HSG results...not good, need help. Distal/peritubal disease bilaterally? — The Bump
Trouble TTC

HSG results...not good, need help. Distal/peritubal disease bilaterally?

I don't know what to think. The radiology dept where I had my HSG done said my HSG was normal, but after my RE reviewed the films he reported the following. I didn't get to speak with the doc today since I was only there to make a copy of my records so can anyone provide feedback on the following (I copied docs notes below)

"The uterine cavity is mildly deviated to one side. Both tubes fill and spill into a tubo-ovarian complex of adhesions. 

Impression:
1. Severe distal tube and peritubal adhesive disease-bilaterally 
2. In combination with the deviated body of the uterus, these findings are, very likely, indicative of a rather severe degree of endometriosis 
 
Conclusions: This patient is not suitable for IUI?s and requires IVF."
Age 32, Diagnosed with Premature ovarian aging due to autoimmunity. AMH 1.17, E2 78, FSH 7.9 HSG-reveals tubal disease and apparent endometriosis DH's SA-normal Positive for thyroid antibodies, Crohn's disease 8/27/11-huge 58 mm cyst 1st IVF cycle canceled :( 9/20/11-2nd attempt at IVF cycle 1. Microdose Lupron Protocol 9/30-AF day 2 all clear! start Lupron 10 units 2x's/day 10/13-Egg retreival 10/16 transferred 2 embies! 10/30-BFP! Beta #1 685 11/1 Beta #2 1736 BabyFruit Ticker

Re: HSG results...not good, need help. Distal/peritubal disease bilaterally?

  • I don't have any info to offer you but wanted to say I'm sorry for the bad news.  (((hugs))) and I hope you get some answers soon.

    Severe MFI. Me: supposedly all clear but eggs showed vacuoles.

    IVF #1 January 2012, ER Jan 14th: 34R, 27M, 23F. Day 3: 18 embies still strong. Day 5: zero "good," one "fair," the rest "poor." Transferred 3. None made it to blast or to freeze. Jan 28: BFN.

    Lucky IVF #2: Transferred two beautiful day three embies on St. Patrick's Day. BFP on HPT 7dp3dt. Beta 1 (14dpER)=106; Beta 2 (16dpER)=140; Beta 3 (19dpER)=264! First u/s 4.17.

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    Hope is the thing with feathers - that perches in the soul - and sings the tune without the words - and never stops - at all - (Emily Dickinson)

  • Im not a doctor so dont hold me to this but I think you just have endometriosis bad. Do you have horrible cramps on your cycle? I know you can have sugery to fix endometrosis. I believe I might have it. I have horrible cramps and heaving bleeding on my cycle. I have an HSG in a few weeksSurprise Nervous.....

     

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  • I have no advice or info but wanted to say ((hugs))

    Hope you're able to get clarification soon on it!

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  • The deviated to one side thing is no big deal -- mine tilts to my left and the docs definitely said it should have no impact, but it sounds like they think it might be caused in part my endo in your case.

    The adhesions thing is definitely a reference to endometriosis -- it's possible to have it without ever having symptoms.  Your doc will probably want to do a laparoscopy at least to look around and see how bad it is inside the utuerus, to determine if they need to scrape it before proceeding with IVF.  It kindof sounds like they are saying the endo is all around the tubes and ovaries, and not necessary inside the uterus, so it may not be necessary to have the lap done at all. 

    I'm sorry, I know you're probably freaking out and it's one more thing standing in the way.  The goodish news is that you were already planning on IVF anyway at this point, so maybe this doesn't even really change anything for your planning. 

    Do you have a follow-up set up with the doc yet?  He'll be able to give you a better idea of whether you're going to need to deal with a lap before IVF, or if he thinks it won't interfere with the IVF at all.

    ((hugs))


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  • Thanks for the support ladies. I totally was not expecting this from my doc today, especially since the radiologist said everything looked normal. Just goes to show you always get a second opinion! I do have some of the symptoms of endo, but I also have Crohn's so I attributed any sort of pelvic pain to that. I do have post O spotting that starts sometimes as early as 3DPO until AF. 

    I am waiting to hear what the doc has to say about the lap. I also have an appt with another RE tomorrow for a 2nd opinion so I will see what they have to say as well. 

     ELF, I was planning on IVF, but my insurance company wouldn't approve so I was going to do the IUI's first. Hopefully my insurance company will reconsider based on theses new findings.

    I really need to come to grips that this may not happen as fast as I would like  :( I just want a baby!!! :(  So glad I have you ladies for advice and support. 

     
    Age 32, Diagnosed with Premature ovarian aging due to autoimmunity. AMH 1.17, E2 78, FSH 7.9 HSG-reveals tubal disease and apparent endometriosis DH's SA-normal Positive for thyroid antibodies, Crohn's disease 8/27/11-huge 58 mm cyst 1st IVF cycle canceled :( 9/20/11-2nd attempt at IVF cycle 1. Microdose Lupron Protocol 9/30-AF day 2 all clear! start Lupron 10 units 2x's/day 10/13-Egg retreival 10/16 transferred 2 embies! 10/30-BFP! Beta #1 685 11/1 Beta #2 1736 BabyFruit Ticker
  • I wanted to chime in to your post since you have what seems like a pretty similar situation to what I have been dealing with.

    On my HSG, only my right tube spilled, and when it did, it spilled into a single spot indicating that there were a bunch of adhesions around my tubes and uterus. My uterus was also displaced strongly to the right.

    I was tested for Chlamydia antibodies-- negative thankfully, and then went in for a laparospopic surgery to assess the damage, take out the adhesions and open up the left tube.

    It turned out that my left tube was stuck to a loop of my bowel and there were adhesions all around my tubes, but he thought they looked healthy in spite of all this. My uterus was also firmly attached to my cul de sac. All this stuff was taken down, and I have been TTC naturally ever since (albeit with no luck so far). 

    What was interesting is that my endometriosis was confirmed by biopsy but staged only as mild/moderate, not severe, even though I had so many adhesions. I also did not have many classic endo symptoms.

    After my surgery, my RE strongly encouraged me to go straight to medicated IUIs, but only gave me a 5-10% chance even with them. Since I am not a big fan of spending 1K per try on medicated IUI with rather low odds, I am saving my money for the big guns that have much better odds if I don't have success on my own in the next few months.


    IVF #1 ET 1 d3 embryo 10/30/11 BFP
    3 Embryos frozen (1 d5, 2 d6)

    DS born 07/29/12

    FET #1 ET 1 d5 embryo 02/10/15 BFN

    FET #2 1 d6 embryo didn't survive thaw, transferred last d6. CP :(

    image
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