people must stick their noses in...

Hubby's going in for his SA on Friday. Had to call the hospital to register beforehand, and he was quite surprised that they already had him in the system, albeit with his parent's address. So we're over there last night, and he asks if they can think of any reason it might be in there.

His Mom: "Why are you going to MGH?"

M: "For an appointment"

His Dad: "What do you need an appointment for?"

M: "It's just an appointment"

Dad: "But what for?"

M: "For a fucking sperm analysis, alright?"

Dad:

Well, he really didn't have anything else to say. Mom got it... Dad's just a little slower on the uptake. I probably turned redder than any of them did though!

today's appointment

Saw my gyn today. Had scheduled the appointment a while back, to go over test results etc. It was, unfortunatley, a waste of time. I sat in the waiting room for half an hour, sat in the exam room for another 15 minutes (at least I had brought some work with me so it wasn't a complete loss), then she came in to chat.

She told me that my HSG was normal (that *was* nice to hear - at the test, the radiologist had said something like "we should see the dye spilling into your peritoneum", but didn't actually say whether he did or not. I should have asked, but for some silly reason I'm intimidated by doctors. Need to get over that.) Other than that,not much. I did at least ask her for a copy of my blood test results, so I know what all those numbers actually are. (Just about everything is on the low side of normal for the follicular phase). I asked for printouts of my HSG as well, just 'cause it's cool, but she said I'd have to request that from radiology.

On a completely different note, I had lunch today with a friend from when I worked here before (I'm back at the company I worked for before I went to grad school), we talked about her daughter (18mos), and then it turns out she's pregnant again, due in July :-) So she asked whether I wanted kids at any point, so I told her the whole sordid story. Turns out both of her kids were conceived through IVF.

It's amazing how many people have trouble conceiving. Growing up we all think that you can get pregnant at the drop of a hat, but I know so many people (not even including blog world) who have had, or are having trouble. If only we knew then what we know now!

snow sucks... but it keeps me from exercising!

I hate the snow. I am getting repetitive stress injury / carpal tunnel in my left wrist from all the damned shovelling I've had to do. let's see... Had to shovel when I got home last Wednesday night (can't pull into my driveway with *any* snow on it 'cause it's too steep). Thursday morning - more snow overnight. Saturday evening, trying to get a jump on the blizzard (8in). Sunday morning towards the end of the blizzard (somewhere between 0 and 48 inches, depending on drift size). Sunday evening after it had finally stopped snowing. Wednesday morning before leaving for work. Wednesday evening getting home from work. This morning, clearing up the last of it. GGGGGGGAAAAAAAAAAAHHHHHHHHHHHHHHHHHHHH! That's eight time's I've had to shovel the driveway in the past week. Most of them by myself too, 'cause hubby's away for work. Mostly in Charlotte NC which is at least a little warmer than here, although this week he's in Minneapolis...

There is NO place to put the damn stuff anymore.

I suppose the good thing about it is that (aside from the shovelling), it has really kept my exercising down the past week. No hockey over the weekend, no hockey on Tuesday, no game yesterday - it's actually been over a week since I've been out on the ice, which hasn't happened in a *long* time. Probably not since we went to AUS / RSA for 5 weeks in '03. Not playing has not come without its frustrations however...

What REALLY ticked me off? I didn't want to drive in on Weds morning this week, but had to because we had a hockey game in the evening, and I needed to bring my equipment and the team jerseys. I didn't know it was supposed to start snowing in the morning, I was under the impression the snow wasn't going to start until evening. So I woke up late. For snow anyway - 7:30. (*&@#$ shovelling meant that I didn't leave the house until 8:30. Then it took me an hour and a half to get to work. Yes, you read that right. NINETY minutes to go 8 miles. It usually takes 20! FUCK. I practically could have walked there in that time. And then (I'm sure you can see what's coming here) the fucking hockey game was cancelled. Yes. Cancelled. Basically, I completely wasted two hours of my life (the 30 min of shovelling + the 90 min of driving). AND I didn't get to play hockey.

Did I say that I HATE snow???

