Kallmann Syndrome


#1

Are there any ladies out there with Kallmann syndrome, and who have had success with fertility treatments?


#2

Hi mmr,

I have what has been diagnosed as “partial Kallmanns”. Never started my periods, no sense of smell.

This month is our first cycle, so I have no idea whether or not we will be successful or not! I’m guessing it will take a few cycles to get my system up and going. I have been taking Menopur. Tonight I take my Ovidrel to cause me to ovulate. We’ll see what happens from there. What is your story??

Best wishes!!


#3

Hi there! I’m so glad that you wrote back!

I was diagnosed w/ Kallmanns Syndrome when I was about 17. Same here - no period, no sense of smell. I’m not sure what the different diagnoses mean, but I do know that I will never ovulate on my own. I take the same - Menopur then Ovidrel to ovulate (I think I also took Bravelle during IVF in addition to Menopur). Then I take prometrium suppositories during the 2ww, which I hate those…

We have been trying for a year now. A year ago, we got pregnant after our first IUI, but unfortunately miscarried around 7 weeks. :frowning:
After that, we did 3 more IUI’s and didn’t have any luck. Finally moved to IVF in March, and no success so far. (we did 1 fresh IVF and 1 frozen transfer, and now we don’t have any embryos left).

This is all probably TMI for you, but I haven’t talked to anyone else yet with this same diagnosis and we are getting ready to switch doctors…and so wanted to get an idea from others how things are going. Hopefully we’ll qualify for a shared risk program, and start back up in Sept.

Good luck!!! Are you doing IUI or IVF?

Please keep in touch, I’d love to hear how everything goes!! :babydust:

take care-


#4

I was also diagnosed with Kallmann’s at 17. I’m now 36. We adopted a baby boy 3 years ago because I was told that I wouldn’t be able to get pregnant. I’m now about to start a GnRH pump study at Mass General in Boston. I would love to hear from others who have gone through treatments with a GnRH pump.


#5

Newly diagnosed with Kallmans

I was just diagnosed with Kallmans syndrome this year at 25, after years of being told my missing periods was “OK”. I also have no sence of smell. My husband and I were referred to a specialist, and did our first round of IUI. There was no success. We will be doing our next round shortly. Any suggestions or success strories?:frowning:


#6

I know it’s old thread but wanted to bump this up to see how things went with ya’ll. I have Kallmann Syndrome and about to start a cycle to do a fet with 2 bonor frozen embryos.


#7

Hi Babbymoma!

Thanks for bumping this thread up again. Hope your cycle goes well and you are :preg: very soon!

I ended up getting my BFP on Christmas Eve. As you can see below, we started in August and had a few cycles that didn’t go well. One was cancelled because I didn’t respond at all to the meds, and another I responded too well. I found out shortly after that last post that I also have some chromosomal abnormalities, which really was depressing. But, it turns out that they are so minor that it didn’t effect my fertility.

We have a 14 month old son and he is the joy of our lives! We are thinking of trying again next summer while my insurance still covers my medication.

Keep us posted!

Any of you other ladies still around here? Would love to hear what has worked for you! What did it for us was a mixture of Menopur and Gonal F with trigger shot and timed intercourse. Best wishes!!


#8

trying

Hi Francesca13,
I was wondering if you would be willing to share the exact treatments you went through? I’ve been able to get pregnant twice (once through IUI, and once through IVF) but lost both around 5/6 weeks. I know “chemical pregnancies” are common for everyone, but I’m curious if it’s even higher in women with Kallmanns. Would love feedback from you … and anyone else.
thanks, aubrey

[quote=Francesca13]Hi Babbymoma!

Thanks for bumping this thread up again. Hope your cycle goes well and you are :preg: very soon!

I ended up getting my BFP on Christmas Eve. As you can see below, we started in August and had a few cycles that didn’t go well. One was cancelled because I didn’t respond at all to the meds, and another I responded too well. I found out shortly after that last post that I also have some chromosomal abnormalities, which really was depressing. But, it turns out that they are so minor that it didn’t effect my fertility.

