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Support for endometriosis sufferers
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| Viewing Page 1 of 1 (Total Posts: 7) |
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Joy
 Jan 18, 08 - 11:55 PM |
Lupron questions/ herbal supplements questions
So I had a consult with a RE/specialist today about my endometriosis. My ob/gyn had done a lap about two years and I was diagnosed with endo. Got pregnant three months later (I think a combo of surgery and acupuncture) and had my son. My endo pain is back, so my ob/gyn sent me to a specialist who has training in this area. He seemed anti-surgery and was pushing for Lupron. I don't know what to do. I have pain all month long, but worse right before and during my AF. Exhaustion ALL the freaking time. My quality of life has gone down hill immensely. For years I have been dealing with pain and have gone through MANY surgeries (gall bladder and exploratory abdominal) to figure out what the cause is. All my docs seem to think it has to do with my endo. Before I went to the appt. today I was very much against lupron. I am 30 (not old I know) but I want lots of kids and would love to be pregnant again. We haven't exactly been actively trying, but we also haven't been avoiding. The thought of 6 months of lurpon and no possibility of pregnancy scares me at first, but I also want to be the best mom I can be for my DS now. I definitely do not have the best quality of life due to endo now and want to give my son all that I can (energetic, rested, pain-free, narcotic-free mom). I know in the grand scheme of things, 6 months is nothing. But, researching and reading up on the side effects and symptoms scares me. I know every woman is different, but putting my body into menopause sounds weird to me. I do have more of an open mind since I first walked into his office, but still, I am not sure. What have your experiences been on the drug? Research you have found? The RE seemed to say that if the lupron doesn't take the pain away, then there is another explanation for the pain. But, I have been reading some books on endo and some women talk about lupron not only not helping the pain, but making it worse. But, it was still endo pain. I am worried that if the lupron doesn't work, then he will dismiss me as not an endo pain person and send me to a urologist/GI/some other MD. And thoughts or advice? I am sorry for the long post...I am just trying to make a decision and it is scary!! If you have taken herbal supplements, how do you know what to take and how much? I am just not at peace with Lupron, but want a better qaulity of life, like all of us...any suggestions? Thanks SO much, Joy |
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Robin H
Jan 19th, 2008 - 8:40 AM |
Re: Lupron questions/ herbal supplements questions
Joy, Lupron is a much debated medication. I suggest you search the forums - there have been many discussions regarding Lupron. There have also been discussions on supplements. I suggest that you look at the links on the home page for the endo diet and the progesterone cream. I understand how difficult it can be to just get through the day. I disagree with your doctor when you were told that if Lupron doesn't take away the pain then it must be something else. Lupron does not always get rid of the pain. Search the forums - there's a lot of information and discussion there. And most of all, pray for guidance. Robin H |
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Nettie
Jan 19th, 2008 - 9:08 AM |
Re: Lupron questions/ herbal supplements questions
Dear Joy, I am so sorry . It is good that you are reaserching and praying before any big decisions. I understand what it is like to want to give your children all of your energy and yet feel like your way past 30. I don't have all of the info or knowlendge on lupron as the other wemon do on this fourum. But I would continue to seek the Lord until you have a peace about what to do. I am sure like Robin said that you can find other past posts about what others have experienced through Lupron, but more importantly, Dose Lupron effect your endo in a negetave way? Check that out because I'm not sure. I will lift up a prayer for you today. That the Lord will give you wisdom as to what to do. May the Lord bless you today and may he be your strength. |
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Amber
Jan 19th, 2008 - 10:00 AM |
Re: Lupron questions/ herbal supplements questions
