Diagnosis

I thought I was most afraid that the RE would say that we are unexplained. I know I would have been highly frustrated if he had, but I had recently read several IUI success stories with unexplained and I think I would have felt a bit more hopeful than I feel right now. Instead, it turns out that I have Diminished Ovarian Reserve (DOR). This means that I have less eggs than a woman my age (29) should. In fact, quite a few less. My antral follicle count, which gives an indication of my lifetime supply of eggs, was 5. Apparently a woman in her 20s should be in the double digits and even an 11 would be considered low. Combined with my FSH of 9 which is officially good, but apparently kind of high for a woman my age, the doctor diagnosed DOR (he said reduced ovarian reserve, but all my google searches brought up DOR and really diminished and reduced are synonyms so same diff.). So basically my eggs are quite a bit older than me.

I thought I was prepared for whatever the doctor had to say, but I was wrong. As I started asking questions, the reality of what he was saying mixed with my worst fears brought tears to my eyes and soon they started spilling down my cheeks. I was a bit embarrassed and when I went to apologize for my break in composure I burst into tears. J reached over and squeezed my knee. He was quiet during the whole appointment, as he typically is (he processes emotions much more internally than I do), but this was the sign of support I needed from him.

The RE ordered more CD2 bloodwork for me and another pelvic ultrasound with antral follicle count. He wants to check to see that this AFC wasn’t a fluke and to confirm the diagnosis. J’s count and motility were good. His morphology was 4%. Apparently 5+%  is normal, but the RE said that morphology criteria are becoming so stringent that the difference between 4-5% is really arbitrary and morphology results are more or less becoming unhelpful. Apparently medical studies suggest that morphology might not matter that much.

We’re meeting again on January 15 to go over those results and hear which treatment he recommends. At this point, our options are injectables with IUI or IVF. From what he has already said, I think he’ll favor IVF. At my age, my risk of triplets or more is pretty high with injectables and IUI. Not only is it a bit scary to think of trying to care for 3 newborns at once, but the risks to both myself and the babies would significantly increase. Our projected success rates all depend on how well I respond to the medication. Ideally, IUI would give us 20-25% chance of conception each round (I erroneously told some friends 13%; that was a different stat that no longer applies) and IVF would give us 50-55% chance of conception each time with 20-25% chance of live birth.

J and I discussed it more this evening. He thinks we should really listen to/trust what the doctor recommends as his top choice for our treatment. Due to finances, I think 3 IVF cycles would be our limit (before pursuing adoption). If we got lucky on the first, we’d likely try for a second child but if it takes 2-3 IVF cycles we’ll probably have to change our plans and be content with one child. I definitely think I can be happy with one child. I was an only child and there were a lot of benefits (and some downsides) to it. It would be millions and millions of times better than not being a mother at all, but the thought of being forced by my body and financial constraints to stop does make me sad. Of course, we need to take each cycle at a time and see what life hands us.

I have gone through the gambit of emotions this afternoon (which was a total write off even though I stayed at work). I have been sad, scared, making jokes, and angry. Making jokes was necessary for me to try to bring some levity to the situation and I think the sadness and fear are self-explanatory. My anger rose up in mini waves when I thought about how unjust this is. When I think of the people out there who don’t appreciate their children or treat them badly and who got pregnant without trying or paying a dime, it infuriates me. Also, when thinking of the possibility of adoption I thought about how we’d essentially be pleading with someone to find us worthy to raise their child. I understand that completely from the perspective of a birth mother, but the thought that someone might find us unworthy makes me so sad, scared, and angry because most people don’t prove anything to anyone before becoming parents (even though some should probably have to). It’s definitely not fair and nothing about it ever will be. But it is our reality, and I’d better come to terms with it so that we can move forward.

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26 thoughts on “Diagnosis

  1. I’m sorry. Hugs to you. That is a tough diagnosis to get. It’s so unfair.

    I don’t mean to gloss over it, but in my year of obsessing over TTC and scouring internet sites, I have seen many success stories involving DOR, especially for young women like you. I’ve read that young women with DOR tend to have much better quality eggs than older women with DOR, even though you have fewer eggs than someone your age would normally have.

    I totally get this: “Also, when thinking of the possibility of adoption I thought about how we’d essentially be pleading with someone to find us worthy to raise their child…most people don’t prove anything to anyone before becoming parents (even though some should probably have to)”. That’s what scares me most about adoption, too. It’s a tough journey, just like infertility. It’s hard to not sometimes feel bitter that for many others, having a child is easy and a joy.

    Many hugs to you, and I hope it all works out. It’s great that your husband’s sperm is good. (My husband has similar morphology, by the way.)

    • Thank you! I hope you’re right about the egg quality. I have read similar things, but have also been told that they won’t know the quality for sure until they retrieve the eggs. My fingers are crossed though that they are good quality eggs.

  2. You’re in my heart. I can definitely relate to the range of emotions you’re experience as they relate to privilege so many take for granted when it comes to fertility, access, costs, and feelings of being judged when pursuing adoption.

    • I asked my doctor, who I trust and has a really good rep amongst patients and colleagues, about AMH and he said that when both FSH and AFC are pointing at DOR, AMH does very little to add to the picture. I’m not really afraid of having to do IVF. Yes there are some fears I suppose, but the big fear would be that it doesn’t work. Since I know that IVF is the most aggressive/successful treatment regardless of condition (it’s just sometimes way more than is necessary, especially considering the cost), having the AMH doesn’t feel that important to me. I am ok with proceeding with IVF, my big fear would just be that my eggs are so problematic that even IVF won’t work for us.

