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 🤞

@MWPCOS it’s hard not to get frustrated because of our condition. Just don’t stress yourself. Our bodies react differently to medication. Some of the women on this thread conceived after more than two cycles of medication and some in the first cycle. by the grace of God, it will happen for your too like it did for the majority of women on here.

take another test after 6days of missing your periods. 2 days it too early. FYI the cheap strips can detect HCG levels as early as 6 days so you don’t need to buy the expensive tests.

God willing it will happen for you. Stay positive.

Hi everyone,

I am officially starting my first medicated cycle tonight. I am walking around with a lot of anxiety. Afraid to fail and afraid of not having control over this situation. I have also been questioning why I went on this trial instead of just taking the medication I was prescribed first. But reading these threads and other videos online has really helped me and I have decided to just try to relax and control what I can.

I phoned the hospital today and I have a scan booked for next Friday which should be my day 11 to see how I have responded to the medication. Usually, I ovulate around day 35 - 45 so I hope this helps without putting myself into superovulation.

Sending hugs and thoughts to all you women out there. Just know that you are not alone and we are doing this together. Also, we might help other women in the future by being part of a study like this :)

Stay positive.

Evening @Cherryblooms I am wishing you a wonderful Loci journey and hopefully an amazing outcome.

My first month of starting I felt the same. I was in a bit of a tizzy to say the least. I found this gave me some anxiety which probably added to my side effects. 2nd month absolutely fine (because I had calmed down haha)

On a separate note if anyone else happens to read this also , I mentioned in one of my prior posts I do not get any scans for tracking as many of you have mentioned.I spoke to a nurse about this and asked why. I certainly feel a lack of support in the process (for myself and others who do not get these) and I was informed its down to which hospital you fall under.
I just take the pills and report back on if I got a positive ovulation peak, which has felt me feeling rather lost.
I am under Liverpool womens and was wondering if any of you would mind sharing which hospitals you are under ?

Welcome to the crazy journey @Fruitfully and @Cherryblooms!
It's an emotional time starting the trial and it's easy for the nurses etc to say trust the process but I can hold my hands up and say the process is worth trusting! I was 5 months before my periods were regulated to 30ish days and I finally got confirmations of ovulation.

@MWPCOS how are you feeling now?

@Pom99 I got scans every month but that was to see if I would ovulate, once they confirmed ovulation on month 5 (technically month 1 of the trial starting) they told me I wouldn't get more scans because my body was doing as expected with the medication.

I have my 12 week scan next week and I can't believe the crazy journey it's took to get her but it feels so worth it! Stay strong girls x

Oh wow. I also had scans and was told this month as the confirmed ovulation that I won’t have any more scans as I am ovulating now. My hospital have said that the 6 months for me started as soon as I started the trial, even when I didn’t ovulate. I’m not sure if this is common on the trial or not?

I'm feeling better and have finally come on my period, I think it’s adjusting to the hormones, which I’m not used to. I’m still feeling upset that it didn’t work this month when I ovulated and I think that’s making me over think about the situation, but I guess it still takes time.

Im based in Coventry.

Thanks @Pom99 for the warm welcome and for sharing your experience. And thank you @Tryingforbabyb for sharing your story and HUGE congrats to your baby! That is so wonderful! I already feel better x

To share my experience I am with Guys in London and their protocol is that the first month they scan you day 11 until ovulation and then confirm with blood work day 21 (or 7 DPO). If that works they will just confirm with a blood test every month. However, one of the things that is making me very anxious is the fact that I am ovulating on my own (just very late each cycle.. around day 35-45 (which brings my cycle around 60 days) so I am not really comfortable with not scanning and risk superovulation and/or the lining getting too thin. I addressed this with the nurse and she did share that it is not their protocol but that if I asked the Dr she might approve it. I have also suggested that if this is not feasible then I can pay for the scans myself. Maybe this is something I need to accept with the trial but I do feel very uncomfortable not monitoring during the months.

I took my first pill last night and I haven't felt anything yet apart from a funny feeling at some point during the day but who knows where that came from!

Thanks @Cherryblooms it’s indeed a crazy journey. Gonna be starting my 2nd cycle soon. I’ve been really down of late. It’s exhausting! But what can one do expect to keep trying. Thanks for the encouragement. Hopefully, I’m gonna ovulate on my 2nd. Will keep everyone updated.

