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 🤞

@Ncl31 thank you! 9DPO

Wow! 9DPO they’re super strong! Congratulations.
im 7DPO in my first cycle onLOCI, BBT confirmed.
Ive got some mild cramping tonight, really weird just very slight and coming and going. I’ve had sensitive nipples since ovulation too. Nothing more than that

@Ncl31 Oh nice! Mine started with Flu, nausea and sore boobs. When do you intend testing? Please keep us updated. Hopefully it's gon be BFP.

@Fruitfully i done a test this morning BFN which I expected.
when I got my BFP which ended in a miscarriage I got a faint line at 12DPO so I have no idea why I tested today….
going to try and wait until the weekend now

@Ncl31 sorry about the miscarriage. Maybe you are testing too early. Please wait

@Fruitfully congratulations! I’m so happy for you , hope you enjoy every moment x

@Fruitfully sorry to hear about your miscarriage. It’s normal for the line to be faint as it’s before 14DPO. I took mine at 6days as I was too anxious to wait and it was faint but got darker at 14days. I successfully had a son (3 months old now) Congratulations. Enjoy every bit of it.

@Ncl31 congratulations. Enjoy the journey.

😍 congratulations!! @Fruitfully so pleased to read this!

I haven’t been on here in a while but I saw the updates in my inbox and hoped it was good news and it is!
May I extend my own welcome to ladies who have joined since I last posted, it’s a lovely thread and invaluable when you’re feeling lost in this whole process.

I’m now 36 weeks pregnant with my own LOCI baby and I still can’t quite believe it.
Sending lots of love and positivity to all of you 💞

@Fruitfully congratulations

@PCOSlife wow that’s great. Thanks a lot. Safe delivery!!

@PCOSlife huge congratulations! Wishing you all the happiness and safe delivery xx

if you don’t mind , could I please ask how many cycles it took for the loci trial to work ?

Thank you @Fruitfully 💗

@Brooklyn2000 thank you 💖 no of course, any questions feel free to ask! I had to check back to my original posts on page 2, as I couldn’t remember! It was second attempt, with double doses of the huge red tablets and three of the little white ones. My lining was very thin and they were about to pull me from the trial, it was just 4mm when I was scanned so they weren’t hopeful that even though it appeared I’d ovulated, that any egg would imbed, so they were as surprised as me when I called with the joyous news 🥰

Congratulations @PCOSlife and @Fruitfully :)
I am currently on day 13 but sadly couldn’t tolerate a scan at yesterday’s appointment but the blood test didn’t show much don’t know whether anyone else has experienced this, I am booked in for another one on day 21 trying to be hopeful but at the same time worry about the next steps :/

Hi everyone,

I wrote in this thread a couple of cycles ago and then somehow just lost track of coming back here. @Fruitfully big congratulations to you - your post made me really happy and hopeful for the future! Hope you have an uneventful 9 months to come!

As for my own Loci-experience:

Cycle 1 - single dose medication: Ovulation but around day 30+
Cycle 2 - double dose : Ovulated perfectly on day 16
Cycle 3 - double dose: Late ovulation day 26

Cycle 4 (current)
In my clinic, the protocol is to do a Hycosy (tube test) after 3 cycles if not pregnant so I was very nervous and devastated when I didn't get a BFP last cycle. I did mine on day 9 (last Friday) after being nervous all week and it was worse and better than I expected. It is absolutely manageable though and my tubes were both open which came as very positive news to us.

I went in for a scan yesterday (Day 12) and my follicle was only around 11-12 mm and my lining was pretty thin. According to the Dr the hycosy cycle does shed the lining a bit as the procedure in itself can bring a bleed (which it did for me but not a big amount) According to their protocol, even if I ovulate all my cycles as long as they are late they see it as a sign to increase the dose so I am going in for a another scan at CD18 and if no follicles has been recruited then I will go on triple dose for the next 2 last cycles of the study.

I should be happy with my Hycosy results but I cant help feeling so sad about the fact that this cycle looks pessimistic. I didn't expect the tube test to make this cyle a bit wonky and for some reason, I have started to get in my head that it will never happen for me :(

My gut feeling says I am on letrozole + placebo instead of metmorfin. Has anyone else had a triple dose?

Sending positive hugs to all of you int his group. Just reading these posts made me feel less lonely!

@Cherryblooms I have just started my 5th cycle. Have been on the one letrezole/ clomifine throughout (from day 2-6) of cycle and 3 metformin/ placebo. Had a scan in beginning/ repeated scan which showed I did ovulate in first cycle confirmed also with a progesterone blood test. Each subsequent cycle I have had a peak ovulation result around day 13-14 and progesterone blood tests have showed ovulation but am conscious getting towards later stages of trial and double whammy my partners morphology is 1%.

