Hypothalamic Amenorrhea (PREG, M/C, CHILDREN MENT'D)

[chigal]

Hey, Ladies! I'm in the SAME boat...diagnosed with HA, no real cuase. When I went off the pill a year ago, no period for 8 months. At the time i was 5'7" 117lbs and working out moderately/intense 4 times a week. I passed all the standard tests (other than having a very low estrogen level), normal MRI, and HSG. Failed Provera numerous times, but did finally have success with Premarin/Provera combo- this is because with low estrogen, you never build a lining, that's why the progesterone (Provera) alone doesn't induce af because there is nothing to shed.

My OB did 3 rounds of Clomid up to 200mg a day for the last round. Big fat waste of time. I never developed any follies that got even remotely big enough to ovulate. Got referred to an RE, and did one cycle of Follistim injections with timed BMS, but didn't have a great response: my estrogen was still very low and my lining was pretty thin . Then I got benched this month because I have cysts, which can be a side effect of the injections.

So, given our limited insurance coverage and the dissapointing response to injections, we've going on to IVF. Scary, but i'm sick of wasting time and I like the 50% odds my RE gave me compared for IVF compared to 15% with injections.

Anyways, sorry this is long, and thanks for listeining to my story. My advise is to skip Clomid and move to injectables if you can. I've gained about 8-10lbs. since starting all this, most of which in the last few months. And i've cut out all cardio and am only doing a little weight training and yoga (which helps with the stress of all this). So, i'm not sure if the weight gain was due to the injections or from eating more cookies and sitting on the couch instead of going to spinning class.

Good luck to you guys, your stories make me feel like i'm not alone.
FYI, there is another good thread called "No periods--?diagnosis" that has a few girls just like us who had success with injections.
-Allison

[clementine]

This all seems so discouraging.
My husband is going for what he calls his "masturbation appointment" (sorry to be so graphic..he does make me laugh). next week. Clearly, the problem is me, but we need to rule that out.
He seems to want to try 6 months of trying to see if quitting running will help, but he's up for anything. He's not worried, thinks "it'll just happen" one way or another and wants to try the least aggressive approach to begin with. Of course, I want to go straight to IVF!
Does anyone know if, with IVF, side effects are the same (ie weight gain) does one HAVE to do injectables first? I suppose one does, in order to ovulate.
I feel so out of control. I took a pilates class yesterday and I must say - it was awesome. I could give up running for that everyday (thought I was in shape but dear God, that's intense). I was glad to know there are other challenges out there.. the thought of sitting still for 6 months scares me.

Chigal your post made me feel for you...I'm so sorry you haven't had any luck...what is frightening is that you are NOT alone by any stretch.. I think there are so many people in our boat. Sometimes I wonder if it's something I eat.. for example, I do use Equal a lot (rather than sugar) and I do mean a LOT. I don't know... I'm babbling. Just feeling completely discouraged at the long road ahead. I'll post more later when I can inspire you all and say "we'll be fine!"
Take care xx

[kilsby]

Chigal, thanks for your post and I must say that it made me a little worried too as i have v low estrogen and v low lining so I'm really scared now that injectibles won't work for me. Did they start you with a really low dosage? Did the RE say that a higher dosage MAY work or just that only IVF would work? Best of luck with the IVF and keep us informed how this goes. I would love to do IVF and increase my odds but there's no way we can afford it, injections are about our limit.

Clementine, that's hysterical about your husband's appointment and at least he's looking on the funny side of it! I hear ya about being impatient, i'd love to go straight to IVF as well but hubby wants to wait a while and then do the injectibles.

Also Pilates is great exercise but not impactful on the body (in a bad way). My friend doesn't do cardio due to a bad knee but does pilates and she has abs of steel!

Good luck to you both, keep in touch

[chigal]

Oh gosh, I really didn't mean to be discouraging or bring you guys down. That is the exact opposite of what this board is for!!
Although this road we are on is not so fun, don't be afraid of what lies ahead... I think you guys are definitely doing the right thing by trying to decrease your exercise and increase your weight first. It just didn't work for me, but that doesn't mean it won't work for you. In fact, that other thread I mentioned had a few girls with the same situation and one got pg after gaining some weight, no drugs needed!
And I think I am definitely NOT the norm, i've just had some bad luck. For one thing, my RE started me at a VERY low dose of the Follistim (injectable FSH) which is why I didn't respond all that well. But he wanted to start slow instead of overstimulating, which was good, because I don't want 7 babies at once! As long as you have a good RE, who does frequent monitoring with ultrasound and bloodwork while you are taking the shots, the risk of multiples is very low.
You asked a question about the injection drugs with IVF: yes, you do have to do the shots, but as far as I understand, they give you higher doses because they are trying to stimulate lots of eggs rather than just one or two. After I took the shots, I was extremely bloated, but it was mostly water weight and I felt better after a couple of weeks and lost most of it. If you have any other questions about the injections, I'd be happy to answer them the best I can. It really wasn't as bad as it seems. In fact, it felt great to know I was growing some little eggies!
I think overall, it just would have just taken another month or two to get the right dosage and everything, which would have a success rate close to if not the same as any other women who doesn't have IF (15-20% each month). But due to our insurance situation and because I have zero patience, we decided to just jump to IVF. But my RE definitely left the choice up to us, to either continue with injections or go on to IVF.

