Anybody on the LOCI trial?

[BeaKind]

I’ve not come across any threads for this so thought I would start one as a place for us to share our journey.

I’m going in for an ultrasound and blood test tomorrow. Hopefully all will be ok and I’ll be accepted on the trial 🤞

Hi all,

I just had my scan today (day 19) and my lining was great and thickened however my follicles had not grown at all since the last scan. I only had 1 follicle that was measuring around 12 mm. I am currently on a double dose and they want to increase the dosage now to a triple dose. My first cycle with a double dose worked like magic and I ovulated on day 16.

I feel so discouraged that for some reason is just not working. I know things like these are a mystery but has anyone been in the same boat where the lining is thickening but the follicles are not growing/responding? Equally, has someone been on tripe dose?

@Cherryblooms sorry to hear it’s not been straight forward for you. Unfortunately I’m no help as just on my first dose this cycle

@Cherryblooms Sorry about what you are going through. Yes, it’s common for the womb lining to thicken without follicles maturing. In my case, my lining thickened consistently during the trial, but I only conceived on my fourth cycle. Here’s a summary:

1st cycle: Follicle was 13mm on day 9 but didn’t mature further (1 tablet each).

2nd cycle: Follicle matured (25mm) but no success (2 tablets each).

3rd cycle: Missed scan but likely ovulated; still no success (3 tablets each).

4th cycle: Follicle matured (24mm) on day 12, leading to conception (2C/L & 3met/placb).

I know it's a challenging journey, but there’s hope ahead. Stay positive. there’s light at the end of the tunnel.

@Cherryblooms I feel for you I guess after a lifetime of being told it’s near enough impossible it’s hard to keep believing but you can do this and you’re not alone.

@Fruitfully thank you for sharing your journey it’s made me feel positive once more about things :)

I have been told I didn’t ovulate last month via blood tests as I can’t tolerate the scans but the last week or so I’ve not felt like myself nausea headaches cramps I don’t know whether it’s to signal the start of my period or something else? Has anyone else experienced this??

@HavingHope24 how are you? I have had cramps and full feeling around ovulation at times. I hope it’s conception for you.

@Fruitfully are scans the procedure for you hospital? It’s so interesting how everyone’s experience is different and be interesting to see if this is acknowledged when research is published.

I have just had my progesterone blood test for this cycle (cycle 5), each time I have ovulated. I feel I’m on placebo and not metformin due to no stomach/ gastro issues but I could be wrong! I think I’m on clomifine. I do have a consultant telephone app late April where I think il be unblinded and I’m thinking that may be the end of our journey (we do already have a Dd together who is 4) and not in a position to do IVF/ ISCI, also partners sperm morphology was 1 percent at last testing.

Hope everyone is doing okay as can be and wishing lots of luck to you all xx

@dreamingofstars sadly no ovulation happened but fingers crossed for next time. I am so sorry about your journey but hopefully there will be options for you.

wishing you all the luck with the trial ladies xx

Hi , congratulations to all those who have been successful in this trial and baby dust to all those who are in same boat as me .
I am on the third cycle of loci trial
cycle 1: ovulated around cycle day 14 , had 2promising follicles , ovulation confirmed by blood test .
cycle 2 :had no promising follicle 6mm was largest , ovulated around cd20, missed dtd as was relying on clearblue ovulation kit which showed a static smiley on cd16 . Ovulation confirmed by blood test cd28
cycle 3 : no promising follicle , having another scan on Monday , my clearblue is showing flashing smiley from cd11 .
I am on 1tablet of clomifene/letrozole and 3 tablets of metaformin or placebo , quite sure I am on clomid and placebo , it’s very frustrating to see how the same dose of medicine can have different impact on each cycle . Would love to hear from others who have similar experiences .

Hi all,

Checking in here to give a brief frustrating update. I am on cycle 5 and this cycle I upped the meds to 3 doses of Clomid/Letrozole (my gut says I am on Letrozole). I went in for a day 10 scan that showed 1 follicle around 12.3 mm, 1 follicle 11.5 and the 1 follicle 11.3.

I went in for another scan today at day 19. My clearblue is showing static smiley and my OPKs are screaming positive. The scan showed the biggest follicle being 12 mm.. She said that the lining looked like I could have ovulated but she couldn't find a corpus lutuem to confirm this.

We agreed that I would do a blood test next Thursday (day 27) to confirm ovulation or not. I am so frustrated that everything looks promising and then I feel like I am on square one again. I also really wanted to go on a trip with my sister this weekend until Wednesday but now I don't know if i should go or not because i don't want to miss my ovulation window!

I’m so sorry you’re feeling frustrated by it. I’m on cycle 2 - currently 6DPO and feeling incredibly lucky that I’ve ovulated on the lowest dose of clomid/letrozole on both cycles. I ovulated on CD16 in cycle 1 and CD15 this cycle.

