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Confused and sad

Yuki33 profile image
40 Replies

Hey everyone,

Needed to reach out to you lovely people as feeling so sad, disappointed and confused. Totally got my hopes up this week as my period is over a week late - managed to convince myself that miracles had happened. But no, took a test this morning and it's a big fat negative.

Wondered if anyone knew what possible causes of late/missed period are. My periods have been quite irregular the past 2 years - before that I was on the pill. At the time I was under extreme stress so I blamed this, and then this stress stopped my periods came back and were somewhat regular. Now this!!

Suspected endometriosis but I read that causes short not delayed periods?

Was told by NHS I have pcos but then private consultant says I don't?

Honestly so down about this whole thing. I feel like my body is trying to torment me as much as possible 😔

Anyone had anything similar? X

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Yuki33 profile image
Yuki33
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Millbanks profile image
Millbanks

Hello lovely,

Ugh I feel you - I had both of my tubes clipped before we started IVF and I STILL have the tiniest bit of hope every time my period is late that it might be a million to one chance that I'm pregnant.... so not silly at all.

I can't really advise about late periods but mine are so messed up after taking so many hormones. I do think stress can affect them too.

Just wanted to send a hug xx

Yuki33 profile image
Yuki33 in reply to Millbanks

Thanks so much for your reply. You totally said it right there - I feel so silly for allowing myself to get my hopes up 😞Take care x

Millbanks profile image
Millbanks in reply to Yuki33

No! Don't feel silly - it's totally normal - and why wouldn't you be? Go easy on yourself.

xx

MiniCeeCee profile image
MiniCeeCee

So sorry to hear, delays to periods are so tough to navigate. I too had yet another negative test this morning, the hope rollercoaster is horrible. I’m in a similar boat in that early on in NHS tests, they told me I had PCO, and then later , after more scans, someone else told me I didn’t. A friend of mine who is a doctor and has been through IVF herself, told me it could be that I have a mild form of PCO. I think diet and acupuncture are meant to help, so I’ve been focusing on those two areas these past few weeks to hopefully be the healthiest I can be. I also have very light periods (only 2 days long) and so I’m hoping the acupuncture might help. Stress will I imagine impact your cycle. I think the main thing to monitor, despite your cycles being different lengths, is whether you are ovulating. I monitor this through measuring basal temp and using the ovulation strips. Really hope it works out for you and than you get some clarity soon x

Yuki33 profile image
Yuki33 in reply to MiniCeeCee

Thanks for thisIm starting acupuncture next month and already pretty strict with diet so will see what happens. I think I'm just so downhearted because my periods seemed to be getting back to some kind of rhythm, now this one is just non-existent!!Just need to have a good cry and pick myself back up again 😔 x

Here4ivfinfo profile image
Here4ivfinfo

Wanted to comment to show support. I don’t really know why your period would be late. Have you any idea if you ovulate? I too have been told different things about having polycystic ovaries. The latest is that my right one is polycystic with “over 20 follicles”. I think my left had 18. I tracked ovulation 8 times and seemed to be ovulating and also have evidence of ovulation on scans. I have been told “you ovulated out of the right ovary” and also been told the same about the left so I am pretty confident I don’t have an issue in that department. I also understand how mentally tiring it is to think you are pregnant when you aren’t. I once randomly spotted on day 25 of my cycle and convinced myself it was implantation bleeding. How long are your cycles running at? Mine are anything from 30-37 days. Sorry to jump about but with PCOS you have to have multiple symptoms so for me I have PCO only because I have no signs of any issues- being over weight, having a hairy face, imbalanced hormones. Also, it seems like some drs have different views on how many follicles you need on each ovary for this to count as polycystic. I even had one dr say “you definitely have adenomyosis” and another from the same place said “we can’t say with certainty but I can see what she means from the scan”. I think it’s frustrating enough without mixed messages. Xxxx

