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Post by tfaith on Feb 21, 2009 18:28:46 GMT -5
Hi Ladies.... So I went to my obgyn this past wednesday, and it got me really hopeless with this whole endo situation. I have had two laps in the past two years already, and I just had my last one this past august, but i still have really painful periods. It has gotten better in the sense that I don't have cramps all month, and just the week before and of my actual period. So the first thing I tell my doctor is that I don't want to take any strong hormones because I couldn't handle all of the side effects and it made me a crazy woman. I asked if there was some kind of LOW DOSE birth control or something that would help. He said since I have a very aggressive case that low dose stuff wouldn't do much and that he really reccomends the lupron depot injection. I have heard of lupron, but not lupron depot. I told him I would think about it but really would rather be in severe pain once a month than feeling horrible all month, every month (from hormones) Still, he suggests this stupid injection. He gave me a big packet of info, and all the side effects alone seem nuts to me. Not sure how much it is, but the pharmacy said without insurance its $714!! From the way the nurse was talking to me, he doesn't want to prescribe me anymore pain meds. But i don't want to be forced into taking this shot either. And I don't want to try and find yet ANOTHER doctor... Not sure what to do at all, because if he doesn't give me pain meds (like I have been getting) then I don't want to deal with severe pain....or hormones.... There has got to be another option!?
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Post by ouchy on Feb 21, 2009 19:29:12 GMT -5
Lupron is Lupron Depot. Women just call it "Lupron"...just like how we call endometriosis "endo."
Have you tried radical diet change?
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Post by tfaith on Feb 21, 2009 23:03:15 GMT -5
I am trying to get an appointment with a nutrionist to try and get a very specific diet down....not sure if you remember but i have other stomach probs and what not where i have already cut out a lot of things from diet, but i know i read somewhere about a insulin resistance diet, but with that i am not sure what i would eat then...
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Post by ouchy on Feb 22, 2009 15:02:48 GMT -5
If you're interested in the insulin resistance diet, it's not really a diet at all--just eating more of how we were meant to eat. No refined foods (no chips, pastas, etc.). Complex carbs and when you do have them, balance it with protein. Easy peasy.
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Post by lynzw21 on Feb 23, 2009 4:26:05 GMT -5
Ouchy,
Do you restrict any of the usual bad foods for endo with your diet- like wheat, soy, dairy and red meat, or do you just follow the insulin resistance diet.
Do you suffer from bowel issues too, or is it more the endo pains and fertility- that I read you said were helped greatly by the insulin resistance diet?
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Post by ouchy on Feb 24, 2009 0:24:04 GMT -5
Hello, and welcome. I only limit dairy and red meat right before my period. Other than that, just IR diet. I do suffer from bowel issues and have had intestinal endo removed twice and my appendix resected from my cecum from endo. The IR diet was to help with fertility issues but completely resolved my endo pains. I just need to get back on the bandwagon now.
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Post by kkay46 on Mar 30, 2009 19:31:46 GMT -5
I have a severe case as well. I was diagnosed with upper G.I. problems in August and changed my diet then. I was diagnosed in Jan 2009 with endo (or thought to have) and to this day I am having pain and discomfort still. So, as far as the diet change goes, that's a must but it doesn't solve the problem. I was told by my gyn that I could have a laporoscopy, which he didnt recommend for my age and to save my ovaries and uterus, or lupron injection. I had the same issue with the expenses and was not told the price of the injection when deciding my treatment. I chose Lupron and began treatment in Feb. I had problems with insurance not paying for the injection the second month and they refused to pay. I ended up paying it myself. I have had two shots so far. In my case, not enough to notice any change. I do get headaches, night sweats, mood swings and hotflashes but, if you are considering lupron instead of surgery you have to understand that you will probaly get all those symptoms and it's going to be hard. I have been getting headaches and frequent pain/aches/sensitive when moving my eyes and recently had to get eyeglasses. Possible it could be from Lupron but not certain. Tommorrow I go to the GYN to discuss it and consider surgery so insurance will cover for my injections. Unless diagnosed they will not cover the Lupron. If I have a laporoscopy I will still have to be on lupron for the rest of my life. Hope this is helpful!!
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abornich
Full Member
Jesus Loves You
Posts: 154
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Post by abornich on Mar 31, 2009 14:33:50 GMT -5
now I'm worried. I have been on lo ovral (or cryselle the generic) of birth control pills for over a year. Just today I decided to call and ask for a different kind that would not give me as much acne, and other side effects. She gives me Ortho Tri-Cyclen Lo. So now I'm wondering if that will even be enough to help with the endo. The only reason I'm staying on birth control is due to the endo.! Has anyone used this for endo. before? I know my doctor really wants me to get the depo provera shot, but I'm still scared about getting that! Help!
