Friday, January 16, 2009

This is my story living with PCOS, MTHFR mutation, Factor V. Lieden and losing 3 confirmed pregnancies and 2 un- confirmed pregnancies:

This is my story living with PCOS, MTHFR mutation, Factor V. Lieden and losing 3 confirmed pregnancies and 2 un- confirmed pregnancies:

I got my period when I was 9... They were extremely painful, heavy and irregular as a teen (and funny that they relate PCOS to obese women.. I was stick thin throughout my entire teens) So PCOS can be on anyone I guess. Well.. we never thought anything about it till 1999 I decided to see a doctor.. my periods were so severe I missed out on school every month!! It was really bad. Well the doc did a blood test to check my hormones and they came out that my "feminine" hormones were low and that "testosterone" (the male hormone) was dominant. that cause me not to ovulate at all.
then he followed by an ultrasound revealing a LOT of water filled cysts on both rather enlarged ovaries. At that age I didn't really get what infertility meant. I never thought of it again and continued my life. I met the man who is now my husband in 2000.
We started dating and well in 2003 we got married and I was wondering about "something" a doctor once said. So I decided to go back to the doc after all those years and yup.. still the same. PCOS.
I explained how I was ready for children so doc put me on Clomid and Metformin and a shot too...
I got pregnant first try. But I had many complications due to PCOS.. high blood pressure the whole way which resulted in early delivery of my son at 34 weeks. Thank God he is my true miracle , he is almost 5 now!
My story just starts there... when he was 9 months I wanted to try for 2 and underwent the same fertility meds.. again getting pregnant first try. but.. unfortunately I miscarried at 6w2d. It was really sad. I didn't handle it well so I didn't even seek medical help till a year later to TTC ( try to conceive) again. ( by the way in all that time my periods were close to nonexistent)
then in June of 2006 I underwent fertility meds again (the same ones) and BINGO!! pregnant agian1!! and again at 6w4d .. my WORST NIGHTMARE AND FEAR! Miscarriage 2.
My heart.. I couldn't take it no more. I just.. I still don't have words to explain how much it hurts. So much!!!
The doctors found out the reason for my miscarriages.. low progesterone. ( related to PCOS?? maybe) SO I just didn't want to see a doc again. So I decided to try again in 2007.
Problem... I skipped Jan-Aug ( my period.. none at all) and finally on Aug 28th I got my freaking period. It LASTED ALL THE WAY TILL OCTOBER 24th!!!!! almost 3 months of HEAVY PAINFUL BLEEDING!! I passed out with extreme anemia. The doctors couldn't believe my case. They said I had the worse PCOS case they have ever encountered.
( Lucky me.. uughhh)
Well the doc was really touched by my story and how desperately I wanted a child.. a sibling for my son.. and she referred me to this specialist.
He said before I even thought of trying he had to regulate my cycles (periods) so he put me on birth control pills for 4 months ( that was the plan at least) and then he would "experiment" with meds.. Can you call me Lab Rat??.. I think that would suit me perfectly.. no gunny pig!!
Guess what??.. I started BC pills and never got my period!! I skipped Nov and got it on Dec...then skipped Jan & Feb 2008 and then on March 1st My period!!!
I kept on using the darn pills and got my period on April.. the doc was ready for me to try again. He put me on 200mg of CLomid (this time the highest dose that's how bad I was) and 1000mg of Metofrmin and a progesterone cream ( so I don't miscarry again) I started all that on May 21st ( my period) and I used ovulation tests, you name it. I did everything. cycle day 20 came.. I tested.. nothing. cycle day 30 came by.. nothing....cycle day 40 passed by.. nothing!!!!!! cycle day 50 passed by.. NOTHING!! NOTHING!! NEGATIVE NEGATIVE!!! I was at the verge of depression.
OMG cycle day 60 came by..NOTHING!!!
then.. on Cycle day 62.. in the night... I sobbed. no I wept. I felt like my son was most likely to be my only one.
I cried myself to sleep.. so bad hubby even cried. He did everything to help me conceive. nothing.. my heart was just numb. I couldn't even cry anymore. on cycle day 63 like at 6AM I had like 4 pregnancy tests left and I decided to use em.. just for the heck of it! (excuse my language)
I peed on one (first response) As soon as the pee hit the "Test" line.. nothing happened. through blurred eyes (with tears) I threw it in the cabinet and left to bed....
Crying all over again.. my husband hugged me.. and noticed I left the bathroom lights on.. so I got out of bed and went there to turn it off. Something told me to look at the darn tests.. and OMG!!! My eyes couldn't believe what I saw!! 2 lines??.. Is this for real???
so faint... but there. If I say that I cried, laughed and screamed at the same time .. would you believe me???
this was my test that day.. so faint. (here's the pic)