Waiting

I am not good at waiting. I am not good at dealing with things not going my way. I am a control freak! I have an appointment with my gynecologist on Friday, I think to just go over all the test results etc., then with my RE on 2/8, to talk about next steps.

That was supposed to be next Tues after my test, hubby's blood tests and semen analysis, but he wasn't able to schedule that until 2/4, so I had to postpone. At least he got it scheduled - he does not have baby fever in the same way as I do, so I was really anticipating having to nag and nag to get him to make the appointment. I had asked him to do it over a week ago and he procrastinated (as is his wont). Fortunately I just had to push very very gently. Telling him that it needed to be done before my RE appointment was what did it, I think. The man is hopeless without a deadline!

I also made another appointment (I don't think I've seen this many doctors in all my previous 30 years!) with one of the doctors at the MGH reproductive endocrinology group. They're actually the ones who did the clinical trials to get pulsatile GnRH treatment approved here in the US, so I'm being proactive in case my current RE hasn't heard of it / can't do it. Unfortunately I wasn't able to get an appointment there until after we get back from our trip (2/25-3/22). I was really hoping to be able to take the medication while we were away - lots of time / opportunity for baby making.

Hubby is a consultant and travels Monday morning - Thursday night each week, which complicates things even further. He has suggested that if I am on medication to cause ovulation that I could fly to whereever his is for the appropriate timing. Should be able to work that out with my boss, as my work is all done on a computer. Doesn't really matter where the computer I'm using is physically located, which is nice.

happy HSG

Had my HSG yesterday. It wasn't too bad. Took the radiologist ~5 minutes to find my cervix, which was interesting. Two things I found amusing - first, the tech who was helping draped my lower body entirely in towels. So all I was to the radiologist was a vagina. I thought it was a funny way of depersonalizing the procedure...

So they got me all set up, catheter in the right place, balloon blown up, then the radiologist and the tech both left the room and came back in wearing their lead aprons. I couldn't stop laughing for five minutes - the radiologist's apron was in a camoflage pattern!

The test itself was fine, I felt a few minor cramps, but nothing unbearable. Watching on the screen was neat. It looked to me as if the bottom of my spine was crooked - I wonder if that has anything to do with the muscles of my back being so tight. I'll have to ask the chiropractor when I go again on Monday.

I've gotten to see so much of my insides over the past few months. One of the fun side effects!

pulsatile GnRH

More web research... turns out that pulsatile GnRH is actually approved in the US, although it sounds like that happened recently. The leading clinic is actually at MGH, so hopefully my RE will be able to do that, or can refer me to the clinic for that treatment rather than injection of gonadotropins. It sounds like the pulsatile GnRH is the more appropriate treament for HA, with less monitoring required, less chance of multiples.

some more research

Sounds like pulsatile GnRH administration is the way to go...

I was not thrilled about the idea of using fertility treatments to induce ovulation, hoping to start again on my own, but read this "In one small 2002 study, 70% of women with FHA recovered with no therapy at all after an average of eight years."

EIGHT years???

This is by far the best article I've found to date. Most complete explanation of the different underlying causes of HA, as well as treatment. Mentions pulsatile GnRH as the ideal treatment, with 90% ovulation, 30% preganancy / cycle, low rate of multiples... OF COURSE not available in the US. WTF?

interesting article

So I just did a pubmed search for "hypothalamic amenorrhea" AND gonadotropins. Found lots of good stuff. Maybe even a few articles that could butress my case for gonadotropins as a treatment of my underlying cause of infertility, rather than an infertility treatment per se. Talk about splitting hairs.

Anyway, there's also a really good article that talks about HA here. They compare body weight, fat %, other physical characteristics, hormone profiles and eating habits and psychological profiles between women with HA and normal controls.

Some very interesting stats. Women with HA got their periods later (as I did), have a lower fat percentage (I was down to 16.5% although I think I'm back up at ~20 again), lower BMI (I'm definitely going up here - I'm now at 21.7, was at 20.5 a couple of months ago)... have a diet much lower in fat (16% for HA vs. 30% for normal)...

I'm going to try using fitday to track the percentage of my diet that comes from fat versus carbs. I think that is almost certainly something that is true of me, and another thing I can work on changing on my own.

