Hey AKD! I sent you a pm. How's everybody doing now? Jen26 how's everything going at your end? Im hopefully starting my new protocol soon. Expected to have my period in about 2 weeks. My new doc has put me on estrace daily and provera for 10 days to induce a period. I'll be taking menopur starting with 250iu's. I was supposed to start last month but since i only had 2 follicles show on my first day of u/s and b/w, my doc suggested a start next cycle. Does this make sense to you ladies? Because i always thought menopur made your follicles grow?!!

hopeful - I think it was fine to have 2 follicles, but I guess your doctor wants to be extra careful. My RE put me on Repronex (between 75 and 150IU) for the 1st 2 IUI's. On this 3rd one, he did repronex (75) and puregon (75). I had 4 follicles on the day of trigger (triggered on CD14) and a lining of 6.5. My lining was 8.1 two days before and then went down to 6.5 so I don't understand :( What is your lining usually? How many cycles have you done? Along with the injections, I take Vit D, Vit E, Vit B6, Trental (increase flow to uterus), baby aspirin, estrace and pre-natal vitamins. Not sure how hopeful I am of this cycle b/c I have NO SYMPTOMS!

Where do you live and which clinic do you go to? I live in Ontario.

Also, my RE isn't worried about the size of the uterus - he says it will stretch easily. You mentioned you've done clomid - my RE was completely against it b/c he said it is not the right drug for PA. He has since been giving me Repronex and now bringing in puregon. I don't know much about menopur but 250iu sounds like a very high dose.

My lining on the baseline (CD3) scan is usually paper thin, at around 1.5. Then by the time of trigger it increases to between 6 - 6.9.

Good to hear from you! Stay in touch :)

Hey AKD84 Welcome to our group! sorry it took me so long to write. That list of you're amenorrhea history sounds about right! So an answer to you're success with PA question is yes! my sister and I both have PA and my sister got pregnant on her first iui ever! She just delivered her healthy twin baby girls like 8 days ago! So yes you can get preg but unfortunately for me, it's taking longer then i hoped! Also, a friend of a friend also has PA and has a few kids. So, i hope that gives you a little more hope.

Fyi i am from California.

I think you're right about Clomid not being right for PA - my RE tried me on it just to see if I'd respond and I didn't which was what they expected. Lol they weren't sure what to do with me at first because I don't present well for any one reason for PA. Repronex and Puregon have got my ovaries to respond,

Hey hopeful! This is Jen26. my last account was frozen and i couldn't log in, so i just created a new account. That's why i haven't written in a long time!

Here's an update. So, I have done about 6 iui's and none of them worked so my doctor has suggested that i move on to IVF!!! Crazy! So i'm on the pill for like 3 weeks and on jan 18 i have to go get an endometrium biopsy and a histrosanogram! (i prob didn't spell either correct) Then i guess if everything looks good, then i start 2 weeks of injections and then do the egg retrieval then 5 days later they put the egg/sperm back in and i have 48 hr. bed rest! So thats pretty much it with me.

that's weird that your doc made you do that. Menopur does make your folicles grow! What is protocol??

Heyyyy - sooooo good to hear about your sister. I am so hopeful now. Did she have an infantile uterus as well? Can you please tell me about her protocol? What was her uterus lining b/c that's my major issue.
My diagnosis is that the connection between my hypothalamus and ovaries is disconnected so my ovaries don't produce the hormones.

Do any of your technicians ever say there's fluid in your uterus? I get it all the time. My RE just says it's blood cells for building the lining.

Hi AKD! :)
Thanks for sending me the link to this site! I feel less alone with this condition now.
I'm new here and am in the middle of my second attempt of using Repronex and Puregon. I have primary amenorrhea due to my hypothalamus not working properly.
Am looking forward to reading about everyone's stories and am wishing everyone luck! I love that one of you had twins - that's amazing!
Andrea

I'm so very sorry. I posted a msg of the other forum as well but I know you check this one more so thought I'd send you some hugs here too!!

I'm soooo sorry to hear that :( I know exactly how you feel! I had 6 neg IUI's before my doc had me move on to IVF. It's a bummer but you just have to keep your chin up. I would get super sad after getting negatives and i think it was depressing my husband to see me like that. So i know its hard but you got to keep trying and stay positive. I'll be praying for all you girls.

