Endometrium abnormality

[mamacolleen]

Just wondering if anyone here has been told they have "glandular developmental arrest" and has any stories to share about treatment, success, etc. My RE did an endometrial biopsy in Sept (the sample was sent to the Yale lab for analysis) and this past monday I got the results that I have glandular developmental arrest in my lining, meaning that my lining is not responding to progesterone appropriately and so doesn't have the right proteins to support proper implantation. He said that it's a mild case (thank goodness) but that without treatment I have a 0.5% chance of carrying a baby to term.

I also have PCOS and am hypothyroid. I have a 27month old DD who was conceived through IVF. We have no option to conceive "naturally" since we have to use donor sperm. I've had two early miscarriages this year following FET cycles. My RE thinks that this endometrium abnormality caused the miscarriages. He's putting me on depot-lupron shots and I have to take a 3 month break while my body goes through "menopause" and "heals itself" in his words. He says the success rate is excellent.

Of course my head has been spinning since I heard the news. I had never even heard of such a thing before. Has anyone else here been diagnosed with this? Any success stories after been treated for it? I also see a TCM doc regularly for acupuncture so I'm really interested if anyone knows of any supplements or alternative therapies to support healing. I can't find a lot of information on it so anything would be helpful!

[tinadore]

Hi Mamacolleen,

I was diagnosed with the same thing back in 2010.  Our protocol was the same - 3 months of depot lupron to basically "fix" the problem.  Who is your fertility doctor?  And how has your journey been since your post?  We have Dr. Cadesky at Lifequest.  We were told the depot lupron would fix my endometrium 100%, and also before my IVF cycle, the doctor would do another endometrial biopsy to "agitate" my uterine lining and cause it to regenerate new cells so it would be ready for implantation.  My husband is also missing acrosomes in his sperm (the drills needed to penetrate my eggs), so after the depot lupron wore off and we got started with IVF, we needed to do ICSI as well.  Our first IVF, we had a chemical pregnancy.  Our second IVF, we had a very high positive and our baby made it to almost 13 weeks gestation, when we found out there was no amniotic fluid surrounding it, and then it passed away.  We are now in the process of waiting for results for recurrent miscarriage testing (as I had one previous m/c before this one), chromosome testing, and another endometrial biopsy for dating.  Depending on what the dr. finds, we will figure out what our next step is, I guess.

All this to say - yes, I have heard of Glandular Developmental Arrest, and yes, the depot lupron protocol is the same as what I was put on.  I'm curious to know how things are working out for you.

Tina

[tinadore]

P.S.  I have also been going for acupuncture regularly since my miscarriage.  I've heard wonderful things about how it can help fertility.  :)

[mamacolleen]

Thanks for the reply Tina! What a small world. I'm seeing Dr. Cadesky at Lifequest as well. Sounds like we were given exactly the same diagnosis and odds of success with treatment. I'm nearing the end of the depot lupron - I think I'm week 10 - and I see him this week to talk about next steps. We still have 3 frozen embies from our original IVF so I'm hoping we can still use those.

I'm so sorry to hear about your chemical pregnancy and miscarriage. That just sucks.

I have this huge fear that this isn't going to solve anything and I still won't be able to get pregnant or I'll have another miscarriage. I just want to be told I really will get pregnant, 100% guaranteed, which of course isn't possible. I do acupuncture as well, when I was going through IVF to conceive my DD and now as well.

When do you get the results of your testing? Isn't the waiting and waiting just awful?

[tinadore]

Hi again,

Isn't it funny?  Small world, for sure.  I remember when I first got my diagnosis of GDA, I tried and tried to find information on the subject and there is literally nothing to be found on it.  In fact, you are the first person I've found who has the same diagnosis, or even knows what it is!  So glad we found each other so we can compare notes.  :)

You're right, waiting is the absolute worst.  Don't be surprised if the 3 months of menopause they've told you to expect turns into 4ish.  I took my depot lupron injections in June & July of 2010 and it didn't wear off until the beginning of October.  I was desperate and trying everything I could think of to get my period to start (obviously now I realize that was futile, lol!).  At which point we had to wait another month to get started because they found a cyst on my ovary which had developed because of all the drugs.  Then, I missed the Nov. 1st cutoff date to get in for an IVF cycle before Christmas ... so, yeah.  Unfortunately for us, 3 months of waiting turned into 6.  On top of all the other waiting of tests, trying to find out what the cause of our infertility was, etc. etc.  And now I am waiting again.  :(   