So don't worry, ladies. There are PLENTY of options out there for us, in fact, i've read that of all the types of infertility problems to have, hypothalamic ammenorhea is one of the easiest to treat and has the most success in treating! So for now, just keep picturing your beautiful little baby being handed to you in the delivery room. And until then, go eat some ice cream!

[kilsby]

Don't worry Chigal, it doesn't take much to make me flap over the whole situation and I know you didn't mean this. It just frustrates me so much that my insurance doesn't cover anything, not injections or IVF or anything. I'm concerned that the RE will be over conservative with the Follistim and therefore my first cycle will fail and it'll cost me another $2000.

Thanks for your encouraging words though, I appreciate that. So have you started your IVF cycle yet??

[clementine]

Hi Kilsby and Chigal,
Absolutely right - don't worry ! we're here to vent..i wrote some pretty horrible things earlier on about women who smoke, and everyone just took it in stride, which was nice. I am a typical virgo (!) I like to control everything! Including my ovaries!! so sometimes I get super discouraged when they won't "release upon command!"

yeah, my husband is very funny about this, he keeps saying how in a year from now (?? given that babies take 9 months to "bake" -I think he's being rather optimistic!) we'll be looking back and wondering what we were so worried about. It's nice to have someone not be worried, since I'm near nuclear meltdown (kidding).

So... anyway - I thought I'd share my strategy with you both... it may sound silly, but hey - I'll keep you posted with my results: I spoke at length to a chinese accupuncturist and herbalist today, very well regarded in NYC. She claims to have treated this issue successfully a number of times (and independent reviews of her back this up). She has asked me to give her 3 months, and has urged me not to try any other hormonal treatments during that time. She's going to do both accupunture as well as have me drink various herbal teas...and change my diet. I'll post all her suggestions here after we meet.

I have done quite a bit of research (typing the keywords : amenorrhea herbs acupuncture) into Yahoo..and actually, the results seem rather promising... I figure, 3 months why not. She seems so convinced she can treat it, she left me feeling very positive.

interestingly, she has already made suggestions to change my diet such as no cold foods (no salads at all, only cooked veggies, steamed etc..) more red meat. Interestingly, I think ALL I eat are cold foods (dairy (TONS of it..up to 8 sometimes 10 yogurts a day, lots of fruit, veggies (cold) frozen yogurt, peanut butter (okay - that's room temp but not warm) sushi, cereal... I can't remember the last warm food I ate, except hot cocoa every night and microwave popcorn (which isn't hot). hmmmm...and I never eat red meat. Not on purpose, I just forget to, becuase I prefer sushi. So now, it's steak, 2 times a week.
see this link.. it is one of HUNDREDS if you run a search
http://www.mothernature.com/Library/...ooks/41/10.cfm

more:http://www.mywebsearch.com/jsp/GGmai...enorrhea+herbs


Of course, perhaps I'm out of my mind... but I will certainly keep you posted.
Listen everyone, as Chigal said - this is the MOST treatable infertility issue, and we WILL overcome it. Let's think positively... today, I went out for ice cream (more cold food!) and was walking past a woman with the tiniest cutest little baby... so small it still had its eyes closed, and was all wrinkly... talk about adorable. It hit me right then that gaining 10...even 15 pounds for the sake of a baby is NO PROBLEM. I can do this, i WANT to do it. it's our choice...and we can!
Take care,
Clem

[clementine]

Kilsby I am so sorry (again) about insurance. its unconsionable (sp?) that ANY plan doesn't cover this. Absurd. I feel upset for you, because you deserve all the help you can get. I supose in your situation I'd want to be more (rather than less) aggressive and (please don't misinterpret this, I truly don't mean to offend anyone, so it's just a comment) perhaps consider selective reduction thereafter in case of multiples (to increase the odds of successful implantation for the remaining one). Again, I know that opinions are very strongly felt on this matter so I do not mean to offend - I just want the odds to be in your favor.
xx

[clementine]

http://www.aaaom.org/HPAMENNOR.htm
interesting...

[clementine]

omigod..this is the virgo in me - obsessive compulsive...sorry.
I am fascinated by all this, and wanted to share it with you..sorry if it's deja vu for everyone:
http://www.aprilsfoodandherbs.com/da...menorrhea.html

[Lauren2005]

I don't know anything about this subject, but I did see this article and the title of your post. I hope it's helpful!

http://www.ivf-et.com/tlc/fha.html