Need advice and other peoples stories!
Posted , 3 users are following.
Ok I'm writing my own as the posts I've found that relate to me are many years ago so want people up to date.
I came off the pill December 2013, had a couple of normal periods but each one was getting further and further apart and then I didn't have one for about 3 months.
I was diagnosed on July 1st this year with pcos and it was shortly after on the 11th I started bleeding, it's now 12 1/2 weeks later and I'm still bleeding/spotting, it varies in colour and heaviness which is why I've put bleeding/spotting, now and then I get a fews days off, I feel lucky when I get 1 day off. I've had 23 days off and 65 days on in the last 12 1/2 weeks. I've actually just had 3 days off and it started again this morning.
My doctor is sending me for another scan before he puts me on anything. So with the stress of all this and I'm worried about the results of another scan in case there's something else, me and my partner of 5 years are also trying to concieve but not getting many opportunities with the bleeding situation.
Anyway what I want to know is people with pcos and getting prolonged bleeding, because it's not a commonly known symptom, everyone thinks you only have irregular or absent periods even my doctor thinks that but I've been reading on the internet and there are so many people with only pcos that are having to much bleeding rather then none at all. It's ridiculous how little doctors actually know about this condition.
My sister also has pcos she said years ago she went 2 years without a period, but she now has periods week on week off, she also has a almost 3 year old son.
I've had a lot of symptoms, from not bleeding, prolonged bleeding, hair, weight (I was 8st8 and size 8 at the beginning of June I'm now 9st 5! Size 10/small 12, Only 4 months later) I always feel down, I need some good news! and help, if your going through what I am and how to get the weight off its pretty much just gong to my belly 
0 likes, 32 replies
Catherine2405 r15
Posted
I am really glad i came across your post. I can identify with your concern around prolonged bleeding, as it seems a much rarer PCOS symptom. I frequently have 10 day bleeds with spotting in between. I tend to have a 2-3 day mini period at the beginning of the month and then the rest of the month is a random mix of blood on wiping, or differing degrees of watery discharge and those sigh of relief "no show" days throughout the rest of the month until the 10 day period comes back round. Sorry about the Too Much Information (TMI).
I also get paranoid about what's going on, as I suffer from IBS and I am always convincing myself that it isnt IBS and is something worse. I am actually quite a rational person in all other ways but when it comes to medical stuff I can over think it all.
I got my facial hair under control using one of those home lazer things, a bit pricey but was the best thing i did, wish i had bought it years earlier as would have saved those embarassing times at work, when you realise that you are in need of a bit of a tidy up.
For the diet side of things, have you tried going diary free? This seems to help the weight loss, worked for me for a while but then I fell back into old habits and the weight is going back on.
Going to a specialist gynae GP on Monday, to get myself checked out again. I am hoping she can put my overactive imagination to rest, carry out some tests and prove to me again that it is just PCOS and maybe offer some more practical advice.
I hope you are feeling better!!
r15 Catherine2405
Posted
How do you cope? I take each day as it comes as everyday seems different, some days are really hard and I don't cope, I'm often moody because I'm worried and don't like to talk about it.
Yeah I know what you mean, when I stopped for a few days I was so relieved but one morning when I woke up and went to the toilet and it was back I just felt like crying. For the last week mines been unusually light but I feel on edge like it's going to come back drastically when I don't expect it.
Don't worry about to much information! Enough information gives a better understanding. We're all females going through the same stuff. My doctor thought I had IBS ages ago, the tablets he put me on didn't help so I don't really know what's going on in that area whether I have or haven't got something but if I experience anything in that area or any area I just deal with it, I tend to suffer in silence with everything anyway!
Home laser? Like the home IPL machines? I've been looking into them for months mainly the Philips ones but don't know if they'll actually work, but I really want one! If it makes my life easier I don't care about the price. What one have you got? what colour skin and hair have you got? I've got olive skin and dark hair so a bit skeptical, when I read reviews no one put what skin and hair they have.