I ran to hubby and after turning on the light.. he squinted and said.. well I see "something".
So we went later on that same day to the doc.. and they did a test and confirmed I was pregnant ( 7/22) . So they calculated from my last period ( 5/21) that I was 9 weeks along. I was like..eeerrrrr... no wait. no. I didn't find out till cycle day 63 there is no way I was 9 weeks. So she said ok lets do an u/s. I was so right! Fertility meds and all.. even if I started them on May 24th.. I did NOT ovulate till JULY 1st!!!! ( 200
So as I said I was so right.. the u/s revealed I was barely implanted I was more like 3 weeks close to 4.
Well.. at least my pregnancy was confirmed. But.. the doctor said... test again in a couple of days.. if the lines are faint then we need to see you.
so on Aug 1st I decided to test again and OMG!!!! ( here's the pic)

That was the darkest test I have ever had! So I called the doc and she said.. well you are good to go cuz I gave you progesterone.. I need you to be 8 weeks to do the next ultrasound and actually "see something"

Well I got lucky.. the nurse called me that someone had canceled and she told me to come in on 8/15/08.
Well we talked about my history and all that stuff. At first the doc did a tummy u/s and she didn't see nothing.. so she told me my bladder was full and to go empty it.. ( the fact that she didn't see anything had my brain thinking all sorts of stuff. .. I was in the verge of tears..) So OMG my heart pounding in my throat with anticipation she still had the screen towards her so she did the vag. u/s. she was silent.. then she said "yup" and I looked at her questioningly.. she turned the screen and through blurred eyes with tears I sobbed so hard of joy that I was shaking the bed..LOL
I made the doctor CRY!! HEHEEH

She said she has never had a patient react that way.. and I say you have no idea the pain I went through to finally see this miracle. OMG I'm tearing up!! Sorry...
I thank GOD almighty for blessing me!! Thanks to him he made the CLomid works.. and since I lost my 2 prev babies on week 6 when she told me the baby measures 7 weeks I was overjoyed. That heartbeat. OMG!! What a beautiful sound!It was music to my ears!!
What a great thing it is to finally have this life in side! what a wonderful blessing!!!!

unfortunately on 9/11/08.... my angel grew wings.... I'm devastated all over again. Not my happy ending huh?.. sniff sniff.. Please God stop my tears, stop my pain, I'm brokenhearted!!!!!
I was 11w1d but the baby was already dead since week 10. RIP my sweet angel go play with your 2 siblings in heaven.
So here I am , empty arms, empty womb and brokenhearted.all over again.
Among all of this... there is something deep in my heart saying.. "it will happen.. DON'T GIVE UP JUST YET"
I won't. I WON'T!!!!!!!!!! Here is to 2009 and a baby I won't give up on.. I know I will rejoice with baby news.. in 2009. I can feel it in my heart.

...Soooooooooooo.. continuation...
AF has been pretty much rare.. 9/12 I got a D&C... first spotting Jan30th on and off throughout Feb. March 4-8 red bleeding AF I assume.. then stopped... I was Trying but not really not taking meds or anything at all to TTC..
sooo .. I'm assuming this is my miracle.. TRUE miracle... and if words could describe how I feel right now.. crazy, excited, scared, happy, sad, nervous, about to puke... holy mother of Jesus!!!!!!!!!!!!

..Updated 3/28/09
I went to ER had a BT done I was not even priority of course since it was not en emergency) so I waited all friggin day long.. anxiety killing me!.. HCG was not high enough to be positive.. am bleeding.. suspected Chemical preg. or blighted ovum.. no u/s done.. just gave me a paper with that info... but the bleeding confirms all is over now...
One day.. ...
One day.....
it will happen......
One...... Day.