I know it's hard not to, but please don't have the fear that Dr. C's protocol won't have any effect.  After everything I have been through, he is honestly the only dr. who has taken the time to find out what our fertility issues were.  We went through years of thinking we couldn't get pregnant and then one miscarriage, then more years of infertility and 3 unsuccessful rounds of IUI before we even got referred to him and he actually did more tests to pinpoint our problems.  And he is the only doctor, even now, who is trying to get to the root of my miscarriages.  I had the same fear you had, especially after our first IVF didn't work.  I remember thinking that I had come so far and tried everything, and yet had nothing to show for it.  I remember thinking that none of this would work, I would never get pregnant, that my body was so far beyond repair, etc. etc.  It's very hard not to get into that cycle of thinking.  In fact, even now, waiting for my miscarriage results, I'm starting to feel the old doubt tugging away at my soul.  But honestly, every time I talk to Dr. Cadesky, I feel like a weight has been lifted.  He always seems so, so positive that this will work for me.  And it's not like most doctors would do, just to try and get your money (although it is a business, I know).  I have a friend who figured she needed IVF after years of not getting pregnant and, after he ran tests on her and her hubby, he basically prescribed them some high-potency antioxidants and told them to have lots and lots of sex, that they didn't need him after all.  So I trust his opinion.  Although he did tell me the depot lupron was only effective for up to a year, so I'm not sure if when I talk to him again he'll prescribe it for me a second time.  Has he recommended the agitation of your lining before your next cycle?

I'm curious to know why Dr. Cadesky didn't do your endometrial biopsy before your other rounds of IVF, though?  And what is the issue with your hubby's sperm why you need a sperm donor?  Just curious because my hubby is missing acrosomes, but Dr. C. has told me ICSI is fine and we don't even need to consider a donor.

I'm sorry to hear of your losses as well.  Miscarriages are devastating, but even more so to someone who has desperately tried to even get pregnant in the first place.

Also, you said you are hypothyroid - was this one of the issues why you were having a hard time getting pregnant, and if so, what protocol are you on for it?  I'm curious because part of my recurrent miscarriage testing were tests to check my thyroid.  Also, how have your frozen cycles been - have your frozen embies survived well being thawed for transfer, and how many did they transfer for you?  We are doing a frozen cycle next (for the first time) but we only have 1 embryo.  Dr. C. says its survival rate is 98%, but I'm still worried I'll get there on the day of my transfer and it will have died.  :(

Looking forward to hearing back from you soon.

Oh, and the acupuncturist I see also prescribed herbs for me to take between now and when I get started on treatments again.  According to her, I have a spleen qi deficiency, and I am taking an Astragulus & Ginseng formula.  It's not necessarily for fertility, but in Chinese medicine, everything is connected, so if you have a deficiency in one area, fixing it fixes your entire body, basically.  Also I have read wonderful things about Vitex (chastetree berry), which I'm taking daily and she said it's safe to take right now as well.  I've heard that taking L-arginine can increase your endometrium's receptivity, but I haven't looked into it much yet.

[tinadore]

Oh, sorry, and I get my results Jan. 31st.

[kirlew]

It is a small world.... I was googling GDA and happened across this post. I am also with Dr Cadesky and learned I too have GDA and bit of endometriosis. I am curious to know what has happened since earlier this year - any good news?? I am about to get my first shot to put me into 3 mos of menopause and really really nervous. I have this feeling my period wont ever return and my eggs will dry up... i know this sounds paranoid and irrational but i guess i just do not understand the science... any success stories or just more information would be helpful....

Many thanks and best of luck to you both.

[tinadore]

Hi kirlew,

Definitely a small world!  Also, I haven't logged on here for a long time; I just happened to log on today and see your post from the other day.  So it's kind of serendipitous, in a way.

Please don't be worried about the Depot Lupron (menopause) shot.  I know it looks like a huge needle but it actually doesn't hurt very much, and at least you only need to get two of them in total (one each month).  You will be fine.  I am the biggest baby in the world when it comes to needles and, trust me, if I say it's not as bad as you think it will be, it truly isn't.  And your periods WILL return, although don't be surprised if it takes closer to 4 months than 3.  Mine did.  Your first period after the shot will probably begin with about a week of spotting, when you'll be wondering, "Is this my period or not?" ... but give it a few more days, as it will then likely be followed by a very heavy bleed.  As for the science behind the Depot Lupron, I'm not too sure of it myself.  From what I understand, your periods stop and your body goes into a pseudo-menopause.  This lets your endometrium kind of dry up completely and regenerate a whole new one.  (I'm sure that's probably not it exactly, but that's kind of all the information I was able to find on the subject, lol.)

I was extremely worried after the shots wore off, because we weren't able to get scheduled in for our first IVF until a few months after my periods returned.  I was paranoid that the effects of the medication would become less and less each month, and the longer we were forced to wait, the slimmer our chances of success would be.  My periods returned in October of 2010, and we went for our first IVF in January 2011, which failed.  We then had to wait even longer to go for our second IVF (we had no frozen embryos so we had to do a whole fresh cycle again).  I remember thinking, my chances are getting less and less.  But lo and behold, we got pregnant on our second try, in June 2011.  However, I did miscarry in August 2011.  BUT ... I am happy to say that after doing our frozen embryo cycle 8 months later (and we only had 1 embryo to work with) ... I am now almost 4 months pregnant!!!!!