My nutritionist did suggest adding olive oil to pasta sauce when I eat that. I haven't yet because I naturally rebel against adding fat to my diet - BUT MAYBE THAT'S MY PROBLEM!

Oh - another thing this article says that hits home - "Psychological assessments by Berga et al. (7) and Giles et al. (8) indicate that women with FHA are perfectionistic overachievers". Describes me to a T. Continues on to say "with low self-esteem (7) and an inability to cope with daily stresses (7, 8)" which I don't think describes me, but who the hell knows at this point. Would one symptom of being a perfectionist overachiever be the inability to admit to low self esteem and inability to cope? Could be.

my cheapness bites me in the ass...

Back in November when I had to decide which health insurance to go with, mine or hubby's, we decided to go with his - my company actually pays you a small amount ($31/paycheck) if you have health insurance through another avenue, i.e. a spouse. So we end up getting our health insurance for next to nothing, with that reimbursement.

Of course, his company is located in CA, and doesn't cover fertility treatments. Where mine is located in the great state of MA and does. Of course, that doesn't matter at this point, because the only way to change from one to the other is through 'a qualifying change in family status'. I don't think wanting to have a baby counts. Grrrr... If only I'd known!

The only thing covered by his insurance is "Diagnosis and treatment of underlying medical cause of infertility when provided by or under the direction of a Physician."

I'm *hoping* that at least one cycle of the hormones / associated monitoring can be covered under that guise. I really wish there were more info available about hypothalamic amenorrhea. I've found some articles about its association with leptin levels, and treatment by recombinant leptin - of course, that's not an approved treatment so the only way to get it is through some kind of clinical trial. Other than that? Not much. I asked my RE about testing my leptin levels, she said they're probably low but knowing that won't make the treatment any different.

Anti big news :(

So my sister is not pregnant. Anymore. She had three positive home preg tests, a faint line, then a darker line, then a fainter one again. She had the sore bbs, they were definitely getting bigger. So I thought for sure she was. After the third home test, she went to her doc to have a blood test, which was negative. Then she got her period the next day - much heavier than normal. So probably a very early miscarriage. Sad. She called me in tears, unfortunately I didn't have my cell phone turned on so I missed it. When I talked to her later in the day though she seemed to be okay with it. I think she hadn't really started thinking of herself as pregnant yet, because of the lines on the preg test being so faint, and it happened so early. Hopefully it doesn't mean anything about what will happen in the future...

Reproductive endocrinologist

My gynocologist had set up appointments for me with both the nutritionist and a reproductive endocrinologist. I'm at the RE right now, pecking away at my palm pilot...

They did the requisite pregnancy test, checked height and weight (I'm up to 136, which I think is a very reasonable weight for my height of 5'5.5".)

I then spoke with the doc, who looked everything over, and confirmed the diagnosis of hypothalamic amenorrhea. I told her that I am increasing my calories and decreasing exerise - she said that given my past menstrual history (very irregular periods before I went on BC) that those are actually unlikely to help me.

So, it looks like the answer will be to use injectable hormones to cause ovulation. Clomid, which is usually tried before the injectables, won't work in my case, because the problem in my cycle is actually happening before that.

There is a concern about multiples, but we'll try and manage that as best we can by starting off with very low doses.

Next steps - more blood work to check for PCOS (although that is unlikely based on the ultradound she did. I did have a few follicles, but the largest was 9mm, where they usually don't progress until they get to about 12mm.) Also a check for various diseases and genetic anomalies. And an HSG test, which I've heard is a lot of fun (not!)

After that, we'll go in and talk about a plan in terms of starting the injections. We're going away from 2/25 to 3/22, so we'll probably get started after that. Unless I get my period before that... but it sounded as if she realy didn't think that that would happen.

Chiropractor

I visited a very good friend of mine down in Baltimore this past weekend. We were talking about my amenorrhea, and she mentioned that at her chiropractor's office there are a number of testimonials on the wall from women who had been treated there for amenorrhea and gotten their periods. Who knew?