I bled for 6 weeks went to ER twice nothign was done.. NOTHING AT ALL!! I ended up going to planned parenthood and got one box of Oral contraceptive ( BC pills) the bleeding stopped 3 days after starting the BC pills. I had a pap done.. cancer scare.. but came back clear!! YAY! June 1st FINALLY arrived.. I got my Health Insurance!!! YAY!
So AF decided to come back June 3rd
I called in the Fertility Clinic I was eying for MONTHS now.. Made an appt for June 11th!
So since June 11th this is what has happened so far:
June 11th 2009: That day came after MUCH anxiety and hope I guess.. the Dr??. .WE'RE IN LOVE WITH HIM!!!
We spoke about EVERYTHING .. EVERYTHING and he gave me such a long list of tests to do I a still overwhelmed 3 days later. LMAO But here's the plan.
PLAN: Get all the necessary tesst done in THIS cycle.. to get ready for the next step. The doctor wants to do somethign different in terms of TTC this time around and our best option is IUI. ( Artificial Insemination)
June 12th 2009- Hysteroscopy : insertion of camera through the cervix into the uterus to take pics of uterine walls
what they found: Polyps and scar tissue form my D&C's.
Blood work both hubby and I : checking for genetic stuff and hormones all that fun stuff
June 13th2009 - transvag u/s revealed of course cystic ovaries both sides.. good news??.. cysts are small YAY! ( but a lot )

Before June 18th : Hysterosalpingogram :

June 19th 2009: Biopsy where they do the same hysteroscopy but this timre with some sort of tool to cut out polyps and do a Biopsy
Before next cycle hubby has to give sample of Semen for analysis, elimination of bad ones.. and freezing those to use on the IUI day I suppose in July.

so 28 days from June 3rd my LMP we will start injectables ( of course if all the lab tests come good) and hopefully we will get preggers in July. crossing our fingers, toes, hair , arms and legs.

July 22nd: All our results came back PERFECT!!!!! Everything was normal genetic testing biopsy EVERYTHING! We are ready to go!!!!
This is the Clinic and Dr. I'm seeing is Suna M. Qasim

So I have not gotten my period since June 3rd and by the end of this week I will get it induced to undergo the following fertility treatment for August 2009:
I found some videos that show what I will be doing.

First I will be getting some shots ( Gonal-F) to kicks my ovaries into making eggs( plus oral pills like Metformin ( glucophage) to help my insulin resistance, baby aspririn and a prescription for my HB pressure)
I will have an ultrasound every other day to measure the follicles that contain the eggs, around cycle day 10 if they see a follicle big enough with a mature egg they will give me one last shot called Profasi ( HCG shot) which will rupture the follicle therefore releasing my egg)
that day my husband has to hand in a fresh sample of semen where they quickly process in a lab to flush out the bad one and they put the good sperm in a serum which they insert into my uterus via a catheter through my cervix.
it's a lot but it will all be worth it. Once the actual IUI is done then I will be in the 2ww waiting to test and 14 days after they do a blood test to confirm if it was successful or not. ( hoping it will be)
Here are the videos

Gonal-F shots: ( WARNING Graphic)
IUI: ( WARNING Graphic)

here's my update:
So...... here's the deal.. I got my period (on it's own) on Friday 8/7/09 at 4PM and called the Fertility Dr ( as they were waiting for AF to start me on meds for the IUI)
My meds won't be here till next week and it will be too late to start em.. I do have some for 3 days ( they give you 3 of everything to hold you for 3 days till you get the meds from the pharmacy) but they won't be enough to hold till my pharmacy ships my meds ... so I'm saving them.. sigh for next cycle. It won't kill me.. I'm on CD4 so I have to wait 24 more days to get provera ( a hormone pill that makes your AF come mine take 3 months or more to come so that's why I need it) to start my period then and THEN get the party started. I have a prescription for Glucophage ( Metformin) to start this week... and for now this will be it once I start the IUI meds and have the sperm inserted into my hoo-ha I have here with me the progesterone suppositories I will be using till I get a BFP! ( hopefully I will)
As of all of my lab work, blood tests, biopsy etc etc.. everything came back fine! ( THANK GOD)
BUUUUUUUTTTTTTT... here's a NEW diagnosis.
As if I don't have enough!

I'm officially diagnosed with
MTHFRmutation ( nooo not mother f***er ok?.. tee hee heeee)and Factor V. Lieden
Factor V Lieden
MTHFR mutatiotn


