Discussions By Condition: Endometrial conditions

lupron?? endometriosis

Posted In: Endometrial conditions 49 Replies
  • Posted By: Anonymous
  • May 6, 2007
  • 10:32 PM

I've had 2 gyns with 2 strongly different opinions. One says to get a 2nd surgery for endometriosis (first surgery was 7 years ago). Other says NO, go on lupron. Anyone had either of these???? -2nd surgery or lupron?? My ultimate goal is to become preganant!

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  • Yes I have been anxiety lately, but no depression that I can recall. The good new is that I haven't gained any weight but lost 10 lbs. Also I have been getting a little facial hair, I hope that goes away. I would just do the monthly dosage and not the 3 month, I think the 3 month dosage is the worst so, I have heard. Mandi
    mandi 1 3 Replies
    • February 20, 2008
    • 06:29 PM
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  • Does any one have any information about Endo-Ex? Mandi
    mandi 1 3 Replies
    • February 20, 2008
    • 07:34 PM
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  • From my first period I had excrusiating pain and excessively long periods (2 weeks to 6 months of bleeding). I was diagnosed with endometriosis at age 21 when I had my first laproscopy after passing out from pain and blood loss. I went through 8 different kinds of birth control pills with no relief and lots of side effects. Had 2nd lap at 28 and was put on Lupron post op for 6 months. I only made it through 4 months before I stopped the treatment. I had every side effect listed and then some. I finally found relief under the care of an L.Ac. She has treated me with acupuncture, Chinese and Ayurvedic herbs. For the first time in my life I have a regular period with little or no pain. I take NO western pharmaceuticals. My experience is the western treatment is worse than the problem. Please do your homework, find a practitioner with experience with womens issues who will talk to you, not at you and ask LOTS of questions. Best of luck!
    Anonymous 42789 Replies Flag this Response
  • I just had my first shot last week... I am experiencing some bleeding... minor hot flashes... and briefs bouts of "almost wanting to cry for no reason". I've read all the previous posts, and I can now say that I am no longer confident about beating this disguting disease called Endometriosis... I can't believe how horrible this disease is, and how there is no cure or solid help.
    Anonymous 42789 Replies Flag this Response
  • From my first period I had excrusiating pain and excessively long periods (2 weeks to 6 months of bleeding). I was diagnosed with endometriosis at age 21 when I had my first laproscopy after passing out from pain and blood loss. I went through 8 different kinds of birth control pills with no relief and lots of side effects. Had 2nd lap at 28 and was put on Lupron post op for 6 months. I only made it through 4 months before I stopped the treatment. I had every side effect listed and then some. I finally found relief under the care of an L.Ac. She has treated me with acupuncture, Chinese and Ayurvedic herbs. For the first time in my life I have a regular period with little or no pain. I take NO western pharmaceuticals. My experience is the western treatment is worse than the problem. Please do your homework, find a practitioner with experience with womens issues who will talk to you, not at you and ask LOTS of questions. Best of luck! I am so glad you are having great results from acupuncture and herbs! :D Acupuncture works and is always most effective when combined with Chinese herbs. And yes, you have to shop around just like with a Western MD... Visit www.acufinder.com for information or also www.acupuncturetoday.com. Please if you have endo, try it! Best wishesDOM
    acuann 3080 Replies Flag this Response
  • I'm 25 and just stumbled across this site in my constant search to find something else to help me battle endo. I've had the lapro, done all the pills, now taking Lupron with a side of Zoloft to help with the side effects. It helps with the hot flashes and night sweats but has a whole slew of side effects of its own. It's so incredibly frustrating to not feel like yourself and to feel like no one else understands. I feel like everyone else thinks I'm just moping or pretending to be sick or something or like some drama queen. But I feel like this seriously sucks the life out of you. I feel tired all the time and am trying to change my diet and just be better about things but I can only do so much sometimes. It's so frustrating to not be able to hang out with my friends bc I get so tired or start hurting. But finding this site, seeing that I'm not alone and other people feel like this too...it helps sooo much. Yes, the sudden bursts of crying! I've never cried so much in my life. I'm not a girly girl so I usually DON'T cry for much of anything but I feel like it's all I do. I forget EVERYTHING. I even had to have a talk with my boss bc it's effecting my job. I feel like I'm at a loss with what to do to make it better. I just don't know what to do anymore. I want to have kids someday but we have a history of this in my family. All the women, cousins, aunts, mom, and sister, have had hysterectomys and I just wait for my turn. I thought catching it early and doing more about it would help but I feel like I'm just worse off sometimes. Anyway, needed to get all that out. Just wanted to say thanks for making me feel like there are other people who get it.
