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Dr. Appt Update *LONG*

Forum: Trying to Conceive with Medical Assistance


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March 15th, 2011, 08:20 AM
♥Ashley♥'s Avatar Platinum Supermommy
Join Date: Apr 2008
Location: St. Louis, MO
Posts: 14,102
It seems as though I picked a really bad time to choose to be a host. After yesterday im not sure how great I'll be at that job.

I went into my OB/GYN appt to beg, plead, demand whatever I had to do to get an RX for Lovenox. (For those who dont know I have a gene mutation which causes blood clots and my body does not break down Folic acid) My first RE had me on Folgard (extra Folic acid and B vitamins) and baby aspirin, my current RE doesnt think I need to be on anything at all for it. But im still taking baby aspirin and extra folic acid. I was using my last resort (my OB/GYN who had always been an incredibly awesome Dr in the past) to try and see if I could get the injectible blood thinner (lovenox or heparin) since its more powerful and I really feel that is what I need. I did my research and there are SO many women who are heterozygous for the MTHFR mutation like I am who are on baby aspirin for months (even years) who continue to miscarry then they finally find a Dr who will prescribe heparin or lovenox and actually give birth to a live child instead of miscarrying.

Of course I started crying as soon as I started talking about it, which made me feel so stupid. Then she started going on "Well...never having been through this I dont know what its like, but I imagine its tough" YA THINK? I explained everything to her told her about everything we've been to up until now and she just sat there staring at me. She tried to get around answering me in every which way possible. I started getting so mad. She kind of threw in there that she just doesnt feel that this mutation is the cause of miscarriages. I said "Its really difficult when so many Drs have so many different opinions, my first Dr said I needed to be on this and that, and my second Dr said I needed to be on nothing at all, and now your telling me the same thing that this doesnt cause miscarriages" Once again she said "I know this has got to be so difficult" I said "Its pretty strange that so many people seem to believe this has nothing to do with my miscarriages, but there is NO OTHER EXPLANATION...I have nothing else wrong with me, nothing. I have a blocked tube but that doesnt cause miscarriages" She says "Uhmm, hmmm...." She knew I was getting mad and I actually thought about just grabbing my things and walking out of there (I was there for my yearly pap too and she hadnt even done that yet). All this time im pretty much letting out what has been bottled up for a while and crying, I started to say "No one is on our side, why cant you get a Dr to care about YOU and not your money or how you benefit/hurt their statistics, we have no one that really cares about our outcome" She says "Im so sorry you feel that way, do you want a different referral?" I was done. I was just done with her, at this point I had already decided I would be seeing a different OB/GYN from now on as well. I stopped crying, dried my eyes and said "Lets just get this appointment over with". She was trying so hard to small talk with me, asking what we do, asking how Jason is, asking about the weather...etc. I short answered everything with a yes or no or one word answer. As she was getting ready to walk out of the room she said (with a smile on her face, like she was saying something positive and looking on the bright side) "Well you can at least be happy you dont have to give yourself a shot everyday" .... Are you kidding me? I said "Well, I honestly wouldnt give a **** about giving myself a shot everyday if I had a baby in my arms at the end"

So, yea. Looks like I wont be getting what I want or think I need anytime soon. I got in the car and just cried for a few minutes, then called Jason and told him she flat out said no, and that she doesnt believe that would do anything and continued to cry on the phone with him the entire way home. I told him how sick of this I am, how sick of new Dr's I am, how sick of trying to find someone who believes MTHFR mutation needs to be treated, sick of everything to do with this. He told me to go home and research and find an Dr anywhere in the US that is open to thinking outside of the box with the treatment for this. This is ridiculous. Were just all alone, and have no one that wants to help us. We talked about it and honestly our current RE has the best statistics in MO, but she really isnt that great, it feels like all these Dr's have the same protocols for everyone and they push everyone through the infertilty line of treatments, everyone is different and should be treated on a case by case basis.

Im even confused about IVF now, I dont know if I want to go through it with our current RE. Especially if she doesnt think any kind of precautions should be taken for the MTHFR mutation. Yesterday Jason said, "We have a 50/50 shot at IVF (my RE's sucess rates are around 48% for women 35 and under) so say you actually get pregnant, then going by our track record you obviously have a HUGE risk of miscarrying" He is right, theres probably a very very slim chance I will get pregnant, and then on top of that get pregnant and not miscarry.

