Ghost/Anyone..Lupron depot shots for severe endo

[turtle0619]

Hi ghost,
I was just wondering if you or anyone else has any info/thoughts about my situation.
I have been doing a ton of research online, and I have read that a lot of woman with severe endo like myself (stage 4) are missing something called a beta-3 integrin. Do you know what this is exactly?
I have also read that taking lupron depot shots for 3 months will keep the endo at bay, and make it easier to get pregnant.
As you can see from my signature I have been though a lot, and am still coming up empty handed. I am at a loss as to what to try next (I have 4 frosties left). I am really hesitant to jump into another cycle without something new to try.
Any advice/information would be great!
Thank you so much!

[Sunshine1576]

Frannie,
When I called Blue Cross Blue Shield today they told me Lupron is medically covered if I was using it for endometriosis. They needed a medical diagnosis code from the doctor but I told them we are using Lupron for IVF. So with that said it has been scientifically proven Lupron is used for Breast Cancer, fibriods and endo. It certainly would make you think if we can clear up endometriosis your chances for a pregnancy would be greater but I'm interested in hearing what your doctor has to say.

[Lauren319]

Franny!! Hi!!

On a hunch my re tested me and I lacked beta 3 as well. The biopsy was super uncomfortable but by now
I'm sure you're used to uncomfortablity. I did Lupron depot for 2 months before the transfer and I'm now preggo after 6 cycles. I say do it!!

[turtle0619]

I know I need to talk to my RE, but I want to have some kind of plan in my head before I do. I feel like at this point my RE basically just does what I ask for because they have no clue what to do with me, and if I'm going to make up my own protocol and throw more money at them, then why would they say no?

Lauren I can't believe how pregnant you are!! Congrats mama!! So did you do an FET? Was it right after coming off the LD? What were the side effects like? I'm scared of the LD side effects! If you don't mind, can you give me a run down on your protocol?

Has anyone see ghost??

[Sunshine1576]

Haven't seen or heard from Ghost in quite some time, but we wish you the best of luck with your next steps Franny.

[turtle0619]

Thank you sunshine!! And good luck to you. When do you start your Oct. cycle?

I think I'm going to call and make my FU appointment with my RE next week, and see how many months I should do the depot lupron for...that will at least let me figure out how long it will be until I cycle again, and I can plan when to start taking it. Ya know what I'm saying?? If I start the LD in October and it's only 2 months then I'd have to cycle right after and that would be December, and I don't want to cycle during the holidays and new years. So depending on how many months I'll be taking the LD for would determine when I would start it.

Oh and I haven't even talked to DH about any of this. We haven't talked about IVF stuff since June. I think about it everyday, and I tell DH that I cry all the time when I think about things. I think he is scared to bring it up to me, and is waiting for me to say I'm ready to try again. The only problem is I don't think I am ready, but really what other choice do I have? I mean it can only get better, or stay the same, and I'm getting old, so I might as well try again right??

[Sunshine1576]

Franny- I hear what you're saying at some point if we don't pick up the pieces and try again we'll stay heartbroken. Time can only heal but that time also makes us stronger and ready to move forward. Holidays are a difficult time to cycle but it's a personal preference. We're looking to start everything in two weeks just before the holidays really get here. I pressed my clinic to get my bloodwork approved with the Attain program for October, otherwise it would have been January before we could cycle since I have blackout periods with my retail work schedule. But here's the thing I dread going through another Christmas with it being just dh and me. Every year that we've been living down here I've thrown a Christmas party just so we don't feel overly depressed. Something about being around people is always good. We haven't had any treatment in a year because of dh's job situation so finding a way just to afford IVF was our biggest challenge. We paid off dh's truck last summer and reapplyed in August, paying off the truck is what really helped us get the loan we really needed approved. Anyway sorry I tend to ramble but I really believe our paths will be crossing in cycling soon, like I said before it's only a matter of time. So talk to dh to see where this may lead the two of you.

[to_have_fun08]

Franny - I wish you the best of luck.. Have your appointment see what the DR. thinks.. did you see my link on the other page. Maybe the heprin can help out too. throw everything at it. I think you will never have closure or be able to move on as long as you have those 4.. so get those done, hopefully one is a sticky one or even two.. get out of limbo. I know it isn't easy. Just have to keep fighting.

