Kallmanns syndrome & iui


#1

Hi,
This is my first time doing anything like this, i am desperate for some help & advice good or bad.

I was diagnosed with kallmanns syndrome when I was 19 and have been on medication to control this, I currently take hrt to give me the oestrogen hormone that my body cannot produce on its own.

I am now awaiting my screening tests & IUI treatment appointments which are in August.

I would love to speak to someone in or been in the same situation or even anyone who can give me any tips on thing to do before IuI :cross: :pray:
Thank you for reading my babble lol xx


#2

YAY! A fellow Kallmann lady! We are few and far between on here…feel free to PM me if you want to chat extensively.

I was diagnosed at 23. I have “partial Kallmanns”, which means I went through puberty other than never starting my period. I also am completely anosmic…not sure why the first 4 endocrinologists didn’t ask about sense of smell!

Anyway, we started TTC when I turned 30. Just did injections and timed intercourse. It took a few cycles to get the dose right, but got our BFP a few months later and have a healthy boy who will be 3 in August.

Started trying for #2 a year ago, and the injections weren’t working very well. I kept overresponding and they would cut my meds back to avoid multiples, which meant everything fizzled. Then, I struggled with cysts due to the multiple large follicles. In almost a full calendar year, we only did five cycles and only two of them were good at trigger. We finally did a round of IVF in April and were successful on the first try. I am now 14 weeks along with baby #2. :slight_smile:

So yes, it is very possible to have success with IUI, especially if you are responding well to the medication. Fertility outcomes for KS are excellent, and I am living proof…you just might have to jump through some hoops to get there. Best wishes!!! Again, happy to be a sounding board if you just want to vent, or share any info you need. Hugs!


#3

And as for tips…personally, I felt like I responded better to the meds on the cycles immediately following birth control. Not sure if that’s true or not, but I would take your pills right up until the month you start trying to keep your cycle regular (if that’s what your doctor recommends).

Also, a heads up about estrogen levels. Mine have always been way, way lower than most of the women I read about on here. I think that’s because we make so little additional estrogen on our own. Most girls get 200-400 per good egg. With my son, it only was around 160 when we triggered and that did the trick! With my IVF, it was around 1000 and we had 10 good eggs…that’s a surprisingly low E2 for that number. So, don’t worry if your E2 numbers don’t seem to compare much!!!