Yuki33 profile image
Yuki33 in reply to Here4ivfinfo

Thanks so much for your reply, interesting to hear you've had conflicting diagnoses too.... I'm the same, no other signs of PCO., just one scan where they apparently saw loads of cysts, and then another where I was told there was absolutely nothing to be concerned about. And yeah, irregular periods at the time but like I say I think that was hugely due to lifestyle and stress and since sorting that my periods came back and since about August last year were very regular. They were sitting at 28/29 days every month since then. Before that it would be anything from 25 to 35 days, with some months skipped. I had a miscarriage two years ago and it was like my body went totally haywire after that.As for ovulation, while my periods were all over the place, my progesterone was low so they didn't think I was ovulating. Since my periods came back it looks like I have been. But I'm gonna buy some ovulation strips to test next month. Have also been on clomid and letrozole before to try to induce ovulation but no success with those either...

Oh this is HARD x

Here4ivfinfo profile image
Here4ivfinfo

Polycystic ovaries don’t actually have cysts on them to my knowledge. It’s when you have lots of follicles and is an indicator of high ovarian reserve. The terminology is misleading. Did they say you had actual cysts? With PCO or PCOS what can happen is that if you have a really high antral follicle count your ovary “gets confused” and instead of releasing an egg no egg gets released. I think tracking to see if you get an lh surge would be helpful. I was also told to go on Inofolic Alpha which apparently can restore ovulation and improve egg quality. I don’t take it at the moment as ovulate without it and my partners sperm wouldn’t impregnate the most fertile of women without ICSI. I took it ahead of egg collection to improve quality. It takes 3 months to work but it might be worth looking into. I think the stats are super high in terms of effectiveness in restoring ovulation in women with PCOS. Whilst I didn’t think I was the issue I thought “I might aswell take it anyway” just to cover that base. Do you have a high AMH level? Apologies if I seem really nosey! Absolutely don’t think I’m a Dr!!!

Yuki33 profile image
Yuki33 in reply to Here4ivfinfo

No, not at all!! This is all so helpful, I honestly find my NHS appointments have been clear as mud.She definitely mentions cysts in relation to the pcos, and also fibroids were mentioned.. But then the private doctor said everything was fine, no cysts, no pcos, no fibroids.

What you said about supplements is so helpful too. All I've been recommended is Impryl for both of us, which we've been taking for over a year, as my husbands results were a bit low too. Ive been told not to mix impryl with loads of other supplements which is why I've been wary of taking some of the other stuff people mention on here.

My AMH is 27, which I believe is slightly on the high side - although my NHS consultant told me that was normal.

It's all soooo confusing. I'm due to start ivf soon but I just wish I was clear what was going on with my body before that....and I suppose still holding out hope that it'll happen naturally! X

Here4ivfinfo profile image
Here4ivfinfo in reply to Yuki33

Impryl is made by the same company as Inofolic alpha. I nearly switched to it when I read about it. I got my partner to take that but he was so annoyingly lax!! I think it's very confusing what to take and do. I'm currently just taking Inessa pregnancy vitamin, mainly because I enjoyed the branding 😂. I can understand wanting to know what's actually going on. I felt a bit relieved to know my partners sperm was really low because then you know what the issue is and can do something about it. My confusion is "Am I also a problem?". If it's unexplained I imagine that is really hard to deal with because we want solutions and if not a solution at least some kind of consistent explanation. Your scans being so different doesn't make a lot of sense unless they were really really far apart. I know cysts can go away on their own but I'm not at all sure about fibroids. I have no idea really whether I have adenomyosis or even if I do whether it's a "problem" because everyone seems to say something else. AMH of 27 is really strong but I don't think it's problematically high. Mine was 46.6 when I was 34 which was deemed high but it could have been more extreme apparently. It was 35 when I last had it tested (aged 36). You might get pregnant naturally still, fingers crossed for you 🤞🤞🤞x

