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 🤞

Period arrived today 😔

hi everyone !
Picked my tablets up 4 days ago, so just waiting for my time of month to arrive then I can start the trial so excited and nervous !
sending so much love and strength to yous all, hope yous all have your happy ending xx

Hey everyone, can i ask what supporting scans anyone is getting started on the trial?
Unfortunately i just feel so lost with everything right now. As i have mentioned previously the team At Liverpool Women's have told me they do not offer any supporting scans and I'm just expected to take these tablets and “report back” if I confirm ovulation.
Being honest I am about to drop out of this trial as I do not feel I am being offered anything apart from the “drugs”.
I would rather self fund and receive scans / support to guide on medical best practices

Hello! This is incredibly dangerous to take the drugs and not receive scans. They should have scanned you to see if your lining is thin enough and then regularly to monitor the follicles. I am so sorry that you are experiencing this!x

Hi, I'm in the same boat. I started the trial then after the first cycle had bloods to check if I'd ovulated. Then had to just keep taking the metformin/placebo until hearing back on what to do next. A while later got upped to 2x the red ones and heard nothing back after. Then even messaged to say I was running low on the white tables, then that I had run out and heard nothing back for over a month! Feel like I was roped into doing the trial then just forgotten about

Finally started the meds today, so nervous but excited hoping we can finally get somewhere , good luck everyone 🤞🏼

Fingers crossed for you @Brooklyn2000
I am now on my third cycle now. Day 7 of this cycle. I have been ovulating on the lowest dose which is really positive, my partner does have 1 percent morphology so double whammy.

How have you found the trial so far ? Wishing you lots of luck this round 🤞🏼
just curious as this is my first round , as I’m trying to ring my nurse for the scans/blood tests nobody is answering just curious on what to do

My experience has been quite good as in for my first month I had two scans around day 10 and day 14 to check what was showing on and then a blood test around day 21 ish. As these showed I ovulated I stayed on that dose and now just have blood test so no scans unless my blood test suggests I didn’t ovulate.
My contact through the team has been email and if I have any questions they do get back to me within a day or two.

I use digital clear blue OPK tests from day 10 of my cycle. When I get that static smiley face I email them and they let me know blood test date.

I have a feeling I’m not on the metformin- it’s a hunch. Looking back I did have a bit of joint pain when starting the ovulation meds first cycle.

Have you got an email address too? I think my fertility team as it’s the research team I’m working with are off until 4th so maybe with Xmas it’s a bit scarce on ground? Hope you get some answers soon. X

Long time lurker here…. I managed to get my BMI down to 34 and have been accepted into the trial.
just before Christmas I got my first ever BFP before I even signed consent forms, as it happened my appointment got cancelled due to sickness anyway.
however, on Christmas Day I miscarried at 6 weeks.
i have my consent appointment tomorrow to get started with the trial.
what are your experiences of getting the drugs after the consent? I think I should bleed in 2-3 weeks

I am so sorry for your loss @Ncl31, we experienced a miscarriage around Christmas 2021 and it can be so lonely. Sending you lots of love.

I signed up remotely over the phone and online form and then the following week had an appointment to ask any questions and sign some other forms and got given the medication there and then.

x

Still not heard anything back yet have rang the mobile phone provided since but still nothing , was wondering if it was something to do with new years so don’t want to get on their case will just wait for them to ring me , soo just bought ovulation strips for now
what makes you feel like you aren’t on metformin? Have you had any side affects or you feeling fine . I received the big red pills and also smaller white circle pills I’d love to know what they are .
hoping you’ve received some positive outcomes lately any signs of ovulation? X

Sending lots of love and strength to you ! Hoping this trial you get something positive out of it , stay strong and hopeful. I got my meds same day as I signed the paper work. Period never came so then had to pick up provera . Been fine taking the meds so far . Some head aches now and then but it would be worth it if I were to convince x

@dreamingofstars im so sorry to hear of your loss too. I’m assuming if you’re on LOCI you haven’t been able to conceive again?

@Brooklyn2000 fingers crossed we all get something positive out of this. I’m signing the consent forms online via a telephone consultation tomorrow, im assuming they’ll give me more information tomorrow too.

Any news if you don’t mind me asking ? Did they say as of when you were able to pick your meds up? X

@Brooklyn2000 of course.
the doctor was happy with everything, I signed the consent forms and they said one of the research nurses will be in touch either today or early next week to arrange getting my meds etc…

Hello, also on LOCI trial. 6th cycle and feeling like nothing is working. Confirm ovulation on cycle 1 and 2 by scans and the 4 following cycles by opks.

Anyone gone on to try letrozole after cycle 6?

Hi everyone,
I was just accepted onto the trial last week picked up my meds but as my periods don’t come naturally I have to take something that’ll make my period come before I can start. I’m truly wishing you all the best of luck with this trial. The doctor I saw was really lovely and took their time with me as I asked questions hoping people have had or will have the same experience?

Wishing you all the luck in the world this cycle hope you get the answers you’re wanting 🤞🏼if you haven’t already start taking NAC, L-carnitine and inositol see if that helps xx

hope this brings you lots of good luck , yeahh did you get a 7 day course to bring on period ? Only down fall I’ve had his head aches which is fine as I’m hoping this brings some happiness to our lives xx

@Brooklyn2000 Aww thank you for the advice my fingers are crossed for you and all the other ladies on the trial, yes I am on those currently. Yeah I’m nearly at the end of it tomorrow’s my last day and fingers crossed will get a period so I can start. Oh I hope the headaches aren’t too bad but same I’m hoping this helps all of us fulfill our wishes, did you have to take the meds for a period as well?

Yeahh I had to take the meds I was worried because my time of month didn’t come until 13 days after taking those , but I had a full 7 day cycle if you start spotting that’s noticeable I would personally class that as your day 1 that’s what I did then took the tablets the next day, did you get the two tablets ?? One is massive that you take for 5 days isn’t it the other ones (I’m sure it’s called metformin ) that’s okay to take I’m currently on 3 of them a day , so hoping it brings something positive to us

Yes I did one of them is a struggle to swallow but only 2 more days with it aw me too especially with all the side effects of the headaches and mood swings

Hello everyone, I'm thrilled to share some exciting news , I got my first-ever BFP after many years. Currently in my fourth cycle with the LOCI trial, I'm still in awe. Having battled PCOS for over two decades, I want to use this platform to encourage everyone in this phase to remain hopeful. It's all gonna end in praise🙏

@Fruitfully og goodness that is amazing! Congratulations, they look like amazing positives!
how many DPO are you?