I'm going to try something soon, most probably dairy free as I'm quite fussy so couldn't give up to much or I'll starve, and I can't stick to liquid diets as I like to dig in
I'll get there soon.
My next scan is with a Gyno apparently, I keep chasing them up and they said I should have a date by the 3rd Nov. So I'm going to write down any questions I have and try to get some answers and find out what's actually going on with my body! I think having an overactive imagination is mostly due to being unaware, and not knowing because we haven't got sufficient help & support so we're going to constantly think of the worst and such scenarios until we have our answers. I'm still worried I have something more serious, I need to see someone. Did your doctor refer you to a gyno or is it private? I can't see one unless I'm referred.
Thanks for commenting! means a lot. It's nice to hear from someone in the same boat. Keep me posted, let me know what happens at your appointment, I will too. Fingers crossed we get some good news. Take care speak soon and hope things get better!! 😃
Catherine2405 r15
Posted
No kids, my partner and I have been navigating that mine field for the last 12 months or so, we are a gay couple so all sorts of moral dilemmas as well as practical ones to consider. Before I can have any sort of fertility treatment I need a BMI of less than 29 – which is about 12 stone. I have friends who have PCOS and conceived through IVF, I am also aware of other PCOS women who have conceived naturally but not always an easy road. My advice would be as soon as you know you want kids and you have a partner who feels the same then start to get things in order. We are likely to adopt but that it is more about my relationship rather than the PCOS. I still grieve over the probability of never experiencing pregnancy but that’s for another story!
Back to the practical stuff, I bought the Philips Iumea, I don’t have the patience to use it on other areas of my body, as would take an age to do a leg! but on my face it took about 2-3 months to realise that the hair growth wasn’t reoccurring. The freedom is great. I have dark hair and medium skin, which is perfect for the laser, I would probably see a beauty clinic professional who would be able to assess if your skin tone would work with such a thing. They then can do a package for about £50 a treatment, but you need at least 6 of them so the home device was better value in the end.
Being confident to ask the questions and getting the diagnostics you want is definitely a good idea. I was never that brave in my 20s but wish I had taken control of things much younger. I did some reading around how hormone imbalances can affect bowel function, so I am suspecting its all the same part of PCOS, but would be so nice to have a health professional explain all this stuff.
I contacted my GP over changes in symptoms and they wanted to give me a repeat smear in a weeks’ time, so decided to look at private smear to have it earlier. After talking to someone who provides private GP clinics, she recommended a consultation with one of their GPs with a profession background in women’s health – it is going to cost about £150 for the consultation/smear test but I really just want some support from someone who knows about this stuff. I would pay that on my car if it needed fixing so therefore no reason not to spend it on myself!
Good luck on the 3rd November!
r15 Catherine2405
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That's the thing, having to lose weight first, easier said then done. That's good about your friends. I only know one person with pcos which is one of my sisters and when she fell pregnant it wasn't planned as she was told by her doctor she couldn't have kids. I'm hoping they put me on something to help with my cycles and helps me conceive. I definitely agree with getting things in order if you both know what you want. Me and my boyfriend have been together 5 years and decided to have a baby once I found out I had pcos, we've spoke and if I can't have, we will adopt too or use his sperm with someone else but I really want to carry our baby and a baby that is half mine and his. Having a baby is probably one of my biggest worries and not having one is one of my fears. I think about it probably everyday. I'm glad I came off the pill when did or I still wouldn't be aware that i have pcos and now I can start and prepare for my future early.
Overall I think I'll come to grips with my pcos, it's my relationship also and long term problems and my health I'm doing everything for.