Congrats! Happy to hear that it is working for you. I ovulated on all cycles but one but some of them were pretty late so they decided to up the meds. Fingers crossed for you!!

I was told by fertility nurse that opks are not reliable when on meds and if u have pcos .

@Cherryblooms
hi lovely ! Sorry about the news, hoping you get your good news when you go for the blood test. I would say being on a higher dose you won’t want to miss your ovulation window but you do what you think will make you happy! Xx

unfortunately I’m on my 3rd cycle (they’re saying I’m on my second as they missed my blood test on the first ) and I have not ovulated as of yet but go for my 2nd blood test on the 18th, I am currently on 3 metformin/placebo and 2 clomid . If I have not ovulated again they might be upping me to 3 tablets or I might be taken from the trial 😒

fingers crossed ladies for us all keep staying strong xx

Yes that’s correct, they can’t always be relied on. My fertility nurse told me to use them and watch out for other symptoms of ovulation which I did. She also told me to track BBT as that is the only way to confirm at home I without blood work that you’ve ovulated. So I do that too.

Hey everyone,
so sadly no ovulation first time around they decided to double up my dose, I had a blood test done on day 21 awaiting results fingers crossed some positive news this time but the waiting is a hard game wishing you all the best of luck with the trial, I do feel my emotions are getting the better of me at the moment don’t know whether it’s a side effect or whether it’s just the journey 😞

@HavingHope24 do you track BBT?

@Ncl31 I am going to start doing this now.

Sadly scan and bloods confirmed no ovulation this time, being upped to three tablets let’s see, I am thinking about maca root but really unsure how to change things at this point any advice/tips would really appreciate

@HavingHope24 it feels like it takes over doesn’t it ! Always waiting for the news you want to see if you’ve ovulated . I feel that when I take the red pills I get really emotional and tired and bad head aches but I don’t want to complain too much as I’m hoping it will work. Praying for you and sending you so much baby dust ✨

I’m really sorry you haven’t had a confirmed ovulation, I feel incredibly lucky that I have. Although just through BBT and no scans or bloods - my centre doesn’t do either as they stopped during Covid and feedback from patients was it was less stressful than needing to go in all of the time.
i can’t see how taking maca root would have a negative impact, in my opinion I just take what I think might help.

Aw @Brooklyn2000 I agree I hope the day comes soon thank you so much how have you been finding things?

@Ncl31 to be honest with you my periods have been all over the place so maybe it’s just my system needing a reset oh wow I think I’m definitely going to start tracking BBT though

Hi all,

Hope everyone is going okay.
Sadly, my period arrived today and this was my last cycle on the trial. Each time I have ovulated- confirmed by OPKI and blood test 7 days later. Did have a scan in early days which showed I was responding. Have an appointment with consultant at end of this month to be unblinded and to see what other options there are.

We do have a DD 4 years old and so IVF isn’t a possibility (financially). I appreciate we are very fortunate.

Does anyone know if you just stop taking the metformin/ placebo? When I went to my blood test it was a different person to the last time taking the blood, and I didn’t think to ask.

I think I’m on placebo and not metformin and clomifine (just going with that due to headaches in early days and joint pain, my acne on body has been awful) and weight gain.

Wishing you all the best x

Hi ladies,

I gave birth to a beautiful little girl, she’s one month old today 🥰
Just wanted to let you know that my CRM nurse contacted me, and asked if I had requested to be informed of the medication combo at the end of the trial, which I had, and she confirmed I was given letrozole and the placebo.

Thank-you for all of the support, and I wish all of you success and good health on your journeys 💗

@PCOSlife congratulations, hope your and little girl are doing well. X

I’m 11–12 DPO now as confirmed by blood test and usually I would have some spotting by now. I’m scared to test tomorrow but I am hoping so so so much so keep your fingers and toes crossed for me ♥️ i can’t sleep because I keep thinking about am I pregnant or not pregnant. Maybe this could be the time etc

@PCOSlife congratulations to your little girl! All the best to you and so so happy for you x

@dreamingofstars I’m so sorry to hear about your period arriving today. I know the feeling all to well. Unfortunately I don’t know the answer to your question but when I have raised it to the team it seems like after the study you can be unblinded and then continue with the other medication if that is an option (for example if letrozole hasn’t worked out, you can try Clomid).

@PCOSlife congratulations!!

@Cherryblooms how did you get on with testing?
I am on CD 3 of cycle 3.
DH has a work trip and the annual boys camping trip in my predicted fertile window this cycle so I’m not holding out much hope. He’s trying to get at least one of the moved to another week so we don’t miss the full window but it’s just one of those things if we do.

@PCOSlife congratulations so pleased for you x

@Cherryblooms keeping everything crossed for you! Xx

I am on cycle 3 CD 6 just finished my course of three tablets of clomifene or letrozole but surprisingly had a spontaneous period this time which has not happened in a very long time hoping this may be the time I ovulate x