Yuki33 profile image
Yuki33 in reply to Here4ivfinfo

Crossing everything for you too. Honestly, thanks for taking the time to reply, it sometimes just helps to chat through with someone. Take care x

Here4ivfinfo profile image
Here4ivfinfo in reply to Yuki33

No problem at all. I should probably do some work now 😆

MiniCeeCee profile image
MiniCeeCee in reply to Here4ivfinfo

I’m in exactly the same boat as you - partners sperm has low morphology, so we’re being treated for male factor infertility and have had one round of ICSI so far that failed. But as my periods are very light and one scan said I had signs of polycystic ovaries (the second scan said I didn’t), plus my AMH is a tad on the high side (23 - not worryingly high though apparently), I have the same question - i am causing part of our infertility problem too? It’s such a minefield! Do you mind me asking how many ivf rounds you’ve done and if you’ve had any success?

Yuki33 profile image
Yuki33 in reply to MiniCeeCee

Hi! Oh I'm so sorry to year that your first round didn't work, this whole thing is awful.

I haven't actually started ivf yet. I fell pregnant naturally over 2 years ago, pretty much immediately when we started trying, but miscarried early on. Since then I've been having every test under the sun to try to get to the bottom of why we can't fall pregnant again and been on a waiting list for IVF. I think we're going to start sometime between April and June and I'm just desperate to have a few last tries at making it happen naturally x

MiniCeeCee profile image
MiniCeeCee in reply to Yuki33

So sorry to hear about your loss too…. Sending lots of hope that you fall naturally before IVF. And / or have success with ivf too! Xx

MrsOrangejuice profile image
MrsOrangejuice

When I had endometriosis my periods were really long and heavy - lasted 10 days to 2 weeks and had them every 5 or 6 weeks. I was on the pill for about 15 years after that for 3mnths at a time and it took a very long time for my periods to return (6mnths or so) then much longer to get into a sort of pattern. I had a repeat laparoscopy and they found zero endo which was good but even then my periods were anywhere from 28-42 days, and I had spotting and bleeding about 5 days to a week before. I also got told by one doctor I had polycyclic ovaries, which somehow morphed into a diagnosis of PCOS on my GP notes, but when I went to a specialist they said I had loads of follicles but not the syndrome as I had no symptoms and I was getting one dominant follicle a month and ovulating. When I started IVF my AMH was 40+ so they looked at PCOS again and said not. It's massively confusing and I never really got a diagnosis or treatment, but my periods and ovulation just gradually went more regular and normal. And IVF did work after a bit of tweaking and my periods regularised so much they are now like clockwork, despite early losses, and back to back rounds on max meds. So somehow the body can reset.

Yuki33 profile image
Yuki33 in reply to MrsOrangejuice

Thanks for this, really reassuring to hear that your body got into so kind of rhythm over time and that ivf did work for you. It's all so confusing like you say and difficult not to worry when you are told different things by different consultants. X

K_LNB profile image
K_LNB

I’m case it helps… years ago I was diagnosed with what is written on my notes as “post pill polycystic ovaries” as scan showed as much - which makes me think it’s a ‘thing’. As far as I’m aware, I do not have PCO now as it’s never been mentioned throughout my IVF scans etc.

ClaudiaS profile image
ClaudiaS

My personal opinion is tha nhs is worst than nothing. It crushes hope and time with less result than an ivf clinic in africa…. The private clinics in uk are better than nhs but most of them worst than abroad ! After years of negatives I succeeded in greece athens ! I always wish that I started with them and save lot of money and most important mental health! The clinic should have a personal connection with the clients and this is happening only to clinics with real care and not to private equity owned clinics as most of them in uk!

