I Beat Asherman's :)

I am here to tell you that all is not lost if you develop Asherman's. I completely freaked out when I was diagnosed and I had a moderate case, but after 1 surgery with the right surgeon, all scarring was removed and did not return. Sometimes, it will take more than one procedure, but it can be beat. On my follow up hysteroscopy (after surgery) that was done here locally by a different RE, we were amazed that absolutely no scarring had come back and so no further cutting was required.

The KEY to beating Asherman's is not only prevention (avoid a D & C if at all possible!!), but having it treated by only experienced Asherman's surgeons. I cannot emphasize this enough because most OB's and RE's are not trained or experienced to handle AS despite what they say.  An experienced surgeon will NOT make AS worse (which many doctors do inadvertently) and they can do in 1 or just a few surgeries what it can take others many procedures to accomplish.  Basically, if treating AS is not something a doctor does every week, then don't have them treat you.

I have an HMO but found out that one of the top AS surgeons was in network. My surgery was totally covered but I did have to fly to Boston to have it done. In the end, the only expense was airfare and a one night hotel stay. Not bad for getting my uterus back in perfect shape!

The timeline was:

January 2012: diagnosed with Asherman's with an HSG at my request after 2 years of no diagnosis despite my complaints to doctors of a lighter/shorter period since my D & C's

February 2012: Asherman's hysteroscopic surgery to remove scarring followed by a round of estrogen. I treated myself with enzyme therapy (Medizym V), Red Rasberry tea and Castor Oil packs during recovery.

March 2012: Follow up hysteroscopy showed no return scarring.

April 2012: Cleared to try and conceive again!

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. 

HSG Confusion on First Injectable Cycle...Oy!

Well, my beeeeautiful chart did not end in a BFP.  I had a lot of BFM's (big fat maybe's) though, especially on the FRER's that did turn up a more clear and visible line after they dried. I'll never know if it was another early chemical or not and I would like to think it wasn't.

However, I was already scheduled to start my first injectable cycle and began injects with Follistim on CD5, 150 IU, then tapering to 100IU and 75 IU until CD10. The BIG freakin problemo is that I had an HSG on Tuesday and this has thrown my life into chaos because the results were questionable.

The ONLY reason I was having the HSG, as ordered by my OB, was to check if my tubes were open and clear. I wanted to know that was true before doing injects and I also wanted the therapeutic benefit of an HSG (cleaning the pipes for greater fertility).  I wasn't worried about my uterus at all since after my last D & C for retained placenta, I have had a hysteroscopy that was clear, several ultrasounds measuring a good, thick lining around ovulation, and a sonohystogram that was clear just 8 or so weeks ago by my new RE.  Unfortunately, during the HSG the radialogist had some concerns about irregular filling patterns on the right of my uterus and on the left top of the uterus near the tube.  He said it might indicate adhesions.  I had the report faxed to my RE's office and the nurse told me to go ahead and continue the injects as planned. I was happy and figured the findings must not be tooooo terribly worrisome. Still, I knew I would follow up.

Well, I started the Follistim and it was easier than I could have imagined. I don't even feel the needle it's soooo thin. I've been pleased as punch about this and wondering why the heck I didn't do this before.

But yesterday morning the OB called and wanted to consult with me about doing surgery this cycle. He thinks these potential adhesions could be causing my losses and says I shouldn't get pregnant now. Of course, that means I could have Asherman's...which is completely terrifying to me.

So, I've been in a tailspin about what to do. How did I have a clear uterus before? How was this not seen on previous tests including the hysteroscopy!?  I know HSG's give false positives and negatives 15-20% of the time. Could that be the case? How serious is it if there's something wrong?  It is serious enough to lose the $500 on the Follistim (that can't be used in another cycle because it's already been opened)?  Serious enough to risk more surgery that could cause worse scarring???  I just don't have the answers.

So, DH and I are baffled. I called my mom, an OBGYN nurse, and she said she would continue with the injections.  I did my third injection last night, but am just not sure if I'll continue.  At some level, I feel like I have nothing left to lose on this cycle and if it doesn't work, I'm out the meds, just as I would be by stopping them.

The only thought I had was to get a second opinion, preferably from an expert. I just don't know who that might be though.  I wish I had done this HSG a long time ago, or just waited until after this cycle so I wouldn't have to second guess everything now.

Why can't I evar catch a break? Seriously. This is total poop.

My Pretty, Pretty Chart

I've had the best chart of MY life this cycle, starting on Christmas Eve. Of course, I tested yesterday and it was BFN, so the verdict is still out. My temps have been higher over all and then on 10DPO I had a big temp drop followed by a temp rise again this morning. I am hopeful that the dip on 10DPO is an implantation dip and my temps are looking triphasic. We shall see...in the meantime, I love looking at my pretty pretty chart! Screenshot above for your viewing pleasure.