    Anonymous 42789 Replies Flag this Response
  • I'm 25 and just stumbled across this site in my constant search to find something else to help me battle endo. I've had the lapro, done all the pills, now taking Lupron with a side of Zoloft to help with the side effects. It helps with the hot flashes and night sweats but has a whole slew of side effects of its own. It's so incredibly frustrating to not feel like yourself and to feel like no one else understands. I feel like everyone else thinks I'm just moping or pretending to be sick or something or like some drama queen. But I feel like this seriously sucks the life out of you. I feel tired all the time and am trying to change my diet and just be better about things but I can only do so much sometimes. It's so frustrating to not be able to hang out with my friends bc I get so tired or start hurting. But finding this site, seeing that I'm not alone and other people feel like this too...it helps sooo much. Yes, the sudden bursts of crying! I've never cried so much in my life. I'm not a girly girl so I usually DON'T cry for much of anything but I feel like it's all I do. I forget EVERYTHING. I even had to have a talk with my boss bc it's effecting my job. I feel like I'm at a loss with what to do to make it better. I just don't know what to do anymore. I want to have kids someday but we have a history of this in my family. All the women, cousins, aunts, mom, and sister, have had hysterectomys and I just wait for my turn. I thought catching it early and doing more about it would help but I feel like I'm just worse off sometimes. Anyway, needed to get all that out. Just wanted to say thanks for making me feel like there are other people who get it. I know just how you feel, alone and like everyone thinks your exaggerating the pain, ect. It sucks. Hang in there I know its hard right now especialy being on meds your not used to, those alone will make you feel nutty! I still have not given in to my doctor and started the Lupron I read to many bad things about it,along with some good things...but it just scares me www.askapatient.com (type in lupron and read responses). If you have insurance you may want to try finding a naturopathic physician in your area, they work on finding the inbalance with vitamins, diet, ect. I am seeing one and she takes insurance. It may be worth a try. Im also on Zoloft, being sick with the endo and an undiagnostied strep infection led to arthritis and food allergies....so I was very axiety ridden from it all. Have you tried any of the add-back therapy for Lupron? Maybe that can help you right now also? let your doctor know if your symptoms are too much to handle from the Lupron, they can help you. I have been trying to get pregnant for 3-4 years now with no luck. But keep in mind the doctors no much more these days then they ever have. We have some hope. check out these websites also: http://www.endometriosiszone.org http://www.endometriosisassn.org There is also a product called Endo-Ex made by www.Nativeremides.comthat is supposed to help, I bought some but havent given it a good shot yet, they do have a 1 year money back gaurantee though, so why not try it. if anything it will let you know your not alone. ~Stacky
    stacky 52 Replies Flag this Response
  • Hi there! I have been on Lupron and I have had surgery. And this is all after having 3 kids. My problems seemed to start after, for which I am truely blessed. I started with an ovarian cyst that ruptured. I ended up in constant pain and when I ovulated I was doubling over. My doc suggested Lupron or surgery. I decided on the surgery based on the side effects. The surgery revealed that I had a massive adhesion btwn my ovary, tube, intestines and colon but no signs of Endo although that is what I am told I have. He separated it all, wrapped my ovary in a special mesh and sent me home. Within a week I had an infection and in another 5 weeks I was back in pain. We tried DepoProvera of which I got two weeks of relief. I also had a colonoscopy which came out clear to rule out that system. So my doc finally said that if the Lupron works then it's my ovary and if it doesn't then it is not. So with a lot of prayer I tried the Lupron for 6 months. It was the best decision I made. I had what I call mini hot flashes and nothing else but relief from the pain. When my six months was almost up the pain started to return so I told my doc to take the ovary out! That was about 3 years ago. I am now having similar problems with my right ovary. I just had a follow up ultrasound/transvaginal for a complex cyst on my right ovary and depending on the results will be whether I have a lap with my D&C in a couple of weeks. I really want to tell him to take it all out! Estrogen is my enemy! I pray and pray about changing my diet and there are really no excuses. I avoid milk and red meats treated with artificial hormones because I don't want my 6 year old daughter to start menstruating at the age of 10 like I did, and I just learned that I should avoid soy. Duh! What took me so long to figure that out. I am finishing up my first year of nurisng school which is stressful but still no excuse. I plan on making serious changes when this semester is over. So I would definitely suggest the surgery first, maybe your tubes are blocked, who knows. And I definitely recommend prayer! Without it I wouldn't have been able to make it through all this!
