Hypothalamic Amenorrhea BFP

I've been tracking pregnancies on the fertilethoughts hypothalamic amenorrhea thread for about four years now. I think that the stats are quite interesting, and definitely belie the common wisdom in the RE community that A) women with HA can "gain 50lbs and still not get their cycles back", and B) "Clomid doesn't work if you have HA". To wit:

Total pregnancies: 240

First post-HA pregnancy: 190 pg
Natural*: 54 (28%)
Clomid**: 52 (27%)
Clomid + injectables: 7 (4%)
Injectables: 47 (25%)
IVF: 27 (14%)

HA vets - subsequent pregnancies: 50 pg
Natural: 38 (76%)
Clomid: 3 (6%)
Injectables: 6 (12%)
IVF: 3 (6%) - one first from adoption, one from injects, one from IVF

m/c rate: 20%

Notes:
1. First post-HA pregnancy is not necessarily a first pregnancy as some develop HA after having a child already due to overexercise / underfueling.
2. I have grouped Femara and Clomid together in these stats
3. Due to miscarriages, some people are represented multiple times
4. Injectables is usually Menopur as with HA we need LH in addition to FSH to have the best response to injectable cycles. Some people have used FSH + hcg or Luveris. FSH alone is more likely to lead to cycle cancellation.
5. The proportion of BFP from injectables has decreased to about 17% if you look at the last three years only - since the Clomid extended protocol paper came out.

* 8 were natural after clomid, 5 of those after extended clomid
** 9 were extended clomid

CD4

No waiting to do IVF miracle for me this time around :( The crimson bitch showed up late Wednesday, so Thursday was officially CD1. I called the RE to let them know, and they said I should start bcp that night.

I took T to the grocery store, and figured I could pick up my prescription while I was there, perfect. Except they didn't HAVE my prescription. I called the RE again, but it was closing time so didn't hear back. I figured it wouldn't be a big deal if I didn't start the pill until the following day, so didn't stress about it.

The next day they called and said they had sent the prescription again. My plan was to pick it up on my way out in the afternoon. Except I would have needed to go in the opposite direction, and didn't remember until I was on my way. Oh well. I was going out with my girls later and thought I would grab the pills on my way there.

Well, i was about two minutes away from my friend's house in Boston when i remembered. Drove ALL THE WAY back to the grocery store near my house. fortunately I had 10 min to spare. i wondered if my subconscious was trying to tell me it was not on board with my plans. then i decided I'm just too tired i can't think straight.

I'm supposed to call on Friday to get the full schedule of when I start Lupron and stims. Good times.

Inspiration for Overcoming Hypothalamic Amenorrhea

There have been an number of great, inspirational posts over at the HA board on the FertileThoughts forum. I thought I would collect a few of them here (with the author's permission.)

LindsayAnn wrote 6/19

I am feeling hopeful...almost too hopeful...like if it doesn't happen I know i will be crushed...but even so I gotta tell you all that it is so worth it just to even respond to the clomid with that follie/lining and then to see the smiley OPK, ovulate, etc....just knowing i responded is great. It is worth this past year and a half plus of TTC on my own. Weight gain...lifestyle change, etc...worth it ALL and then some. So please everyone keep going. If I can get to the point of responding/ovulating then I promise you ALL can too. I treated my body like crap, complete crap...for years and years. No longer I swear to God I will never go back to that type of lifestyle

Lawgirl wrote 6/21

The word I keep thinking of is FREEDOM. It is so freeing not to be wed to a workout schedule, eating only certain foods prepared in a certain way at specific times. It is freeing to no longer calculate how I’m going to squeeze in a work out. Instead, I can be fully present at work and for the people I love.