A Christmas Chemical

So I knew we conceived immediately after ovulating this cycle and I continued to have every pregnancy symptom known to man, with the biggest symptom being related to my uterus with stretching, tugging enlarging, twitching, and that feeling a rock-in-my-stomach sensation ALL cycle long.  I had nausea, bloating, bachache, sore nipples, gas, heartburn, aching teeth, side stitches, light headedness/dizzies, shortness of breath, stuffy nose/throat, and major acne flare up.  Yep, I was preggers. I started getting faint lines and squinters late though...around 12DPO and those continued through 16DPO, about 10 of them like the one below, on many different brands and tests.

But today, just before Christmas, the witch showed up along with diving temps, making this my sixth loss in a row. So, happy freakin Christmas to me.

I'm particularly upset by this loss because my symptoms were so strong that I really felt pregnant and got my hopes up. And, of course, there's that whole "Christmas miracle" thing to consider in this "magical season." We lost Annabelle around this time 2 years ago and she was also due in August, so I had my heart set on an August baby...it gave me such hope.  I think as the losses pile up too, I feel more and more certain that I'm just never going to be able to get a take home baby with DH. 

On the hopeful side of things:

1. We got a new diagnosis in 2011 and we're moving to IUI in 2012, now with new meds.

2. Clearly I'm still fertile enough to get pregnant: 3 times in 2011.

3. My body seems to be responsive in terms of hormones to pregnancy.

4. I've been taking supplements for over 3 months along with acupuncture, so my eggs/body should be healthier in 2012 than 2011. 

On a lighter/sarcastic note, I did decide I have a new Christmas theme song, "Drunk on Christmas" by Jimmy Fallon. I'm not a drinker, but I do appreciate the sentiment, and YES...I can drink this holiday since I'm not preggers.

Christmas is a time

A special time of the year

With peace and joy and happiness
...

For opening your presents

Underneath the tree

For spending countless hours

With your familly
That's why i'm drinking,drinking,drinking

I'm gonna drink all day

I'm going home for Christmas

And my family's insane

Just gotta make it through the day

And there's no other way

I'm gonna get drunk drunk drunk

On christmas

Christmas BFP Poem

AF is due on Christmas Eve


I wonder what else Santa has up his sleeve

A BFP would make my day

But I imagine it going the other way



Oh how I would love to see that second line

And to have another baby of mine

Please Santa bring me some Christmas joy

DH would love a girl but I'd like another boy



That evil witch has been getting her way

For far too long, this is MY holiday

Stay away you evil hag

Please Santa bring me a BFP in your bag



I'll stay positive for as long as I can

At least I have DH and my little man

I've been trying for over a year for number two

Santa, you know what to do



Please grant me this Christmas wish

And I'll leave you some yummy cookies on a dish
 
-Posted by a Cayman4 on FF (she got her BFP this week too)

My Fertility Supplement Concoction

Someone recently posted a question on FF asking whether they were going "overboard" with supplements. When I read her list, I thought it sounded like nothing...just 6-7 supplements or so. Compared to what I'm currently taking, most people's supplement list would sound reasonable though. My list is INSANELY long.

So, here is everything I'm taking as of December 2011 and why. The things I'm battling are recurrent loss, possible immune issues due to elevated NK cell activity, advanced maternal age (39), and diminished ovarian reserve (fewer good eggs), in addition to some stagnation and deficiencies of the kidney, spleen and liver based on my symptoms according to traditional Chinese medicine.

For general prenatal health and improved egg quality:

• Rainbow Lite Prenatal One Vitamins - one of the best whole-food prenatals I could find reasonably priced


• 1,000 mg Folic Acid w/Vitamins B6 & 12 (Folgard)


• CoQ10 - 200 mg


• Green Tea extract (antioxidant) -300 mg


• Pycnogenol -100 mg


• Calcium w/magnesium & zinc- 1000 mg


• L-Carnitine - 500 mg


• Wheatgrass

For treatment of immune issues/inflammatory response and recurrent miscarriage:

• Zyflamend


• Baby Aspirin


• 4000 mg Fish Oil


• Vitamin E- 800 IU


• Liquid Chlorophyl


• Selenium - 200 mg


• 2400 IU Vitamin D3


• Medizym V - powerful enzyme


• MSM Powder - for improved circulation & Raynaud's Syndrome

To increase major organ health (qi) due to various organ deficiencies a la TCM from "The Infertility Cure":

• Milk Thistle: for liver qi / deficiency


• Ginseng- 250 mg: for spleen qi/ deficiency


• Astralagus/Atractylodes: for spleen qi/ deficiency


• Vitex: for kidney yang and to regulate hormones - 500 mg

To increase fertile CM (CD 8 until O only):

• grapefruit juice


• Mucinex


• Evening Primrose Oil

In addition I am doing fertility acupuncture about once a week and have started spin classes. I can't imagine I could take anything else at this point and I hope I'm doing more good than harm. With all the "possible" issues I'm facing. I'm taking so many things I need to work my schedule around them! I will say one thing: I never get sick anymore, even when my daughter and husband do, so I assume I'm doing something good for my health.

So yeah, I dare anyone to show me a longer list of supplements! Overboard? Yep. I guess desperate times call for desperate measures. And infertility certainly causes desperation.