Yuki33 profile image
Yuki33 in reply to ClaudiaS

Hi, I have to agree with some of that, haven't had a great experience with NHS so far. But I can't afford to go private unfortunately 🙁. I have heard of a lot of people who have gone to Athens and say the care they received was far better than UK x

Nakijo profile image
Nakijo in reply to ClaudiaS

Comparing everything worse to Africa is a sign of ignorance and sometimes racism. Africa has its challenges, just like the rest of the world. But it also has great stories and experiences that are comparable to none

IVFnewbie1 profile image
IVFnewbie1

I completely understand why you are upset and confused. I can’t explain why yours are this way but want you to know you are not alone and if you need to chat I’m happy too.

I have had something similar with my periods. I have PCOS. Years ago cysts were found but my latest scan there were none. I do however, have a lot of the symptoms which come with it. I once went 60 days between periods and took so many pregnancy tests which were all negative. No one could explain why it was like that. I then had periods which would range from 28-35 days.

A little hope for you though-3 months after that 60 day one I did get a positive. I took a test as was off for fertility treatment and found out.

Now a few years down the line I am usually 26 days between. Although I had one which was 17 days which was the total opposite from before as so short. I’m now thinking I’m in perimenopause-very early for my age.

Yuki33 profile image
Yuki33 in reply to IVFnewbie1

Hey, thanks for this. As much as I'm sad other people are going through/have been through this, it helps to hear I'm not alone. So, so hard to keep hoping every month isn't it? I honestly wake up every morning with this feeling of dread & it's hard to function 😞 x

IVFnewbie1 profile image
IVFnewbie1 in reply to Yuki33

Sometimes you just need to know you’re not alone. Completely understand and really hope you get your positive soon xxxx

Kate-92 profile image
Kate-92

Just wanted to send a message as I have been in that situation so many times ☹️ my periods have always been irregular (especially so post pill) to the point my cycles have varied from 21 to over 100 days !!! when we had our initial fertility testing I discovered I had PCO but not the syndrome - I didn’t even know that was a thing ! And because of this after further testing we discovered that I wasn’t ovulating every month meaning my AMH is high for my age (I am 38) - I had gone through so many months of delayed periods, praying and hoping it had happened to then get a BFN. We eventually tried Letrozole for 6 months, that didn’t work then we moved onto IVF as the clinic said that was the best option for us. I am currently 15 wks pregnant x

Never give up hope 💞

Yuki33 profile image
Yuki33 in reply to Kate-92

Hi! Thankyou so much for this message, its really hard to keep going with all this but messages like yours give me hope. This is the hardest thing to go through, especially when all your friends are falling pregnant with apparent ease. Absolutely heartbreaking x

Kate-92 profile image
Kate-92 in reply to Yuki33

It’s so hard, and what you feel is something that’s unexplainable. I have friends who have had relatively straight forward fertility treatments, friends that have struggled and are still on their journey & those who apparently got pregnant just by looking at their partner 😂 it’s a really tough thing to navigate & it can be a lonely space being happy for someone else whilst grieving something you haven’t yet had. Have you actually started IVF yet ? X

Yuki33 profile image
Yuki33 in reply to Kate-92

Exactly, and also grieving something I did have right now - this week marks the loss of our first and only pregnancy. I think that's making me feel much worse about the missing period/negative test.So I'm on the NHS waiting list for IVF. They can't seem to tell me when I'll start but I've had my first Co sulation so should be between April and June. I suppose I just thought - well I got pregnant once very quickly after we started trying, why can't it just happen again?! X

Kate-92 profile image
Kate-92 in reply to Yuki33

Oh I’m terribly sorry to hear of your loss ☹️ I had a miscarriage when I was younger & a chemical this august though I hate to call it a chemical as it’s still conception regardless ! The fact that this week is significant will of course stir up so many emotions for you - so be kind to yourself x

We had our initial consultation to move forward with IVF in jan this year & we would have started in august if it wasn’t for our loss, that set us back. From starting in November things moved very quickly & I think they do once you’re in the system . I really hope that you are able to start soon, it does lift a weight off your shoulders knowing that there is that extra help x

Yuki33 profile image
Yuki33 in reply to Kate-92

Sorry to hear about your loss too. You're right, chemical pregnancy is still pregnancy and it's still devastating to lose that. Thankyou for your kind words x