Philips lumea sounds great I think I might get one! I only want it for my face. Thanks, best review yet
Yeah it is hard though because I feel like they don't believe me so I try to keep telling myself I'm doing it for me not them. Oh really I had no idea there was any relation between pcos and ibs. Yeah I wish to have an appointment with someone that really wants to talk to me and wants to know everything and support me. When I was diagnosed I see the scan picture and knew then I had it for sure but the women wouldn't tell me and just turned the screen away, when I went to my doctors after all he said was you have pcos but can still conceive, that was it! Even though I knew I had it it still crushed me and I knew nothing about what was going to happen, what I could do to help this, nothing! I told my boyfriend but it took me nearly 2 months to actually talk about it properly and how we felt about it and I just cried my eyes out, that's when we decided to start a family as soon as we could. Not only is it effecting me physically, emotionally, mentally etc it effects our partners and our relationships too
is your partner really supportive? Mine is, he reassured me that no matter what happens he loves me and will stay with me and get through everything together and not split up over this (my sister and her long term boyfriend split up a while after she was diagnosed, I think stress and strain was a part of it, then a few years after being with someone else she fell pregnant)
I'm lucky if i get an appointment with my gp, it took me 2 months to get the last one, and I'm not comfortable talking to my male doctor about it. I'm apparently to young, you have to be 25 for a smear which is ridiculous but I read on a GUM Clinic card that they do smear tests there so I'm going to look into that. That's such a good way to look at it (what you'd spend on your car) I'd pay that to fix my car too, medical can become a lot of money but all worth it I think! Want to find someone who specialises in women's health I just don't know where to turn or where to start.
Thanks 😃 if they haven't contacted me with a date I will be on to them again.
SteV3 r15
Posted
A few questions are really needed before a more accurate answer can be given.
1. What is your current age?
2. Do you have any children?
3. Have you ever had a miscarriage?
Thank you.
Regards,
Les.
r15 SteV3
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22, no and no.
Catherine2405 r15
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You might find that your gynae does a smear test when you get to that appointment. If not you sould be able to request one is done by your pratice nurse.
r15 Catherine2405
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Yeah I'm going to ask at least.
Let me know what happens tomorrow, good luck! 😊
Catherine2405 r15
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She did suggest metaforim to help my pancreas deal with the sugars in food, which should help with weight loss, I explained how I wasnt sure about met as it is a drug for when you had diabetes and didnt feel right having it before hand which i knew was daft logic, she did call me out on that, as by going on it now could save me ever getting diabetes in the first place but left it with me to ask my GP to prescribe.
She also explained how potatoes, rice, pasta and bread react with PCOS patients and in essence everytime you eat them, rather than the brain going " I will use that for energy" in our case it goes "I best store that" and puts it right on the belly/hips/bum. So to try and reduce portions of those foods to no more than the size of your fist.
So I am not sure that the private doctors do anymore than the NHS ones, other than give you time to air your worries. I might see a nutritionist at some point whilst might also help.
r15 Catherine2405
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I hope who ever I see is as good as that. Food plays quite a big part I think, and I think I could deal with not eating potatoes and bread etc :-)
Sounds like she's probably just as good as a private one.
:D
Catherine2405 r15
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Any news about when you will get your appointment?
r15 Catherine2405
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You've had a good few blood free days
mine has been medium flow for probably the last 3 days and I've got that period feeling,belly ache and lower back aches which I've rarely has since this started.
Ahh right ok, that can only be good :D Is that because of medication your taking? ..did you accept the birth control to regulate things, what one did she give you?
No, I still haven't heard anything! They said there's a 4 week wait so, as I phoned up last week already and this Monday is the 4 week mark, if I haven't heard I'll be ringing Monday! Ridiculous, I've had this pretty full on since July 11th. I'm sure you've probably mentioned it before, how long have you had bleeding for?
Catherine2405 r15
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I came off birth control when i was about 25, as just didnt seem appropriate to be on them given the long term problems who hear about, but if it meant have some more regular blood free days i would be tempted to go back on it....however, i have just seen a different GP at my pratice who had a proper look at my cervix, and took some swabs. She says i have something called Cervical_ectropion?? I have just posted a thread about it to see if anyone esle experiences this.
