endometriosis, new lupron protocall

Question

Hi there,
I was diagnosed with endometriosis at age 24 via laproscopy. I had another lapro three years later at 27. I started trying to conceive at age 32 1/2 and have been trying to concieve for 3 years. (now I'm 35) I did four IUI and four ivf. I got pregnant once with ivf, but miscarried after 8 weeks when the baby stopped growing. We are thinking of trying one last ivf, but this time plan to use lupron for three months prior. in the past I did the lupron for 10-15 days before the injections. Have you heard of this therapy and know if it's will change things to try supressing for a longer time before stimulation? We are thinking that repeatedly doing ivf and using the stim drugs could have long term side affects and aren't sure how many times you should do this? The dr's tell us to keep going, but I don't know what to do. I feel like they are as lost as we are.

This discussion is related to Fallopian tubes/ endometriosis.

JennViv · Answer

You actually sound like you have REALLY good odds to become pregnant!! Especially having 2 working tubes and an ovary. I only have one ovary that is "free" from endo and 75% of one tube free...everything else is damaged.
If my doctor seems to think the femara/aygestin combo could help then I think it's a GREAT idea for you to ask your doctor!! Good luck and let us know what happens at the new RE appt!!

bny807 · Answer

Nelly: there are so many great advances in medicine for fertility and endo, so there is defintely reason to be hopeful! esp with a new more aggressive doctor, and the new meds out there today!  GOOD LUCK let us know how it goes at your appointment! Sending you tons of SSBD , luck and prayers! : )

nelly73 · Answer

Thank you both for your quick and informative responses, but most of all your support! I have never even heard of femara, but will be sure to ask my new doctor about it at my first appt.  (Did I mention I switched dr's after ivf #4?  So this is a new, more proactive physician.  My first doc wasn't concerned about my severe endo, because it can't been seen from a sono, only surgically).  BOth my tubes are free, but only one ovary works, the other was damaged from the endo. After my IUI's failed, I went on to ivf, but have yet to succeed.  I am not really hopeful any more, but you both shed some light and gave me a new sense of confidence.  Best to you both!

bny807 · Answer

JennViv:   Well it sounds like your in good hands, which is huge! : )   my RE says that even in bad cases of endo, with IVF that our chances should be similar to those with non endo patients! : )    we are just doing femara cd3-5 like clomid... most people tend to not produce as many follicles with femara as they do clomid though.. but we thought we'd give it a whirl! its my fiftth month on it (i did two just femara 2.5mg, then one with follistim, all IUI"s - we got preg on our third, but mc) so now on our second and last with femara + follistim.. before IVF..  i forget where i found all the studies, but i had just searched online and the results looked pretty amazing! So you defintely have to keep me updated! : )     i'm not sure about the aygestin, but from what i've read its progesterone.. which would prevent ovulation.. i did read that people can develop cysts when on femara for prolonged periods.. so i guess that prevents cysts from forming, since it would prevent ovulation??? just a speculation??  also make sure you take your calcium supplement + D since menopausal states can increase osteoporosis.. though for only three months shouldn't have any affect!    
    one thing i have been doing is wheat free diet (ugh for five or six months now!) studies show that people have more inflammation and pain when wheat is in their diets? who knows if it does a lick of good, but i'l try anything at this point, and its not too hard as long as you have a good grocery store around!     GOOD LUCK! keep me updated!!!

JennViv · Answer

bny807 - really?! i pray to God that it helps me. I cried for hours leaving the RE office friday when he started me on this. I am trusting my RE. He is REALLY well known in the area...even studied at strong memorial and has been around for years (my aunt used him almost 20 yrs ago). He's also working with a well known surgeon who works with endo removal. I asked the RE what my chances were if i did IVF and he said that my endo wasn't really in my uterus but behind and at the top...seems weird to me?! But it seems like IVF odds wouldn't be too bad  - but my insurance doesn't cover it so I don't know how to financially do that!
How long is your RE trying the femara for?? I was scared to use it b/c of the birth defect rate last year so i chose clomid (this was before i knew i had endo) and i'm kicking myself for not doing it right away!!! I have never heard of people using it for endo until now!! My insurance company was a little hesitant to approve it as well. Do you know anything about the Aygestin being used too?? I know that i react bad to BC pills (sick/bleeding) so maybe thats why??

nelly73 - I pray for you to get a bfp soon! I know many people who have been told they have endo and might not have kids but somehow by the power of God they have had one or more kids!! Maybe since you have tried the lupron you can ask about the femara? From what i've read on it...it seems to be a very recent use/study for it being used for endo! I think most of us agree, we would give our right arms to have that bfp so if this may help i'm willing to try it!!

bny807 · Answer

JennViv:    Thats very exciting that your doing that!   I have read the studies on the femara and hear its amazing! they actually went back in and did laps on people after three months and it was a HUGE improvement if not gone! we have been using femara 5mg for ovulation stimulation since it might suppress the endo super briefly while inducing super ovulation! GOOD LUCK with everything! keep me updated with how it goes! : )

JennViv · Answer

Hey,
I was just recently diagnosed with severe endo. I just figured i'd let you know what the doc's are doing for me. I have been placed on Femara 2.5 1x a day as well as Aygestin 1x a day. I am staying on this for 3 months. From what I understand there are alot of studies out there suggesting Femara reduces the swelling, etc. After the 3 months once I get my AF back, I will continue on Femara/iui for 3-4 months before moving on to IVF. The combination of drugs puts your body into a "menopausal" state. 
I'm praying for this to work because my endo has fused my bowel to my uterus and my left tube/ovary are completely ruined by the endo. I have 75% of my right tube that moves and my ovary is fine. So they are hoping it will increase my chances to conceive.

bny807 · Answer

Hello! i'm so sorry to hear about your troubles!! i too have endo ... severe and have been going through this fertitliy roller coaster for almost 2 years or so now.. as far as the lupron goes.. i researched this and some studies say that it does improve implantation rates to do it for three months before IVF in patients with endo.. they say that it can also help with beta integrins which are a type of protein (i think) in the uterus that help with implantation and in some patients, esp endo patients, they might lack this protein which makes it harder for implantation to occur... so a lot of these studies showed that after three months of endo suprression with lupro that the beta integrins were present in the previously lacking uterus... therefore had quite a significant increase in implatnation and successful pregnancy rates... there are a few studies showing that.. then there are also a few studies that show it makes no difference.. Our doctor seems pretty up to date on research and  he said that in anyone in any month that sometimes the beta integrins are present and sometimes they aren't so they don't seem to hold too much weight on those studies from what he said... that being said.. he said it can be worth a try though.. we are going to try IVF without initially, and then might try the supression if that doesn't work.. it is hard for it to hurt.. and so it might be worth a try?? unfortuantely there just arne't enough endo studies it seems :(      
   there are some specialists that i've looked into that do the incision surgery and have great rates at actually getting rid of the endo - the best being a guy up in NYC here is his website:  http://www.gynecosurgery.com/dr_kanayama.htm

Hope some of this helps! as far as using the drugs month after month.. they say it doesn't hurt... but i also worry about increased risk of cancers.. however someday as soon as i'm done with my reproductive organs (i have endo and pcos) i plan on getting a hyst so that won't be an issue.... GOOD LUCK keep us updated!