I dont know what to do. Honestly, Ive said this before but I dont know what to do. Im lost and sick and tired of it all. I cried way too much yesterday and this morning and my life isnt what it used to be. I dont know if we should just brush this all aside for a few months and let myself heal for a bit (As Jason said) or if we get even more aggresive and find someone who is willing to treat more aggresively, thing is there are barely any RE's in my area and weve already been to two of them, Jason says he doesnt care where we have to travel too, though. I dont know. Im so confused and so worn out.

This place is so amazing and I love that I dont feel alone on here. But its not "real life" so to say, its not here in person. I need someone here to talk to and get through this with. I know I have my husband but I feel that it would be so helpful if I had someone here IRL to talk to. Not a therapist, but someone who has been through or is going through this.

Im SO sorry if im not the host you guys deserve for the next couple of days. I will try my hardest though.
Cycle #1-9 - All Natural....5BFN's, 4BFP's (all ended in miscarriage)
Cycle #10-11 - Met with first RE, diagnosed with heterzygeous MTHFR mutation & slightly low SA on all counts. -BFN, Cycle #12 - First IUI+Trigger - BFN, Cycle #13 - BFN
Cycle #14-15 - Met with new RE, diagnosed with a blocked right tube that previous RE completely overlooked or didnt care to mention. Soy (120mg) - BFN
Cycle #16 - Clomid (100mg) - BFN, Cycle #17 - Clomid (100mg)+Trigger+IUI - BFN
Cycle #18 - Acupuncture+Clomid (100mg) - BFN
Cycle #19-27 - 2 Soy (160mg) cycles, the rest all natural also 30lbs lost!! - BFN's
Cycle #28 - New RE is GREAT! Put on bcp 7/6/11, Lap surgery 8/1/11- Tubal cyst (5cm) found and removed, Uterine Septum removed, and Stage II-III endo removed. Cycle #29 - All Natural - BFN, Cycle #30 - All Natural - BFN, Cycle#31 - All Natural - BFN, DONE TTC FOR NOW

Last edited by ♥Ashley♥; March 15th, 2011 at 08:32 AM.
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March 15th, 2011, 08:44 AM
MommaLee's Avatar Platinum Supermommy
Join Date: Mar 2009
Location: Texas
Posts: 8,986
I'm sorry Ashley. I will PM you my number...I know I haven't been where you are but I am someone IRL that will take time out and talk to you.
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March 15th, 2011, 09:08 AM
Hoping To Be A Mommy
Join Date: Aug 2010
Location: TEXAS
Posts: 3,638
I am so so sorry babe. I will seriously pray for you to find the perfect doctor for your needs. Please look for doctors. I will even help you if you want! Do not give up babe! Some doctors are so jaded, but not all of them, I promise! Please don't give up! I want to help somehow.
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March 15th, 2011, 09:20 AM
~*Jackie*~'s Avatar Platinum Supermommy
Join Date: Apr 2008
Location: The Land of Infertility
Posts: 16,586
Big hugs and lots of love, Ash. I also agree with Maggie- don't give up on the right doctor!! I can't remember- the doctor that put you on Folgard-- is his success rates a lot lower with IVF, etc? I know it's been quite a journey and I can't remember exactly what is was about him that made you move to the lady RE. Sorry! I'm just wondering if that doctor would be willing to try Lovenox or something similar since he was on board with the gene being a cause for your miscarriages?

I was thinking about you last night- I'm so sorry that the appointment went this way. I will say, most OB/GYN's are clueless about this stuff- they don't get it because it's not their cup of tea, so please don't let her deter you from getting what you need/want!

You have my number. I know I'm not there to hug you in real life, but you can always count on me to vent to/talk to/ cry to- call me or text me any time at all, girlie.
Our TTC journey: 6 cycles Clomid, lap surgery/ D&C, IUI, 2 x IVF; 41 cycles- BFN.
IVF#1 (March 2010) Transferred two 8-cell grade A (perfect) embies- BFN and heartbroken.

IVF#2/FET#1 (Jan/Feb 2011):Transferred two (7&8 cell) grade A (PERFECT) embies- BFN again.
IVF#3/FET#2 (November 2014) Transferred two perfect blasts- First BFP Ever.

BABY BOY- JULY 2015 @ 34 weeks 6 days

Our family is now complete. The End.