I was told at last blood test, when I asked the researcher midwife, that the consultant would arrange an appointment before the end of trial and unblind me. However I think as I’m ovulating I don’t think I would be eligible for further ovulation induction, and I do know one of them I can’t recall which your not recommended to take for more than 6 months?

I have a feeling I’m not on the metformin and am just on clomifine.

I seen on here a few people are taking other things such as supplements- or have been recommended anything in particular? I take vit d3, omega 3, folic included in the conception multivitamins.

Wishing everyone the best of luck.

Thanks for sharing your experience. It's great that you are ovulating regularly each cycle on one dose - I am keeping my fingers crossed for you! Did you ovulate at all before you were on medication? And what makes you feel like you are on clomid and not letrozole? I am only asking because I have a gut feeling I am on Letrozole lol.

Strangely enough I have been told to not take any supplements at all during the study apart from folic acid, they have been super strict about this for the study in their comms with me. Before the study, I used to take Ovasitol but I stopped since I enrolled in the study.

Hi everyone hope yous are all getting on well,
thought I’d post in here as I am feeling so discouraged and cannot sleep. Unfortunately my first cycle of using the meds my fertility nurse never answered the phone when I rang about the scanning/blood tests to see if I have ovulated , I shrugged it off as it was Christmas and new year time . I have now started my second cycle I have tried ringing and texting since Thursday, it is now Sunday and again same thing is happening . I don’t know what to do I had a lot of bother with the hospitals and doctors sending letters to wrong house after ringing 6 times to tell them to change, dragged appointments for over a year to get diagnosed with PCOS and nothing being done, I then went into this trial with high hopes but I am now feeling so let down I’m just not sure what to do feel like it’s taken over my life .

@Brooklyn2000 I’m so sorry you’re having this problem. Would you be able to pop in to the centre where you get your meds and ask them for someone to call you?
i have just had my first period since being the meds so finished my first 5 days of the red ones yesterday. I’ve not had any symptoms myself but read that some get them real bad. How were you when taking them?

@Ncl31 where I get the meds is the same place as where I deal with the consultant, just feel like pulling out how are they even meant to know if I have another cyst or not or anything.

Wishing you lots of luck this cycle 🤞🏼have you been booked in with any scans or anything ?

yeahh I get headaches from them , I normally take them about 8 so I sleep them off but I really couldn’t sleep at all and felt ill with headaches and sickness I wonder if it was from those.
if you don’t mind me asking how many tablets of each have you been asked to take?

@Brooklyn2000 i can relate I feel like I’m having to chase mine for results sometimes either by email or by phone. But if you have an email address you could try emailing them and see. I know it feels like you’re pestering them but you have a right to ask and find out.

had my day 21 blood test unfortunately not ovulated this cycle, I underestimated the impact of that news on my mental state but thankfully picked myself back up again. Have no idea what the next steps are as I can’t tolerate internal scans anyone have any advice regarding this?

@Brooklyn2000 theyve told ek to take 1 per day of the red ones for this first cycle, then they might up them if I don’t ovulate. I’m now talking 2 of the white ones per day too.
i asked about bloods/scans and the centre said they no longer do either as during Covid they had to stop it and from feedback from patients they felt it was better without them as it doesn’t change anything, just adds stress to people.
so they said they’ll be in touch on day 35 of my cycle to see if my period has arrived or if I’ve had a positive test. if I have either then they’ll induce a bleed and up the meds

@HavingHope24 ahh hope you’re okay it’s the worst feeling in the world , unfortunately I have no idea what else you could do I’m all new to this been trying for over 2 years , praying you get some better news love 🤞🏼 it’s hard when your try talk to people you know as they just say it will happen , stay strong

@Ncl31 ahh I think it’s shocking , how are they meant to know if you have ovulated or if you have PCOS gained a cyst as I’ve heard it can be dangerous which is worrying me more . It’s all about money these days they don’t want to give them as they say it costs money but let’s not get into that 🤣praying for you.

@Brooklyn2000 thank you for your kind words I feel somewhat inadequate that it seems an impossible task but I’m trying to be hopeful at the same time. Thank you I hope we all get some good news soon

I am so sorry you are experiencing this @Brooklyn2000 . I had a similar experience on my first cycle and I even thought about going in to see the reception myself. I was lucky that in my hospital they have a research coordinator for the trial and I am now dealing with her and she makes sure that everything is done in time (although sometimes you do have to chase for results etc).

I am really hoping that things work out for you and that there is a nurse at your local hospital that is responsible for the trial that can help you!