So, all this to say, the Depot Lupron DOES work, and it seems to work for a while even after your periods return.  I am a case in point, since it was a full year and a half since my periods returned that I got pregnant.  Dr. Cadesky will, I'm sure, also do an endometrial biopsy on you before every IVF cycle.  He did with me.  This helps to make your lining more "sticky" and receptive to an implanting embryo.

GOOD LUCK and keep the faith!

[kirlew]

thanks for the info and congrats on your pregnancy, that does give me some hope. i just finished the hot flashes a few days ago... some were pretty intense... bizarrely i felt like i was ovulating this week..had all the symptoms i normally have during ovu... so we gave it a try... ya never know.. i even drank some Robitussin expectorant because I read that it can help with penetration - i am sure its all B.S. but worth a shot.. if i can save the money, stress and drugs of ivf that would be brilliant. i suspect given that i am about to turn 41 in october and i am trying to stay positive. my job is a little stressful and some other life stresses so need to keep everything at bay. Cadesky told me not to do acupuncture but i have heard great things about it, so may give it a try. i was visiting a naturopath who specialised in fertility issues. i may go back and see her prior to starting ivf process to see if anything i can do to even mildly increase chances...

he also mentioned to do yoga a few times a week, i have been doing yoga sporadically for the past year, i love hot yoga but hear that it isnt ideal when ttc - he said it can apparently "fry" your eggs. I have spoken with a number of people in my class that practiced right through until almost delivery without issue. it has to do more with your inner temperature and you can test  this in class to ensure you dont exceed acceptable temps and also if you are sweating and your body is regulating its own temp i don't see how this is even a problem. i had heard and read that hot yoga has actually helped people with their fertility... who knows. i tend to only go to class if i can get the cooler part of the room but will most likely stop going shortly to ensure i am avoiding anything potentially risky.

well i will send an update over the next few months on our progress, or lack there of...congrats again and thanks for sharing!

[Faith42]

Hello ladies,

Just found out my uterine biopsy revealed glandular developmental arrest too and was googling info when I came across this forum.  My RE is working on a plan, so I'm trying to get as much info as I can before we start.  Sounds like this isn't a quick fix diagnosis.  I'm 42 and really feeling I'm running out of time.  We tried IVF three times with my eggs that failed, so my sister offered to be our egg donor.  The first transfer ended in a chemical pregnancy, so now we have 2 frozen embryos left.  Beside age, another possible cause of GDA is stress.  I've always been a nervous/anxious person, so it's very difficult to manage.  I've tried yoga, imagery, and meditation, but never accupuncture. Did you find it to be more effective? 

Best wishes to everyone.  Hoping you all are doing well. 

[tinadore]

@ kirlew:  PLEASE don't do hot yoga during your IVF treatment or after your embryo transfer!  I know it is tempting to try everything in our power to try and make these fertility treatments work, but anything that increases your body temperature (hot yoga, hot tubs, even a bath that is too hot) can actually prevent your embryos from implanting.  They even say during pregnancy not to do any of these things that increase your body temperature as well, as it is bad for the baby.  As far as acupuncture goes, I have no idea why Dr. Cadesky would say not to do it, since it was at Lifequest that I first heard about it!  When we went for the information session to get started for IVF, they passed out pamphlets about acupuncture and how it was a safe and effective way of improving your odds of IVF working.  They even have these same pamphlets at Dr. Cadesky's office.  Hmmm.

@ Faith42:  GDA is a very frustrating diagnosis, but please think of it this way:  they can fix it!  I am a success story and I honestly thought I was going to end up being one of those people IVF didn't work for.  I felt truly "un-fixable".  I do know what you mean about stress and anxiety.  I was/am extremely anxious, especially when it came to the whole fertility treatment thing.  What I can say is this:  it doesn't matter if people tell you to stop worrying, stop stressing, stop being so anxious, etc.  Infertility is a BIG, HUGE deal and it SUCKS and it is EXTREMELY DIFFICULT to go through.  You will stress no matter what.  The good thing is, I was a worrywart too, and IVF worked for me, despite my constant worry.  So there is hope!  :)

As for acupuncture ... I don't know if it has made a difference for me or not.  I do know that it certainly hasn't hurt.  It's one of those things where it's hard to say, because you don't necessarily SEE if it's working or not.  What I can say is that after my last IVF pregnancy ended in miscarriage last year, I made a promise to myself to go to acupuncture regularly in conjunction with my IVF treatment, because it was the only thing I hadn't really done or tried, and I was told it was a completely safe and effective way of increasing your odds.  I went regularly for a couple of months before my next IVF (frozen cycle), I went during my cycle, and I went even after I found out I was pregnant.  I am currently 33 weeks pregnant with our miracle baby boy and I still go to acupuncture weekly.  Like I said, I'm not sure if it's helped or not, but I think it has, and I have been told by my doctors that it is completely safe - as long as it is with a certified Doctor of Traditional Chinese Medicine.  

I wish luck to all of the ladies on here.  I know how hard this is.  GDA isn't one of those "easy fix" issues - it does take time.  But it can be fixed.  I hope all of you have success!!!