WillowPark profile image
WillowPark

Hi Yuki33, I know the worst thing people can say when TTC is "relax" and there are definitely conflicting opinions on the impact of stress, however I have tracked my periods using BBT for 14 years now and I definitely found a pattern. If I was stressed the week of ovulation = delayed ovulation = delayed period. I could be completely not stressed the rest of the month but if I hit stress at that point it delays my ovulation and delays my period. Might be worth considering your dates and assessing whether that has happened. I was in a similar but different boat last month. Sore boobs, spotting and cramping really early which I convinced myself was implantation and pregnancy. Did a test, negative. Convinced myself it was too early for a BFP and I just needed to wait a few days. Then I had an early period, negative test and no pregnancy. It is a tough old life the hope and disappointment x

Yuki33 profile image
Yuki33

Hey, yeah I do feel stress has an impact, as like I say, when my periods were basically non existent 2 years ago, my stress levels were off the scale. But I can honestly say this month I have been so far from stressed - was on a two week holiday to while ovulating.I was the same, sore boobs, tired beyond belief, cramps coming and going for days. You just convince yourself it's pregnancy symptoms don't you? So then it's hard to see that negative all over again. The disappointment is so hard to take x

Guru1111 profile image
Guru1111

Hi Yuki33,

I had very irregular periods, I have PCOS, mild adenomyosis and a small uterine malformation.

I used a lot of things (inositol, metformin, keto diet) and maybe it helped (maybe I had more periods per year) but they were never regular and ovulation tests never worked because I had a continuous elevated LH. So I needed IVF, and then also developed OHSS because of the PCOS.

So the most probable cause of delayed period is delayed ovulation / ovulation failure / no ovulation.

I hope you can get your desired pregnancy.

Take care 🤞

Hopecontinues profile image
Hopecontinues in reply to Guru1111

Hi,Sorry to jump in, but wanted to say that I had similar to you. PCOS, but never had cysts, just loads of follicles which gave me OHSS 3 x, mild adenomyosis and a subseptate uterus, plus also had hereditary thrombophilia. On my successful round, I cut out all sugar for a month, did a mock cycle, downreg to deal with adenomyosis and blood thinning injections for thrombophilia.

With the PCOS some doctors said I had it, some said I didn't, but I certainly feel like I had insulin resistance and ended up with gestational diabetes, so doing keto or any diet that cuts down carbs and sugar is definitely a good idea.

Good luck.

X

Guru1111 profile image
Guru1111 in reply to Hopecontinues

I also have gestacional diabetes now, so same as you. My malformation is bicornuate uterus.

Best of luck Yuki 33!

Hopecontinues profile image
Hopecontinues in reply to Guru1111

There must be a link for the gestational diabetes. Good luck. I have a 4 month old now.

Guru1111 profile image
Guru1111

I would like to add that in my case it took them a long time to diagnose me because they said that PCOS was not the same as ovaries with polycystic morphology. But after a hormonal and insulin analysis, they were able to make the diagnosis of PCOS. XX🤞🤞🤞🤞

Yuki33 profile image
Yuki33 in reply to Guru1111

Hmm OK, thanks for this. They have never mentioned hormones in relation to PCOS. Maybe this is something I'll ask at my next appointment.

This month I've cut out sugar and limited to non-refines carbs only, thinking that that may help me, so frustrating that my period has been a no show when I feel I'm trying absolutely everything I can to help my body x

Guru1111 profile image
Guru1111 in reply to Yuki33

They have to see if your LH is higher than FSH in the first days of cycle. Honestly, I tried everything for years. Keto diet, metformin, reduce stress, strenght exercise and then also clomid and letrozole... For me IVF was the only way.

Best wishes 🤞🤞🤞

Nakijo profile image
Nakijo

Hi Yuki33, I am so sorry for what you are going through. But keep strong and hopeful.

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