@MWPCOS wow It's crazy how it's so different! I done 5 months and my 5 month was technically my month 1 because they got me ovulating. Lucky for me that's all I needed but reading this thread beforehand, I needed to really trust the process.
I'm based in central Scotland

@Cherryblooms I really feel your pain on the scan situation! I got in my head that I was ovulating later in my cycle (roughly about the same as you) and I asked the nurses one month to please just scan me later (day 21) there was a slight increase to my follicle from day 10 scan but not as they would expect on the medication. It's easy for me to say now but don't be disheartened by it, the medication once you get onto the right dose will regulate your period and become text book periods. I ended up on 3 tablets a day for the Metformin/Letrozole before it actually worked. The third month when I went to 2tablets I ended up with a cyst so that deflated me!

Good luck ladies we have got this!! X

So I am on third day on cycle 1 (taking the third pill tonight) and I am on my 4th of my period. Today I had the worst cramps which was very unusual for my 4th day, I am also noticing that I am bleeding a tad more than usual. Do you guys think this could be the effect of the treatment already? Feels too quick but I do know cramping could be one side effect. I had to lie down today because it was so uncomfortable.

Apart from that I am not feeling any other side effects yet. A shivering feeling sometimes and easily annoyed but that could just be me. :) I feel like this period I am having now everything is "dialed up".. I wonder why?

@Tryingforbabyb Wow I can imagine that must have been so deflating. I am anxious around feeling deflated but also at the same time trying to just tell myself that I will push through this. For some reason Ive got it in my head that I received clomid but hey.. what do I know. Do they tell you afterwards the medication that you were given? And if you mind mind me asking but did you have to do anything once you got the cyst or what happens then? I worry a little bit that since I do ovulate naturally but late, that this will send me into superovulation but only time will tell! Did you ovulate on your own before the medication?

I am so grateful for all of you sharing your experiences and stories. This thread has really helped me the last couple of days. Stay positive x

Hi all, can I join? I just picked up the Loci trial medication yesterday, and waiting for period. I’m currently day 18. Via my trust it’s blood test to test progesterone level in 1st cycle and also a TV scan to check the ovulation meds are right effective dose. With the metformin/ placebo Iv been advised to take 1 tablet a day for 1 st week and then increase to 2 the following week and 3 the week after that.

Anyone had any side effects from any of the meds?

Im with St. Peter’s hospital (surrey).

Have a 4 year old daughter who was first pregnancy and did have a MMC in 2021 and we haven’t been successful conceiving since.

good luck everyone ❤️

@Cherryblooms I definitely noticed an increased bleeding taking the tablets.

So I expect to find out what medication I've been on in the next few weeks. I have roughly 1-2 weeks left on the medication. When I had the cyst because of the size there wasn't anything they could do as it was smaller so you just need to let it run it's course. I think I had to wait 7 weeks before they would scan me again unless I got a period. At around 4.5weeks I had really bad pains in my stomach cramping and uncomfortable. They brought me in for a scan and confirmed the cyst had reduced and it was period pains I was experiencing! We don't know if I was ovulating before as there was no official tracking etc, I did try ovulation sticks before I was referred but the nurses said they were inaccurate.

Good luck @dreamingofstars! Yes I had side effects for the first 6 weeks with my body trying to get used to the medication. I always felt different symptoms every time the Metformin/letrozole was increased too.

Welcome to all who have joined since I last posted, it’s lovely to see so many ladies finding comfort in this thread as I did 🥰

I am under UHCW in the midlands and I had the tracking scans.
I took 2 rounds of the medication before ovulation was confirmed, so I’m unsure if they would’ve kept scanning after this. I had a hycosy booked for the beginning of August, my lining was showing at just 4mm so they were debating whether to pull me from the trial. They couldn’t prescribe anything to help it thicken up.
Despite the bleak outlook, I found out I was pregnant at the start of July.
I have just this week had my 20 week scan, baby is growing fine. I’m now under a more local hospital but am shared care so will have more scans than usual.

To everyone feeling like it’ll never happen, hang in there because I remember feeling so despondent. It was only reading the ladies encouraging words that made me feel less alone and able to retain a glimmer of hope that one day it might work out for me too.
There are ladies here who it has worked for on attempt one and attempt five, so keep the faith 🩷 wishing you all success in your journeys x

@dreamingofstars of course you can join. Welcome to the group. I have now completed my first phase of the medications (I am on day 15) and I haven't felt any side effects apart from that I def got a heavier bleed, although this was day 2 and 3 of my medication so not sure how much it could have affected it even and I had worse cramps than usual.

