Saturday, March 27, 2010

Asherman's syndrome

Damn Dr. Google....

since I had the hysteroscopy and the chat afterwards with the doctor about the fact that he found what looked like scar tissue (no adhesions though, like filamentous scarring) I've of course done what everyone else would have done and started searching the net for how I could have had such a thing.

It turns out the condition has a scary name...Asherman's syndrome. This is normally connected to previous uterine surgery such as D&C after a miscarriage, polyps removal etc. In December 2007, before becoming officially an IF patient at my clinic, I had contacted a gyn here to see if he could check my tubes for patency. He said he could and that he would have performed an exploratory laparoscopy and a D&C which, he said, helped at times to "refresh" the lining and promote implantation. This sounded more than excessive to my Italian gyn (could he not simply do a HSG?) but sure I was living in Ireland, I had to go with the flow. After surgery, he told me I had mild endo and suggested medical menopause to which I said no and then contacted the clinic.
I never thought anymore about it, it had been a waste of time in my opinion but nothing more. Now I'm afraid it left me with this Asherman's gift.
I got so worried about this over yesterday and today that I will call Dr. B on monday and see if he can reassure me a bit...Nearly every Asherman's website states that the use of a laser to remove the scars is actually NOT recommended as the heat generated may worsen the situation. Of course he used laser because it's the safest option to minimise bleeding and uterine perforation, but in my case...Damn Dr. Google again.
Of course every website warns you to be weary of non-Asherman specialists to perform the surgery as they often lack the skills for a successful recovery....oh God....I have to ask him if at least he knows what it is!
Dr. B said to expect bleeding/spotting for a couple of weeks and the two weeks are up next tuesday. I had my period a week ago (I'm amazed that I could tell the difference) and I'm still spotting. I have also started the pill so that I could plan the FET and I'm now worried that in fact I should have been on oestrogen only following surgery to make sure the lining was thickening in a healthy manner. My pill is a monophasic one with oestrogen and progesterone, I hope it's ok.

Monday can't come fast enough, I have to know much more about my surgery, how extensive the scarring was (I have pics where I can see healthy tissue also and no bands, but it can be a close up) and were it was. If he thinks it's ok that I'm on the pill and the scheduled FET for May. I'll be seeing him on the 26th but I'm not clear what he will do (another hysteroscopy to check if everything healed properly? A chat and a good-luck?).

Girls, if any of you out there knows more, can you please email me or drop a message? I can't believe what I thought it was good news (yehay, I found the cause for failed uterine implantation) may turn into an even worse nightmare...

16 comments:

  1. I don't know much about Asherman's, although I have heard of it. Maybe you should post your surgical findings on my RE's site http://forums.haveababy.com/ and see what they say. I hope you get reassurance when you talk to your RE.
    I am frenemies with Dr. Google myself so I know how you feel. Hang in there.

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  2. Nightmares are supposed to be just that. Please let only our dreams come true? Hope Monday will provide a 'wake up call' of the reassuring kind.

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  3. I don't know anything about asherman's - just wanted to say I'm hoping your dr gives you some good information monday and it's not as bad as it seems right now.

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  4. Sorry about the Asherman's Syndrome. I'm sure your RE will be able to give you some peace of mind about it. Hugs!

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  5. Fran - I hope you get some useful and constructive info soon. Don't fret - Dr. Google always has the most alarmist point-of-view. Hoping good things come your way!

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  6. Julia at Uncommon Misconception has/had Asherman's - maybe her archives would have some helpful info.

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  7. I'm sorry you can't register for the website. If you go to google's advanced search page and type in Asherman's and only search the domain http://forums.haveababy.com/ you might find some helpful information. (I found that is the easiest way to do a search of SIRM's archives.)

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  8. I'm very sorry that this has you worried, Fran, and I wish I had some information to share (but must admit that I'd never heard of Asherman's until reading your post...damn, Dr. Google, just when you've cleared one hurdle he finds you another).

    All I can say is that I hope you get real, reassuring answers from Dr. B on Monday.

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  9. Just when we think everythings hunky dorey, along comes some other fricking syndrome to scare the bejesus out of us.
    I really hope that your RE can allay your fears or at least give you some facts other than Google.
    I really hope you can go ahead with the FET feeling confident.
    What a bummer.
    May all your dreams come true and your nightmares disappear:) Hang in there, dear!

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  10. I hope that you get some answers about all this from your RE, soon. I know from experience, Google can be a blessing and a curse.

    Also, the best of luck with your FET.

    ICLW#93

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  11. Oh sweetie I hope you get some answers soon! I hope it is definitely NOT Ashermans. Thinking of you xx

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  12. Oh, Fran, I wish it were Monday already and you had some reassuring answers. I've never heard of Asherman's, but I know that Dr. Google can be foe as well as friend, so please don't presume the worst yet. I hope the doctor is convinced that it simply couldn't be Asherman's for some reason and that your May transfer is a go. In the worst case, perhaps you can find an Asherman's expert physician to help you navigate the issue.

    Sending you prayers and good wishes for tomorrow.

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  13. Dr. Google does scare us sometimes, but we keep going back.

    I have no idea what Asherman's Syndrome is, but I wish you nothing but the best in dealing with all that you are going through

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  14. Now Fran, you know what they say about worrying without reason - it's like a rocking chair, keeps you busy but gets you no where! Whilst I do think it's a good idea chatting to your doc about the possibility of Ashermans but don't be stressing that you have it until you have medical proof. Dr Google is good for so many things but I do believe he causes WAY too much unwarranted worry as well.

    Take it easy honey! Thinking of you.

    xxxx

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  15. Hi - I don't actually have Asherman's, but I do have recurring scar tissue in my uterus. And I have spent my own time consulting Dr. Google - again, I don't have Ashermans but I have had 4 hysteroscopies over the course of the past year - each of them for "scar tissue".

    It's possible that the lasers your previous surgeon mentioned were only (and hopefully) only used outside of your uterus during the laparoscopy portion of the surgery - this is a fairly standard treatment for endo, and won't have an impact on the inside of your uterus. Now, a D&C can be a not great idea - it depends on why they did it. D&Cs with lots of scraping can cause problems.

    Hope you get some answers soon.

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  16. Fran,
    Thanks so much for posting this. I had a hysteroscopy in October last year and they found some wispy material in my uterus. They sent it off to pathology but nothing else ensued from it.
    I wonder if this is the reason for my 7 IVF failures?
    What should I do to get properly diagnosed? My filmy adhesions were photographed and removed but who knows if they've grown back or if there is a basement endometrium issue that can be sampled?
    This is all new to me.
    Linda

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