Ohh AKD! Hang in there sweetheart. I can imagine how bummed you must be feeling. But look at it this way, atleast there is a way right? Have the u/s tech noticed any changes in your uterus lining since you started taking your vitamins etc? I don't think i have any problems with my uterus lining. When I got my sonohysterogram done, my tech said my lining was fine. Even my doc who did my laparoscopy said uterus was small but it'll grow when i'm pregnant. By the way, I live in Toronto and go to Astra Fertility clinic. How about you? I just found out that menopur and repronex are pretty much the same thing..just different names are used.

Hey Jenn26. I was wondering if jenn26 was you or not. Congrats on becoming an aunt. What injections will you be taking? A 'protocol' is pretty much what meds your doc will be putting you on for your next treatment.

Yeah, my previous doctor was an ass for not knowing how to treat a PA patient. He even started Puragon with 75iu's. Thats when i knew something was wrong and i'd always have to remind him that I've never had a period in my life when he'd ask me to come back when my next cycle would start. He just cared to make his money. Anywho, i'm glad im in better hands now. I really hope IVF works for you.

Hey hopeful. Yea im jenn26. My last account was frozen so i had to create a new one! Ive been taking menopur in the past so maybe they will have me stay using that! I dont know for sure prob until i have those tests.

Its such a pain to have to remind doc's that u dont have periods!!! Im glad your with someone better!

What is a laparoscopy? My doc mentioned that test. I dont think i have to do it but why do they do it and do they go through the belly button?

I actually got a laparoscopy done because i had a dermoid (benign) cyst in my right ovary. Yeah, they make couple of teeny tiny incisions. One in belly button and two around the cyst. Its little painful for couple of days. But why would they do a laparoscopy on you? So, is it that your follicles not growing?

AKD i am in california. I go to south county reproductive.

Hopeful im not getting it done, my doc for some reason mentioned that test.

AKD, I'm in brampton aswell. And yes, I do go to the clinic on Queen and Kennedy. What a small world eh?! Yeah, i ordered my meds from ivfmeds.com aswell. My clinic was charging $1 per IU. And since i'd be taking 250 iu's a day thats $250. Yeah...NO!! I am still trying to save up money if (God forbid) nothing works then i'll have $10K saved for adoption and go that route. Adopting isn't cheap either. I have my fingers crossed for you for this cycle. My period should be starting Sat. I get so excited beginning of the cycle and then get all bummed when nothing works. BABY DUST TO EVERYONE!!!

Which doctor were with before when you had the wrong experience? Have you ever tried out newlife? How many cycles have you done with Astra? Does it seem to be progressing?

I don't even want to think about adoption :( I really really want a child of our own. Really hoping God can give all of us that miracle. I know it can happen, just a matter of time. My doc is very hopeful. How many cycles have you done so far? How many follies have you usually had? Your estrogen level? Your lining (I think you said this was fine)?

I was actually with Dr. Nathan Roth at FRMC (Fertility and Reproductive Medicine Centre) I actually did two cycles there. One for Clomid and then Puragon. Because I always (self) diagnosed myself with Primary, he had diagnosed me with Hypothelamic. When clomid failed (even I had known that was going to fail). Then when he upgraded my meds to puragon Nico from fertilitythoughts had adviced that wasn't going to work either. And she was right. It didn't. Nico had also advised I need a cocktail that has LH and FSH combined. After getting advice from Nico I knew I was in the wrong hands and tranfered to Dr Micheal. I ended up taking a 2 month break from baby planning and now starting back. My last cycle I only had 2 follicles. I was supposed to start Menopur on my day 2 but they decided to postpone it till i have more follicles. In the past when i was doing clomid and Puragon I had 5 follicles but they weren't growing at all with the protocol I was on.
Right now my estrogen level in high since thats all I am on. Estrace every day, Progesterones on day 15 to 24 to induce period then menopur when i have good follicles. You have lining problem...I have follicle problems. How about I take your follicle and you can borrow my uterus?!! LOL.