I can only tell you what I know . . . I have taken Lupron twice (for 6 mos each time). It did help with my endo pain while I was on the shots, but it came back as soon as I stopped them. They did not help to to conceive. (I had one son prior to Lupron). I had pretty annoying side effects while taking the Lupron . . . hot flashes and night sweats - mostly annoying, and they can give you some meds to help counteract them - clonodine I think - it is a bp med and helps them quite a bit. Then I also had bone pain which was attributed to the low levels of estrogen while on Lupron . . . supposed to go away after Lupron . . .it didn't go away, and I still have significant pain now - 3 years after my last Lupron shot (this side affect is obviously more than annoying as it hasn't gone away). And I had severe mood swings while on Lupron as well . . . my second time around they treated me with zoloft and that did help me - I didn't cry over a drop of spilt milk . . . I have now had excision surgery (in 2005) and conceived 6 weeks after and have a little girl now to go with my big boy. I have since found that Lupron is really at best a band-aid for endo, and excision surgery is the only way to get rid of it. (It does still have a 40% chance of returning even with the excision surgery.) The excision surgery removes all endo (not just the top layer) . . .and can definitely improve your fertility . . .of course, you know with endo there are now guarantees. I would suggest you get a second opinion from another doc if that is feasible with your insurance . . . And I would suggest searching other forums for more information as well. I can't tell you what to do . . . If I had it to do over I would not take Lupron. I pray that God will give you peace about the best decision for you. (If I can answer any questions - just ask). Amber |
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BookShe
Jan 19th, 2008 - 11:02 AM |
Re: Lupron questions/ herbal supplements questions
Hi Joy, Here is a good article on Lupron that is worth reading: http://www.associatedcontent.com/article/48852/what_your_doctor_doesnt_tell_you_aboutlupron.html It is written by the director of the Center for Endometriosis Care www.centerforendo.com. Some of us on this forum have had surgery there. The technique they use is the excision technique. At the time of my surgery, their recurrence rate was less than 20% -- I think it was around 18.something or other. That was a couple of years ago, so I don't know what it is now. They do track all of their patients and keep records on it, so you could email them and find out, if you're interested. Here's the bottom line on Lupron. Some women have very bad side effects from it that never go away, amd have long-term implications like fibromyalgia and osteoporosis. Some women just have the menopausal symptoms of hot flashes, weight gain, depression or mood swings, etc. and then when the Lupron wears off and their estrogen levels get back to normal, the side effects go away. The problem is, you don't know how it will affect you till you take it. And, it's only a temporary fix. So, I guess you have to decide if it's worth the risk. I have many postings on this forum over the last 3 years under "Sheila" or "BookShe". You might want to browse through them if you have time. I was on Lupron for 2 months. I wouldn't recommend it to anyone, unless you are a man with prostate cancer, and might die unless you take it. Sheila |
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Steph
Jan 19th, 2008 - 8:38 PM |
Re: Lupron questions/ herbal supplements questions
Hello Joy, I don't know much about Lupron other than what I have read. I use supplementation and lifestyle changes to try to manage my endo. It has been a work in progress but I feel better when I stick with my new "diet" and take my pills like a good girl. As far as knowing how much and what to supplement look for a naturopathic doctor near you. I got lucky in that I had a few friends seeing one before I was even diagnosed with endo, but I'm not sure how you would look for one. Perhaps the yellow pages? If not, try your local whole foods/organic grocer they will probably know of one in your area. Good luck and God bless, Steph |
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Becky
Jan 25th, 2008 - 10:38 PM |
Re: Lupron questions/ herbal supplements questions
Hi Joy, I've written about Lupron many times on this site, you should try to find some old posts for more info. I was on lupron for 9 months 3 years ago, it got rid of the pain for 6 months but i had terrible side effects. I gained 30 pounds, had acne, mood swings, bone pain, joint pain, dry eyes, hot flashes, night sweats, migranes, memory problems. i think there was even more that i'm missing. 3 years after the lupron i still have acne, bone pain, joint pain, dry eyes, hot flashes, night sweats, migranes, memory problems and i was diagnosed with osteopeania (the pre-curser to osteoperosis) at age 26! lupron helped my pain for 6 months, and it was NOT WORTH IT in my opinion. Everyone is different but I just suggest you do a lot of research before you decide. I also have pain all month long so I know how you feel. Are there other therapies that you haven't tried yet? accupuncture? herbs? endo diet? progesteron cream? continuous BCP's? Almost every doctor I've seen has pushed lupron or some other severe hormone therapy on me, i think they just don't know how else to help us. after lupron i don't think i'll ever go on another drastic hormone therapy like that again. you feel really old when your 25 dealing with menopause and 3 years later, still dealing with menopause side effects, i am beginning to think they will never go away and the doctors have not been very helpful about that. good luck. becky |
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