    Anonymous 42789 Replies Flag this Response
  • I have had 5 surgeries for endo, not counting the surgeries done to cut/sever nerves to end the pain from endo, and my RE thinks I can still get pregnant. Just because you have surgery doesn't mean you can't get pregnant, unless you have a hysterectomy, and they take out the uterus. Excising the tissue with surgery will give you immediate relief, plus the fact that you won't have to live through the hellish side effects of Lupron. On the other hand, taking Lupron means you won't have to go through another surgery. Personally I always opt for surgery because I always have so much tissue built up (shown on the CAT scans and ultrasounds) that I want it out of me so I can feel better quicker. Also, it gives the doc a chance to look around and see if there is anything else going on in your body that he/she couldn't otherwise detect without opening you up. (That's how they found out endo was growing on my appendix.) Anyway, I think it's a really personal choice...just don't let the pregnancy thing get to you too much. My RE tells me that when the time comes to get pregnant, he can go in and smooth my uterus back out (i.e., remove all the scar tissue) if necessary and I will be fine. But that's after 5 surgeries and one coming up...you will only have had 2. You should be fine. Feel better, and good luck becoming a mum! :)
    MURunnerJ 2 Replies Flag this Response
  • I cannot give any advice regarding Lupron and getting pg; however, I have a lot of experience with Lupron for endo. I am 32 y/o, and was diagnosed with endo at 18. I've had several laps and have just completed my 4th round of Lupron. The last two rounds of Lupron have been for 12 months at a time and at the 11.75 dose. The first two rounds of Lupron were at the lower 3.25 dose and for only 6 months. There are several side effects associated with this medicine. Many of them are nasty. However, the pain associated with my endo was worse. The first time I was on Lupron I did it without any add-back medications and it was ***l for me and everyone around me. The last three times I've been on Lupron I've taken a low dose of norethindrone acetate with the shot and it takes almost all the side effects away. The week after getting an injection is usually rough, but after that I'm good to go. I know Lupron doesn't work for everyone. However, my doc has had several of his patients call me who were afraid to take this medication and in the end it has worked for them all.I stopped my last round of Lupron early. I had received 3 of the 4 shots and decided not to get my last one since my husband and I are considering trying to get pg. That's what lead me to this site. For those of you trying to get pg and considering going on Lupron, I know that both of my tubes were 100% blocked prior to my 2nd round of Lupron and were completely open afterwards. That's the only personal experience I have to share as far as that goes.Good luck to all. Whatever decisions you make, make sure you are informed. Not just from your doctor. Talk to other doctors. Ask to speak with patients that have experienced the same thing you are going through.R.
    Anonymous 42789 Replies
    • August 19, 2009
    • 06:19 PM
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  • I have just been diagnosed with endo about a montha go when i had laproscopic surgery for 2 cysts, one on each ovary. After the doc went in he found endo. I have been in such pain for years now, its so ******n your life and relatioships, it's like you can function properly. I had surgery on my live about 2 years ago becuase i a had a tumor on my live from birth control, so now i am very limited on to whay i can be on. I currently have a IUD in, yes is helsp with my periods but not my endo. My cysts we benign, but there was some scarring on my ovaries and a little on my fallopian tubes. (scarring on the fallopian tubes makes it difficult to get pregnant) He gave me 2 options:To go on Lupron- which will put me in menopause for 4 months or so and then have me take a pill everyday with the shot to counter act with the Lupron, so my menopause won’t be as bad. I looked up Lupron and the side effects are horrible. OR. To go on the Depo shot, I said no right away because I already looked into that and it causes live tumors. I am so lost for words right now and feel like i have no where to turn but this message board. Reading everyones stories truly helps, i fear going on Lupron becuase of all the side effects and how it will be with my relationship with my bf, he hates that im in pain and crabby already becuase i fell like crap all the time. We are considering getting pregnant, not becuase it may help the pain but becuase i am very fearful if i wait longer, it will be more difficutly to get pregnant. Good luck to all of you with endo i am praying for you! : )~Kerri
    Anonymous 42789 Replies
    • September 30, 2009
    • 04:20 PM
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  • Hello,I am 28 years old and recently found out the devastating news that I have Endo. I was really upset and scared when I was told this. However this site is the first place that I have been able to identify with.I have not been able to get pregnant and this is the main reason. My tubes are blocked from Endo. My doctor gave me a shot of Lupron this month. This is my first week with the medication in my body and I have no experienced any side effects. I will continue to post entries about my condition and if this medicine works. I appreciate everyone story that I had the pleasure to read. Its lets you know, you’re not alone and gave very helpful information about the medicine and the disease. Let’s keep up the good work and keep our spirits high!!!!! God Bless.