Hahahah you just cracked me up! When I researching which RE to go to I looked up Dr. Nathan Roth. My endocronologist, however, sent me straight to the NewLife fertility on Queen and Rutherford. I don't know much about Astra but Menopur is closer to what I'm taking. I'm surprised that Nathan put you on clomid. My RE is completely against it for PA. He says it wont help my condition. Looks like you're in good hands now. Best of luck!!! Keep me updated!

Hi AKD,

I'm so glad you're moving ahead with another cycle. You're amazing! It's hard when you have to try again, I know, but I really think we just have to keep at it and I'm so proud of you.

I've heard so many stories of woman having to repeat attempts at IUIs and IVFs from women who now have children. It gives me hope and the will to keep on with another cycle.

I went for an ultrasound yesterday. I was terrified. Over the weekend they thought they saw a partial septated follicle but they think I'm ok and don't see any signs of that now. I didn't know what that was and looked it up on google (big mistake! I know better than to self diagnose over the internet!!!) where all the results came back saying it requires surgery or can be a sign of ovarian cancer down the road. I spoke to my Dr and she said there's nothing to worry about so I can breath again.

I have two follicles at about 14mm and my endo is around 7mm. I'm back in tomorrow. They couldn't see my left ovary very well it's so far over and too small. It never shows up - it's shy lol. I'll keep you posted!

I think I'm going to look into the generic repronex. We have coverage but it's limited and won't last forever and this is all so expensive!!

Had my ultrasound and blood work this morning.

Left ovary has six small follicles and the right 5. I now have one follicle that is 17mm and the other dropped in size to 10mm. They took two measurements of my endo and they were 9mm and then 7mm.

So the good news is is that this is the closest I have EVER been to ovulating in my ENTIRE life! I'm back tomorrow morning for more blood work and then Sat for ultrasound and blood work. They are hoping I'll peak on my own but we'll know tomorrow or Sat if I need the trigger shot.

Our odds are 20% to conceive. But I'm almost at my goal of ovulating and not having to cancel so I'm finding happiness in the small things and hope in future attempts now that we've found a dosage that seems to work with my body.

Yippee!!

Hi dreamgalzz. I have PA and was told at 25 that I'd never have babies either but at age 32 I found out that they weren't quite right with the diagnosis. It's good to go and see someone to really run some tests and find out what's going on. Originally they thought I had primary ovarian failure but it's actually my hypothalamus that does not send out the proper hormonal signals to my ovaries. There could also be some issues with my ovaries but they haven't totally failed. They found this out after doing many ultrasounds, blood tests, trying me on clomid and then injections of Repronex and Puregon. I just think it's really important to go and try and find out as much as you can. I went 7 years thinking I'd never have kids ever and now there's a small chance we can. You really need a referral to see someone who has to deal with these issues all the time - I never got anywhere until I went to a fertility clinic.

It's good to stay on the bcp. I wasn't put on it until my early 20s and when your not on it your estrogen levels can fall. One issue with that is bone loss so make sure you get a bone density test done just to be sure. If you're on bcp you should be fine. I had only a bit of bone loss and it can easily be replaced through exercise, bcp and calcium.

I'm sorry your bf isn't being very supportive. I've been through that as well in the past and it sucks. It's very hard. We're here for you and maybe we can share some experiences that will help you. Men have to go through their own phase in dealing with this. It does take some time.

Hi thanks for replying. U don't know how happy I found this web. I did pelvic scan n ultrasound but was told they couldn't detect my ovaries! Tat really scare me off.... Just a qn, r u being advised to take chromosome test? I am gg to see a fertilit clinic soon.... Hopefully they can have better opinions for me!

Andrea - woohooo on an excellent lining!!! Your follies growing really well too. I'm so super excited for you. Keep ONLY positive thoughts in your mind at this point. Keep me updated.