[kynlee]

Franny- I dont know anything on the Lupron and Endo but it doesnt hurt to throw it at the Dr see what he says, Sometimes making our own plans makes all the difference Wishing you much luck on your upcoming cycle Maybe you should repost this on the pregnant after treatment so that women that are already pregant can see this post quicker and maybe someone has gone threw this too Will say tons of prayers for your BFP

[blueeyedreamer]

Lupron is a well known medical management treatment for endo. That said, it will not clear up any endo. It will suppress hormones to suppress symptoms and ideally help keep new endo from forming. I have friends who have done long lupron for ivf and it didn't work, but has worked for others.

Have you had your endo removed through excision? Do you have a lot of active symptoms? I have stage 4 endo and had extensive robot assisted excision surgery with an endo specialist. My endo had completely obliterated my pelvis. There are a lot of resources both good and bad so be careful with where you get your advice. Www.endocenter.org has wonderful info. We have some on our local website www.seattleendo.org.

Nicole
President, Endometriosis Research Center of Seattle

[turtle0619]

Thank you everyone for your responses and support! I have so much love for all of you amazing woman!!

Nicole- Thank you for the links. I will totally check them out. I only had a lap done when I was diagnosed with stage 4 endo. I was told I had 3 options if I wanted children (which is why I ended up having the lap done in the first place..because I wasn't getting pregnant.)
Option 1- I could have full on surgery and have as much of the endo removed as possible, and then start 6 months of lupron depot to keep it from coming back, and then ttc naturally. This option did not work for me at the time because I couldn't take that much time off from work to have the surgery.
Option 2- Skip surgery and go right into IVF- again at the time I thought that this would be hard, but was also told that I would most likely get pregnant by the 2nd try...5 years later...not so much.
Option 3- adopt.

Although I can't get pregnant no matter what I try...I really don't have to many symptoms from my endo. I think I may have worse cramps from the average woman, but it's all I've even known, so it doesn't bother me. I get some pains when I ovulate, and I have really huge clots when AF comes, but I never thought it was abnormal. If I never wanted to have children I would've never known about my endo.

That being said, I wouldn't be using the lupron depot to "cure" my endo, but I have read studies that say taking LD for a few months, and then going right into an FET cycle helps woman with endo who have had multiple failed cycles because a lot of woman with endo are missing something called Beta-3 integrin, that is believed to kill the embryos before they have a chance to implant.
Again, I just found this info from googling, and I am looking for anyone who tried this with success.

Chris- I did see your link! Thank you! I don't see why I wouldn't try the heprin too, along with the intralipids again too. I still haven't talked to DH or RE, but I'm trying to get a plan together, and like you said "throw everything at this try" and that's including the darn kitchen sink too!!!

Seriously, where is ghost??

[blueeyedreamer]

Franny- yes, I have heard of the beta integrin issue, but haven't been tested. I can't use lupron because of my MS. I know that most women who use it for endo either have a love or hate relationship with it. I have a friend hat like you wouldn't have thought she had endo until she had infertility. The testing for infertility thru ultrasound found the abnormal structure which led to the lap....

I wish you the best! There is a large endo community out there on the ERC boards and on Facebook.

[turtle0619]

Just bumping this up. Maybe ghost will see it!

[Ghost]

Sorry. I have not been around as much as before.

Also sorry that I just don't know much about endometriosis or how it relates to beta 3 integrin.

[Lindsay3702]

I was diagnosed with stage 4 endometriosis when I was 19 years old. My obgyn went in to remove a cyst and found my insides covered with scar tissue and adhesions. I went on zoladex for 6 months (very similar to lupron) and it was aweful. The side effects were terrible and i was a freshman in college living in a dorm. Imagine going through menopause on hyperspeed. I was told that the zoladex was a hormone induced menopause that would kill off any remaining emdometriosis cells not removed from surgery. I was told that it shuts down all production of estrogen, but you can ask your doctor for estrogen supplements to help with the side effects. I was told that it shouldn't affect my chances of getting pregnant, but here i am 5 years later about to begin my first round of IVF.