Newbie Introduction - 1st Menopur Cycle

katherind

Hi All,

I'm new to the boards and wanted to introduce myself. My name is Katherin and I'm 29 years old. When I was in my early teens, I was diagnosed with Kallman's Syndrome. This is an endocrine disorder that basically causes me to have anosmia (little to no sense of smell) and fertility issues. There are some other pieces to this condition, but these are the pertinent ones to my post. Based on the diagnosis,  I already knew right off the bat that I'd have to undergo hormone treatments in order to get pregnant.

My husband and I did all our fertility testing in 2016. My doctor felt we were good candidates to start with Menopur injections and timed intercourse. I am now on day 6 of injections. I did 4 days at 75 units (1 vial) per day to start, but at my last ultrasound appointment on Saturday, things were too quiet. My doctor upped my dose to 150 units (2 vials) per day for three days. I go back tomorrow for another ultrasound & blood work to see if any good follicles have produced. I'm much more tired and experience twinges & some aching on the higher dose. I've read that some women have felt these twinges in their ovary area & lower back and they found that things were actually working for them. Their next scans usually had more positive results. My fingers are crossed that mine will be the same way! 

Has anyone else experienced a lack of energy or twinges / aches while on Menopur? If so, did you generally see better follicle stimulation at your next appointment?

This is a nerve wracking process, but I'm trying to remain calm  & hopeful. I look forward to joining the Bump Community & participating and sharing experiences with you all.

~Katherin

[Deleted User]

Welcome!  I don't have any experience with menopur, but you're in the right place... ❤

laurad75

Welcome. I was on menopur and gonal-f my last cycle and at one point I had pretty intense back discomfort. I thought it was from exercise (which I was barely doing) or carrying heavy groceries but my acupuncturist said it could def be from the meds. 

gwinnyblack

welcome! You are in the right place
Good luck!
xx

katherind

Thanks all for the warm welcome!

@laurad75 I am in the same boat. I've had a lower back ache since being on the higher dose of Menopur.

I went for my appointment this morning to do blood work & another ultrasound. The techs keep having problems locating my ovaries. I found this a bit odd, but they said sometimes that happens and to not worry about it. Just waiting for the call with results and my next instructions.

Have a great day all.

katherind

 Well, I didn't get the most positive news today.

We are now going from 150iu (2 vials) to 225iu (3 vials) of Menopur per day for three more days. The doctor's office said I still don't have any measurable follicles at this point.

I will get blood work and another ultrasound again on Friday to check progress. The nurse mentioned that the doctor may order us to cancel this attempt if we don't see good results on the next tests.

I know this is only our first attempt and it could take a few tries. Trying to stay positive.

cakeforbreakfast

If the techs are having trouble finding your ovaries it could be gas (even if you don't feel gassy) or your bowels can be blocking them, and both are pretty normal so don't worry . As for follies, a lot can happen between now and your next appointment, I almost had another cancellation but my body just decided to work really slow; went from a single follie and the clinic ready to cancel and now I'm at 9! 
And if it doesn't work this time, you've still got room for more meds because you started on a really mild dose . 

katherind

@cakeforbreakfast Thank you for calming me down. This is my first time through the process and I feel clueless as to what to expect! (And congratulations on your results - I hope things are going well!)

If there is one thing my RE could do better, it is to communicate just a little more with me through this first cycle. I only deal with the lab techs & get calls with my next directions. There's really no where in there that the doctor updates me on progress and what results mean.

This is really the first time my body has ever gotten a signal to produce follicles or eggs. Kallman's Syndrome basically lacks the message from the brain to the reproductive system to do such a thing. So, hopefully, it's just being slow and trying to figure out what to do.

I will know more after my appointment tomorrow morning. Hoping for good results!

cakeforbreakfast

A lot of folks say the same as you about communication, it's hard not to feel lost and confused because we don't understand it like they do at the clinic's. And even harder is googling just the right amount lol, too much and you get bad info because it's not specific to you, and not enough means we don't ask the right questions. 

katherind

@cakeforbreakfast Exactly! I did find one person with KS on another site and we're comparing some notes since she seems to be doing very similar treatment. So that seems to help at least a little bit.
 
