Adenomyosis anyone?

lynnshey · February 2013

Hi all,

I introduced myself a while back, had loads of upheaval in life and never came back (bad me, I know). I'd like to introduce myself again and ask a question (or a couple) if I may.......41 year old female with two kids - a 20 year old and a 3 year old (yup, 17 year age difference). Some of you may remember me because there was a good laugh as some folks had read I had two toddlers lol We've had three miscarriages in the last two years and I have been kind of avoiding the whole TTC discussion since the last one (probably in denial/stress/etc). Anyhow, I recently went to a ob/gyn and have been told I have adenomyosis. The doctor actually said I have adenomyosis, even though my symptoms point to endometriosis, so I'm a little confused as to how to describe myself. Is anyone else here have that? Or experience with that? Of course, I'm googling and coming up with loads of questions I forgot to ask the doctor and I'm totally confused. Just looking to talk with some folks - or even bounce ideas off of those that won't mind listening. Thanks....

AprilDrew04 · February 2013

I don't have any experiences with this, but wanted to say welcome (back) to the board. Also, if you have questions after appointments with your RE call and ask them. They will either answer the questions for you or direct you to make another appointment. It can't hurt to call and try to get answers.

lynnshey · February 2013

Thanks AprilDrew04 - my ob/gyn does have a nurse line to talk to and I was going to give her a call once I had a few more questions under my belt. Unfortunately, I am not at the RE stage (insurance won't cover)....but I have been talking to hubby about scheduling an appt with one just for a second opinion.

anitaflora · February 2013

Really long response ahead

Hi lynn,

I am actually taking a bump break right now, but lurking I came across your post and really had to come out of break mode to respond because I have a few similarities to you and have recently also had this as a likely diagnosis myself.

And I've rarely found anyone - I think, you're my first actually - that has ever heard of this condition.

I have a son who just turned three that was conceived naturally and quickly and I had an easy pregnancy. I will turn 40 in May.

We started trying for a second in Dec 2011 and have since had four losses - one a chemical, one that was very, very early but not really a chemical because I did get a positive blood test before I miscarried, and two that were very similar in that I had no symptoms of anything wrong until I went for my ultrasound and saw that there was barely a fetal pole visable and subsequently no growth.

I had a cyst that was discovered on my ovary back in August of last year and as a result had an MRI. The MRI had a notation that they were seeing something consistent with adenomyosis. But it was not a proven diagnosis. My OBGYN at the time told me she didn't feel it was anything to be concerned about regarding my carrying a pregnancy. She couldn't be 100% sure which it was but that whatever it was I was able to carry a pregnancy to term so it couldn't be the sole reason for my miscarriages at that time.

Fast forward to getting my saline sonogram at my RE's office just this past January. This is where they fill the uterus with saline and do a sonogram to look for any abnormalities. One common thing with adenomyosis apparently are fibroids. I did have one fibroid but he said it was on the outside of the uterine cavity and not something he was concerned about - that it's location would not be in a place to interfere with carrying a pregnancy. But I'm just sharing this because it is something to be aware of - that fibroids can be associated with it. And fibroids or abnormalities in your uterus could definitely interfere with carrying a pregnancy.

What he did find were some very small uterine calcifications - so areas within the myometrium (the layer surrounding the uterus) where there were little calcifications that could be a problem should an embryo attempt to implant there. The calcifications could restrict blood flow to that area. But it's a pretty small area and there is nothing they can do to remove them that wouldn't risk a much greater negative impact to my uterus and surrounding tissue.

But I'm sharing that also because I believe the calcifications could also be a product of the adenomyosis, but not at all definitevely. They could also be from some other thing (D & C scar, but I think that's doubtful for me since I only had one and she said she had to do very little to remove what was there - but possibly; or just some other reason we don't know).

So, after geting all the results from my repeated loss testing a few weeks ago, I got input from both my RE and my OBGYN. They said some things that coincided with each other, and some that did not. I will just share with you what I heard from both of them to give you a full picture.

