Those with DOR - a question...

ACM1616 · June 2010

After 3 failed IUI's, and more cancelled cycles than you can imagine, I was diagnosed with DOR last week. For those of you that have DOR, what are your treatment plans? Are you going to do IVF, or DE IVF? If you are doing IVF, what were your AF counts? What sort of chances did your RE give you?

STL34 · June 2010

Hi. I was recently diagnosed with DOR. I haven't done any treatments yet, but am planning to start IVF in September. My AFCs have been 11 and 12. My RE said I could expect to get between 6 and 8 eggs which should be fine. Because of my age (32) and my AFC counts, he thinks that I should have a normal chance of IVF working for me. I hope that helps. Good luck to you.

NYC1216 · June 2010

There are many girls on here who have DOR and have gotten pregnant with their own eggs. I think a lot depends on age. The younger you are the larger percentage that the eggs you have left will be normal. What is your AFC? FSH? AMH?

I would get to the best facility out there and see which protocol they recommend to get you the most amount of eggs.

Good Luck!

krissyh21 · June 2010

I found out about my DOR during an IVF cycle, I was on the long lupron protocol and it oversurpressed me to where I only got 5 eggs retrieved. My next cycle after the dx we did a antagonist cycle and I got over 2x the amount of eggs I did with my first IVF, 11. The quality was not very good on those eggs so I went to a clinic and a doctor who was more aware of treatment plans with DOR and we did a estrogen priming protocol. I didn't get a huge amount of eggs, but the quality on all the ones I did get were the best I had seen in all 3 cycles and quality of eggs over quantity is what you ultimately want. The result of that cycle is in my siggy!

I was given a 30-35% chance of the cycle working, that was also in part because of my age (37 at the time). With DE I was given a 50-60% chance of it working.

Good luck

hollymichael · June 2010

My treatment history is in my siggy. Although, we didn't really find out about DOR until my first IVF when I responded poorly. My initial testing had all come back normal. If this cycle doesn't work, we will move on to DE. I think your age makes a big difference. If you are younger, you are more likely to get good quality eggs, even if you don't get that many.

Temp848906437505510 · June 2010

We found out about my DOR after my first IVF, but we continued trying. IVF's #2 and 3 were downgraded to IUI/cancelled. I got pregnant on IVF #4, but, miscarried at 7 weeks. IVF #5 was BFN. I changed clinics, going to one of the best in the country and tried the estrogen priming protocol, widely thought of as the best protocol for DOR. I know it's worked for thousands of women, but, it was a disaster for me. IVF #6 was downgraded to IUI. IVF #7 was BFN. IVF #8, DE, resulted in my daughter.

My problem seemed to be that, in addition to DOR, my eggs sucked. I did my first IVF at 36 and my last, with my eggs, at 39. My chances, with my eggs, were low, but, getting pregnant on IVF #4 (we were already on the DE waitlist at this point, but kept trying) gave us hope and delayed us going the DE route.

I was given anywhere from a 60-80% chance with DE. It worked the first time.

ACM1616 · June 2010

Unfortunately, my AFC at my last CD3 u/s was only 3. I'm kinda thinking that it doesn't leave me with a whole lot of chances, you know what I mean? I am 33. Right now, my FSH is still normal, the higher end of normal, but still normal, but my E2 is high, and I have Lupus and auto-immune Hypothyroid, and have tested positive for two antibodies (not that I actually thought to write them down, so I have no clue what they are). The RE thinks that since it happened so fast, my brain hasn't caught up with my body yet. Last summer I had an AFC of 25, and it has gradually gone down cycle after cycle. For IUI#3, I had an AFC of 6, and then IUI#4 was cancelled due to a cyst and high E2 (958) with an AFC of 4, and then the second try at IUI#4, this current cycle, the AFC was 3, and E2 was 500. The RE recommend IVF, however, we still have another 2 months of saving up the cash before we're ready. I am supposed to go in on the next CD3 to see the AFC, and then I guess we'll go from there.

caityr · June 2010

**ticker below**

Are u seeing someone specifically regarding your autoimmune issues? Knowing that is all happening, I think its tied in with your DOR. You are still young and it can work. I was told to use DE at your age and after using DHEA for 4 months and switching to a top program I am expecting my bio dd next week. It can def happen. I did not have autoimmune issues, but I know several women on these boards have struggled with fert issues due to them so I would pursue that aggressively.

