No one knows....possibly some sort of pituitary genetic mutation. Childhood was Dx as Growth Hormone Deficiency/Panhypopituitarism but neither of these are accurate as an adult. Whatever the cause, my monthly cycle has only come on its own without medication approx. 5 times since age 17. Ovulation naturally? Hmph...wonder what that is like, LOL
In addition to my lovely rare genetic issues, I also have:
Factor V Leiden-
clotting disorder (clot too quickly)
http://www.mayoclinic.com/health/factor-v-leiden/DS01083
Urticaria Pigmentosa-
External mast cells that activate with heat/cold & friction. This is super fun for PIO injections. Ugh!
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002437/
Oh yeah...I also have an Arcuate uterus!!! Yay me!!
http://radiopaedia.org/articles/arcuate-uterus
My medical journey thus far, as relates to IF:
1991-
Many MRIs & bloodwork due to no growth.Originally Dx w/ Panhypopituitarism and Growth Hormone Deficiency &put on GH injections(10yrsold)
Teeth never fell out....countless oral surgeries
1996-
Went through puberty on my own--PHP dx questioned
Bone plates closed so GH stopped(15 yrs)
1998-
Amenhorrea (no period) BCP started(17 yrs)
1998-2009-
No period w/o BCP or Provera
2009-
January - Met my husband
July - Dx with Factor V Leiden after 3 clots & taken off BCP
August- "seeing what happens"
2010-
January- Got engaged
October- Got married
All the while----Monthy OPKs all negative, no smiley
2011-Still no smiley on the OPK
March - testing through OB/GYN
HSG all clear but dx w/ Arcuate uterus
June&August - SA all clear
October - 1st RE appointment @ Northwestern in Chicago
November- RE referred to new Endocrinologist at Northwestern
::series of Endocrinology appointments/tests/procedures::
2012--
March- 50mg Clomid & no response/start Menopur
April- IUI #1 - BFN
May- IUI #2- near overstim- BFN
--IVF recommended
June - IVF consult @ Northwestern-developed severe migraines
July- Neurologist Appt.- given clearance for IVF
IVF #1 started (Lovenox/Menopur 150iu/Follistim 75iu/& Ganirelix starting day 5) cancelled due to adverse reaction to Ganirelix
September- IVF #1.2 (Lovenox/Menopur 150iu/Follistim 300iu/ 10units Microdose Lupron twice a day) - 19removed, 11 mature, 5 fertilized- Only one made it to an 8cell - BFN
November- IVF #2 (Same protocol as IVF #1.2)- 11removed, 7 mature, 5 fertilized- two became 5 cells and three were only 3 cells- Transferred both 5 cells w/severe fragmentation- BFN
December- Starting daily DHEA and CoQ10 supplements. SIS on 12/3 and Endometrial Biopsy on 12/17 -- Starting IVF #3 stims on 12/28/12
2013--
January- IVF #3 (Same protocol as IVF 1.2 & 2) adding Tev Tropin, a HGH in addition to the supplements that began in December. -- 19 Retrieved, 11Mature 8 Fertilized-- Transferred (2) 8cell A- , AH embryos with minimal frag. Other 6 left to culture. One grew to blast but poor quality other 5 stopped completely- Beta = BFFN.....wtf?!?
January 2013- obtained multiple second opinions from local REs and also SIRM in St. Louis and CCRM in Colorado.
March 2013- Back to Endocrinologist. Thinking maybe a genetic mutation and Adult Growth Hormone Deficiency. Had IGF-1 levels retested. Came back normal.
May 2013- Growth Hormone Deficiency ruled out by normal stimulation test. URGH!!!! New RE will still cycle us with OE whenever we're ready.
June 2013- IVF #4 begins on June 14th! This time 525iu Follistim and 5units low dose hcg. In addition to my Lovenox of course but also adding baby aspirin in too. ER--45 retrieved, 31 mature, and 26 fertilized!!!! ET-- 2 perfect expanded blasts and froze 7 pretty blasts. Spotting started 5dp5dt and full fledge AF by 6dp5dt. Beta was <1 as usual.
July 2013- Prepping begins for FET #1-- Reclipsen (BCP) for approx. 3 weeks, overlapping at some point with Lupron. Then Lupron will overlap with Estrace....5 days of PIO (yes going back on the butt shots) then FET to follow in August sometime.
August 23rd, 2013- FET #1
August 27th- First squinty line at 4dp5dt
August 29th- First positive on the digi
August 30th- First beta= 31.6
September 3rd- Second beta= 267!!!
It's a boy!!!!-- John Patrick ("Jack") due 5/11/14
December 16th- Jack was dx w/ Dandy Walker at his 19week anatomy scan
December 19th- Admitted to hospital for early preeclampsia and HELLP
December 23rd- Jack was born sleeping at approx. 8:30am
March 14th- Diagnostic Hysteroscopy scheduled and cancelled for positive pregnancy test
March 17th thru 25th - Beta hell in what seems to be a spontaneous pregnancy but C/P
Fun Facts
As of September 21st, 2013 my journey has consisted of 291 fertility related injections...not including the Lovenox that I am required to take due to my FVL diagnosis.
I also like to take injections in unusual locations...not by choice of course....
- Bathroom of a Funeral Home
- Bathroom while babysitting
- During a Mary Kay party
- In restaurant bathroom on my anniversary
-During a NYE party in the bathroom
- In my car in the parking garage at my RE
-In the bathroom of a restaurant during a Bachelorette Party
-In the bathroom of a restaurant during a going away dinner
- In the bathroom at the home of an elderly couple I was a caregiver for
- In the bathroom at Giordanos during a GTG of 3T girls!
-In the car while parked at a truck stop during a thunderstorm somewhere in Kentucky (winner winner chicken dinner, lol)
I also like to take injections in unusual locations...not by choice of course....
- Bathroom of a Funeral Home
- Bathroom while babysitting
- During a Mary Kay party
- In restaurant bathroom on my anniversary
-During a NYE party in the bathroom
- In my car in the parking garage at my RE
-In the bathroom of a restaurant during a Bachelorette Party
-In the bathroom of a restaurant during a going away dinner
- In the bathroom at the home of an elderly couple I was a caregiver for
- In the bathroom at Giordanos during a GTG of 3T girls!
-In the car while parked at a truck stop during a thunderstorm somewhere in Kentucky (winner winner chicken dinner, lol)
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