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March 15th, 2011, 09:36 AM
KMH KMH is offline
TTCMA Cheer Captain
Join Date: Sep 2008
Location: right of center
Posts: 19,318
Oh, Ashley...I want to get in my car and drive to MO to give you a hug. I can't imagine how frustrating it felt to have that doctor tell you "no," and basically dismiss your concerns like they were nothing. I want to find that doctor and shake her!

I agree with the other girls...please don't give up. There HAS to be a doctor out there who will help you.

Don't you even worry about hosting...take all the time you need, and just do what you can. I'll hold down the fort.

Melissa & DH
IVF babies Claire (5), Abigail (3) and George (3)

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March 15th, 2011, 09:45 AM
Toots216's Avatar Super Mommy
Join Date: Apr 2010
Location: PA
Posts: 684
I'm so sorry you have to go through this Ashley, uggggh!!! I would definitely look into traveling to a new RE who would be willing to listen to you - we are paying these people for their services and they should be standing on their heads to help us out!

Random question, but do you have any family members or friends who are doctors? If you do, maybe they can refer you to a doctor (even just a regular OB) who would be willing to prescribe the shot for you. Sometimes doctors are more willing to listen to their colleagues rather than us (even though we have researched the crap out of an issue)...
Also, I would think that a regular old family physician would be able to prescribe Lovenox if you have one that is willing to hear you out.
~Kristen - 36
~DH - 32

9/27/10 @ 7w1d
12/3/10 @ 5w4d

Our rainbow baby, William Patrick, finally arrived at 39w5d on 2/23/12!
7 pounds, 19 inches of healthy baby boy!
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March 15th, 2011, 10:07 AM
Platinum Supermommy
Join Date: Aug 2008
Location: St. Louis, MO
Posts: 5,620
Ashley, I'm so sorry to hear that all of this is happening to you. I wish I could do something to make things better for you, I really do. I would be more than happy and willing to give you the name and number for my OB whom I absolutely LOVE. I can't guarantee what his thoughts are on your issue, but I know he has been super supportive of me. He sent me right away to get tested for PCOS (rather than waiting). Or at least, maybe he would know someone that could help you. I'm grasping at straws, but it's worth a shot to at least call their office and maybe get a phone consultation (so you don't have to make a whole appointment just for him to say no).
Mommy to Noah (4.5) and Emilee (2.5)

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March 15th, 2011, 10:59 AM
Sota's Avatar Mega Super Mommy
Join Date: Nov 2008
Posts: 2,572
I'm so sorry Ashley. Like everyone else said, don't give up yet. It can take awhile to find a doctor that is the right fit and will listen to you. I wish there were something more I could do for you.
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March 15th, 2011, 11:06 AM
*CAMM*'s Avatar Platinum Supermommy
Join Date: Jan 2007
Location: somewhere over the rainbow
Posts: 7,986
Ashley, I know its a drive..but in Overland Park there is a really great RE office. Reproductive Resource Center. Im pretty sure they use lovenox...i remember reading a post from a lady who was going there and I swear that she was using lovenox.

Its kind of a pain to get an appt..you have ti fill out a bunch of crap and send it in THEN they call and get you an appt...but they are the largest and best in the KC area.

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March 15th, 2011, 11:29 AM
Jessie0505's Avatar Finally a Mommy!
Join Date: Oct 2008
Location: Japan
Posts: 4,016
Aww..sweetie! Im so sorry you are having to go through all of this and sometimes even though the dr is in that field..they dont ALWAYS know what they are talking about! We know our bodies better then anyone else does..i wish they would get that through their head..but all they can think is money!

I do have a suggestion for you..I dont know how far Oklahoma City is..but you might look into them..i would go travel from Tulsa (when i lived with my mom while dh was gone) and go to the Center for Reproductive health..They were soo sensitive and caring..and their success rates arent the BEST but they are great! So maybe check them out..Girl they were so awesome..when i moved away to AZ and was there almost 2 years..they called me to see how i was doing and if i had success yet! I LOVED THEM! But if its too far..i understand just wanted to throw them out there! I sure hope things start too look up for you sweetie..i cant make that decision if you should hold off or not..as i have been where you are..but everyone is different..for me..i kept going...i wasnt giving up at any cost to have that baby in my hands one day..But i dont know if you have the strength anymore...(not in a bad way..sorry if it sounded that way) But i wanted to just give some suggestions! BIG HUGS! and i hope you find peace!
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March 15th, 2011, 12:11 PM
*SamF*'s Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 16,621
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I'm so sorry Ashley! I lurk over here a lot, especially after having decided to go back to my RE again.
If Columbia isn't to far I'd be happy to send you his info, he has been awesome, and does think outside the box on fertility issues.