We have a 14 month old son and he is the joy of our lives! We are thinking of trying again next summer while my insurance still covers my medication.

Keep us posted!

Any of you other ladies still around here? Would love to hear what has worked for you! What did it for us was a mixture of Menopur and Gonal F with trigger shot and timed intercourse. Best wishes!![/quote]


#9

Hi Welcome to the ks group. I’m Gabrielle I am on my first try doing everything. From what I here you need to be on progesterone to keep the baby from rejecting. You need to be on suppositories until at least 13 weeks. If the Dr says otherwise beg to stay on it longer it will make the difference. I had 2 donated embryos and almost did a transfer last month. they got my lining up high enough but the morning of my transfer my embryos didn’t make the thaw. I don’t have good insurance and can’t afford the meds so I went looking for a way of doing this. I am going to Mass General in May to be in a research study with the gnrh pump. It pumps synthetic hormones in you every 90 mins to make your ovaries and uterus to grow and produce follicles. email me through this site if you want any more info and the name of the person in charge of the study.

[quote=aubrey512]Hi Francesca13,
I was wondering if you would be willing to share the exact treatments you went through? I’ve been able to get pregnant twice (once through IUI, and once through IVF) but lost both around 5/6 weeks. I know “chemical pregnancies” are common for everyone, but I’m curious if it’s even higher in women with Kallmanns. Would love feedback from you … and anyone else.
thanks, aubrey[/quote]


#10

Diagnosed w/ Kallmann Syndrome @age22

Hi I was diagnosed w/ kallmann syndrome about a year ago. No sense of smell nor periods on my own. On Premarin and meroxyprogresteron meds since '07 these meds help me get a pd. I’ve been married for 2 years. My OB/GYN referred me to fertility specialist and he diagnosed me w/ kallmann syndrome. We started our first cycle of ovulation induction and no luck. To start off my treatment he had me take birth control meds to get my pd. then third day of pd had me on Menopur for two weeks and when I went to get sonograms to check if any follicles were produced there was no luck just saw maybe 1 tiny follicle but nothing else after that on my third week he switched my meds to gonal and a week later saw good lining of uterus wall but no follicles he stopped treatment for us to start all over again. He told me if I start another cycle more than likely the same thing is going to occur and gave me another option of getting a second opinion with another dr in San Antonio tx :grr:

We are a young couple we are looking for insurance for treatment first cycle we paid out of pocket and spent more than we had planned any suggestions on what we should do next :cross: :pray:


#11

Try Tx cattlemens association. You pay a fee every year for membership and join there insurance and it covers infertility. I dis a month on GnRH and then a few weeks on Menopur with no luck either. I am now going to Czeck Republic for egg donor. Can’t afford it in US.


#12

Hi!

I have Kallman Syndrome, and I was extremely relieved to find a forum to talk to other women in the same situation. I’m 28 and next week I’ll be starting my medication regimen for the very first time. My doctor wants to try Menopur, Ovidrel, and progesterone. I’m extremely anxious and nervous, but my doctor said he normally sees results in 3 months or so. Does this sound a little ambitious? I don’t want to get my hopes up.


#13

Yes it takes a long time for the meds to work. It all depends on how your body responds to the meds. I here doing estragine priming first before taking menopure might help it work. I hope it works for you.
I am older and I tried gnrh pump first but that depleted all my eggs so menopur didn’t work. I am now going to Prague to do egg donor embyos next week. If you have any more questions just ask!! There is a yahoo group for kallmann syndrome and there is a few trying to get pregnant right now.