LindsayAnn wrote

"...thinness does not equal fertileness....quite the opposite. Your body wants extra padding, a bit of fat and curves to signal it can carry a baby and enable a baby to grow inside of you. No extra energy/fat supplies = no way your body will enable an environment to create a new life. Where as a 'thin/fit' might have been your previous goal (mine too...ALL of us), your new goal (please correct me if I am wrong here) is "healthy weight/still beautiful (promise you on that)/baby-producing body'...and, in order to do that you really need to gain....I think even more than 10 pounds. I know that SOUNDS scary, but after the first couple pds you will realize it's not nearly as scary as we imagine it to be. TRUST ME ON THIS. Like I said, I an 5 feet tall...29 years old....I was living the past 10 years of my life 20-30 pds lighter than now (not kidding...lowest weight was 67pds....typing that now makes me shudder at how bad that was,,,I just didn't see that reality then...now I sure as hell see it!)......I look much MUCH better now. I promise you. My body is a lot happier now too...as is my mind. It was hard...it still is at times...but I promise it will be worth it soon once I have a baby. Actually, scratch that...it already is worth it. I am more satisfied, confident (who woulda thought)(even with my bad.fat feeling days...still I feel more sexy and confidant) and content in who I am and what life is all about. It is sure as hell NOT about a weight or a **** number. I am more than that. And, guess what? So. Are. You."

Jambaby wrote

"Oh... I also want to point out a few things:


1. the MOMENT you get your BFP, the weight gain (even a gruesome 30 pounds) is worth it. Immediately!

2. Even if you fail progesterone, keep on trucking. I ended up ovulating naturally only 6 weeks after failing it. So don't lose hope!!

3. I have NO detectable EWCM, ever. And I still got pregnant. So don't fret. (I used preseed).

4. I am saddened by my mistakes - 6 years of undereating & amnorrhea.... but really proud that our bodies CAN overcome this!!!!! "

Jambaby:

"I have to post this because I am absolutely ENLIGHTENED...

A year ago, I was still perpetually aiming to live off ~1100 net calories a day. I was maintaining my (thin) weight with that. And I truly thought that if I ever went over (to, say, 1600), I'd keep gaining and gaining and gaining...

Anyways, as of July 2010, I made HUGE lifestyle changes. I took the plunge because I wanted a BABY more than anything. As in, NO MORE CALORIE-COUNTING. I began eating WHATEVER I want, and then some. And now, 10 months later (full of "liberated" eating...), I realize I am NOT gaining. In fact, I haven't gained AT ALL since November!!!

So yes, truly liberated eating did result in slowly and steadily gaining weight over 4 months (as per my intent, anyways)... but after that, my weight just NATURALLY plateaued. I am still within a healthy BMI range!

And believe me, I have been eating TONNES. Lots of healthy foods, AND also a tonne of junk (oops! ). I don't think twice about reaching for that second (or third) cookie! Without calculating how many calories to burn at the gym afterward...

Anyways, so over the past 10 months I have been eating a net of 2200-ish calories per day... sometimes more, sometimes less... and the fact that my body has settled at a "happy weight" is absolutely Shocking to me.

I am posting this to show you (and show myself!) that indeed, our bodies WILL find a comfy, "happy" weight! So PLEASE do not fear "liberated eating". Now that I am on the "other side" (as in, eating LOTS, cycles have returned), even though I still haven't got my BFP I am truly 1000x happier than I was when I was restricting calories - food is enjoyment, and this basic enjoyment is an important part of living a happy life.

This is truly a lesson that our bodies DO indeed need those calories.. a lesson I was too "scared" to believe earlier. I worried that my metabolism was busted... and that I needed to stay at 1100 forever... but our bodies BOUNCE BACK! Believe me, OUR BODIES WILL SPEED UP TO ACCOMMODATE THE EXTRA FOOD INTAKE! And they will eventually find a "happy", healthy weight to sit at.

Anyhow, even if this helps just 1 person, then I am glad I posted this rambly "discovery"."

AngelWings:

"We have to remember:
a) we will never be 'fat' or even 'overweight'! And even if our weight gets a little higher than we'd like, we can make it come back down after we achieve our dream.
b) Never underestimate your willpower - you will never loose that desire to run/exercise and eat healthily. It's just on hold for a while while you TTC and reach your dreams. For ages i thought if i let it go, i may never get back my motivation. Now i realise that it's harder for us to go the other way, we are going against what is natural for us.
c) While we think we are turning into whales, the difference isn't all that significant. DH/partners will often comment on our long lost boobs. They look at the positives.
d) Pregnancy = weight gain. Temporarily. And to get to to the BFP, we have to start the process.
e) I'd rather have HA than some other forms of IF, like early menopause, severe fibroids or endometriosis. Or even some other unexplained form that is so rare a cure isn't known. We can reverse our HA with lifestyle changes and failing that, there are meds available that make us ovulate to give us as much chance as anyone. We are 'potentially' fertile, our eggs are just waiting for us to get our body into a healthy place ("reproductively" healthy!).
f) When i'm feeling down, i look around everywhere... not just at the people i want to be like. If we really look, we'll see that our bodies are still 'lean' and attractive. I'm not all "love yourself on the inside", because i know how much our appearance on the outside can control the level of happiness within. It's a combination."