ACM1616 · June 2010

caityr:

**ticker below**

Are u seeing someone specifically regarding your autoimmune issues? Knowing that is all happening, I think its tied in with your DOR. You are still young and it can work. I was told to use DE at your age and after using DHEA for 4 months and switching to a top program I am expecting my bio dd next week. It can def happen. I did not have autoimmune issues, but I know several women on these boards have struggled with fert issues due to them so I would pursue that aggressively.

Yes, I see a Rhuematologist every 4 months. I definately know that the Lupus is tied to the DOR, in fact, it probably caused the DOR. My dDNA was elevated the last 3 times i've been to the Rhuematologist, along with decreasing compliments, which indicate active disease. My RE explained that Lupus attacked my ovaries. I am currently trying to get in to see a different Rhuematologist, and maybe they will have something different to say. My Lupus is not necessarily under control, and I would like to get it that way, if possible. Who knows, maybe this is the best it's going to get, but i'd like a second opinion just in case. And I no longer live in Toronto, which is where my Rhuematologist is, so it's a pain in the butt to drive over an hour to get in to see her, when there are loads of Rhuematolgists closer to me.

I do know that it is possible, however, is it possible for AFC's to go back up, or is that it? Will they just keep decreasing?

ichoosehope · June 2010

I was dx with DOR after I failed to respond during two IVF cycles (things weren't horrible on paper, but everything was borderline and I was only 27, so not as great as expected). The first IVF we followed long lupron (3 follies), the second we followed antagonist protocol (2 follies). I had the best response on the third with a modified lupron protocol (6 good sized follies). I only made it to ER during the 3rd cycle and they only got one egg, the other 5 follies were empty. We have decided to go on to DE IVF (given a less then 5% chance of conceiving with my eggs, and we're are completly OOP). With DE we were given ~50-60% chance of taking a baby home.

Good Luck!!

cbeney · June 2010

Im 38 (will be 39 in a few months) and have a dismal AMH, not bad FSH and an AFC of 10, and I did an Antagonist protocol last IVF. Got a decent amount of eggs, but they werent the greatest quality, and none to freeze. This time Im doing Microdose Lupron protocol and am praying that it does the trick...

So maybe just a certain protocol will work for u better then others would? Ive also heard DHA and Royal Jelly can help with egg quality, maybe you can try those??

GL!

STL34 · June 2010

I am so sorry you are going through this. I also have an autoimmune disease. It is ankylosing spondylitis. It is much more common in men than woman, so they don't think it causes fertility problems in women, but they don't really seem to know much about it. Also, I was way younger when I first started having problems than is common with this Dx so that could play a role in why I am having problems.

This is a new Dx for me because it has been Dx'ed as about everything else. At one point or another rheumatoid arthritis, lupus and the list could go on... I was told that either the disease itself or the meds I have been on could have caused my DOR.

I am now on sulfasalazine and humira which seem to be treating things pretty well. In the past I had always had an anti-inflammatory as part of my treatment, but apparently they can cause fertility problems. So, I have been off of them for more than a year and a half now. They keep checking my blood counts. I usually have high levels of inflammation show on ESR. Apparently that causes other things like anemia that I have to fight from time to time. Right now, my ESR is still normal, but my RBCs are low. So, we will see.

I guess I don't really have a point. I just saw your discussion about your troubles and your Lupus Dx and feel like you are the first person I have met that is in a similar situation.

It does seem like your AFC is pretty low. I am not sure if there is a way to increase it. I know my AFC this month was slightly better than the month before. I haven't done any treatments yet. My RE told me he thought IUIs would be a waste of time and money for us. So, we are looking at doing IVF in September.

Ladies that responded about going to a good clinic for DOR, do you mind sharing the clinics you know that are better for this? Thanks!

juliannat · June 2010

I have autoimmune too (not lupus) and live in the GTA also. PM me if you want to discuss anything privately - I ended up doing DE but had a long history of trying with my OE and can maybe give you some advice.

njohnson1972 · June 2010

I am DOR and 38 years old.

My first IVF attempt, we did Antagonist, got 4 eggs and 3 transferred back and a BFN.