[QUOTE=Eevans0406]I have Kallman Syndrome, and I was [B][/B]extremely relieved to find a forum to talk to other women in the same situation. I’m 28 and next week I’ll be starting my medication regimen for the very first time. My doctor wants to try Menopur, Ovidrel, and progesterone. I’m extremely anxious and nervous, but my doctor said he normally sees results in 3 months or so. Does this sound a little ambitious? I don’t want to get my hopes up.[/QUOTE]


#14

Babbymomma,

What about the Texas cattleman association and insurance? I looked it up and all I saw was the independent cattle mans association of Texas. Is that the same?


#15

They are cracking down on that. You have to live in Texas to get there insurance. I can’t afford egg donor in the US because it cost 8-10k just for the donor not including meds and ivf. It cost with a donor around 25-30k. [QUOTE=Spenanelson]Babbymomma,

What about the Texas cattleman association and insurance? I looked it up and all I saw was the independent cattle mans association of Texas. Is that the same?[/QUOTE]


#16

Hello,
My name is Dana, I just turned 30 (ahhh!) and I have Kallmann Syndrome. I was searching the site to see if any other women had Kallmann Syndrome.
I know this is an old post, but on the off-chance any of you ladies still check the page, I’d love to start a conversation about fertility treatment and what to expect.

Here is my backstory. I was diagnosed around age 17 and have been taking birth control pills until early December 2016. My husband and I have been talking to a reproductive endocrinologist since September 2016 and they started me on Menopur on December 4, 2016 (at 75 IU, one vial a day). I have been taking the same dose of Menopur every day now since then, and have been going in for bloodwork and ultrasound checkups each week. They keep telling me my estrogen is low (like 22) and to keep doing the same thing with the Menopur. It’s kind of frustrating that it seems like nothing is happening and they’re not even increasing my dose at all. But the doctor did say that it could take up to 3 months to build up the lining of the uterus and produce more estrogen.

Just wondering what everyone else’s experience was like? How long did it take from the very start of medication, until the point where you could at least start trying (even if it didn’t work that time)? It’s nice hearing these success stories (we are trying injectables with timed intercourse - my husband does not want to pursue IVF or IUI for religious reasons). I found someone on The Bump forums who also has Kallmann Syndrome and is due any day now. She has been nice to chat with, but I wanted to try to find some other women to compare success stories with, and treatment options, and so forth.

Thanks for being here!
-Dana


#17

Hi Dana,

I’m in a very similar situation as you. I was diagnosed with Kallman’s Syndrome around 17 and am now 29. I use birth control as well. We are in the middle of our very first treatment cycle using Menopur, Crinone & Progesterone and estradiol patches to support any possible egg. We have only gotten as far as the Menopur so far. I was started last week on 1 vial (75iu) per day for four days. After my blood work and ultrasound, they bumped me up to 150iu for three days and now we’re at 225iu (3 vials) per day for three days since there were no measurable follicles at my last appointment. I go tomorrow for more blood work and an ultrasound to see where we are at. I’m hoping the higher dose has triggered some activity. I’m told it can take several rounds of treatment before things really get working properly.

I can’t offer much more than that right now since this is our first attempt. I’ll try to post back here again with our progress &/or setbacks to see how things are going.

Good luck to you! :slight_smile:


#18

Hi Katherin! Since I’ve written my post, I’ve completed one failed cycle and started my second cycle. Here is how my first cycle went:
12/04/16 - 12/28/17 (25 days): 1 vial of Menopur
12/29/17 - 01/15/17 (18 days): 2 vials of Menopur
01/16/17 - 01/22/17 (7 days): 3 vials of Menopur
01/23/17 (1 day): 2 vials of Menopur
01/24/17 (1 day): 1 vial of Menopur
(52 total days on Menopur)

01/25/17: 3:30pm (TI), 5:30pm (TI)
01/26/17: 12:11am (TRIGGER), 12:30am (TI), 6:15am (TI), 5:00pm (TI)
01/27/17: 1:15am (TI), 12:30pm (TI), 9:00pm (TI)

2 WEEK WAIT - took two prometrium suppositories and two estradiol pills each day

02/12/17: Afternoon (AF)

And here is my second cycle so far:
02/14/17 - 02/17/17 (4 days): 2 vials of Menopur
02/18/17 - 02/26/17 (9 days): 3 vials of Menopur

Went in for morning monitoring this morning and they said my estrogen is still low and my follicles are small. So even though I wrote 3 vials until 02/26/17, I’m sure I’ll be taking meds for longer again like last time!