Last edited by *SamF*; March 15th, 2011 at 12:14 PM.
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March 15th, 2011, 01:43 PM
MommytoaMiracle's Avatar Platinum Supermommy
Join Date: Nov 2009
Location: North Carolina
Posts: 10,571

I have a mind to drive to Missouri & give that doctor a piece of my mind for you! How DARE her!? Ugh!

I'm so, so sorry, love! SO sorry!
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March 15th, 2011, 02:20 PM
JulieC's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Massachusetts
Posts: 3,436
I'm so sorry you are going through this! I pray you find a DR who will listen to you! Don't give up hope!!!
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March 15th, 2011, 02:43 PM
ETanny's Avatar Mamma 2 Moo & Pops
Join Date: Feb 2007
Location: Hull
Posts: 19,770
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Oh Ash! I just dont know what to say to make you feel better.
You deserve a much better Dr then the ones you have been seeing.

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March 15th, 2011, 03:31 PM
brynnkelley04's Avatar Mega Super Mommy
Join Date: Jul 2005
Location: DeWitt, Michigan
Posts: 3,164
I'm really sorry Ashley, I hope you and I both can hold little miracles in our arms really soon.

I wish you lots of luck finding a new doc.

Brynn 30,
Rich 41, Marcus 11, Gavin 8
~~IVF #4 using Donor Eggs=BFP
~~April 18th 1st U/S=TWINS! Baby A 128bpm Baby B 124bpm

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March 15th, 2011, 04:08 PM
ccartanddesign's Avatar With Faith
Join Date: Dec 2010
Posts: 997
I'm so sorry you're feeling so discouraged. Please don't give up!
Me-38 DH-38. TTC #1 since August 2009
2/2011 - IUI + Femara + HCG trigger and Progesterone injection BFN
3/2011 - IUI + Femara + HCG trigger and Progesterone injection
4/2011 - not doing IUI - DH out of town
5/2011 - IUI with Femara and HCG trigger. In hospital due to infection from IUI.
Took a break from all meds this summer.
9/2011: - Start with new RE - testing begins.
10/2011: - Hysteroscopy - determine tubes are blocked.
10/2011 : - Laparoscopy - clip blocked tubes, determine right ovary is adhered to pelvic wall, cut adhesions
11/24/2011: IVF cycle #1 begins. Start stims.
12/2/2011: End stims. HCG trigger.
12/4/2011: Egg Retrieval. 9 eggs, only 1 embryo.
12/7/2011: Transfer.
12/20/2011: IVF #1 failed.
1/16/2012: IVF #2 first scan
"Humanly speaking, it is impossible. But with God everything is possible." Matt. 19:26
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March 15th, 2011, 04:17 PM
Super Mommy
Join Date: Jan 2011
Location: NY Baby!
Posts: 639
how rude and insensitive that doc is! i am sure you have tried this, but what about googling your diagnosis and finding docs in the somewhat vicinity that have experience in dealing w your condition

what are the side effects with the shot that she flat out, wont prescribe? maybe you could sign a consent form that you acknowlede the side effects and that it was against medical advice????
acgka; ALI

Married May 2010
TTC since August 2010, almost a year
IUI in December 2010 - BFP - chemical
IUI on 3/13/11 - BFN
April natural cycle - BFP on 4/22 - chemical confirmed 4/28
IUI done on 5/12 - BFN

IUI #4 done 6/6 - BFN
so sick of getting BFNs

total of 4 failed IUIs
IVF in July

using acupuncture 1x week, Royal Jelly, pre natals, organic Spirulina, Maca Root and Red Raspberry tea
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March 15th, 2011, 06:11 PM
ohnicole's Avatar Platinum Supermommy
Join Date: Nov 2009
Posts: 5,756
I'm so sorry It sucks when doctors just don't listen. I would recommend popping over to High Risk Pregnancy here on JM and asking the ladies there about their doctors. I know at least one of the girls over there is on Lovenox for MTHFR.
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March 15th, 2011, 06:52 PM
Join Date: Aug 2010
Location: Chicago
Posts: 321
I'm sorry about your doc situation. But don't give up hope of finding the right one! I HATED my first RE, everything was fine during testing...but after we sat down with the doctor I was so mad and unhappy, I got my records and got the h*ll out of there as fast as I could and now I really like the clinic I'm at....