They both stated that there is really no way to know with 100% certainty that I do or do not have this. They both told me that the only way it is every found with 100% certainty is after a woman has a hysterectomy and then they look at it and say, oh, hey, you had adenomyosis. They could also do a biopsy of the tissue, but like with removing the calcifications this is more risky than what it's worth when you're trying to get pregnant. So as a result, there are no definitive studies about linking this to recurrent miscarriage because there is no way to make the diagnosis until they see the uterus with the naked eye apparently. They both agree on all of this. And they both agreed that since there is no way to treat it and no definitive link to say this is the cause of my losses that I should keep TTC regardless of it.

The place where they differ is really on their guesses as to whether or not it is affecting my TTC. My RE told me, yes, it could very likely be the reason. However, his main reason for my miscarriages he told me over and over and over again was due to my age. And he said, so regardless of whether or not you could fix this, you still have the battle with your age and my very, very low AMH (anti mullerian hormone which was part of my repeated loss testing). So I felt much more pessimistic leaving his office. And I felt like okay, I can't just take my RE's opinion that there's no way to diagnose this for sure and that there's nothing that can be done about it. If I'm going to continue TTC after four losses I have to do something else to make SURE I am not going to keep trying when in fact I won't ever be able to carry a successful pregnancy again because of this. I just had to get my OBGYN's opinion.

And here's where she differed, and what I tend to believe more because I feel like (wrong or right) she knows more about the hardware so to speak. The RE is concerned about getting me pregnant and he knows all about fertility treatments and hormones, and yes, also about structure - but I feel like it's really my OBGYN's specialy to know more about this kind of thing.

And what she said was that since I carried a successful pregnancy not that long ago, that she didn't think that the adenomyosis would be preventing me from doing so again. She again reminded me that it could be, that they can't study this because of what I already explained, but that she really, really felt like it would be unlikely in my case. And the reason is because the condition just does not progress that rapidly. She said if I had this I would have had it since I was a teenager. It's not something that just shows up out of no where or progresses very quickly. I asked her repeatedly, so you think that since I had my son that 3 years in between is not enough for it to have progressed to the point where it would be interfereing with my carrying a pregnancy? And she said repeatedly, yes, that's right.

Now, as I mentioned, the calcifications or fibroids - the results of the condition - could cause interferences, but not the condition in and of itself.

Whew.

Lol. I hope that was helpful to you! And please, please PM me and let me know if this makes sense to you and let me know what your doctor tells you!

I would seriously consider questioning why he thinks you have adenomyosis. Did you have an MRI? If you have endometriosis it can't be so bad that it is causing you fertility issues or you would not have two children already.

I would also strongly suggest talking with your OBGYN or an RE and asking about whether or not they can look into whether you have any fibroids or any structural thing like that which could be contributing to your losses.

Would love to stay in touch!

lynnshey · February 2013

Anitaflora - thank you for coming back and posting! I am going to pm you right after I send this so we can stay in touch. I have read your post twice - and my head is swimming with all of your great details. That and my 3 year old is running around like crazy so I can't concentrate. But I am going to read this again in a more peaceful time and I'm sure I will have loads of questions. I will admit I have been frantically googling both conditions since I didn't think to ask the dr which one he said would be my primary issue (kwim?).

It sound like part of our situations are very similar. We've suffered three miscarriages in the last 2 years - one (similar to your last one) were we didn't know anything was wrong until we went in and there was no fetal pole. My other two were just this past summer (May and August) and both showed BFP, but then I lost both around the 7 or 8 week mark. I know my age is an issue, but have really felt both doctors that I have seen blame it all on the age, rather than testing to see what else I could be low on. Yes, I know - probably like everyone here - I want to check all possibilities and find that one "fixable" thing so we can have a successful pregnancy.

But to answer you last question - no, I have not had an MRI. He is basing his decision on two sets of ultrasounds and a pelvic exam. From what I'm reading online (which I would love to share with you), I am feeling like it isn't very advance yet. I do not fit all of the symptoms, but I do fit a lot of them. And to your point about going with what you feel - my gut says I need to ask more questions before deciding anything and getting a second opinion. Okay, enough rambling for now - off to pm you.

anitaflora · March 2013

Lynn,

I am so sorry I haven't yet responsed. The last few days have just been really crazy and now I have a thumb injury, no joke, slammed it in the car door, that makes it tough to type much.

But as soon as I am able I will write back and haven't forgotten you!!

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