    Anonymous 42789 Replies
    • January 19, 2010
    • 08:03 PM
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  • LUpron is amazing Ive been taking lupron for 2 years now and it has cused everything for me the only side affects i have our hot flashes and trust me its alot better then the pain of endometriosis...the lupron is the best thing that ever happened to me
    Anonymous 42789 Replies Flag this Response
  • that is my big concern is becoming pregnant! I am scheduled for a specialist in endometriosis (they are hard to find) in mid July to find out what is the best method. (I posted the original concern). I will keep you guys updated. So check back. Anyone else in this situation, please let us know what has worked for you.thanksJust wanted to let you know that I was diagnosised with endo at age 20 was told would never have kids. Went through 3 laperoscopies and 1 hysteroscopy and d&c. Also on lots of birth controls since 16 and a 6 month round of Lupron. In 2004 I became pregnant after all that. (A very big surprise!!!:)). So you can get pregnant afterwards. And after having my son I was relatively pain free for 2-3 years. But now going thru abnormal bleeding and pain. So good luck
    Anonymous 42789 Replies Flag this Response
  • I've had 2 gyns with 2 strongly different opinions. One says to get a 2nd surgery for endometriosis (first surgery was 7 years ago). Other says NO, go on lupron. Anyone had either of these???? -2nd surgery or lupron?? My ultimate goal is to become preganant!After my first son turned three I had my first surgery and was put on lupron. I had been hospitalized 3 times for 4-5 days at a time because of hemorrhagic ovarian cysts caused by my endometriosis since my son was born via c-section. Its been 11 months since the surgery and about 5 months since lupron and I found out Im pregnant with m second child. the idea of the surgery is to remove the excess scar tissue and the lupron suppresses the scar tissue from forming. I don't think either is a cure. I would research both as much as you can and make an informed decision. Good Luck.
    Anonymous 42789 Replies Flag this Response
  • I've had 2 gyns with 2 strongly different opinions. One says to get a 2nd surgery for endometriosis (first surgery was 7 years ago). Other says NO, go on lupron. Anyone had either of these???? -2nd surgery or lupron?? My ultimate goal is to become preganant!I had the surgery about a year ago and am now on lupron injections. The surgery only gave relief for about 4 months. I am on month 9 of lupron which has been absolutely wonderful! I started going to my gyn because of a women I knew that was told several time she would never have children and now has 4 after being treated by him. He went in and was able to burn off 70% of the endrometriosis and now the lupron keeps everything at a stand still. The hot flashes and insomnia can be annoying but they perscribed me a sleeping pill and I keep a fan at my desk and wear lighter clothes then I used to. The hot flashes decreased a ton in the first 3 shots and I feel better then ever! I haven't had this much energy since I was a child. I would suggest the lupron to anyone! I feel like I have my life back finally!
    Anonymous 42789 Replies Flag this Response
  • I am in tears as I write this; I was blessed with my first daughter at age 16, diagnost with endo at 19, surgery at 20, 6 months after surgery, blessed with becoming pregnant with my second daughter. I've done all the bithcontrols, but after my second daughter is when the endo seemed to get worse every month. Having been frustrated with alot of doctors (Military and civilian) I just tried to ignore the pain. The past year by far has been the absolute worst as far as the pain and bleeding. I finally gave in after bleeding for over 3 months straight, to talk to the doc about it. Now I need to mention, I am a Marine wife, and I was taking care of my father who was dying, along with being a mommy (which I am so thankfull to be).. So in between already stressful duties, I finally decided (after an e.r visit where they found cysts on my ovaries) that after moving to our new duty station where my husband was due to deploy, I figured I could just have the quick fix surgery. When I saw my new obgyn in march, he pretty much refused to do another surgery because he feels that the more laps you have the worse it gets..?!?! and so he really pushed lupron on me (which he wasn't the first doc to suggest) but because my husband was gone training, and also knowing he was going to deploy early summer, and my dad's health was more important than mine, I agreed and never got it filled. Even after expressing to him why I wanted the surgery for the quick fix because I had more important things to do than go thru these shots. My father died in my home April 27th, and even though he was "dying" it was unexpected. Words cannot describe that loss and how it has effected my health, and now my husband is deployed. Even seeing a physciatrist regularly, I cannot tollerate the pain at all. After explaining everything to the obgyn, and telling him why I didn't feel like lupron was a good idea because of me going thru all of it alone, he actually seemed offended and suggested I get a second opinion. I have no choice but to see the Naval docs, so after being sent immediatley for the "second" opinion, I actually sat and talked with her for over 4 hours about everything. She seemed to understand and made me feel comfortable. I am at a point of desperation where I started the lupron shot June 15th. And I couldn't have even imagined it being this bad. I've never been in so much pain, already mentally and emotionally exhausted and I honestly don't know how I can go thru another day of this. I've been calling my doc constantly, with no immediate concern from them, I have no family or friends out here and I have to take care of my daughters first still. I am 25 years old and initially wanted to have more children. But this is too hard, and I almost feel so hopeless. Someone please who has gone thru the lupron with really bad side effects with pain and everything, help me, tell me what I should do.. Due to having tricare, i cannot just switch docs, and I'm not getting anywhere with mine. I have expressed to them all how hard this is hitting me, my situation with just losing my father and my husband being deployed, taking care of a 3 and 8 year old, the house, the bills, everything by myself. And if getting someone to help me with all that was an easy option, it would've already been done. I'm in so much pain and haven't slept in days. Please give me some hope.