Dreamygalzz - I never had a natural period and therefore have a PA. I always knew that I wanted kids so I always made sure that I saw my endocronologist yearly and went to see my RE before I got married. He is very hopeful. When I went to my family doctor to see if I have ovaries, she gave me a requisition to go to a regular ultrasound clinic and they could NOT FIND MY OVARIES. I was beyond devastated and could not stop crying. Then I got referral to see RE (before getting married b/c I wanted to keep my bf informed of everything). Then did an ultrasound at HIS clinic and they easily found my ovaries. Fertility clinics know what the tricks are to look for certain things or certain patients. You really need to see a fertility specialist if you want all the answers. My ovaries were small when I started treatment, they have been responding really well, making lots of eggs and are now a larger size. My uterus is still tiny but responsive. My doc is very hopeful.

AKD is right! the fertility clinics know how a few tricks to see your ovaries better for sure!

The fluid might be blood, if you started your period today. That happened to me last time.

The fluid is usually there on 3 - 4 days during the monitoring. So it's not stuff during when I have my period but during follow up ultrasounds.

Dreamy: I'm so glad you've stumbled upon this site. And trust me, AKD and Andrea are right. You need to set up an appointment with a Reproductive Endocrinologist. I was 14 years old when my doc had told me I didn't have a uterus or Ovaries...to the point they had to check if i was a boy!!!! And now, I have a uterus and ovaries. Fine, my ovaries are small but I HAVE THEM!!! When was the last time you visited a gyne or RE? Hang in there darling! We've all been coming from darkness!! You will too.

AKD: Eeee, I have my fingers and toes crossed for you. This cycle looks promising. Especially since the RE himself is doing the b/w, US AND your IUI!! I'll be keeping you in my prayers!

Hi I'm from Singapore.... Medic health is gd here but the dove are seriously not adept to handle PA. One of e docs I seen actually guaranteed me tt there is no way I can get pregnant! Devasted n I'm so upset....

Hi I have seen 3 gyn and no RE . Didnt know there is a RE until I search online. 2 asked me to give up and accept god makes me unable to get pregnant. One even went a far to say maybe I'm a male.. The issue is I am perfectly female with mo Sawyer or turner syndromes.. Now all I can hope is that the RE can shed some light.. It's so hard to walk thru this alone with no one uderstanding what you are gg thru.

we get it and are in the same situation - hugs! I've seen a few doctors who didn't even know it was possible not to get your period so don't listen to them and see a specialist! Doctors can't know everything and don't especially about PA.

AKD I'm so excited for you yay! I'm so glad you're starting again and that your RE is involved. Sounds like he or she is very thorough. Our clinic doesn't give supplements which is why they never suggested any to me but I love that your RE does because I think it can help!

Even my RE said I shouldn't worry yet about egg quality and I's 32 almost 33 so you're fine :D

I haven't had fluid in my uterus but they thought they saw some around an ovary once.

Had my ultrasound and blood work this morning.

Left ovary has six small follicles and the right 5. I now have one follicle that is 17mm and the other dropped in size to 10mm. They took two measurements of my endo and they were 9mm and then 7mm.

So the good news is is that this is the closest I have EVER been to ovulating in my ENTIRE life! I'm back tomorrow morning for more blood work and then Sat for ultrasound and blood work. They are hoping I'll peak on my own but we'll know tomorrow or Sat if I need the trigger shot.

Our odds are 20% to conceive. But I'm almost at my goal of ovulating and not having to cancel so I'm finding happiness in the small things and hope in future attempts now that we've found a dosage that seems to work with my body.

Yippee!!

Andrea - I tried posting this morning but looks like it didn't post grrrrr!

Wooohooo on an excellent lining and a great follicle. Everything is sounding so positive. I never get a LH surge on my own so I always the trigger. I am so excited for you! Keep up the positivity.

So yesterday is technically cd1 b/c I started spotting. This morning was a pretty OK flow and now looks like my period is ending? I always get really light periods. Are your long and heavy? This makes me worried. Where does my lining go if I don't bleed like normal heavy - hmmmmm.

How many days of injections did you have so far? This cycle my RE wants to take things really slow to allow only 1 or 2 follies to mature. He's keeping on a 75IU dose only.

I'm rooting for you and sending lots of prayers for a successful cycle!

