Asherman's Syndrome: I Have It :(

Okay...I am devastated. I am going back and forth between crying, raging, being despondent, and being in denial.  My "questionable" HSG has become very definite: I have a very serious case of Asherman's Syndrome, eg intrauterine adhesions and scarring from my D & C's following 2 miscarriages. I emailed my image (above) to an Asherman's specialist in CA and he confirmed what I knew after seeing my films...there is significant scarring throughout my uterus that requires surgery. The uterus should be a solid white triangle shape without any blank space. Instead the stupid balloon is floating around in the center of my uterus (bad radiologist move) and large adhesions can be clearly seen all along the right side and in the top left near the tube of my uterus. I think I see a tiny bit more scarring near the right tube too.  My cervix and my tubes are open though...you can see the contrast flowing through them on either side.

My emotions are ALL over the place.  This looks really, really bad to me and I don't know what my chances are with surgery for full recovery.  I cannot believe that 2 RE's and 2 OBGYNs missed this over the span of 2 years. All the lost time, wasted money, the terrible grief and heartache of infertility and 3 more early miscarriages because of this...and I never had a snowball's chance in hell of having a healthy pregnancy with a broken uterus like this. I'm almost out of eggs and have lost 2 years of trying fruitlessly.

The scarring/Asherman's was caused by the 2 D & C's I had back in 2010.  It's possible that I have some retained placenta too and if I do, that's really bad news. 90% of Asherman's is caused by a D & C..some are caused by other uterine surgeries (like removing fibroids and polyps), C sections, or infections. The severity of it determines the liklihood of treating it succesfully...the statistics are low, maybe 30% when it is severe, 40% over all, but pretty good when it is mild at 80%.  I think my case is pretty severe though. Tomorrow I will see another RE who deals with Asherman's and find out what he says. Asherman's is way more common than people think and not only is it undereported but it often goes undiagnosed (like it would have for me had I not PUSHED for an HSG despite being told I didn't need one). I read that up to 40% of women can develop Asherman's when they've had more than one D & C. 

I am so furious with the OB who caused this, with the RE who missed it back in 2010 when I had a hysteroscopy, and most especially with my current RE who not only missed it on an SHG just weeks ago, but went on to tell me to "ignore the HSG" results and continue with the injectable cycle anyway.  He actually refused to order an HSG for me when I requested it previously. If I had listened to him, I would be trying fruitlessly, perhaps doing failed IVF's, until I hit menopause! Or worse, concieved only to lose a baby again, perhaps later, because Asherman's can cause second and third trimester losses.  Talk about medical negligence!  A total lack of medical ethics and terrible advice that would have put me and a baby at terrible risk. He is FIRED from ever being my RE again.

Asherman's can also cause ectopic pregnancies because when an embryo finds the uterus inhospitable, it will move back into the tubes to find a better implantation site.  No surprise now, but my suspected ectopic was in my right tube...obviously due to the inhospitable right side of my uterus covered in scar tissue.

What I don't know is if the Asherman's is THE cause of my subsequent losses or if there are still some immune issues going on.  At any rate, the first item on my list is surgery to get this repaired as much as possible. I am flying into to Boston to see one of the best Asherman's doctors, an "A list" RE on February 27th. I so hope he can help me.  If you are ever diagnosed with Asherman's...make sure you see someone very experienced with Asherman surgeries!  Most OB's and RE's can make it worse or just don't treat it succesfully. You can learn more and join the Asherman's support group at ashermans.org. 

Just wanted to report that I told me first RE that I feared I had Asherman's after my second D & C because my period changed from being 5 days of heavy/medium flow to barely 3 days of medium/light flow. Any change in a period can be a symptom following a D & C. Of course....he STILL missed it. I don't know what one must do to get a correct diagnosis for Pete's sake.

I don't know how many surgeries I will need now or how long this battle is going to last or even if there is any hope for me. I may be at the end of my long and painful journey to have another child.  I hope not.

I'm so scared...so angry...so sad.