So i did a little research on the internet, and actually found a bunch of articles talking about treatment of amenorrhea through chiropractic care. Apparently, studies have found a connection between problems in the lumbar area (lower back) and amennorhea.
As I had been thinking for a while about going to see a chiropractor for some mild pain in my shoulder blade, I figured 'what the heck'.

So, i found a chiropractor near me, and had my first appointment yesterday. First we talked about my history and what i want to get out of going there. Then she did a bunch of quick tests to check my range of motion and if I was experiencing any pain. Range was excellent, and the only mild discomfort I felt was when she had me cross my arms over my chest, twist to the right, then she applied pressure.

Then she started with the adjustments. The first thing she noticed was that the muscles running down the right hand side of my lower back are totally tense and full of knots. No way to even perform the adjustment without working some of them out.

(ah-ha, i say - connection between low back and amenorrhea!)

So she spent probably 10 or 15 minutes working on that, then did some spinal adjustments - the back cracking part. She was surprised at how much tension was still left after she did that, given that when she adjusted my neck it immediately became much less tense.

Boy did I feel good afterwards. She wants to see me three times a week for a couple of months - I think I'm really going to enjoy this!!!

Nutrition

i know that i need to eat more and better - but it's SO hard! Yesterday morning i was following my nutritionists advice and having toast with peanutbutter and 1% milk. I found myself thinking 'i'll only have 12oz milk instead of 20 so it's not too many calories...'

This is going to be harder than i thought.

baby steps

When my gynecologist suggested that I see a nutrionist, my first reaction was "I eat perfectly well!".

On second thought, I realize that I'm totally kidding myself. I probably eat an average of 12-1300 calories a day of healthy food. Anything more than that is JUNK. A chocolate here, some cake there, throw in a few candies... next thing you know I'm at around 700-800 cal of shit.

As I know I need to eat more / better than that, I figured seeing nutritionist would be a good idea. So I saw one last Thursday. It was SO helpful. She gave me just a few things to work on to add more calories and fat into my diet - the healthy way.

1. I should be getting ~2100 cal / day, 70g fat. It's nice to know the number I should be aiming for, I find it much easier to work towards a target than just to think that I have to eat more.
2. Change milk from skim to 1 or 2%. Why didn't I think of that. Easy!
3. Instead of candy, try some kind of trail mix with nuts - almonds and walnuts are particularly good. Fiber and good oils too.
4. pre ground flaxseed, 1-2 tbsp per day. Maybe mix with oatmeal or something. This one will be a little harder, it's a bigger change.
5. Breakfast - instead of a granola bar, maybe some whole wheat bread (at least 3g dietary fiber / serving) with peanut butter. Fiber and protein - more filling.
6. Add a little bit of olive oil / canola oil into sauces and soups to add a little more fat.

I picked up some smoked almonds and walnuts today and had them for a snack when I got home starving. yum! I'm going to try and eat them a bit earlier in the day though, so I'm not getting the majority of my calories at night.

Another thing I decided to try, on my own, was really working at getting 7.5-8 hours of sleep a night. Last night I didn't quite manage, what with having to get up at 5:30 this morning for hockey, but I came a lot closer than usual. Getting up at 8 tomorrow, so it's off to bed for me now.

Tomorrow: chiropractor?

Introduction / history

I was recently diagnosed with hypothalamic amenorrhea. I've done a bit of research on the web, but what info is out there isn't really what I'm looking for - I want to get pregnant! *Kinda* tough to do when you're not getting your period. I'm not even at the starting line yet!

I finished my PhD in July of '04, and went off the pill then. My PCP had told me that it can often take up to three months after going off the pill to recommence ovulation. Perfect! I could then be in my new job for about a year before going out on maternity leave. Or something like that.

Definitely something like that, as it's now been six months and I haven't gotten my period yet! So as I've had a tough time finding out what people have done to get their period back, how long it takes, what other options are out there, I thought I'd start this blog to pull it all together, and hopefully find other people who are in the same predicament.

The first thing my doc did when I hadn't gone on the rag three months after going off BC was to check my thyroid (blood tests were normal), then give me a Provera challenge. You take progesterone for 5 days, then theoretically get your period 4-10 days after that. Works for most people...

I didn't bleed at all after that. Not a single solitary drop. So then my PCP sent me to a gynecologist. As this was now a couple of months later, she tried the Provera challenge again. Still nothing. She also had blood levels of hormones checked. That was apparently normal, although I don't know the actual numbers as I haven't seen her again yet... have an appointment 1/28, so will find out then, I hope.

Next step - an MRI of my head, looking for a possible pituitary tumor, which can be one cause of amenorrhea. Everything normal there too. So onto the next hormonal challenge - 21 days of estrogen, followed by Provera. That finally worked, got my period last Tuesday. But it's not a real period, basically all that indicates is that my plumbing is okay and I *can* bleed. Doesn't mean my cycles have started for real or anything.

In the meantime, she had called to tell me that I have hypothalamic amenorrhea. Apparently some of my hormone levels are low (which I don't quite understand given that I was initially told they were normal? Maybe they're within the normal range, but on the low side?). I think she said it was the gonadotropins (FSH and LH) that were low, but I can't be entirely sure. She suggested A) seeing a nutritionist, and B) cutting down on my exercise.

About three years ago I decided to start exercising regularly, with two main goals. First, to get rid of the cellulite on my legs. Second, to prepare for a pregnancy in a few years, with the idea that being fit would make the pregnancy, delivery and recovery all easier. That may be... but first I actually have to GET pregnant. And, like I said, that's kinda tough at the moment.

And then in May of last year I decided I wanted to finally get rid of my love handles, and I just felt like I was overall chubby. So I lost ~12 pounds that month, by restricting myself to 1500 calories a day, and a few more in the months after that. I was also exercising quite a lot, although I didn't feel like it was excessive. Lifting weights 2x per week, playing ice hockey 4-5 times / week, volleyball 1-2 times... Got down to somewhere between 16 and 18% bodyfat.

Since then, I've put back most of the weight I lost, I'm currently down ~5 pounds from my starting weight (I was 139, 5'6" when I started, now I'm around 133-134) (still 5'6" though). I'm working on increasing my calories and cutting back on the exercise. I also have some other plans, I'll go into those soon...

New blog...

[Copied from my first blog, A Nickel for my Thoughts]


I stopped by my sister's last night. It wasn't nearly as hard as I was imagining. I think the whole idea is sitting a little better with me now. I had a really good conversation with my friend in Baltimore on Saturday night (really Sunday morning) when neither of us could sleep. She said exactly what I needed to hear - Nic, that really sucks!

Anyway, I've been doing a bunch more searching on the web, and while I've found some research articles and other info relating to getting one's period after having been diagnosed with HA, there really isn't much practical stuff out there. So I thought I'd move all my discussions about that to a new blog. [aka here!]

One of the things I've decided to try is getting closer to 8 hours of sleep a night. So it's off to bed for me now.

Big news...

[Copied from my first blog, A Nickel for my Thoughts]


So I was all excited because I actually got my period on Tuesday. Then my sister called to say that she thought she might be pregnant! She was four days late, and had taken an early detection pregnancy test on Sunday and there was a faint second line. She wasn't sure though, because she'd then taken another one, and her doctor had given her one as well and those had both come up negative. But she said she's *never* late, so she was wondering what was going on. I told her to wait a couple of days and then take another one, 'cause they're not always positive right away. I was really happy for her when she told me, but at the same time a bit sad - we were supposed to get pregnant together. And I've been trying so hard to be positive about not getting my period...

Then I talked to her again today and she's definitely pregnant - she took another test today, and it was a definite positive, a nice strong second line. I'm away right now, visiting a very good friend in Baltimore, as M is in Europe for work. So I'll stop by her place on my way home on Sunday night so we can be excited about it together. She said she wasn't that psyched until we talked - it's so much more fun to share with someone else.

I really thought I was fine with it, and I *am* excited for her, but I can't sleep. I've been lying in bed for the past hour, and can't stop thinking about it. First of all, thinking about how, like I said, we were supposed to do this together. And I would have waited a lot longer for her than she did for me... About how it's so fucking unfair that she gets pregnant the first goddamned month she tries to. About how hard it is going to be not to let her see me being sad. About how stupid my fucking body is - I'm in the best shape of my life, and it doesn't think I can handle being pregnant? What the fuck is up with that???