Also, I'm on these pills continously, and now I don't know whether I should just switch from my old pack to the new kind just like that or not? I don't need to have another period yet, as I just had one 2 weeks ago, and I try to put at least 2 months between them in order to keep the endo. away. I guess I should call the doc back to ask that question but what does everyone think?
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Post by ouchy on Mar 31, 2009 15:22:25 GMT -5
If I have a laporoscopy I will still have to be on lupron for the rest of my life. Hope this is helpful!! Honestly, and not trying to be rude, I hope no one finds your post helpful. It is full of misinformation. Any doctor who would allow someone to be on lupron (without even knowing if you have endo, I might add!), in my opinion, should be barred from even practicing medicine...let alone being on it "for the rest of your life!" I dont' even think a doctor exists who would proscribe it to someone indefinitely!!!!!!!
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Post by ouchy on Mar 31, 2009 15:25:23 GMT -5
now I'm worried. I have been on lo ovral (or cryselle the generic) of birth control pills for over a year. Just today I decided to call and ask for a different kind that would not give me as much acne, and other side effects. She gives me Ortho Tri-Cyclen Lo. So now I'm wondering if that will even be enough to help with the endo. The only reason I'm staying on birth control is due to the endo.! Has anyone used this for endo. before? I know my doctor really wants me to get the depo provera shot, but I'm still scared about getting that! Help! Also, I'm on these pills continously, and now I don't know whether I should just switch from my old pack to the new kind just like that or not? I don't need to have another period yet, as I just had one 2 weeks ago, and I try to put at least 2 months between them in order to keep the endo. away. I guess I should call the doc back to ask that question but what does everyone think? First, Lo/Ovral and Ortho Tri-Cyclen Lo are two different types of b.c.==both the progestin (I think), and just in general. Lo/Ovral is a monophasic pill (same estrogen content in each pill), and the other is a phasic pill--three different estrogen amounts in different phases. Big difference between the pill, but you'll likely have way less side-effects w/ the phasic pill. I have read that endo shouldn't be treated with a cyclic pill, but then again, who knows what's what anymore! I had less pain with phasic pills than monophasics. (And don't let the post before yours scare you.) And I also don't know a single person who has liked the shot. The side effects are hell.
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Post by Karen on Mar 31, 2009 17:22:58 GMT -5
abornich - I tried about 5 different pills before I found one that had tolerable side effects (that was Nuvaring for me) - and that was even BEFORE I found out I had endo! Thinking Mirena might be better for endo, I switched and now I'm wondering if that was a good idea...
Point is - everyone's body reacts quite differently to BC, both with side effects and relief of endo. It's the 'ol try and see... Fun, eh?
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Post by kkay46 on Mar 31, 2009 19:29:18 GMT -5
ouchy, I don't understand how my message was misinforming. I was just letting everyone know what was goin on in "my case." I never said to go on Lupron without being diagnosed... this is just my case. In "my case" we were trying to aviod surgery because of everything else going on but, I will be getting a laporoscopy this month as well as seeing a rheumatologist for other ongoing troubles. Because I was not trying to have a baby, surgery was not on the top of "my" list.... Lupron isn't fun but, Birth Control wasnt working out for me, I have chronic pain, and can barely keep my head up. I am not trying to be rude either but, what am I suppose to do?
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Post by ouchy on Mar 31, 2009 19:49:21 GMT -5
Kkay46, it is a moderator's job to keep the board running in an orderly fashion and to dispel myths given to other members as "helpful info," however well-intended it might be.
Misinforming in that you are already trying to identify people who have confirmed severe cases. You consider yourself to "I have a severe case as well." You may. You may only have mild endo. You don't know. The info by your doctor is also misleading, so I hope it is not helpful to other women, when it actually might cause them harm and potentially even death, in the case of bowel obstruction.
The whole "If I have a laporoscopy I will still have to be on lupron for the rest of my life. Hope this is helpful!!" Is not helpful! That is extremely dangerous!
As a moderator here at Endo Resolved, it is my responsibility to dispel "helpful" misnformation such as you have spouted throughout the various forums. As you read more and more about endo, you will find just how erroneous this "helpful" info you are disseminating really is!
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Post by cass on Mar 31, 2009 21:00:13 GMT -5
I 100% agree with Ouchy's post. How can you be put on a harsh treatment for something you "might" have? I am totally gob smacked.
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abornich
Full Member
Jesus Loves You
Posts: 154
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Post by abornich on Mar 31, 2009 22:09:13 GMT -5
thanks for the helpful answers to my questions. I did talk to my doc's nurse again, and I will be taking just a 3 day break before starting the new ortho tri-cyclen lo pills. I sure hope these will do just as good of a job for my endo as Cryselle did, without all the side effects (or at least some of them). I just wish it didn't take months to find out if it would work :-) Thanks to everyone for the help though!
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