As per my last annoucncment about my diagnosis I got that over the phone.. so today I went in to sit down and talk things over. Again this is my perinatologist the high risk pregnancy Dr who I will be handed over after I achieve pregnancy with my fertility Dr.
uumm so I have PCOS, MTHFR mutation ( genetic) and I have Factor V Lieden.
All combined are pretty much the cause of my losses.
Factor V Lieden causes many heart, vascular problems I already have the beginnings of an the Dr said left unreated he doubts I make it past my 40's or 50's.
1 out my 4 children WILL come out with this mutation if not serious complications.. whch makes so much sense as to why I had Erick ( a normal baby) and lost every singel pregnancy after him.
Left untreated Iwould miscarry and miscarry and would have never known it was this.
on the bright side I have ANSWERS..yes more than I wanted to hear.. but now we know WHY.
and the best part of all I'm STILL ON TIME!
I asked so.. does this mean I cannot concieve? He said with treatment your chances of conceiving is just liek anyone elses.. is the pregnancy persay that needs to be watched an monitored closely.
Now here's a huge battle right now... I don't belive in abortion. And GOd with all my losses the thought of ever terminating a pregnancy is painful. But what if I have a baby with serious problems like spina bifida and deformity... should I let my baby die in my womb liek many women I admire have.. or should I do something so against my beliefs as terminating?
My husband made it very clear that if a baby comes out with genetic issues he will want me to terminate... and that hurt me.. so bad.
I'm the least person you would think of having an abortion. I know I'm not there yet.. and hopefully I will NEVER be in those shoes...
but the "what if" is a question thats sturring up some stuf in my head.
well this is my update. I'm waiting till after my birthday ( sept 14th) to save up & buy my medicine for the IUI. Once I have the meds shipped over I get provera and get things started. I'm on cycle day 21 and my periods come every 2-3 months so I have time .
The Fertility Clinic kinds lends you 3 days supply of the medicine which I have in my fridge but its not enough I need to buy my medicine to do the IUI.
so those wondering when it will finally start well.. lets say by Mid September.

I'm so happy I can do 20 cartwheels right now! ( If I knew how to do them!!!!!!)
the DOCTOR just called... right now... I called in yesterday about my concerns about not being able to buy the meds.. and if he could put me on something cheaper like Clomid. guess what???? He.. he said patients who have left over medicine donate it to the clinic.... aaannnnddddddddd..the clinic is donating the meds to me.. OMG!! OMG!!!!!!
You know what that means?? I'M DOING THE IUI NEXT MONTH BUDDY!!!!
I'm on cycle day 9 right now so it's too late to start them... so next cycle it will be.. he also said my blood count was low ( remember the heavy bleeding last weekend?) so he said take this month to take Iron, pre-natals and gear your body up for ACTION NEXT MONTH!!!!
hubby is picking the meds up in a bit!!!!!! OMG OMG OMG!!!!!
I'm DEAD serious in tears, nervous... EXCITED!!!!! I waited 5 yrs and much heartache for this day... I love this Doctor I wish I would have found him before!!!!!

So yes today I got my period.. YES 63 days since my last one! Blah!
but FINALLY it's ON!
I start IUI meds on 11/19/09
and will have the IUI done sometime around the last weekend of Nov
hoping for a BFP around the 2nd week of December!!

Cycle day 10 ultrasound revealed 4 follicles on my Rihgt ovary and 2 on my left.. from which one is dominant on BOTH ovary.. one measuring 10mm and the other 11mm. Dr said they are very good for CD10 but they need to grow a little more till at least 18-20mm in order to trigger ovulation ( trigger shot)
So I have 3 more days of Meds and getting an u/s done on Monday. Hoping at least one of the TWO is good for ovulation. I'm a little nervous I have two good eggs TWINS !!!! We are aware.. and are ok. Nervous but ok.
Praying my follies GROW!!!
"Ones best success comes after their greatest disappointments."

Sooo as of Friday you might or might not know I had 2 "best" eggs ( or follicles right? ) one measuring 10mm in my left ovary and one measuring 11mm on my right ovary.. The Dr upped my dose of shots from 75Iu to 250Iu starting Friday night, Saturday and one in the AM today ( which I did already)
Well today I got measured again and the egg on my left ovary stayed at 11 mm so it's not potential anymore ( Boo for no twins) buuuuuttt the one beautiful eggie on my right ovary is at 19.4mm TODAY!!!!!!!! ( they have to be 19-20 mm to be ok to ovulate)
The Dr assured me that by tonight it will be at 20mm and told me to go ahead and trigger with the ovidrel tonight around 9PM. I am scheduled for the IUI tomorrow at 8:00 AM hubby has to go in at 7 AM to process and wash his sperm... We are overly excited yet nervous.
We are told to have intercourse the day and 3 days after the IUI just in case. so this week I will officially start my 2 week wait
Crossing my fingers and toes this eggie is my miracle. I'm READY!
Wish us luck!!!

We had our IUI done this morning I'm officially in the 2ww!!!! WOOHOOO!!!

12-18-09 AF showed up it was a FAILURE
Let's see if 2010 brings us our miracle!!!!

We will attempt a 2nd IUI on February 2010.

I will update as things start happening
thanks for reading this.
prayers appreciated.
here's some awareness I will be spreading the word about
Factor V Lieden
MTHFR mutatiotn