      • BTW re-reading this, I hope it didn’t come across snotty. That wasn’t my intent. I more so meant that I am happy that I do really respect my doctor’s opinion. My mom started looking through the Canadian Medical Association Journal for info on DOR once I told her and she said that everything she found was in agreement with what my RE said.

      • No, you didn’t sound snotty! I respect your response/decision, I just wanted to make sure you knew and thought about it. Knowledge is power, esp. when dealing with IF and REs. :)

      • Totally agree about knowledge being power. Unfortunately all my research sometimes leads me down rabbit holes too. I asked my doctor about some conditions I read about online and most of those are really not validated by research. Oh well, had to ask or I’d always wonder if we were missing something that would turn things around.

  3. Oh hun…I’m sorry to hear the news from your RE. Sending you lots of hugs. I have read many many blogs over the years of ladies with DOR and have seen natural pregnancies, IUI pregnancies and IVF pregnancies. I think at your age you are in the best case scenario for DOR but I know its a tough pill to swallow. Have you found some blogs of others with DOR? If not, I can point you to some lovely ladies dealing with the same stuff.

    • Please do point me in the directions of others with DOR! I know of no one because it seems like all the blogs I read are from people with undefined infertility, PCOS, or from people who are still in the discovery stages. I have so many questions about DOR and it’s a month until I see my RE again. The forums and google searches don’t seem reliable and it would be nice to get a more in-depth look at others experiences. I also have a questions for you. Did you have two embryos transferred or did one embryo split into the twins?

      • We transfered two because we only got two embryos total (despite retrieving 19 eggs, yep, epic fertilization fail despite no indications of any sperm issues)…our plan was only to transfer one but when all went to hell with fertilization, our RE said that transferring both was really our only option.
        Here is another Canadian girl with DOR:

        http://thequestforthegoldenegg.blogspot.ca/

        I know of a few others DOR blogs, just have to hunt them down…

      • Seriously, thank you so much! I need hope and to connect with women dealing with the same issue so badly. I will definitely check out all of these blogs (the pregnancy one will show me how it can still happen!).

        That is amazing that your only two embryos yielded 2 babies for you! I would have been freaked out that our chances were bad after so many embryos didn’t make it, but your story goes to show that sometimes all it takes is one (or two). This means a lot to me knowing that I’m likely to have fewer eggs retrieved.

  4. Me, too! That diagnosis sucks. My diagnosis, however, was not based on my FSH and AFC but on my AMH. My AFC is still low for my age, but much higher than my AMH predicted. If you want to know more, I would love to chat with you. You can ask all the questions you want.

  5. I have DOR. I am older than you and was diagnosed at 37, but my first IVF was a success. My FSH was 11.3, AMH 0.4 and antral follicle count was 4. It is absolutely possible to be successful with this diagnosis. Also, since you are younger, your eggs will most likely be the same quality as any 29 year old, even if you don’t have as many left.

    • THANK YOU! I need as many success stories as I can get to keep my hopes up and today I really needed this. And congratulations on your pregnancy/baby. Can I ask what your medication protocol was (I have been reading up on how suppression meds are contraindicated with DOR)? Also, how many eggs were they able to retrieve? At this point I don’t know if I should be expecting baseline (so 5 for me) at best or is there hope that stimming could get me a bunch more.

      • I did an antagonist protocol. BCPs, then straight to stims on CD3 and later added Ganirelix to prevent ovulation. I stimmed for 13 days and they asked me at one point if I wanted to cancel because they thought I would only get 2-3 eggs. But I didn’t cancel because I would have always wondered what if and I am glad I didn’t. They got 5 eggs, 4 were mature and all 4 fertilized. I transferred 3 on day 3. And they were not that great. Just a 5, 6 & 7 cell. So 4 eggs with 4 antral.

        My 2nd IVF I had 10 antral and they only got 1 egg. But this was 2 years later and my FSH has skyrocketed. It was also a different protocol.

        I know you trust your RE, but I have seen many women on forums have low antral follicles and get much more than the antral count. Your FSH is in the normal range and without an AMH it is hard to determine from those 2 alone if you actually will have trouble responding. All follicles produce AMH, even the really tiny ones that cannot be seen on an ultrasound. So you AMH value will give you a better understanding of how many eggs you actually have left. The one antral follicle count you had may really mean nothing. I have had an antral as low as 4 and as high as 12, but my AMH at the time of my successful cycle was low at 0.4. That was the best indication of how I was going to respond.

      • Thank you for that information. At this point I don’t think we’d change our plans. I want to proceed with IVF because it will be the most aggressive and give us the best chance whether we had few or lots of eggs. If we get more eggs than anticipated then I’ll be ecstatic and pleasantly surprised. Given my family history (the women on my mom’s side) of small families despite best efforts (but no testing or treatment), I definitely want to be aggressive/proactive. I know that my FSH is technically normal, but my RE said it is a bit high for a 29 year old. I had another AFC and will find out the results on Jan. 15.

      • Yes, of course! I don’t mean to I ply that you should change your mind about IVF. AMH can be done at anytime during a cycle, so you wouldn’t have to hold off on anything to get the test done. I just believe that AMH will give a better picture of what you will be facing, but at the same time it probably doesn’t matter much since you are doing IVF anyway. I am just a numbers person and like to know these things, but if you are comfortable not having that info, then go for it! :) I’ll be following along and hoping for you!

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