This is where I've been so far with the Menopur:
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 test & ultrasound Monday to check progress.

My E2 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? I wish my doctor would actually explain what this all meant. It's hard to follow.

katherind

Update:

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. We're not there yet, but we're finally 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. 

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 because we're seeing some response.

LoveDontCostAThing

@katherind that's a really positive attitude/ way to think about things...I think that your attitude alone will get you far in this process

katherind

We are finally making some progress! Up until Sunday, all my test results were just holding on tight and didn't want to budge. I was getting quite frustrated, but tried to remain hopeful. We started on Valentine's day and there was mention a couple times about possibly cancelling if we didn't see progress.

After getting up to the max daily dose of Menopur (450iu or 6 vials mixed in 1mL saline), we are finally budging. 

My Estradiol test was hanging out between 24 & 25. On Sunday, it finally bumped to 52.91 and Tuesday it was 84.56.

My lining on Sunday was 7.0 and Tuesday it was 8.27. The ultrasound tech said they like to see it above 8. So far so good there! 

We finally have a good solid measurable follicle at a whopping 10.44! This is in my right ovary which all along seemed to be the one that wasn't doing anything. There are a few smaller ones, but were not measurable. This new one is still too small, but at the rate we're changing, I'm hopeful it will get big enough so we can trigger. It needs to get to somewhere around 18-22 from what I understand.

 The only area that is still low was my LH. The doctor's office said it is low, but still greater than past appointments. So that is also improving slowly.

I'm glad we're getting somewhere. It may not be exactly where we need to be, but we're responding. That's all I can really ask for to start.

FuzzyDust

Hi @katherind,
When I did my one IUI cycle a while back, I also remember how the RE had trouble locating my ovaries each time. She'd poke and twist the u/s stick, and press on my belly, and spend a few mins on each side looking.
I did 3 weeks of 75IU Menopure with very little progress. Before that, I didn't even know that stims can go beyond 10-14 days. My doctor ended up going to 150IU and that did the trick (a bit too well, as the cycle got cancelled due to too manu follicle growing at the same rate).

I think the estrogen is a good indicator of a potential mature egg (something around 100ish might mean that you get one getting close).

You numbers seem to finally progress quite well, and your lining measurement sounds luscious

Good luck and baby dust your way!

katherind

@FuzzyDust Thank you for the dust! I hate when they twist the stick & prod. It gets very uncomfortable. However, I know that's the only way they are going to find them so I just try to breathe through it. Luckily it only takes a few minutes.

I thought I'd post my results from this first cycle below. It has felt like an eternity, but we're getting really close now. Based off of Friday's results, my RE says we may be able to trigger tomorrow if the follicle hits at least 18mm. We were at 13.55mm on Friday morning. So after two more 450iu doses (Friday night & tonight) I will go tomorrow morning for blood work and ultrasound to see if we are ready. The RE says everything else is right on track to trigger. We just need that 18mm minimum.

I'm really looking forward to the next steps in this process. I hope we continue to see good results!

FuzzyDust

yes yes yes for the 13.55 follie! Looking promising! 
I'm with you on the long stiming - it's taxing. Hopefully you're almost done!

katherind

 @fuzzydust It certainly is taxing! However, it has paid off. We just got the green light to trigger last night! Things really moved along in the last few days. Our 13.55 follie has grown to 19.66. Out of the blue we also have a 17.02 on the left. The 17.02 is technically too small, however, the RE said it could mature in time to also be a good follie to carry. 

We are finally onto the TIC for three days. On Saturday, I will start Crinone for progesterone support. These are once a day until at least my next appointment. I also have Estradiol patches that will be worn and changed out every other day.

On the 30th, I will go for a pregnancy test and see if we have a BFN or a BFY!

FuzzyDust

@katherind - you follies definitely delivered! at lest in size, and the E2 definitely looks good. this is exciting! GL!