Cycles 1-12 all BFN's. Going straight to IVF per RE advice.

February 2011 IVF
2.24.2011. Retrieval 16 eggs! 15 were mature and 12 fertilized!
3.1.2011. Transferred 2 blasts!!
3.2.2011. 4 "beautiful" blasts on ice
3.11.2011. IVF #1 unsuccessful

5.20.2011. FET BFP!! 82
5.23.2011. 83
5.25.2011. 130
5.27.2011. 168 devastated
5.31.2011. 293 (saw sac on u/s)
6.3.2011. sac not growing m/c confirmed

9.2011. Planning another FET
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March 15th, 2011, 08:12 PM
aogilvie's Avatar Super Mommy
Join Date: Sep 2009
Posts: 601
Hey Ash, this pisses me off SOOOOO MUCH!!!

I know exactly the situation you're in as I have a clotting disorder too (different one though - antiphospholipid syndrome). Most docs here in VA except for my RE (GP, OBGYN, and hemotologist) wanted to tell me that they didn't think I needed to worry about the disorder in regards to getting pregnant, staying pregnant, and being a healthy mom thoughout it all. They all wanted to say "chances are that you'll be fine". The thing is, I've had a stroke... when I was 20 and I'll be dam**d if I'm going to go through that again because they think "chances are...". BULLSH**!!! Plus, having the infertility issues, there was also no way that I would spend all that money on an IVF cycle when I could just turn around and lose that baby in the end.

Right before we started seriously asking for RE referrals, etc my DH and I moved across country and I had to start all over again with new docs and my hard-copy medical records. I felt like I was on a tightrope, waiting with bated breath to see what all these docs responses to my situation wer going to be. I had so much support from my previous docs in CA regarding the whole issue that to move to VA was really scary. And let me tell you, I didn't get much help, but I got enough... I got a referral for an RE from my OB, a open-ended "treat as you see fit" recommendation from the hemotologist, and I found an RE that would help. All of that was VERY purposeful on my part though, let me tell you. And my RE didn't prescribe the Lovenox until an IVF cycle. Lovenox is serious stuff, not to be taken lightly - you bleed like nobody's business for everything. But I think its fair with an IVF cycle considering all the money you're putting down and your need to do all you can to assist in its success. Then if ends in a pregnancy, they would keep you on it. What do you think about that? Move forward with IVF (if that's you're and your hubbies wishes), but with the stipulation that you get a Lovenox prescription. I think an RE could respect that and if he/she doesn't, find someone else. There's other folks around, believe me.

Oh and there's a generic form of Lovenox out there called Enoxaparin Sodium Injections made by Sandoz. This is what I took during my IVF cycle and while I was pregnant. Its great and about 10% of the price of Lovenox which is way more expensive.

Good luck! And things are going to work out, I promise (Listen to me, I wish I could learn to take my own advice!)
Ana-31 DH-32
TTC #1 with Endometriosis & Antiphospholipid Syndrome since December 2008
Dec 2008 - April 2010 #17 Natural cycles
May 2010 - IUI + clomid 50mg BFN
June 2010 - IUI + clomid 50mg BFN
July 2010 - IUI + clomid 100mg BFN
Sept/OC 2010 - IVF #1 (1 embryo transfered; none to freeze) BFP!!!
Oct 25 2010 - First ultrasound at 6.5 weeks TWO HEARTBEATS!!! The embryo split; we're having identical twins!!!
Nov 30 2010 - Ultrasound at 11 weeks; no heartbeats & no growth past 9 weeks
Dec 2 - D&C#1
Dec 7 2010 - D&C#2
Dec 22 2010 through current - Weekly acupuncture treatment
May/June 2011 - IVF#2 with acupuncture (1 embryo transferred; 4 embies on ice!!!) BFP!!!
June 29 2011 - First ultrasound at 7.0 weeks. Everything looks great so far!

July 18, 2011 - Second ultrasound at 9.5 weeks. Baby is doing great!

Feb 10 2012 - Molly Eileen arrived at 7lbs 11oz and 19inches!!!

Last edited by aogilvie; March 15th, 2011 at 08:15 PM.
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