What is the Crinone that you mentioned? I’ve never heard of that. And I guess your progesterone and estradiol patches are for during your 2 week wait as well? I have also heard multiple attempts/cycles can help. I’ve talked to a few women with KS who have had kids and it seems like most of them needed multiple cycles (like five!!) for it to work. It seems really slow going at times. My doctor doesn’t specialize in KS but seems to know his stuff. They were able to tell that I DID ovulate on my Ovidrel trigger last cycle, it just didn’t work for whatever reason.

Feel free to keep in touch with progress! It can feel lonely sometimes, but every now and again new KS people do seem to crop up. I wish there was a more centralized forum for all KS women trying to get pregnant!

Good luck!


#19

Hi Dana,
The Crinone is a progesterone cream support that will be taken after the trigger and TIC along with the estradiol patches. So they have me on Menopur first, Ovidrel to trigger, then the Crinone cream and estradiol patches (if we can get the Menopur to work first that is).

I’m surprised they had you on Menopur for such a long time! Glad to hear that you were able to get most of it to work on the first attempt. I guess any progress is better than no progress, right?

This has been my routine so far:
2/14-2/17: 75iu/day (1 vial)
2/18-2/20: 150iu/day (2 vials)
2/21-2/23: 225iu/day (3 vials)
2/24-2/26: 300iu/day (4 vials)
I will go in and have another estradiol blood test & ultrasound Monday to see where things are.

I wish my doctor’s office would explain the results a little better so I can follow along with the progress. My E2 (I think this is the estradiol test) was 22.5, 21.33, then 24.97 on the third test. I’m not sure what the “ideal” level is they are looking for.

As far as follicles, the first two results said my left and right ovary are “<11mm Few (2 to 4).” The results from my last test said “<11mm One” for each side.
So I’m guessing I’m just slow to respond? The lab techs have been having a tough time all of a sudden with the ultrasound to find my ovaries. So I think that’s not helping either.

It can certainly be lonely sometimes with not many people understanding KS. My doctor seems to be knowledgeable with it though & seems confident in what is needed for treatments. It’s just frustrating when things go so slowly sometimes.

I hope you have continued success this cycle!! I’ll try to share my results when I get them on Monday. I’m going to assume I’ll be bumped up to 5 vials / day, but I’m hoping that we start to see results soon and get move on to the trigger and TIC.


#20

Update: 2/27/2017

Just got the call from the nurse, Sarah. We are to continue with treatment and up the dosage to 375iu / day (5 vials) for three days. I’ll go in on Thursday 3/2/17 for another round of blood work & an ultrasound.

I have one LS follicle measuring 8.6mm after 14 days. The RS does not indicate a size because the follicle is too small. My estradiol is still very low too (hanging out between 24 & 25). Sarah indicated that this means the follicle is not maturing.

Even though neither of those are “ideal results,” I’m happy that something is finally measurable. Follicles generally need to be between 16-20mm to be mature & large enough to be successful. So we’re not there yet, but we’re seeing some response.

Sarah feels that if we don’t see good results Thursday that we may have to cancel this round. However, she said that once before and the Dr. kept us going. We’ll see what the Dr. says Thursday before dealing with that.

I’ve heard from other women that sometimes the body can do crazy things and surprise us sometimes. Some have been in similar instances and at their next appointment they miraculously have mature follicles and can trigger.

So it’s really just a waiting game to see what happens. I’m actually thrilled right now that we have a response at all. Even if we don’t get it this time around, there is at least still hope that this is possible. :slight_smile: