PCOS Club!

[LadyE]

Soili I am so glad someone wrote about this, I have recently been feeling the same way but I've been so pre-occupied with my af that I forgot. So thank you for starting this convo.

I notice that your location says Portugal? Are you from there or just living there? I ask because Im brazilian and my mother just recently retired and moved back to Brazil. And every time we talk on the phone its "do I have a grand child on the way?, have you lost weight for my grandchild to live in ur belly? have you and hubby decided when to start trying? Im praying for you guys, make sure its a summer baby, I dont want to go there in the winter' etc. This month I took a cd21 blood test and results were low for me to have ovulated, my doc says Im borderline PCOS as I have irregular periods and am overweight. I am now waiting for my af to start taking my first clomid cycle.

anyway, i say all that, to say this...I have debated in telling my mom, as I tell her EVERYTHING. But I have decided not to because... the way I see it, Im already under enough pressure already (self inflicted, obvi) and this is mine and my husbands journey to go through together. Although I know my mom wont say anything to anyone if I did tell her, its the same fear you mentioned, she'll try to console me and make me feel 'better' but I dont feel like I need that, especially since my doctor has been inconclusive about my PCOS, etc. It just best for me to have my mom lighting candles, saying prayers for healthy babies and buying cute little baby things. I know I will get pregnant soon-ish and I want to keep this experience positive for everyone but especially myself so be patient: with yourself, with your mom and with your husband. Mom's are awesome and I miss mine everyday, but I know her part right now is best suited this way and I have realized I am okay with that

Boa sorte!

 

[Clobo]

Hi there Soili

Of course, come join us!!

Well, i personally didnt tell my mum for the first year or so although anyone that knows me knows that I want kids and could probably tell we were trying so she probably knew anyway!! However when in January i was told i would need a laparoscopy i didnt want to go through that without my parents and sister know what was going on so I told them both. I was really glad they knew because then when i had my MC they were there to give me support .... we also gradually let all our friends know too, I was in such a bad place and quite ill for a while i wanted people to know what i was going through. Loads of friends were really sympathetic and understood when i didnt want to go out, wasnt drinking or couldnt face going to another baby shower.

So im all for telling people, but i think you need to tell them all the facts and make it clear that although you are telling them you are trying not to let it take over your lifeblush and so you dont really want to talk about it all the time and that you will tell them if anything major happens. I think thats fair enough!

LadyE, yep the trouble is that the first few weeks after ovulation its the progesterone causing most of our symptoms and we have that whether we are pregnant or not ... its after those two weeks or so that our temps stay up and there is enough HcG to detect and start causing even more symptoms ... of course usually by then we have already tested and know!!!!

Saying that Im having wierd feelings in my uterus and am cream crackered!! Am really hoping these are good signs so im staying positive but reserved about it in case im not lucky this cycle!!

 

[Soili]

LadyE, thank you so much for sharing, hun! Yup, I'm in Portugal, but my family is actually in another country and I only get to see them once every year or two. It does make it worse that I can't just casually mention it over a cup of coffee. Nope, mine would have to be during a scheduled Skype chat

I like your mind set a lot, no need to tell if you're positive you'll get pregnant soon. That's how I felt for a while, but I'm now starting to wonder how long it's really going to be until I get to properly try. Haven't ovulated since November last year and so far nothing I've tried made things better. I'm now starting Metformin and it's basically my last resort before jumping onto Clomid wagon.

I already feel like some incomplete person for having PCOS and when when I think of telling someone about it, I also feel like I'm going to burden them with my issues. Like I'm being selfish for making them worry and expecting support. How messed up is that?

 

[Lemonflower]

Hello!

Please can I join this thread?

Have been officially diagnosed with pcos today.
Came off BCP at the start of the year and have not have an AF since.
Doctor says he's referring me to an Gyn but worrying it's gonna take ages!!!

xxx

 

[LadyE]

To add insult to injury- I just realized I was spotting my first 3 days, so really I should have started counting from July 1 vs June 28, but Im still cd34 days and have no idea if that late or on schedule... and if my symptoms are af or preg ones...

 

[LadyE]

Hello!

Please can I join this thread?

Have been officially diagnosed with pcos today.
Came off BCP at the start of the year and have not have an AF since.
Doctor says he's referring me to an Gyn but worrying it's gonna take ages!!!

xxx

Welcome! Im new too!

Im sorry to hear that. Why do you think it will take a long time? What has your doctor said the next steps were? clomid? provera?

 

[Soili]

Hi Clo!! Hmm, I suppose if I put it that way, that I'm trying not to let it control my life and I'm not exactly up for discussing it everyday, then it might actually work! I'm googling it now, trying to find a text that would describe it the best way, so that I don't actually have to tell all of the details. It's a bit confusing, because I don't actually have any strong appearance symptoms. I'm overweight, but not in my mid section, no acne, no hair excess and all those articles I'm seeing are talking about that mostly. Still haven't made up my mind, but getting there! Thanks so much, girls!!

 

[LadyE]

Soili, we have to stay positive.

I know what you mean about feeling incomplete, all of my friends who are married are either preg or just had a baby- I'm the only one, so I also feel lonely too. And from what I know none of them had a rough time getting a

Which is why I joined this site and already Ive started to feel much better and less alone. I havent and wont share with my friends bc they wont understand and again I dont want to feel pressured and although they will be supportive I feel like it will make me feel worse, like Im the broken one (that's messed right?)

 

[Lemonflower]

Hey guys, I hope you don't mind me joining I have one rather urgent question and I really need opinions. I found out for sure that I had PCOS in March this year, although I suspected it for a few years (but being on the pill, didn't have any confirmation). Anyway, ever since I found out, I've been struggling to decide whether or not to tell my mom about it. She knows we're TTC for a bit over a year and first couple of months she asked me if we had any news. The last time she asked was long time ago and at that time I snapped a tiny bit, basically I sort of jokingly said that there could only be news once a month, but I probably did sound bitter back then already and she never asked since than. She asks me every now and then, if everything's fine with my health and I just keep answering that it's all fine. I might have a good chance to tell her tomorrow, but I really need to decide if I'm doing it or not, because whenever I thought of just bringing it up in the middle of conversation, I'd find it that I'd rather just not. So I'll need to do the whole "There's something I need to tell you" bit, if I'm really going for it.

My main reason for telling is basically just so that she knows. I'm not particularly looking for support or someone to feel sorry for me. It's just so that she knows not to be expecting any news any time soon. I'm getting a bit sick of lying that everything's fine. And knowing that she must be wondering which one of us is "faulty".

My concern is... that she'll try to convince me to do some treatment that I don't want. I've been going to private doctor when I got diagnosed, but chose not to see her anymore, because apparently even diagnosing fertility issues doesn't get covered by insurance (and she wasn't that good either). So as of right now, I'm trying this and that to see if it'll make me ovulate and just started checking what public health system can offer.

I'm finally at the place where I made MY fragile peace with PCOS and I'm afraid telling my mom would take that peace away. I'm also afraid that the general question about my health would be replaced by "Are you ovulating yet?" or "Any luck with weight loss?".

Have you guys told your family? Are you happy you did it or regret it?

Hi Soili!

I didn't want to tell anyone about being diagnosed with pcos as I don't want sympathy or anyone to feel awkward but I did tell my mum and revealed me and OH are infact TTC.
It felt like a big weight off my shoulders and she was really good!

it's up to you but I did help me in my case! Told my best friend too and she was good! It's nice to know that on the days I'm down or depressed they'll understand why now!!

Will Portugal not offer free fertility treatment. I don't really know how the NHS works here in the UK. My doc told me that he is referring me to a specialist but I think it can take months to get an appt! Hoping some ladies can give me some idea what happens with "TTC with pcos" feeling a bit scared it'll never happen for us since I don't even ovulate on my own!

Xxxxx

 

[Lemonflower]

Hi LadyE, thanks!!

I think it will take long as I'm from the UK and we have The NHS which is slow at referring people. I don't know why, maybe due to money and budgets I'm not sure!!! Seen on here that some ladies have had to wait for ages just to see a specialist.
Considering going private and paying for treatment as I really can't wait! I'm quite impatient and am already getting really frustrated! Lol!

At the moment my doctor has told me my OH has to do a SA which we are dropping off tomorrow and now I'm just awaiting my specialist letter now.

When were you dianogsed? Are you starting any treatment soon?

Xx

 

[sunshine1217]

Hi ladies, I just wrote in my own journal to come here and find that you guys all struggle with the same. A couple of things I want to share with you guys:

* The positive things about PCOS: I have gotten clarity to many of the symptoms that were murky to me before---- I have always been thin but the weight has shifted towards my middle and no matter how many crunches I do, it doesn't go away. My irregular periods. I have a couple pimples that appear on my face every month without fail. I use to have a ton of hair but I am able to loop my rubber band an extra time and still have it be loose now because of all my shedding. I pig out once a week or two on ice cream and sweets. I get depressed sometimes without a reason. So with all these "negative symptoms", now I know the cause of them and maybe even a little bit of how I can help treat them. My knowledge of PCOS is still limited right now but a ton more than before I found out about the condition.

* The negative things: The obvious symptoms and difficulty in getting preggers. MY NOT BEING ABLE TO SHARE WITH MY FAMILY AND FRIENDS. My parents live a plane ride away so I don't have to see them to eat with them. It is still difficult because I tell my parents everything and I have to skip over certain details these days. My mom always thought my infertility was due to me being too thin and wants to bake all this stuff to send to me. I need her to know that those are the things that can ruin my health. I want to tell my BFF who is also trying to have a baby. She's been such a great supporter of me for the past 20 years and now I have this big secret. I want to tell all my friends locally who I use to share an occasional night of drinking with. But I don't plan to, not yet at least. I'm not ready and I've decided not to at least for the remainder of this year.

Hope you guys are all staying strong and fighting pcos every step of the way. BTW, can we give it a nickname??? I've been trying to come up with a good one.

 

[TurboTurtle80]

Hey ladies. Its been a while. Just wanted to give a quick update. CD33 here. I got my regular bloodwork back and everything is normal. My thyroid is very happy now. So I have 6 weeks of maintenance before getting clomid/metformin.

On the topic of talking to family - I say its better to just bite the bullet and have the conversation. I regret not telling my family when I was pregnant the first time and miscarried. I could have really used the support. Should you need any procedures for your PCOS, you'll probably want your family to know. It would be hard telling them you have PCOS and are going in for a procedure all at once. It would sound much more serious to them if they don't have the time to do their own research and find their peace with the syndrome as well as its treatments.

 

[LadyE]

Hi LadyE, thanks!!

I think it will take long as I'm from the UK and we have The NHS which is slow at referring people. I don't know why, maybe due to money and budgets I'm not sure!!! Seen on here that some ladies have had to wait for ages just to see a specialist.
Considering going private and paying for treatment as I really can't wait! I'm quite impatient and am already getting really frustrated! Lol!

At the moment my doctor has told me my OH has to do a SA which we are dropping off tomorrow and now I'm just awaiting my specialist letter now.

When were you dianogsed? Are you starting any treatment soon?

Xx

oh wow! Well I def wish you good luck! Maybe private is the best way to go, but I know if we had to it would be hard for us to afford it...

I am still considered borderline PCOS but my doctor said I should give clomid a try just in case (probably bc I keep nagging her and emailing her office on a weekly basis) Now Im all in sorts bc I just realized I needed to count from cd1 of full day bleeding and not from spotting, so Im still waiting for AF or to make my next move. If AF comes that , then its cycle #1 of clomid me for!

 

[msimyak327]

Hi everyone, I am new to this site and just need some support and people to talk to who understand what I am going through. I have been ttc for almost two years now. I was diagnosed with PCOS and put on metformin in May after my first two cycles of clomid did not work. My doctor decided that I should wait three months while taking metformin before trying clomid again. We moved to a new state in those three months so I am now on CD86 and waiting for my doctor appointment on the 8th to hopefully have another cycle induced with prometrium and then start my next round of clomid.

Any advice is always appreicated, but mostly I just want some people to talk to because this is very stressful.

Good luck to everyone!

 

[Soili]

Hey guys, just talked to mom and well, didn't tell her. There's been some sad news in our family this week and it just really seemed unfair to made her more worried, just for the sake of me not keeping a secret anymore. I'm gonna give it another month before I consider telling again, unless it just slips out one day. If I could only start ovulating again, I might not need to tell anything at all, because then things would look so grim anymore. Or at least it'd be much easier to say, mom, I have this condition, but it's not actually that bad.