I need a hug.

Definitely moving forward!

[Copied from my first blog, A Nickel for My Thoughts]

Got my period today! Even though it was with the assist of estrogen / progesterone, it's nice to know that at least the plumbing is okay. Now we just need to work on controlling the faucet. ha. First time I've been happy about getting it! (No, never had a preg scare...)

Moving forward

[Copied from my first blog, A Nickel for My Thoughts]


I spoke with my doc last week, when she gave me the 'hypothalamic amenorrhea' diagnosis. She suggested two paths forward - injections of gonadotropins if I want to get pregnant right away - or at least try to... or gaining a bit of weight / cutting down on exercise / seeing a nutritionist to see if I can naturally get my period back.

My immediate reaction was that I don't need to see a nutritionist because I'm eating just fine. But on second thought I realize that I'm really not. First off, the hypothalamic amenorrhea is usually caused by a long term energy deficit. Which, I think, is pretty much what I've been doing to myself since May. Except for the last few weeks when I haven't really been tracking what I'm eating. But I think a nutritionist is actually a really good plan, because I've realized that (aside from my lack of fruits and veggies) I do NOT eat well.

My basic meals usually add up to around 12-1300 calories. I generally eat small portions for my meals - a granola bar with milk for breakfast (300 cal), usually some kind of chicken for lunch (500 cal) and then some ~500 cal thing for supper. Maybe I'll have a hot chocolate at work during the day, often I'll snack on a 100cal portion of frosted mini-wheats or Kashi cereal... but that's pretty much what I eat. Then on top of that, depending on how strict I'm being with myself, I eat JUNK. If I'm not trying to stay within a cal limit, I can easily add on 1000 calories worth of sugar and fat. Cookies and chocolates are the worst, but M- also buys a lot of other candy, and I can wolf down hundreds of calories of taffy, sweet-tarts, that kind of thing. NOT very nutritious.

So I've realized that I need help. I need to find out what my body actually needs calorie-wise each day, and I need to figure out how to attain that level without adding in all the sugar. I know that 1500 cal per day is way too little, but somehow I can't push myself above that level without going into my candy binge. Per the doc's instructions I've put on about 6 pounds over the last couple of weeks - but I've done it by giving myself free rein to eat CRAP. Which I really don't think is the right way to do it. That's basically how I added the ~10 pounds that I put on since I met M in the first place. Junk.

Since coming to this revelation (this morning), I was good today - I was hungry when I got home from work (at 10pm - I ate my dinner of stuffed shells at work at around 6) so rather than diving into the cookies which was my immediate first thought, I cooked myself some green beans instead.

But I find when I write this down, and see that I actually ate 2200 calories today (not so good on holding off on the junk today after all: a cookie for breakfast on top of my granola bar, TWO hot chocolates, a bag of M&Ms for an after dinner snack, a slice of cake when I got home, after the beans... total=755 cal), my immediate reaction is that that is way too much. Even though in reality it's probably not. I found a website the other day that asks for all kinds of measurements and then tells you what you should weigh, along with what your daily caloric intake should be to maintain that - I was a couple of pounds under the low end of my range (although I'm not as I write this...) and it said I should be eating 2580 cal per day. So I'm hoping to get an outside assessment of whether that's accurate or not. And if it is, how to get there without stuffing myself with empty calories.

Hopefully that will help with my period issues. Although I should be getting it soon artificially from the estrogen / progesterone I've been taking this past month. My back was a bit sore this evening which is usually what heralds the onset. I've always thought that I was lucky in not getting any signs of PMS worse than a mild backache - but I think now that that's probably because my estrogen levels have always been on the low side. All these 'good' things that I'm now finding are not so good anymore...

Anyway, 'nuff babbling. AFter all this, I need to go to bed to get up at 5:30 for hockey. (I know, I know - THAT's where my problem lies. I'm just not ready to give it up quite yet).