My second IVF attempt, we did EPP/Antagonist, got 5 eggs and 2 transferred back, much better quality than my 1st attempt, got BFP, but miscarried.

I was given about 30% chance of success. I may try one more time and I am taking DHEA now in case we do. We haven't decided on the protocol - my RE is researching DHEA and EPP, since both alter hormone levels, and if EPP should be done with DHEA. If we do another cycle with my own eggs and it doesn't work, I am moving on the DE. I am tired of the heartbreak with unsuccessful IVF cycles. With DE, we are given a 60%-70% chance. I have a great uterus and wonderful lining. I just make crappy eggs.

ACM1616 · June 2010

Thanks so much for your replies ladies. I really really appreciate it. It's so nice to hear that i'm not the only one. I mean, I know i'm not the only one, but it's also nice to hear some success stories. In my head, i'm ready to just move on to DE, since we're OOP, and i'm not willing to try with an AFC of only 3. Like I said, i'm not much of a gambler.

ACM1616 · June 2010

STL34:

I am so sorry you are going through this. I also have an autoimmune disease. It is ankylosing spondylitis. It is much more common in men than woman, so they don't think it causes fertility problems in women, but they don't really seem to know much about it. Also, I was way younger when I first started having problems than is common with this Dx so that could play a role in why I am having problems.

This is a new Dx for me because it has been Dx'ed as about everything else. At one point or another rheumatoid arthritis, lupus and the list could go on... I was told that either the disease itself or the meds I have been on could have caused my DOR.

I am now on sulfasalazine and humira which seem to be treating things pretty well. In the past I had always had an anti-inflammatory as part of my treatment, but apparently they can cause fertility problems. So, I have been off of them for more than a year and a half now. They keep checking my blood counts. I usually have high levels of inflammation show on ESR. Apparently that causes other things like anemia that I have to fight from time to time. Right now, my ESR is still normal, but my RBCs are low. So, we will see.

I guess I don't really have a point. I just saw your discussion about your troubles and your Lupus Dx and feel like you are the first person I have met that is in a similar situation.

It does seem like your AFC is pretty low. I am not sure if there is a way to increase it. I know my AFC this month was slightly better than the month before. I haven't done any treatments yet. My RE told me he thought IUIs would be a waste of time and money for us. So, we are looking at doing IVF in September.

Ladies that responded about going to a good clinic for DOR, do you mind sharing the clinics you know that are better for this? Thanks!

Sorry to hear about your troubles too. Like the other lady who responded who has an autoimmune disease, there is no way to tell what organs the disease will attack, which is why I never even considered it would attack my ovaries. I just can't believe how quickly it has gone down. 25 last summer, to 3... just crazy!

Good luck with your IVF in September. Like others have said, will you be looking into DHEA?

STL34 · June 2010

ACM1616:
STL34:
Sorry to hear about your troubles too. Like the other lady who responded who has an autoimmune disease, there is no way to tell what organs the disease will attack, which is why I never even considered it would attack my ovaries. I just can't believe how quickly it has gone down. 25 last summer, to 3... just crazy!
Good luck with your IVF in September. Like others have said, will you be looking into DHEA?

Yeah. I just found out about the problems. My FSH was elevated in February, but my OB said my AFC was 40 so I shouldn't worry. My first visit to my RE was in May and he said my AFC was 11. We think my OB must have been off on the count, but I still wouldn't have thought she could be off by that much! So, I might be in the same boat. Even if she was just really off and my count was not good then, my RE really doesn't want me to wait to do IVF. He said that I should respond okay right now. But that my b/w says that my numbers will drop, we just don't know when.

I am paying for a two cycle plan. So, I thought I would see how the first cycle goes and if it doesn't work, I will ask about taking DHEA. My RE doesn't think I will have any problems other than having only 6-8 eggs retrieved. So, I am going to trust him on this one. He has treated a lot of DOR and POF patients. Oh, also, they require all DOR patients to have ICSI with IVF.

ACM1616 · June 2010

Ya, our clinc will require IVF and ICSI as well. I seriously think i'm going to move to DE. I'll wait until CD3 and do another AFC, but I don't expect it to really go up from 3, and i'm just not willing to do IVF with the greatest hope being only three, which generally, that would not happen. So, i'd rather spend the money, have my sister donate, and hopefully be able to also get some frosties.

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