Yaayy andrea. I am so excited for you. Hopefully everything will go smoothly and you'll be giving us the BIG news. Stay positive! :) :) I know what you mean about reaching the point of ever ovulating. I have had 3 treatments get cancel on me and its just so aggravating going through the treatments, a part of you is so optimistic and then gets rushed in the end. But you made it beyond that point so this is great!!

AKD, you and i are on the same cycle. Im on cd2 today. I wasn;t even done with my progesterones and my period came 2 days early. I was supposed to be spotting yesterday too but it came pretty heavy. But yeah, i always get a light period aswell. For some reason my 3rd day is heavier than day 1 and 2. I only bleed for 4 days. Hopefully i'll get in for u/s and b/w today and they find enough follicles to get me started.

Keep me posted andrea and akd.

Had my baseline scan this morning. Lining at 4.1 (the thickest it has ever been on a CD3). Left and right follies are small. I'm starting 75iu of generic repronex tonight. What time do you guys usually do your injections? I usually do mine around bed time at 10pm, is that too late? I'm not sure what time is best.

hopeful - when are you starting your menopur? Did you go for your baseline scan today?

Andrea - how'd your bloodwork go this morning? Any update on the trigger?

My RE said yesterday that he has / had a few patients with PA and they've all gotten pregnant. So good luck to all of us. There is hope!

I am sooo bummed!:( This morning I went in for my baseline scan. So last time they told me not to start Menopur since i had only 2 follicles and they prefer 5 to start. This morning at my baseline scan I had NONE!!! NOTHING! Nada!!! ZERO!!!! I asked my u/s tech what we're supposed to do now?! She said wait till what the doc has to say but since i also have hypothelamic (FSH hormore deficiency...to sum it up) maybe if we do start menopur (has both LH and FSH hormone) they might grow. I feel like banging my head in the wall right now. That might start my hypothelamia!! Have any of you had that before? Where no follicles were found at 1st consult but then they grew with repronex/menopur??

AKD: At my injection teaching, the nurse had suggested to take injections after 9.

Do any of you have menstrual cramps like how every other normal person complains? I don't! No pain at all!

Andrea: How's everything going at your end? Do you have to take the trigger shot?

Took my trigger shot this morning after getting the ok from the clinic! Which means I finally made it to my goal of being able to do that - first time ever! Yippee! Now I'm back in two weeks to see if I'm pregnant.

No more double shots in my stomach for the next two weeks : D

AKD I have never had heavy periods but after my last round of injections I had spotting on and off over the course of a month! I did 25 days of two injections and ended up with one follicle at 19mm. My estrogen was over a 1000 and my lining was around 9mm. It's goo d to stay on the 75IU dose thats what I did but with 2 clicks of Puregon which is next to nothing. Thanks for the prayers I need em!

Yay on the lining that is amazing news!

I took my injections at 7pm every day - not sure why they picked that time but I just did what they said.

Hopeful - this has been my third attempt and yes it's very annoying. I was one 75IU repronex and 2 clicks of puregon. I went for 25 days on injections. My first ultrasound and bloodwork was done after seven days of injections and my follicles are always too small to chart but there are usually a couple tiny ones. What have they tried you on? I never really have had cramps either and have always had light periods.

The Drs at the clinic have all said that there's a good chance for women like us - it's just getting us to ovulate and we have to be patient and it usually takes a few attempts.I think there is hope : )

hopeful - I'm sorry your baseline scan didn't go as planned. When I went for my very first investigative cycle (about a year ago). They found no follicles in my left ovary. The doc wasn't concerned and he said come back when you are ready. So when I started injections in September, I had multiple follies thanks to the repronex injections. You don't have primary ovarian failure so you are fine. When you start the injections, you will be on your way to mature follicles. Did they check your lining? I hope the doc starts you this cycle - if not then book an appointment with him and tell him all your concerns. I don't get much cramping either so you're not alone.

Andrea - woohoo! BMS as much as you can, especially closer to about 30 hours after ovulation (start today and time your BMS). Don't get up for about 20 minutes after IT. Try not to have any caffeine. I heard pineapple core during the 2ww is good for implantation - do your research and decide if you want to do this. Sending you lost of baby dust and prayers. About 36 hours after your trigger shot, you will probably get really crampy - that means your egg is releasing. Ideally we want the sperm to be waiting when the egg is being released, so time your BMS. Good luck!!!!

