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All Endo, PCOS, Adeno, Hysto's, Pelvic Pain this is the link to our new Exchange. It will take some time to get everything re-entered...but WELCOME ALL!!!
Endo survivor..
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ilovepita posted:
Hi Its been 1yr 5 month since I went thru a laparoscopy had my left ovary removed.Discovering that I had endo explained all my pain that I had been dealing with all this years..since i started my period.Horrible periods.After my surgery i still feel pain when Im getting my period, pelvic pain, sensitive with intercouse.I just went for my annual test Dr send me to get ultrasound and get blood work done to see how is it going.But she say that endo is like that and Ive read about it. For years Ive been taking BC pills but three months ago i decided to stop too see if it made difference, im gaining weight, i feel depressed.But new dr is recommending me to take Lupra shots or Yasmin?so what do you girls think about this meds?Do they work?side effects? I really dont chat online but i think its a good way to get some support from women that are dealing with this condition.
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deal14 responded:
Lupron shots are the devil... seriously its just toxic, in my opinion I would NEVER go on them again, when I did it was when many people didnt seem to know much about it. Now that there are FDA investigations and so many women ending up with worse issues than just the endo pain after taking it I dont think its worth it or a smart idea overall. As for continous BCP's I went off of mine for 5months or so to see if it was helping me or harming me since I had been on them for years... well it helps with endo pain. Since you have endo its best to keep the horomones at a minimum, so it doesnt spread to other areas(IE: bowel,etc.). I would go on bcp's compared to being on that shot anyday, birthcontrol side effects end up going away if you need to go off of them or something but the Lupron shots stay with you for MUCH longer than they tell you and some side effects are even permanant.
 
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hopeful2218 responded:
Pita?!?!?!? Aren't you from the old board??? That pita was a talker...and great to our group...but incase I am mistaken, welcome to the board. we would be more than happy to help you.

First, I am sorry for all of your issues. Second, she is recommending Lupron shots. I am currently on Lupron as well as Sadie, she will eventually come and introduce herself as well. But Lupron is a form of chemotherapy..almost 90% of doctors do NOT tell you this part. I did 5 months last year, and it did help me tremendously. (sorry I suck at spelling) But I did have bad side effects after stopping the injections. I had worst hot flashes then when I was on lupron, and some other issues, which I don't know for sure I can point my finger at lupron for. Also note, that when I stopped my lupron I went straight back on Seasonale (quasense) and continued to suppress all periods. I haven't had a real period in about mmm...6 years.

Here are some of the most common side effects. 1. you will have what we call 2 month hell. What lupron does is it puts you into psuedo menopause. To get to this point, the medication (an injection into your ass muscle) sends a surge of hormones (estrogen) throughout your body. This will cause a very very heavy difficult and painful period. It will probably last much longer than most of your periods. Next you will experience insomnia..that you (well I) couln't even get 2 full strength ambien to make me sleepy. I normally have insomnia for 3 straight days every month from my Lupron. Then you may experience what we call the "weird or unreal side effect" the best way to explain it is you flip in and out of reality...you can be sitting there and all of a sudden you are laughing and having a good time, then you will sob uncontrolably, (commercials or anything can trigger this) then all of a sudden you flip back to feeling normal..but feel like you can't tell what is real or not. Now this is probably, to me, the worst part of lupron. It only happens on occassion..and I've only had it happen to me at home usually later in the evening. But if you can tell yourself it's the Lupron NOT me..you can kind of control it.

Now I am just going to list the daily issues after you get past 2month hell. Hot flashes (and I mean hot flashes), insomnia, hair loss, short term memory loss, mood swings. (Most people and/or their doctors will then say they are depressed and take an anti depressant....this should NOT be done..you should actually take a mood stablizer.Becuase this is the real problem..you can not control your moods, not because you are looney..but because of Lupron). Joint pain is seen in a high number of Lupron patients. bone density loss, vaginal dryness, lack of libito. I on the other hand was hornier than ever (by the way, we don't have any taboo subjects in here..we are a family and share everything..so I hope you don't think I'm just a pig LOL)

Now, even after I listed all those side effects to me, the result of clearer skin, no pelvic pain, and weight loss outweighed my side effects. BUT I also was on addback therapy since day one.