    Anonymous 42789 Replies Flag this Response
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    Anonymous 42789 Replies
    • August 15, 2010
    • 03:25 AM
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  • I did not start my periods until I was 17 and they were medically induced with pills. They then put me on birth control to control my cycle. I was diagnosed with PCOS a few years back after having irregular periods. When I did have a period it was hardly anything- light and no pain, cramps, etc. We were trying to get pregnant and having a hard time because of the PCOS. We tried for a year- did fertility meds for the last 3 months. The doctor told me I would not be able to get pregnant with the pills because of the way my ovaries were responding (they were getting overstimulated). She referred me to a IVF doc in Tampa but we were blessed with a miracle and found out the next month that I was pregnant- 7 days pregnant at the time she told me the pills weren't working. :) Had an awesome pregnancy but a difficult delivery- she was face down and I ripped badly. Ended up with an uterine infection 10 days afterwards and had to be on IV antibiotics so I had to stop breast feeding. The day our daughter turned 4 months old my husband told me he wanted a divorce. I have now been divorced since June 1. With everything that has been going on I felt that I was dealt a raw deal- and then September came and it just got worse. :( I started bleeding heavy and it didn't stop. I started having pain that felt like a ruptured ovarian cyst (had dealth with many before). I went to the ER and they blew me off. Went immediately to my GYN's office who sent me back to the hospital for a STAT ultrasound which didn't show anything spectacular. I went through the weekend feeling worse and worse and the pain just kept going up. I made an appointment to see the doc on Wednesday. She was afraid with my symptoms that my ovary was twisting around on the tube and strangulating itself. She did emergency surgery and expected to have to remove the ovary- she also did a D&C at the same time since I had been bleeding for a month straight. She did not find any problem with the ovary but did find bad endometriosis. She burned all of it off and the pain went away for about a week but then came back. I went back for my 2 week follow-up today and she explained to me my options. Birth control pills really aren't an option for control since I have been on them since I was 17 and they aren't controlling it. I can have surgery every 6-12 months with a 4 day recovery period after each one (and probably lose my job because of it). Or I can try Lupron. I am going to try it. I work in a cancer center and we use Lupron to treat our prostate and breast cancer patients. While there are side effects to the Lupron and it does essentially put you into medical menopause I beleive that the pros outweigh the cons. She explained the problem with endo like this: each time you have a period the endometriosis goes somewhere and causes a lesion. When that lesion breaks down it causes scar tissue. The more scar tissue you have the less likely you are to get pregnant. The Lupron decreases the estrogen in the body and you don't have a period. I would like to have another baby someday if I can meet Mr. Right. I spoke to a doctor I work with (who I have all the confidence in the world in and would see him as my doctor in a heartbeat) and he said there really isn't any other non-surgical option besides the Lupron since I have already tried multiple birth control without success. I will eventually have to have a hysterectomy because of the rate as to which the endo is growing (my GYN is pretty sure that it is already in the muscle of my abdomen) but we are going to try to wait as long as possible since I do want another child. I hate that we are all going through this but I am also glad that I am not alone.
    AmberLynnRN 6 Replies
    • October 6, 2010
    • 05:54 PM
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  • Endo runs in our family. If you can stand the pain and can get pregnant, that is your best bet of curing the problem. Otherwise you will need surgery after surgery until you have a hysterectomy.I went with a hysterectomy in 2005. However, my cousin took fertility shots to get pregnant. Lucky for her it did not take long once she began fertility treatments. After she had her son, she no longer had problems with endo. In fact, she had another son a few years later with no problem.If you want to get pregnant, you need to see a specialist and do it fast. The longer you wait the harder it will be to get pregnant.
    YvetteM 20 Replies
    • October 7, 2010
    • 10:52 PM
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