Basically the cells that should line my cervix have dropped a little and are lining the outside of it. it is these which are bleeding. I need to see a gynaecologist to get them repaired/removed and a few months later my bright red bleeds shoud stop and it will be just back to my horrendous 7-10 day periods.
I am relieved that I am being refered to a gynae, but still a bit scared they will find something else!! GP said it will be my hormones which has caused this and nothing too sinister. As occurs when you get spikes of oestrogen.
r15 Catherine2405
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Yeah I came off because of things you hear about but little did I know I had way more to worry about when I came off. I'm tempted to go back on but we want to concieve.
Yeah I see that post, I thought it was you! But couldn't remember the number you had in your name
oh dear one thing after another, they shouldn't leave people like us this long then maybe other things can be prevented. Does this, what you have affect anything else or can cause anything else?
I'd do anything to go back to having my also 7-10 days periods which were heavy throughout along side really bad belly ache and back ache.
At least you have some sort of an answer, all we can do really is hope for the best and prepare for the worst I guess. The longer I wait the more I'm getting really worried, I'm still really worried I have something more! I think I'm going to call the hospital today, I can't wait they need chasing up.
Might be a bit much but how heavy do you bleed when having this prolonged bleeding?
r15
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I also phoned my other hospital and a local clinic about having a smear and I'm still too young, I'm not waiting 3 more years! I'm going to have to ask my doctor when I see him, but I'd be lucky to get an appointment.
Your appointment you had today, was it a general appointment or was this your smear?
Catherine2405 r15
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Have you got a family planing clinic near you? They should offer smears to young women who are sexually active. The reason that they dont do them as routine as it appears if you are under 25 then you may get abnormal results due to hormones settling down. But you should have one if they are clinically indicated.
It was a routine GP appointment but she carred out a cervical examination and saw this condition.She took some swabs to rule out infection, not 100% that she also took a smear. All GPs seem to have been reassured that previous ones have all been clear, my last one was 18 months ago. But i guess the gyane might do one - bit nervous about that appointment but glad to be looked at.
You asked earlier about my flow, I usually spot/light flow between 1st - 7th month, random DC in between and then heavy period around 19th for 10 days, which is all sorts of heavy.
r15 Catherine2405
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Yeah I have but they won't do it. I spoke to my GPs wife Friday and she booked me in on Monday to call him so I can ask my GP to refer me for one.
Your doctor is good, I want a women doctor I think I'd feel more comfortable. That's horrible isn't it feeling nervous, embarressed or worried but yet glad to do it ..The things we have to do!
Looking back mine usually starts light spotting for few days, medium for few days then heavy, a few days spotting then DC and a break. You roughly know how long your spotting and heavinees is going to last, I havent mastered the order mine is yet as it seems to change and breaks have gotten shorter. After my break last month I had 4 days spotting, 6 days medium then a 2 day break with slight DC and after that running up to today I was spotting for 7 days and heavy for last 6 days. The last 6 days have felt like my periods I used to get so i'm going to assume this is currently my period.
Catherine2405 r15
Posted
Not too long until your appointment now, I am waiting for my letter to come through to tell me when mine is. Had some fresh bleeds over the 2/3/4 but seem to be clear at the moment.
Have sorted out drinking 4-6 pints of water a day, going the loo almost constantly!! but does seem to be easing the IBS side of things. Also started eating less processed foods. I read up about the GI diet which explained things around the body going "this is a natural food, i know what to do with this" or it goes "this is all full of stuff i dont need/recognise" so it stores it whislt it works out what to do with it. I liked that analogy! Have lost a bit of wieght but of course i am resisting losin too much, as i will take it as a negative sign until I get the all clear.
r15 Catherine2405
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I didn't get to talk to him I completely forgot to call.
Yeah I need this scan and something needs to be done! I can't let my doctor keep leaving me this long or telling me to wait as it'll stop in a few weeks. It's not stopping and he's not going through it!
Ahh good, they sending you for a scan or to have those things remove which are causing the bleeding?
That's good, yeah I read up about that aswell, doesn't seem too difficult. There's also vitamins that can help your hormones and your body and cycle get back to normal, I'm not sure how well these actually work. Read this women's story, it might now work for everyone but worth a read
http://www.dailymail.co.uk/health/article-4241/Colettes-story-gives-hope-fellow-sufferers.html ;
Catherine2405 r15
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In terms of the article, your health will always be better the more naturally we eat and use essential oils ect. What fascinates me is why we all find it so difficult to follow a diet/lifesyle which is clearly good for us?
r15 Catherine2405
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That's mad ain't it. I know a big part of my problem is that I'm living with my partners parents at the moment and they tend to cook for us, I do eat with them but I try to only eat a little or don't have dinner unless I get some shopping in as most of the time they do a lot of carbs and I'm not going to get into why i can't eat it because I've only told my parents, sisters, and my boyfriend I have pcos, I don't feel anyone else needs to know. We're looking after a friend's place for 3 months as of next month so I'm hoping that's my opportunity to do something about my eating with no one in the way.
We will get there ! hopefully.
How you doing ? You know anymore about sorting yours out ?
Catherine2405 r15
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Am still waiting for my appointment with the gynae consulant, could be anytime from next week to the middle of December.
r15 Catherine2405
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I had my scan yesterday, the woman was very nice and most helpful out of everyone. I had a transvaginal again and transabdominal ultrasound. She said the doctors aren't meant to tell you you have pcos until they're certain, it's meant to be 2 out of 3 tests and I only had one and he said I had it. She showed me on the screen and spoke about it, the one I had before wouldn't let me even look. She said as I have the symptoms I most likely will get the syndrome, I'm sure I understood from this that I've basically sort of got the running up to it. on the scan it's showed follicles, they're not the size of cysts as cysts have to be over 1cm. She asked if they've sent me for blood tests and had my hormones checked ..nope no one's mentioned it! She said make an appointment with my doctor and see what he can do for me, I said, for in about a weeks time? She was like no asap I'll send it over in 5 minutes and he can see it straight away! Everyone has always said to me 7 days before they get the results. So I feel a bit more at ease after that as she never mentioned anything else was wrong. (fingers crossed)
Also my serious bleeding went from the last day of being so severe on Monday, medium on Tuesday to a bit of DC yesterday to my first day in ages of nothing so far today. I'm hoping that is it for a while or I'm getting back on track or at least enough time to give me a break and recover.
I'm going to phone my doctors today for an appointment and hopefully find out what he can do for me.
How you feeling ? You heard anything yet ?
Catherine2405 r15
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I am waiting for my appointment, I thought i was going for colposcopy to confirm the ectropy however I called the hospital to check if they had my referral and they said it was just for an outpatient appointment and i will get a letter in a few weeks - which was a bit disappointing as I am wanting an examination as I am concerned that my smears may have missed abnormal cells higher up - just another worry to thank google for!!. I am considering a private rapid access clinic which will do everything needed in a one stop clinic by a gynae specialst. It is a bit pricy though, especially is nothing is actually wrong.
Am feeling ok, if i take my spotting days out of the equation i think i can see a pattern to my periods, which might help me plan my life a little easier - however my good intention with the eating have all gone haywire. 5lb on in a week just through introducing real milk, potatoes and cheese back into my life and not even in great quantities.
r15 Catherine2405
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Ohh no, just can't catch a break. keep chasing them up like ring every week or something. I really want a smear, I certainly don't think I'm too young! Google is the worst isn't it? I'm trying not to look things up on there, it just freaks me out and then I think I have something and could get something else etc.. Yeah but once it's sorted and you know what's happening it's not going to be a waste of time or money, it's your health, nothings more important, if you do do that still keep your appointments from your doctors and see what they all say and do. How much is it and what will they do?
