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 🤞

[Journeytobabyj]

Hi,
I have just started it. I'm only a couple of days into the medication but excited to see what cycle 1 brings! x

[BeaKind]

@Journeytobabyj aw that’s exciting! How are you feeling? I’m hoping if all is ok today it won’t be too long before I can get started 🤞

[MyPCOSandme]

I have been polycystic since I was 18 and would only get my periods twice a year. However, 2022 I have been getting my periods every two months. I finally spoke to my GP getting help. So I was asked to join the LOCI trial.

Its coming up to 3 months since I started taking my treatment. I had a total of three scan and there was no dominant follicle. But I was told I would be bleeding soon but it wont be an ovulation. The lining of the womb had gotten thick so it needed to shed as I did not get pregnant.

I was then told that a nurse would call me to discuss increasing my dose. I was a bit discouraged but still had hope, so I waited patiently.

A week ago the doctor called to check how I was doing and I explained. They asked if I had a period and I said I had so they booked in for a forth ultrasound on 24th Jan (day 10 of my period). I was very nervous during the scan with my legs shaking a little. The nurse then told me that I had two follicles growing. One on the left and one on the right but the one the right was much bigger than the one on the left. They have booked me in for another scan on Friday 27th. God willing, I will hear some more good news.

Hopefully you will also get the news you want. But if not, then do not lose hope, continue taking the medication and be patient. It takes time but wishing you all the best in your journey.

Whether good or bad I will keep the forum updated after my next scan if God wills.

[Tryingforbabyb]

Hi, @MyPCOSandme i hope you received some good news on 27th.

I have just started the trial day 9 and had my first scan. Unfortunately the lining isn’t thick enough and no large follicles. It’s extremely disheartening knowing it’s me that’s stopping us to have the best chance of conceiving.

@BeaKind @Journeytobabyj how are you both getting on with the tablets?

[BeaKind]

@Tryingforbabyb please try not to feel too disheartened. Hopefully in another cycle you will have some better news. There’s lots of treatments out there so I’m sure it will happen for you.

As fate would have it I actually fell pregnant naturally the cycle before I was due to start the tablets. I’m only 8 weeks, so early days.

[MyPCOSandme]

@Tryingforbabyb I definitely agree with @BeaKind. Do not be disheartened. I was once told that I my lining was not think enough but they also told me they could give me medication to thicken it. So you could ask for this option.

By Allah's will, the LOCI trial worked for me on the second cycle. So during my scan on 27th I found out that I had follicles growing. I was then told to keep using the ovulation kits. We baby danced when the LH surged and am now 12wks and 2days pregnant.

I still have a long way to go as anything can happen because of my PCOS. But I am keeping my faith in Allah.

@Tryingforbabyb how is the treatment going so far. I pray all is going well for you.

[Tryingforbabyb]

Congratulations @BeaKind and @MyPCOSandme I'm so happy for you both and hope your keep well!

My mindset is definitely switching and I just need to trust the process. The Metformin/placebo has definitely been a struggle, the nurses think I'm on Metformin due to the mix side effects I'm receiving but I'm praying it's all worth it. Unfortunately, I'm 5weeks since my last period so it looks like I'll need to take provera next week to bring on a period before we can try again. Fingers crossed my body is adjusting to the medication and we see changes when the next scan comes around! X

[Journeytobabyj]

Loci trial worked for me first time. Even after bad news. They told me at all of follicle growth scans that nothing was maturing. They eventually said that I had not responded to the medication and to contact them again when I get my period. It never came and I'm now 11 weeks pregnant. Keep going! Sending lots of luck!

[PCOSlife]

Hi all,

I’ve been following this post since I was offered the trial, and it’s been wonderful to read some joyous news. Congratulations for all who have been blessed 💗

I’m starting my first round of medication on the loci trial today!
I am newly diagnosed with PCOS,
I was diagnosed and offered the Loci trial on the same day, and have been waiting for my period to start to begin.

I am nervous.

A little background on me:
I am 33, my periods were horrendous as soon as they started, I was missing school so at 15 I was put onto depo provera, a contraception which is injected monthly. Depo provera allowed me to live my life pain free, and without any periods - so I continued having the injections, until I was 30 years old. Coming off the injection was awful, and after 6 months with the withdrawal unrelenting I cracked and had another shot.
I came off for good just shy of 31, and deep down I’ve always known the injections were obviously masking some condition - so here I am today, stepping into the unknown, having faith and hoping my story will bring comfort to someone one day, as your stories did to me so many times at 3am, not alone in my grief 💗

I’ll keep updating as I go on this journey, wishing luck to all.

[Tryingforbabyb]

Good luck at @PCOSlife

I'm 6 weeks since my last period so I had to take provera again to bring on a period. It's early days and I've only had 1 month of tablets.

My mindset can switch day to day, asking myself why is my body not working the way it should then the next trust the process I will get there. Us women have it tough but we are strong!

