores it, it'll go away like a bad dream... over time, all of us on here are motivated by our symptoms to try new things and if it gets bad enough believe me that's when people go to the diet. Many then say, wow, I should have done this years ago, it's really not that hard, and once you get food in your house you can eat, you quickly notice changes you may not have even known were from endo. My overall energy is better, I don't get as sleepy, I'm not bloated and I don't have pee and BM issues because most of the inflammatory foods are just not in my body. I didn't know all these were endo symptoms, I just thought I felt like that normally! anyhow, it's a matter of perspective.
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Post by claireboe on Mar 23, 2011 11:52:10 GMT -5
You have a very good way of approaching it, pretty. It's funny how you can know your own child, and have a hard time figuring out how to talk to her about something. She's in a bad mood a lot, whether it's the pain or just being 16 so I have to choose my times. She was on Vicodin yesterday, and she was her old self. Isn't that sad? In reading the diet last night more thoroughly, I think it's doable. The biggest hurdle is giving up dairy. I might just try to get her to give up all dairy except milk at first. We drink raw, whole milk, and it doesn't have the same negative effects on the body as processed milk has. I'm curious about yogurt, as well. She's noticed that it actually helps keep her regular, so I kind of hate to give that up. I 'spose we'll work with it however we can. I feel a little more steady today about everything. I am dealing with my fil's illness and having to get him to doctor appointments, each of which delivers worse and worse news about his health (Stage 4 lung cancer, Stage 4 COPD). That's taking a lot out of me, in addition to my daughter's health. I am going to the doctor myself tomorrow morning for a full physical. My weight is the highest it's ever been (I stress eat), and I just don't feel well. It's all related to stress, so I figured I'd get a physical, then start making changes (like the endo diet!) I so appreciate your input, ladies.
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Post by JC on Mar 23, 2011 12:24:25 GMT -5
Hey! Looks like more than one person may benefit from the diet!
I'm sorry about your father-in-law. We've been talking over PM but I just wanted to drop by here and offer my support.
The is two ways to approach the endo diet: 1. Quit everything cold turkey and start the diet right away. Then after about a month or two of being on the diet you can introduce foods slowly back into your diet to see how your body reacts. 2. Slowly eliminate/replace foods, one by one, out of your diet until you reach the point where you're completely on the endo diet.
I tend to prefer option 2 because I burn out easily when I have to make a drastic change. She may not have to give up dairy, but you'll never know until you try it for a while to see what happens. Once you have tried it for a while and don't observe a change, then it's probably safe to say that dairy wasn't causing her problems. But you never know until you try. I'm not a parent but I think making slow and small changes would work best. It wont seem like such a daunting task if the only thing you're facing is one food group at a time.
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Post by claireboe on Mar 23, 2011 12:27:39 GMT -5
That's a really good point, Jenaya. I tend to be an all or nothing thinker, but you're right, gradual change might be better. I saw quite a few recipes in the endo diet book that she might like. Maybe I should just make something and see what she says...and THEN tell her it's from the endo diet. ;D
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Post by JC on Mar 23, 2011 12:30:00 GMT -5
I'm an all-or-nothing thinker too. I tend to freak out when things don't happen NOW. LOL
It's difficult to do this diet. It's a drastic change. But a lot of women have had success with it. We will always be here to offer some guidance! Especially pretty. She's our endo diet guru. ;D
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Post by pretty on Mar 23, 2011 13:04:34 GMT -5
You just can't shut me up lol. I just won't stop lecturing! Claire, please use organic milk if you must use milk at all. The hormones that cows are given are hell on women with endo, whether they like it or not. Milk was not meant for people to eat. It's for baby cows. Most humans cant digest it but we think of it as so healthy and as a comfort food. I think that drinking milk is making your daughter more ill. Why not start there? Replace with rice or almond milk, not soy, which contains phytoestrogens and is chemically processed. Do it for two weeks and have her keep a food diary and write down her pain or symptom. Do it whether or not you start the endo diet, so she can see cause and effect.
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Post by JC on Mar 23, 2011 13:15:14 GMT -5
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Post by painsaway on Mar 25, 2011 2:35:42 GMT -5
Hi, I am new on this message board, and just posted my introduction story. I think what chicagogal2 posted is some good idea's although I have not tried any of them yet myself, basically what is on this whole website is great ideas which I do want to try myself eventually. I agree with Karen and pretty, they have really great ideas! I bought the diet book myself and am trying to do it myself, but since I have not finished reading the book yet, I still don't know all the foods I can eat instead. Also, it's a little hard to not eat certain foods when you are with someone who is eating it and it smells really good. But I am trying really hard. I think it's a great idea to change it gradually, Jenaya. That is how I have started it. I still drink the raw organic milk because I haven't found out what I can have instead. I have never tried rice or almond milk, but thanks for the idea, pretty! Also, I have found another website that has a lot of good information. I haven't read the whole thing yet but I hope it can help you. It's: www.hersfoundation.org. One more thing also, I have found out some disturbing information about Lupron. Please read my introduction story, I wrote about it on there and I hope anything I wrote can help you.
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Post by JC on Mar 25, 2011 8:36:03 GMT -5
I really like almond milk. I find that the almond milk that has to be kept refrigerated is a lot better than the stuff they keep out on the shelf. The almond milk I get is made by Silk. It's very yummy
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Post by pretty on Mar 26, 2011 11:38:08 GMT -5
Hows it going Claire? any progress? Last night my young cousin (13) called me up. I'm her favorite hip female relative (I'm waaay cooler than her strict dad- a recovered addict, and her newly-Catholic-again super religious mom lol) Ever since she could talk, I've been talking to her, and since she went in middle school I've really stressed that when she has something to say and doesn't have anyone to say it to she can call me.... anyhow, she called me with basically the old story: this boy she has liked for '4 months and 25 days' has been sending her 'sexts' (Hilarious - "Can you come over and milk my cow" sort of 'sexts' lol) on her phone, which she naturally sort of liked, and then her ultra-religious mom read the texts, and called the boy's mom, and my uncle went over and saw her dad, and the boy is 'never allowed to talk to her again!!!!' and now she is mortified and grounded and all that... anyway it reminded me (I talked to her for an hour or more!) of just how impossible, lovable, and singleminded young teens can be, and how insulated they are by their own desires, beliefs, and hormones! anyhow Claire I just thought of you and your daughter and remembered that although we may have all the answers it's sort of a rough road convincing a teen, who can only deal with just being a teen, of anything much less no junk food and a restrictive diet and supplements and doctor appointments, with all the social and political and chemical and hormonal information they're bombarded with constantly, sometimes it's hard even to connect much less convince them of anything... I spent some valuable time explaining to my sweetie that her parents love her so much that they are not able to deal with this and she's just gonna have to suck it up until they un-ground her lol... anyways Claire, I feel for you lady! Pretty ps she promised to keep calling me, which is as close to success as I can hope for. I am going to take her to lunch next weekend for an update. She wanted to come move in with me but I said no, things are going to have to be a lot worse before that will happen, but I'm here in the meantime lol.... love that kid
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