If your doctor does not talk about addback or tell you that you must take addback...RUN. Find another doctor.

If you doctor does not send you from from your first injection with a good strength pain reliever and most include some valiums to take for muscle spazms RUN - refills should not be an issue for the first 2 months.

If your doctor does say to you "Lupron is now your pain reliever" RUN.

If your doctor wants to administer a 3 months shot RUN. Do not EVER take the 3 month shot. It takes much longer to get out of your system and it is not properly gauged on the doseage, a 1 month shot should be your only option.

Also, Yaz has a big class action law suit going on right now. A lot of women do not respond well to Yaz. Also on the right hand side of the screen, we had an annoucement that showed Yaz has NO effect on the pain or symptoms of Endo.

Cont'd next
me, 28 dx'ed with endo in 09 via lap. Administrator to this board.
 
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hopeful2218 replied to deal14's response:
OK deal, you know I respect you and I def respect your opinions, but this isn't a; the shot is the devil and do this kind of question. I also will be posting another article that I thought you would enjoy...not yelling at you...I want everyone to share their opinons and thoughts but please elaborate about the pro's and con's ... your personal experience. Please don't take this to heart...I incourage your posts..but like I said, please don't scare the sh!it out of people.
me, 28 dx'ed with endo in 09 via lap. Administrator to this board.
 
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Angie22PR replied to hopeful2218's response:
Hi Pita and ladies:

As we always say here every girl is different and every endo girl is definitely different. Amanda pointed out her experience and so did Deal. Amanda give you all the 411 and she is very good at that. I want to also share my side... and I know you might think this is just confusing, but it what this blog is about, we share our misseries about this Fing condition and
try to help each other to make the best decisions.

She I have been dealing with Endo for more than 13 years and I hate every single minute of it... but I try to enjoy my life as much as I can. Anyways, I am in my 3rd time with Lupron. The first one was hell, I had headaches, mood swings, insomnia, night sweats, hot flashes, abdominal pain... EVERYTHING, but when I was done, after 6 months of treatments I felt almost normal for 2 years. That's why I went for my 2nd and now my 3rd time. I am just finishing my
3rd month on Lupron (got 6 more months to go). For me the 2nd and 3rd time... ADD BACK THERAPY was the solution.
This time around, I know I am gaining weight, I am having some night sweats but that is it. Nothing else, and for me honestly is the only thing (that and surgery) that keeps my pain away.

Yaz or Jasmin in the other hand, I used them for 4 months and they did NOTHING for me. The hormones were too low of a level to help me. Plus, I was diagnosed with gallstones a couple of months later. My docs think it was because of the Yaz (and that is the why of some of the lawsuits Amanda mention) but my docs and I have no way to 100% prove (spelling) it was because of that.

So see... we are all differents... for some BCs are the answer, for me I know Lupron is best (for know... because I am seriously thinking I wont do any more round of them).
In the long run.. who knows.... my 1st Lupron shot was 8 years ago and besides the weight gain and some hair lost (which one can also argue is because I do not have a healthy eating habit and way too long hair) I havent seen a difference.

Hope this do not confuse you more... you just have to make your own research, read this stories and get to your own conclusions... and know that either way we wont JUDGE YOU. We will always be here to support you and get your throught it.

Peace and Health,
Angie
 
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deal14 replied to hopeful2218's response:
Not to be a jerk because thats fine what you said Amanda, I just cant stand it some days. The fact that so many women are doing hysterectomies or Lupron, Im sorry but my belief is that Lupron is a huge cause of lots of my issues because they were non-existant until after Lupron. Sometimes I feel like I NEED to scare the crap out of people so they can get it through their heads... otherwise in 6-12 months down the road they come back and say Oh well no one told me this or that... ya know what I mean? Ive encountered that so many times. I know we all make our own decisions but as I have said in the past, if someone would have yelled at me or even scared me straight with all the things I have experienced(now) I would not have gone on it for fear at the very least.
 