Jambaby 12/17:

I'm re-inspired to keep plodding along. Here are my reasons to STAY POSITIVE/LOOK ON THE BRIGHT SIDE!!!!!

1. DH and I booked a trip to Disneyworld for February, and if I'm not pregnant by then, at least I won't be miserable with pregnancy nausea, and I can ride all the hardcore roller coasters
*And if I am pregnant by then, well I will be so thrilled about it that I won't mind touring the park at a slower pace/missing out on rides :P

2. I am tallying up how much extra money we will pocket for every additional month without a BFP. Essentially, the longer it takes till I go on maternity leave, the more paycheques I will receive, so the more it pads our savings account.... which means paying off our mortgage sooner, maybe I will treat myself to a nicer stroller (after a loong TTC journey, we all deserve nice strollers, lol), etc.

3. If I don't get pregnant in the next few months, I'll be able to squeeze in one more fun vacation with my hubby this summer, without being very pregnant (and therefore unable to fly) or overly uncomfortable.

4. Reminding myself that I am in the HOME STRETCH now. The worst part (denial, weight gain, getting over body image issues, waiting for my first period) is over. Now that my period is back, it really is just a matter of a few more cycles! And 1 year from now, it won't matter at all if baby was conceived 2-3 months sooner.

5. Knowing that many girls with HA have lower bone mineral density, I am using my pre-pregnancy months to STOCK UP on calcium and vitamin D... replenishing what I lost during my HA days, and stocking up so that I have lots of calcium & nutrients for pregnancy requirements.

6. I have only been at my current job for 1 year. The longer I am at it, the better I will get at it (making it easier to return to after my maternity leave), the stronger my professional reputation will be, the less sheepish I will feel about announcing my pregnancy, etc etc.

7. If I end up having a December baby (conceive in March or April) or later, it means my maternity leave may actually be 1.5 years (instead of the standard 1 year leave here in Canada). I work at a school, and it seems like around here they grant your leave until the following September - less disruptive for the students.

Jambaby 9/19/10:

I am making a list of Reasons to Stay Positive because I always feel better reading other girls' posts like this

*Out of all the causes of IF, this really IS the "best" one to have. Reversible, our parts are in working order (but just on hiatus right now!).. DEFINITELY a reason to be grateful. I HAVE OVARIES! I HAVE EGGS! I HAVE A UTERUS! Score!

*It's a life lesson: Because I am so motivated to get pregnant, I am motivated to gain weight. And through this, I've learned that LIFE IS TOO SHORT to restrict calories. Life is too short to cut out giant bagels and alfredo pasta from my life....
And after I eventually have a baby and try to lose the post-pregnancy weight, I will not go back to my old habits. This experience has taught me all about BALANCE... and that truly, nobody cares a little extra wobbly bits on me!

(If not for being SO MOTIVATED to get pregnant, I really don't think I would have ever dared to gain weight/get over my fears! This is truly a liberating experience....)

*In fact, this is a genuine wake up call that it really IS healthier to have wobbly bits. The media and health/fitness industry sure can skew us into thinking you need a flat stomach to be "healthy".

*My definition of 'FITNESS' is much more sustainable and fun: Instead of working off as many calories as I can on a boring machine, fitness now consists of trying different classes (yoga, pilates, dancing).... much more fun, and who cares if I'm burning less calories per hour.... fitness is now something I can truly ENJOY for the next 50 years, instead of a chore.

*Realizing that EVERYONE has a struggle. Whether it's IF, whether it's financial, other health problems, relationship woes... we don't get to pick our tough spots, but we sure are in control of how we respond.

So really, this experience is making me:
-More patient... (which will probably also make me a better parent...)
-More grateful for everything I do have (good health, great husband, etc)
-A better understanding of "healthy" eating - it's about balance!
-More time in my day to be sedentary and read, knit, etc, without feeling guilty
-An appreciation for TRUE fitness - trying out different classes, being outdoors... NOT trying to burn as many calories as I can into my 30 minutes on a machine.