[PCOSlife]

Thank you and luck to you too 🍀

Just TTC and infertility in general has been a real struggle, and it’s not talked about.
I pray this works, but I also completely get how you describe one day being positive the next feeling desolate. Even on the sunnier days there’s still a cloud on the horizon that never disappears.

The tablets are HUGE, I’ve just taken them half hour ago.

[Rljnz]

Hi all,
Hope you don't mind me joining in.
I have polycystic appearance (too many follicles) so my follicles aren't maturing or being released.
I am to have one more follicle tracking scan, then I am to start the LOCI trial.

It has made my heart swell with excitement seeing the positive news. It's been such a long hard road with waiting and getting heart broken every month.

How is everyone getting on with the trial? I know it's been a few weeks since the last comment.

Xxx

[PCOSlife]

Welcome fellow Loci sister 💗

Well I am on day 16 of my cycle now, I’ve had two follicle tracking scans so far one on day 7 and one on day 15.
I have to have another scan on day 21, as unfortunately my largest follicle is only at 10mm and womb lining is only at 3mm - likely they’ll up my dose to two of the letrozole/clomifene.

I was told they need to be reaching 18mm minimum and lining needs to grow to 8mm.
The nurse was lovely and told me not to be disheartened, though obviously I was!

I often re-read this thread to try and get back in the positive headspace, so I’ll be here in the same boat if you need me 😊
🙏 praying one day we’ll be someone else’s story of hope x

[MyPCOSandme]

@PCOSlife This is what went through when I first started the treatment. So they increased my does an by Allah's grace it worked so inshallah this will work for you too.

And yes it is hard not to be disheartened. The nurses were always so nice and encouraging and would tell me not to lose hope. But Inshallah I pray that you get good news on day 21.

Also don't forget to use the ovulation kits alongside your hospital scans.

Sending hugs and love your way.

@Rljnz Welcome to the LOCI sisterhood.😀Waiting to hear a positive results from you too.

[PCOSlife]

@MyPCOSandme thank you for your prayers, and for continuing to update on your journey 💗 it brings me great comfort .

[Tryingforbabyb]

What a journey we are all on!

Unfortunately my period didn't come on its own so I had to take provera again. With 9 weeks between my 2 periods, I really started to wonder is this worth it, why is my body not working etc. but again this tread helps and shows we are all in this crazy fertility journey together.

Currently on my period taking 2 of the clomid/letrozole a day. I have definitely noticed a difference taking 2 a day, my periods are a lot heavier but side effects are minimal.

I have my a scan booked for Monday day10 so I hope there is some improvement from the first round.

[Rljnz]

Oh gosh! It's so hard isn't it. I wish you all the luck in the world!
I can really empathise with the sadness and the heart break that this puts you through. I have definitely been so pissed off with my body and why it being so awful to me xxx

[PCOSlife]

@Tryingforbabyb
Wishing you luck for the day 10 scan 🙏✨✨✨

I find is so comforting having this little space, it’s so hard when the most natural thing in the world isn’t happening for you.
Hopefully one day we will all have Loci babies 🤞🏼

Did anyone have the Hycosy procedure before beginning? I have one in August, little nervous. I hope I don’t need it of course, but I’ve heard it can be painful 🫣

[Tryingforbabyb]

Fingers crossed @PCOSlife

I do feel this is a very good space for us to share our feelings and know we are all going through a same journey! It's difficult explaining it to my husband or best friend.

Ive not had the hycosy but it was mentioned for a possibility to check later.

[Rljnz]

I have had it, it only lasts a couple of mins. By the time it gets really uncomfortable it's finished xx

[PCOSlife]

Bad news sisters.

So day 21 scan and my largest follicle is at 14mm however my womb lining has actually decreased to an inhospitable 2mm! I have also had breakthrough bleeding yesterday and today 😔

As luck would have it the consultant in charge of the trial was in, so the nurse scanning me went to discuss with him.
They’d like me to try again on a double dose but if that doesn’t work and my lining is still showing the same next month then they’ll remove me from the trial 😩

They feel it’s not in my best interest to continue if my lining is too thin.
I will keep you updated, sad times.

Hoping you all have brighter news with your next scans 🤞🏼

[Tryingforbabyb]

@PCOSlife I'm so sorry :( how many cycles have you had on the trial?

Try not to be too disheartened, this is a lot of trial and error for us all. When I went for my first month scan on day 9 and 14 where the lining or follicle wasn't matured enough I asked if I would get another scan. Thinking I might ovulate later in my cycle but they said no, keep trying but my next scan won't be until my next cycle. I know all hospitals have different ways but I felt very deflated too.

I have just finished my second period taking 2 tablets a day. fingers crossed I can share some good news on Monday after my scan and hope for you that 2 tablets can help! X

[Journeytobabyj]

Keep trying! The month I got pregnant was the month that everything looked wrong on the scan! X

[MyPCOSandme]

@PCOSlife I am sorry to hear that. Do not lose hope. Hopefully the 2 tablets will give us good results.

I am praying for you sister.❤️❤️❤️

[Rljnz]

So sorry to hear that, will have everything crossed for you! Xxx