Yup, got the call. I won't be starting menopur this cycle. The nurse said she'll call me tomorrow to explain everything. I wonder if theres anything else they can give me before hand which can help follicles grow. Right now i'm only taking estrogen and provera (day 15-24) to induce a period. I'm in bumville again. I waited a whole month for disappointment. Oh well, I know these treatment take time especially in our cases. I just have to be more patient.

Yaaayy Andrea!! I'm definitely keeping you in my prayers. You give me so much hope.

AKD, they did check my lining but didn't say anything so i'm guessing everythings good. Hope you stayed in during this horrible winter storm today.

hopeful - oh man! I'm so sorry. I don't want to make this any more difficult for you than it already is but do you want to check out my clinic? It's only 5 minutes away from yours. It's on Queen and Rutherford and is called NewLife Fertility Clinic, the doctor's name is Dr. Soliman. He is EXCELLENT! I would highly recommend that you get a referral to go see him. I hope the wait isn't too long but I would say he would provide with lots and lots of answers.

Hopefully your doctor has some explanation for this. I'm upset that he didn't start you when you had 2 follies. FSH, LH increase the number and size of follicles - he should NOT have cancelled you.

Good luck with whatever you decide!

*Hugs*

Hi ladies,

Went to my fertility yoga class last night and there is a new woman there who also has PA caused by her hypothalamus - think I might mention this site to her!

Hopeful - maybe call AKD's clinic.

We have the same issue with the hypothalamus. I understand about the frustration of having to cancel. This time around they had me start with 7 days of Repronex injections at 75IU. Not much was happening to I started my 1 click of Puregon (about 8IU) for 4 days but still not much was happening - only had a few follicles and none were growing. Then they upped my Puregon to 2 clicks (about 16IU) and things slowly started to happen. I ended up with one follicle at 19mm and lining around 9mm. I had three growing but they dropped off which is what we were aiming for.

We have to be patient while they figure out what dosage works for us. Also I don't know any other women who have to inject for as many days as we do but the woman in my yoga class also went for 20+ days. So we have to be patient that with that as well. It's still hard though. I hate waiting in between attempts as well. They make us wait at least one month but I always want to start up again the day they tell me to cancel lol.

AKD how are you doing?

took my trigger shot on Sat at 9am.

I took the ovulation test Suday, Monday and today (same time in the afternoon) and each day has a smiley face saying my LH is high enough to ovulate.

Should I get a smiley face for three days? Maybe I haven't ovulated?

took my trigger shot on Sat at 9am.

I took the ovulation test Sunday, Monday and today (same time in the afternoon) and each day has a smiley face saying my LH is high enough to ovulate.

Should I get a smiley face for three days? Maybe I haven't ovulated?

Andrea - did you get any ovulation cramps at all? Usually after 36 hours of the trigger, I get a lot of cramping on both sides of my ovaries. Last time I had 4 matures follicles, so I was doubled over in discomfort - it was very uncomfortable.

When are you going in for your test? Do you chart your temperatures?

I posted a few days ago but it went to the next page.

Hope you're feeling good - best of luck!

yep I do but my thermometer isn't the right kind - electronic in my ear and if I take my temp three times in a row they're all diff. I keep forgetting to pick the right kind up so I've been going by what the clinic has told me to do.

I got some really bad pain, same side with the follicle, Sunday night and it actually woke me up a coupe of times. Am hoping that was me ovulating. Having never done it I'm not sure what it's supposed to feel like.

Yup those cramps are you ovulating! Things are looking good so far! I hope you BMS'd a lot and covered all your grounds. Best of luck!!

Have made it through part of my 2ww so far - beta test on Feb 1st - eeeek! A few more days to go and crossing fingers

Andrea - eekkk!!!! I'm so excited for you. Only a few more days. Any symptoms? How many post ovulation days are you? You're not on progesteron support correct so you have an excellent LP. My doc always puts me on progesterone support without even checking my levels. FYI - this thread has continued to page 13...for some reason this site only shows 12 pages below but click on the "latest" and you'll see more responses. Sending you lots of prayers!!!