Jambaby 10/7/10:

Regrets:

5 years ago, I would have recognized that my period stopping = a sign that I need to cut back on the cardio/"healthy" eating, NOT interpreted a sign to feel like I'm a "real athlete" and "super fit" since I made my period disappear.
-Would not have gone on birth control to "fix" the problem.
-When I finally went off the pill this April, I wish I wouldn't have been excited by the fact that I wasn't feeling as hungry (no more female hormones in me?) which enabled me to get by eating less and inspired to lose another 5-10 pounds. Argh!

Blessings:

-Finding this board in July. I am SO glad I took immediate action. Including buying a massive tub of Nutella and finishing it within 2-3 days
-Enjoyed pigging out on unlimited junk food for a month to get a headstart on the weight gain, then went back to healthy food (but made sure to eat lots of it)!
-Discovering that there's more to life than visiting the gym every day! I will NEVER be the same person again.
-Also discovering the joy of cheese and pasta... YUM! Again, I will never be the same deprived person again...
-Really, the longer it takes to conceive, it means the more time we have to accumulate savings, which means we can pay off our house faster... which results in BIG savings down the road.
-Like Nico, who has been an absolutely angel and helping all of us here on the board get through HA, I want to pass the torch and spread the word so girls later down the road don't have to go through this alone.

Jambaby 10/14/10:

...I agree with you on the weight gain! I used to think it would SUCK to gain, say, 5 or 10 pounds... so much that I would choose Diet Coke, aspartame-filled yogurt instead of natural... etc etc..

BUT now, man oh man. For me, it has actually a blessing in disguise to go through this and gain some weight. I forgot how tasty lasagna is!
And how much more free time I have without the gym!
And how fun it can be to eat a cookie or two without secretly counting how many calories need to be worked off later!

And actually, my former "potbelly" that always bugged me (when I was at my lightest!) actually now looks in PROPORTION with the rest of my body - it doesn't make me look like a skinny pregnant woman anymore, which suggests that my body really was not quite balanced /properly fueled before!

YAHHH weight gain! (PLUS, As Nico said, it will be easy to lose some of the weight* post-baby. *But we must be careful not to go all extreme and develop HA again!)

We've got a plan, Stan!

Unsurprisingly, this latest cycle was another BFN - also with a bizarrely long LP (BFN at 16dpo so I stopped progesterone that night, didn't get my period until 18dpo!) So I think maybe I don't have any LP problems anymore and will just quit with this progesterone junk.

DH finally got his SA scheduled, and results from that were pretty normal, somewhat to both our surprise. So we're just in the unexplained IF bucket at this point.

I had my followup appointment with Dr. C a few days after that, during which she told me our insurance would probably make us do two cycles of injectibles before we could do IVF, and that the fact that we would do single embryo transfer would not fly with them as a reason to do IVF, as given my age they would be recommending that we transfer two. I tried three times to get her to answer my question as to WHY ovulation induction with injectibles would give us a better chance of pregnancy than natural ovulation (assuming we were aiming for only one mature follicle), and she kept going back to when I had HA and was doing injectibles then, and did not even come close to answering my actual question. By the end I was having a hard time holding back tears. I just felt like she wasn't listening to me at all (not so different from when I first went to see her, I suppose).

So, our plan, as we did NOT want to do injectible cycles, was going to be to ttc naturally for a few more months (maybe with a natural IUI thrown in for shits and giggles), and if no luck, then pay for an IVF cycle on our own, perhaps with a different clinic that had been highly recommended to me. Dr. C did agree to submit to insurance for approval for IVF on a long shot, and said we'd hear on that in a few days.

Well, to my utter shock and astonishment, the insurance coordinator called me back a few days later, and said that we were approved for two IVF cycles straight away! Wow! My friend at work had said that was the case, but Dr. C was so negative about it, i assumed that there was no chance in hell.

So... we'll finish out this hail mary cycle, and then get started on bcp or whatever next cycle, which would put us at ER at the end of July / beginning of August. I'm excited - and a little scared too. But mostly excited and probably way too hopeful.

I did call for an apt at the other clinic - they didn't have any openings until August, and that schedule isn't even out yet so I couldn't actually make one. So I figure we'll see how this cycle goes, and re-evaluate from there, if need be. Hopefully not! (I'm really hoping that I can talk them into a single embryo transfer, otherwise the point may be moot. I am NOT transferring more than one.)