@PCOSlife thank you for sharing your story! The only thing we can do is to think positively and hope for the best. Sharing stories like yours and others truly makes me feel supported so thank you and congrats to your 20 week scan :)

So I went in for my first scan on Friday (day 13 scan) and I was really nervous about the outcome. Fortunately, it was good news (I think) for us as my lining was 7.1 mm and they called it triple lining and the doctor was happy with that, she said that that means that I am responding to the medication. I also had around 16 follicles on my left side that weren't mature. However, the action was on the right ovary and I had two "big" ones that were measuring on average 13 mm.

As I have always had irregular long cycles (around 50-60 days) I think this is good news for me to have 13 mm already this "early" in the cycle. I am hoping now that these will grow a bit more and hopefully, I will ovulate in a couple of days. I have been doing OPKs the last couple of days but they are pretty faint, also getting a circle on the advanced OPKs. I also asked about my last month's blood result (done roughly 7 DPO) without medication and I had 35 on my progesterone test which they said did confirm ovulation. So I am ovulating on my own but just very very late in the cycle.

I have read that follicles can grow 1-3 mm per day. Does that mean that I will likely ovulate in around 5 days maximum? Or can they stop growing? I am trying to focus on the good news that I seem to have responded well to the medications but can't help to freak out over the things I can't control.

Update: Went in for a second scan today at CD20 but the follicle from last time was completely gone and only small follicles around 8 mm was there. The Dr couldn't find a corpus lutum either so they want to double my dose next time. Feel so deflated as I have been testing every day since CD8 and this morning just 2 hours before the scan I got a solid smiley and strong lines on my OPK thinking I was going to ovulate now and we have been baby dancing every second day :(

I took a progesterone test as the Dr wanted to check if I had already ovulated but I don't think it will show anything as I haven't even gotten something close to a rise in the OPks and my BBT has not changed.

Is there anyone here that has had experience of follicles just disappearing? I am also wondering what happens now.. if I haven't ovulated, do I just wait until I hopefully ovulate later in my cycle and for my period to start?

Welcome to all the new ladies, wishing you all the best journey and all the luck in the world 🤍

This may be my last post, we are now on cycle 6 - so our last round on the trial. I feel really sad, but I am taking the positives that the meds did make me ovulate, hopefully when we see our consultant next month he can gives us some more guidance if this cycle doesn’t work for us x

I’m hoping this cycle works for you @EmJayRud, and that your consultant follow up is helpful too. Sending much love ❤️

@Cherryblooms did you get the result of your progesterone test? Could it be youl ovulate later?

I am very new to this having just started trial, so currently on day 7 of cycle, I have a scan scheduled this Thursday (day 11 of cycle).

only first week of taking the metformin/ placebo (single dose) no side effects yet so I wonder if it’s the placebo but maybe too early to tell with it being single dose so far…

Wishing everyone the best.

@PCOSlife such lovely news. Hope you have a lovely rest of pregnancy ❤️

Anyone else also under St Peter’s Trust/ hospital in Chertsey?

Lovely to see so many new people in here and stories

it really is a wild ride! After ovulating on month two I was told I didn’t need anymore scans and to use ovulation tests.

I had a HyCosy last month and this triggered my period 8 days early. I then took the medication as directed and have had no signs of ovulation or LH serge this month. Currently feeling so so frustrated as I don’t know what’s going on with my body and feels like a wasted month, in the unknown!

hope everyone’s cycles are going ok this month!

@MWPCOS Could it be you have ovulated and just missed it with the OPK by a day or so? Fingers crossed for you for next cycle.

This is my first cycle and had scan on CD11 and they seen a dominant follicle but just the one. On CD13 I got a peak. On CD16 I had another scan and they could see corpus leutum and then in right ovary a smaller follicle. Had progesterone blood test today (CD19) and wondering what it would mean if progesterone was low but the Corpeus leutum was present… does anyone know?

good luck everyone x

I have very low progesterone in cycle one but had the Corpeus on the scan. They confirmed that I hadn’t ovulated as it was below 30. I then didn’t come on my period so knew it was correct. Hope that helps.

Thank you that’s helpful to know, thank you. I think il get my blood test results Monday re the progesterone level. Did they increase your dose when that was found @MWPCOS ?

I did, I went to two tablets, which worked! I know this month for me has been funny but I am not sure if this is because I wasn’t due my period - so I think that has impacted. I went from one tablet to two and saw a massive difference the next month! X

@MWPCOS that’s really positive that the increase helped. Everything crossed for you x