Endo and fertility treatments

For those of you that have endo.. (or know someone that does)   I just had some questions.. I have been diagnosed with severe endo by lap about four months ago or so... they had to remove most of my left ovary (which isn't functioning since) due to an endometrioma.. we've been doing IUI's since then with femara, and now injectables.. We never supressed the endo with lupron or anything because from what i've read and the RE says its not proven that it helps with ttc...I have no pain with it.. so suppression for pain wasn't a concern..  However during my lap i did not have any adhesions and both of my tubes were open, but the dr wasn't able to "clean" much of it up except on that left ovary.. since it was mostly on my bowel, bladder and ureters... My question is , who had tried supression for fertitlily reasons and have you had any luck? what did you supress with? lupron??
   Has anyone tried letrazole(femara) for endo supression--- studies out there are showing great things.. but its not yet well researched for fertilty...
   we are most likely going to be doing IVF in a few months and we are debating if we want to supress-- lupron vs femara... also should i have another lap done by an endo specialist to "clean" up everything before IVF??

ANY advice, experience is GREATLY appreciated!!! thanks so much!

[Carrie526]

I too have endo and have used Lupron for suppression as well as had a lap to remove some. I was on Lupron for 6 mths and ended up pg with my son after completing that and having an HSG. My RE thinks that is what allowed us to get pg, because the endo had a chance to heal and the HSG cleared my tubes. I wish I had more time to describe in detail, but I am at work. I am happy to answer any more questions when I have a little more time! I wish you all the best. I am now on the fertility train again trying for our second. We lost one last April and have been ttc ever since. My RE suggests another lap and another HSG. We'll see! I am now on 9dpiui. I am crossing my fingers for you!

[bny807]

WOW! thanks so much for responding!!! How severe was your endo?? did they burn it off or cut it out the first time?? I had chromotubation (same thing as hsg, but during the lap) and both tubes were open..and no luck in the past 4 months- we have been aggressive with femara and IUI's if this one doesn't work we will do IVF.. just not sure about lupron vs femara and ? another lap.. hummmm... Your story gives me hope!!!!! Were the side effects bad on lupron?? Gosh I hate to waste more time!! Thanks! and I'm hoping this IUI works for you!!! : ) keep me updated!

[Carrie526]

My endo was low-medium in severity. They burned of some around the uterus and some off of one ovary. My symptoms prior to the lupron and lap were horrible. After the lap it got much better. The Lupron symptoms were pretty bad for awhile. The hot flashes were the worst part of it, and you can always just open a window. I always have sympathy for people going through menopause and no one believes me that I actually DO know what they are talking about! LOL! Lupron works; so if you think it may help you heal enough to then try again, I say go for it. The side effects are well worth it when you think of the possibilites after! I know waiting is the hard part, but the time will pass, andyour chance at IVF may be better!
The HSG showed no blockages, but we got pg two months after. They think maybe there was a little something that was pushed out of the way by the dye and it went unnoticed. I otherwise had no obvious causes of our infertilty. It took us a total of 2 and 1/2 years to concieve (conceive) our son. I am now on Femara (2 months) and have had good luck ovulation wise. I still have NO symptoms of endo (after having my son and the m/c), so we did a saline infused sonagram and it showed nothing but a healthy uterus! RE wants to do another lap if not pg in 4 months because he think it may do the trick. He is hoping I can skip that by continuing IUI. Here's hoping! I wish you all the best and let me know what you decide! I can always be your should when you want to complain about those hot flashes! : )

[bny807]

Thank you so much!!!! i REALLY appreciate it!!!! I"m defintely leaning towards doing lupron beforhand, even though there is no certainty that it can help, i've heard lots of people say it did help.. so if side effects are the only thing that can "hurt" then i can defintely stand that!    I have never had a symptom of endo!  and it was severe! its such a strange disease!!!!   Thats sooo wonderful about your son!!! I really hope that I can be a success story as well!! thank you so much, and I hope that you don't have to have another lap!!!! GOOD LUCK and keep me updated! : )

[bebe007]

Hi bny!  I was dianosed with stage 4 endo.  I never even had a symptom!  Crazy, I know.  SO we have been ttc for 2 years.  I had a lap done in Feb.  and this is my first IVF cycle.  I am goint to ER on Sunday.  I only have 2 follicles, but my dr. said one oveary bascially is shot, and the severity of the endo, if I cancel the cycle, I might not have any follciles next time or I may have more.

I trust him 100% and we are going for it.  I now there is still alot of things that can go wrong, but I came this far, I am going for it!  My RE said IUI would never work for me, so we never did that.

I was on Lupron only for about a week before changing to Gonal F and Menopur.  I was a poor responder so I did not do well woth the meds.  That is why I am going to complete this cycle.  Hopefully it works, but nothing every seems to go my way.

I hope things work for you.  I hate this stupied disease, too!  I think I am more mad at my OBGYN for never diagnosing me with it.  I am 35 and was his patient for 17 years.  He was always telling me, "Just relax, you are going to get pregnant...stop worrying so much"  or "take this clomid, you will DEFINATELY get pregnant."  What a creep.  He never once did an u/s on me.  My RE said I had this for years, maybe 10.

Thanks to this jerk of a doctor, I am on this roller coaster.

If anyone is from NJ, stay FAR away from Dr. Donato Russo on Morris Avenue in Union, NJ.

Good luck and I hope eveything works for you!!!