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martiesgurl responded:
Sorry to meet you under these circumstances but happy to have you hear searching for more info. It's exactly what lead me to this board last year and this board has helped me in so many ways. I am the one that Amanda referred to, the other one on Lupron. Right now I am in the middle of my 3rd month and this is the month where I decide if I continue. If the cysts and tumor are still there, no more Lupron cuz it's not helping. The only good thing so far it's done, is take away my appetite. I've lost almost 40 pounds in these 3 months. So I am thankful for that! Other than that, hot flashes, mood swings like nobody's business!, aches all over my body, hair loss (quite a bit), my boobs have shrunk a cup size (between loosing weight and the lack of estrogen in my body), and still having pelvic pain.

No one on here can tell you what decision to make, we can only share our stories and let you take the info and do what you want with it. I researched and researched til I was blue in the face and I found scary stories about Lupron that almost scared me off (remember Amanda? lol) But in the end, my decision was made with the hope that I can put off a hysto for another year or maybe even longer. I will eventually need one but it's not something I'm ready for just yet. So it's a medical decision but also a very personal one that needs to be made deep inside yourself.

I hope you continue on this board and keep us posted as to what you decide. Best of luck!

Sadie
 
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brandib01 replied to martiesgurl's response:
deal. i know you and amanda go way back and i know she was just trying to avoid scaring people. everyone is allowed as she said to state their story and tell their opinion but we uphold the fact that we will support everyone one way or another. no one is scaring her into thinking she will be in excrutiating pain without it so i think we just want to make sure she has all the details to make an informed decision. everyone knows i am not confrontational nor am i trying to be i just want anyone who comes on here to feel comfortable. we do not want them to think this is a biast board.

with that said i have not been on lupron. i have only done trials with multiple bcp's i am very sensitive to hormones and have to be on the lowest level birth control which as some say aren't as helpful but they do help me. my periods were much more tolerable. i did not have to lay in bed for the first 3 days of my cycle. i still had my moments of the random sharp pains but they were less frequent. the last one i was on lestrin fe for me was great i still had pains as i said but i also have an endometrioma tumor on my right ovary so some pain is inevitable but my cycle was great. but as soon as i got off it was rigyht back to business as usual.
woo hoo sigs..I am brandi 27 TTC1 dx'ed.infertile06'w/male factor also-lap1 09'endo stageIV/PCOS/2-m/c08'09'myloves hormone deficient 3rd round of 7 on clomid~~co admin to the bossy one..lol.
 
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brandib01 replied to brandib01's response:
also this is from amanda i will explain in roll call but she wanted me to post it for her.


Lupron has been under time lime light for over 10 years. I personally believe that when lupron is administered from a doctor who does not specialize in the treatment of Endo, that this increases your chances of having a bad experiece as well as possible long term side effects.

About 75% of the women who had long term side effects or an overall bad experience with Lupron did NOT receive the proper addback therapy, another big part of it is receiving the 3 month injection, the 3 month is just not as effective as the 1 month, as well as if you do not like it, it can take up to 6 months for the medication to fully leave your body.

When you are on Lupron, you should have, prior to administration. A full blood panel, including thyroid, and hormone levels. A DEXA screening (xrays to measure your bone desitity.) Also these tests should be redone every 3 months during and for 6 months to 1 year after discontinuing the treatment.

So overall, Lupron is NOT something to take lightly. It is a chemotherapy used in Men to treat Prostate Cancer. Deal is correct when she says it is hell, but most women find relieve after that 2 months of health. A good percentage of women do have a good improvement with Lupron when it is administered by a educated doctor who has spent the vast majority of his career to treating Endo, PCOS, Aden..etc.

Also, one area I used to help me with my choice of starting Lupron, was reading on WebMD, the user reviews of Lupron 3.75 IM. Here is the link..I do recommend reading them all...if you do google it, you'll really see some pro's and con's..but I prefer the user reviews because they are real people and it gives you the most info in one spot. http://www.webmd.com/drugs/mono-5137-LEUPROLIDE MONTHLY 375 MG - INJECTION.aspx?drugid=1591&drugname=Lupron Depot IM&source=2

Yaz, is one bcp (birthcontrol pill) that I do not know too much about. I only know about the class action lawsuit and the article (I believe was from FDA, but I could be mistaken). Perhaps some of the other girls can post if they have taken yaz.