 

[Clobo]

Hi

Aw chick Im so sorry that you have had sad family news, massive hugs lady. yes tell your mum when it feels right, dont force it or it will only stress you out. So what are you doing at the moment?? Long cycle chick, i know how it feels Have you tried doing a Low GI diet?? Sorry i cant remember what you have and havent tried.

xxxx

 

[Soili]

Thank you, hun!!

I haven't tried Low-GI diet yet, I tried Primal Blueprint for 2 weeks some time ago, it's sort of even more strict Low-GI, basically you eat meat, veggies and fruit only. I couldn't continue on it though, it was too hard. And I didn't see any improvement from it. Eventually it just made me hate all forms of meat Now that I'm on Metformin, I'm basically just starting with limiting my sugar intake and working my way from there to substituting my usual pasta and bread for whole grain versions. I mean, if it does have something to do with insulin, and Metformin will help, I'd like to think I contributed a little too

 

[Clobo]

Hiya

Yep i think any strict diet is just too hard to stick to! I did the Low GI but with a few bits of chiccy thrown in here and there!! Just sticking to the general rules is enough i think so sounds like you are mostly doing that already! Do you drink lots of water and limit caffeine and alcohol??

I just had the lushest tea, low GI too ... marinade chicken peices in soy sauce and honey and then stir fry with cashews .... put some spinach, beansprouts and spring onions in a bowl and serve the now sticky chicken over it!! Yum!!

I have wind now ..... not sure if it the spring onions or a good symptom!!!

xxx

 

[Missus_L]

Hiya all! I may have posted in here a while ago but I'm gunna start again as a newbie if you will have me

We have been TTC since Nov 2008 and diagnosed with PCOS in May 2009(common signs of being overweight, very irregular cycles, low feelings, spots, skin tags). We've had numerous tests: DH has had several SA's, bloods and scans and he is fine. I've had scans that have shown PCOS, bloods which also shown this too. I've had 6 months of clomid ranging from 50mg up with 1 cycle showing OV but no BFP. We were with 1 FS (Warrington) who signed us off saying that there isn't anything they can do for us as they don't have funding for IVF. I was upset and glad about it as they besically said it was a bit of tough luck we were having and they were always awful with us! We are now under another FS (Liverpool Womens) who has prescribed me Metformin (1500mg a day) to hopefully allow OV, regulate my periods and help me get down to a reasonable weight for IVF. I have also been put on Xenical to help with this too. Fingers crossed we get a :BFP: soon.

Enough of me for now and here's a bunch of and a massive sprinkle of for you all xx

 

[yellowyamyam]

Guess what guess what?! I just had my 1st acupuncture session and it was impromptu! I walked into a local traditional chinese medicine shop and the doctor was there. I asked about acupuncture and she said she has many clients with infertility issue. I went back an hour later for my 1st session. Because I am on cycle day 14, she said most likely it is too late for me this month but she poked me anyways to cleanse? my body in preparation for next cycle. She is very familiar with PCOS because majority of her infertility issue women have the same thing. She asked me the regular questions - how regular my period is, do I know if I ovulate, cysts on my ovaries, if my tubes are blocked and suddenly, "have you put on a lot of weight recently?" I was like ... woooowwww... not even the gynae asked me that!

Anyway, I feel normal and slightly relaxed after the needles and mini head massage after. Maybe because I have a cold now so the massage really helped my headache!

I got a letter yesterday to confirm my next FS appointment is on 06 Dec. That is 4 months' away! I was devastated and cried whole night. If only the gynaecologist gave me my well-deserve Clomid last week. She insisted on having a CD3 blood test and take it from there. FOUR MONTHS!!! It doesn't help that DH is away abroad on business trip... Hence the spontaneous acupuncture session.

Another thing I want to share/ask is ... my OPK is about 3/4 as dark as the control line today but my temps have shot up and FF indicated I've ovulated 4 days ago which I can almost guarantee I didn't. I know my temps went up due to the heatwave we got over the last week in London and I've had this cold 4 days ago. So I don't know what to think about this. OPKs have never worked for me nor temp-ing. *sigh*

I know I am not alone when I say this -- the "big guy up there" is really not keen on seeing me pregnant.