Well the pattern I guess is a good this. I'm hoping to understand mine however at the minute I'm not bleeding or spotting and quite happy with that hoping it lasts! Oh dear, that happened to me in June, really not good. There are vitamins that help your body digest and store things properly etc I looked up online before about vitamins to help with pcos and I bought some
r15
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...I bought some before, quite a few, the dearest was coenzyme q10 which was £15 but at the minute I'm just taking one of those everyday and we'll woman vitamin. I've managed to not gain any more wait but I've not lost it, it's just maintained. It's not great but I'd rather maintain then gain it!
I even tried that garcinia cambogia which was really expensive and it didn't even work, the only thing it done was not make me feel bloated after eating.
Catherine2405 r15
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I have my appointment for gynae outpatient in the 2nd Dec. did also go ahead and book private but that's not until the 4th. They could have done sooner but startedy period and now going away for a couple of days.
Have started to use geranium oil in a burner when I have a bath, not noted any differences but don't really know what I am expecting
r15 Catherine2405
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That's good, they took their time didnt they. Good luck, let me know what happens. Typical, having your period when you're going away :l lol. Is it still bad like before or do you feel like it's getting better 😕 You've had quite a break as your period has only just came back?
Lol. I just had a brief read on the internet to see what that was, it sounds quite good, you inhale it and it gets in your blood stream and is meant to help your hormones and stuff! How did you come across that? I might get some
I'm willing to try anything, like most of us.
I started taking well woman tablets about 2 weeks before my bleeding stopped and I do feel better in myself since I've been taking them. maybe I'm lacking some sort of vitamins aswell I just don't know exactly which ones.
I still haven't managed to get an appointment with my gp for my follow up from my scans but overall I'm quite well at the minute thanks, the last time I bled was the 12th!
I have had some sort of symptoms but not the usual, and not the norm for when I'm not bleeding, like - that period belly feeling when your on or going to come on and my nipples are so tender to touch. I'm not assuming I'm pregnant even though the bleeding hasn't come back yet because my body has been through so much, and I'm always learning about new feelings I get that are nothing or are just to do with hormones or are pco related, and I don't want to be wishful thinking so only time will tell.
I'm just enjoying being almost myself again!
Have a good few days away 😃😃 & hope your well.
Catherine2405 r15
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Just got back from NHS gynae outpatient appointment. They did a cervical exam and took smear, womb exam and tummy exam. She cant find anything wrong, my cervix looks healthly (am sure we are all pleased about that!?) but she wants an ultrasound of my entrometrium to see if my breakbreak bleeds are relating to the lining not shedding properly, and if thats clear they may proceed to colposcopy but she thinks most likely hormones. Whats frustrating is she couldnt see any erosion at all, so not sure why my GP said it was that. However i am on one of those days whereby i have a clear watery discharge so at least she saw that (what a job for them eh!!?)
Am managing to track my real periods which seem to have steadied at 30 day cycles with a 7 day being on period in these last 3 months, which isnt bad. These other bleeds seem to always come at the beginning of the month.
I read about the oil in that article you posted, so thought I would give it a go!
Catherine2405
Posted
Hope you had a good christmas/new year.
r15 Catherine2405
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It's weird they can't find anything wrong on you :l that's good she see that cos usually by the time you get seen all symptoms are gone ay and good that about you being able to track them.
What's this scan for? how's everything now, things got any better?
Yeah my Xmas and new year has been good thanks and yours?
I'm 7 weeks and 4 days pregnant
I had a private scan on Saturday for confirmation as my nhs scan isn't til next month and I feel pregnant it just seemed to good to be true. By the size they think I am 9 weeks tomorrow but I know that's not right as 9 weeks ago I was still heavily bleeding 
my bleeding didn't finish til 12th Nov and I got pregnant on 14th or 15th so I was right when I said them 2 weeks was my period. I do wonder though if I didn't get pregnant, if I'd have a normal period and then another or if it'd still be messed up 😕
Catherine2405 r15
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What a saga.