If you have any other questions, or help finding a doctor you can click on my screen name and my email is listed.

I would also like to say, that these are my personal expereinces/opinions, as well as research that I did and continue to do when I was deciding it this drug was right for me as well as helping inform others about all sides of Lupron.

In the beginning, I was SOOOO anti lupron, but after months (literally) of research and actually finding a doctor who specialized in Endo...and the user reviews really helped, I figured to give it a try. I had a good experience with the pain reduction. It also helps my IBS, and some other issues. But a lupron discussion is a hefty one...so please I hope you do ask questions and share your opinions as well. Also, you are more than welcome to continue to use us as a support system..sometimes it's great to be able to talk to unbiased people who are suffering with the same issues as you.

Our big motto in here is we all are different, and we all react and respond differently to medications/symptoms/and treatments.

I do hope that you will stick around and share your stories, or opinons..we like to think we are a big family here, so welcome!!!!!!

You are in my thoughts,
Amanda
woo hoo sigs..I am brandi 27 TTC1 dx'ed.infertile06'w/male factor also-lap1 09'endo stageIV/PCOS/2-m/c08'09'myloves hormone deficient 3rd round of 7 on clomid~~co admin to the bossy one..lol.
 
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ilovepita responded:
Good morning ladies and I want to thank all of you guys that responded to me.Oh and to hopeful2218 yes last year after my surgery i found this board about endo. But i stop going on website after they change the board,i found this board very supportive after my surgery and it help me find out info about endo. It support me and help me go thru my many symptoms after my laparoscopy.Last year May 09 i started having hotflashes,chills,no sleep,fatigue,hair loss,dry skin,n weight loss.Dr said it was normal after my surgery.He kept me on the same BCP Lutera that i had been taking before it all started.

Last year i was going thru a very difficult time emotionally and physically.My husband loss his father at end of year so we had to deal with family issues.And I was dealing with my endo.I have been diagnosed with bipolar depression since '05.I take meds for it so my moods go up and down every month around my period But its stable overall.But i also do talk therapy and it helped.So just reading the pro n cons about this Lupron it scares me because Im dealing with this symptoms already.So I really need to talk with Dr;s and get lots of info before i make a decision.
But the more input i get from women that are dealing with this same symptoms i dont feel alone and frustrated about this pain. Im having a hard time with my marrige and it has to do with the intimate part and beeing connected since I have a hard time enjoying it.
Thank you ladies and i glad to be back in the board.
 
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brandib01 replied to ilovepita's response:
well we are glad you joined us again. definately with pre exsisting symptoms i would discuss all options. you may want to try other bcp's before you give lupron any further thought. although we do have a couple of girls on here that are taking it we always suggest if you are considering it make it a last resort. bi polar is very difficult i have a niece who is diagnosed bi polar adhd and it is a hard thing to deal with so if you have it mostly under control good for you.

and as for the intimacy issues i would just have a sit down with your husband and let him know how you feel. men are as we know very driven by their ego's so a lack of intamacy tends to make them feel threatened or unwanted. i know it does not sound like much fun but try scheduling it in sometime. it will give you time to prepare yourself to be in the mood and allow for some anticipation on both your parts. maybe the build up will help you and allow him or you time to come up with ways to sweep eachother off your feet. people think that is strange but lack of drive is a big issue with this disease as well as pain during. i have had these issues too and my dh seems to be fine with the arrangement now it is not always scheduled but it builds to allow more spontanaeity sp?
woo hoo sigs..I am brandi 27 TTC1 dx'ed.infertile06'w/male factor also-lap1 09'endo stageIV/PCOS/2-m/c08'09'myloves hormone deficient 3rd round of 7 on clomid~~co admin to the bossy one..lol.
 
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deal14 replied to brandib01's response:
I dont know why people are acting like Amanda and I are fighting or anything, she explained her point of view, I agree with majority of it. theres no issue here.
 
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brandib01 replied to deal14's response:
no one is acting as if yall are fighting. i was simply stating my point of view only because as we have said before when typing it is often difficult to tell how the person is meaning it. i did not want you to take what i said as an attack or an argument.which is all i was saying about your post.that things can be taken out of context to people who are not regulars on this board that do no know our personalities and history
woo hoo sigs..I am brandi 27 TTC1 dx'ed.infertile06'w/male factor also-lap1 09'endo stageIV/PCOS/2-m/c08'09'myloves hormone deficient 3rd round of 7 on clomid~~co admin to the bossy one..lol.
 
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amiller2218 replied to deal14's response:
Deal, I had asked Brandi to post this. I was leaving and couln't log in, and I wanted you to see that I was posting all of the issues. Remember when we spoke in email and I said, yes please you are more than welcome to join.."just don't scare the sh!t out of people". Our job is NOT to pick a side and SCARE you out of it. That would make us as bad as the doctors. And that's what I am trying to avoid on this board. And like I was saying, I found an article that I thought you would find interesting, it talks about Multiple Disease Disorder. And quite honestly Deal, you can't say for sure that this is all caused by lupron...and I can't say it is not. It is a highly debated subject.

And those debates are fine, but we have to go into full detail if we are talking to someone unfamiliar with Lupron. If you would have elaborated into YOUR story..that would have been fine, but a short paragraph to try and "scare" someone is not how this board operates. You know that as well as I do.

We give as much info as possible and share our stories. I didn't hide any of the facts of endo. That statistics are real life stats on how these women do suffer long term. It DOES happen. BUT there are some who benefit from it...I think you understand where I am coming from and I believe you know deep down that you can provide so much more info than what you had provided. That's the info that helps..share your story, share statistics you find, hell email them to me and I'll make a whole resources section on Lupron...the good the bad and the ugly.

You know I believe in you, but we can't be like doctors, I just can't allow it. there is nothing that is impossible in this disease. If treated incorrectly I believe 100% that long term detrimental side effects can happen. That is why I push education and finding the right doctor for each girl.

Our motto...WE ALL ARE DIFFERENT AND RESPOND DIFFERENTLY TO TREATMENTS AND MEDICATIONS AND SYMPTOMS. Please remember that...I am so sorry for all of your issues, but you know I suffer from a good deal of what you do..but mine was dx'ed before lupron. So it's the age old saying,,, who came first the chicken or the egg????

I hope you don't take any of this personal. This is such a deep subject that's why 8000 characters are needed...there's sooo much to tell. Not just the bad.

**I don't know what's up with my account, it's not linking to my admin and hopeful2218 account**

Love to all you ladies, it's topics like this that should be discussed between us, and then we can make a resource for the girls to read, I truly believe writing a good bad and ugly resource for lupron is needed. Deal email me if you want to talk.

Love and painfree moments!!!
Amanda
 
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amiller2218 replied to amiller2218's response:
Deal, I just wanted to add. I know how hard day to day activites are for you now. And I wish I could take them all away from you. I truly hope that you see that I am trying to push you to say more. And I know how frustrating it can be to feel like your voice is not heard. I DO NOT want you to feel like your voice isn't heard.

I would love it if you and I could collaborate on a Lupron Resources, I only ask to show the pro's and con's and facts and OUR personal stories as well. You know that I used to stand right beside you and scream NO LUPRON. But you and I know that education and compassion are much better tools that we can use. We both have the pro and con to lupron. I just read this and I feel like you feel you are being attacked, I hope you do not think that...you have been there for me for a looong time love. We just have different approaches to how we tell our stories. I believe we can find a happy medium in here. We have to, I consider all of us sisters. And I know you remember pita. that's why I went so deep into the explaination...she's from our old board. We owe everyone the same treatment. Support, education, and sympathy.

But please know..I've had days were I just want to scream at the board, but I usually walk away then write my response..it allows me to not type something that is one sided. We have facts we can use, and our stories. I love ya deal, and I understand why you get so angered...you deal with things that most of us do not..and you don't want anyone to suffer like you. But can you agree that from my post, it would incourage further investigation? I wish you would have had someone there to share the good and bad before you took lupron...I truly do. I think you can tell I'm very emotional about this, and I was just going to side email you..but I want it posted on the board, that there is no bad blood, I understand, and I think you understand me. we can agree to disagree, I do love you (not in a stalker fashion LOL) but as an endo sister...because that's what we are. And I want you to feel safe here. that's my #1 objective.


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