PCOS Chat & Support Thread

Seren_

Quite a few threads have been started here re: PCOS in the last while, so I thought it might be a good idea for us to have a specific thread to discuss how we deal with it and how if effects us in our everyday lives. According to the bastion of knowledge that is Wikipedia (I feel bad for citing it haha, still in college essay mode ) 5-10% of women have PCOS. That is a lot.

So a little bit about me - I'm 22, was diagnosed with PCOS when I was 19 although I had suspected it for a few years before that (I literally had about 2 periods between ages 13 and 19). Lots of the other lovely symptoms were present too >.< Currently on metformin, but I'm very bad at remembering to take it. I really need to lose weight as I know that will help so much with reducing symptoms. However, various mental health problems as well as general laziness hasn't helped with that over the past while.

Hopefully this thread will turn into something useful for other women with PCOS - it's always nice to have people to talk to who understand what you're going through.

Also remember, medical advice is not allowed on boards - this thread is purely for support purposes.

angeleyes

Hi Seren

another person here with PCOS. However, I am in my 40's now. I was only diagnosed at the tender age of 32 when my DH and I were trying to get pregnant. I can go as far as to say that PCOS was the main cause of my infertility. But I don't want to give a negative spin here.

My main symptoms were amenorrhoea (absent periods) and weight gain across the middle. I always knew somehow that I would have difficulty conceiving.

I tried different diets, supplements such as Chromium which I found very effective. I also was on Glucophage or Metaformin as it is also known and I have to admit I found Chromium and Metaformin very good.

But my story has a happy result in that after a few courses of IVF I did become pregnant and have a gorgeous little girl who is now six. There was a PCOS website in Ireland some years ago but not sure if it is there now. PCOS affects many women in Ireland, and at this stage I can nearly tell if a woman has PCOS. It is such a varied and misunderstood condition.

Seren_

Aw that's lovely angeleyes, so happy that you were successful with IVF and had your little girl I know infertility can be one of the biggest problems for women with PCOS, it's scary when you think about it.

How did you find the Chromium helped you? I picked up a few supplements before (brewers yeast and agna castus) but I never took them for long enough to notice a difference. Might have to start again.

Efa87

Hi all,
I went to my Dr to be tested for PCOS, have the irregular cycle, facial hair, acne find it very hard to loose weight despite really trying, really trying!!!!! Had bloods done, they appeared fine, had an ultrasound( horrible experience) and that also came back a-ok so the dr said I fobt have the condition. all my sisters and mam all have PCOS, I'm not trying to be part of the gang or feel like I should have it but does anyone know what else it might be?
Would really like some feedback

sam34

Efa, we can't speculate on potential diagnoses here. go back to your doctor and discuss what to do next.

SarahC91

I was diagnosed with this last year! Was in hospital twice for internal scans, have been told theres thousands of little cysts but they cause no harm, nothing they can do with them!! Haven't had a period in 7 months, and still haven't been given any treatment as apparently there's nothing they can do!!!!

Esoteric_

I had the opposite experience with periods. :pac:

I was diagnosed with PCOS at 16 (I'm 24 now) if I remember correctly, after scans and bloods done a few times each.

I had acne, struggled with weight loss, even when eating and exercising correctly, my periods were very irregular, lasted 2-3 weeks at a time, but were very frequent (at one point, I had three 2 week long periods in the space of 2 months!), aside from when I was 15 and I didn't get any for about a year. I'd also be in bed for several days at a time, crying in pain, and would need to change my pad every 15-20 minutes. Ponstan didn't even take the edge off of it tbh. Never had any issues with facial or body hair, thankfully, but had the rest of the symptoms.

Eventually, after over a year of going back and forth to an endocrinologist (who kept telling me to lose weight, rather than do bloods or scan me!), scans and bloods were done a few times each, and I indeed had it.

I was put on Glucophage, but it made me quite sick, very nauseous, so I eventually refused to take it because I was vomiting a LOT on it.

Instead, I was given a medical cream and pills for acne, which worked wonders, and was put on Cerazette (this took a 5 year wait because of a history of blood clotting issues in my immediate family, and some wonky blood test results a few times over!) and I couldn't be happier. I don't get periods anymore (this is a common side effect of Cerazette), but when I did still get them for the first few months, they were regular, 5 days long, very little pain aside from a bit of minor cramping, no heavy periods, etc.

I've also managed (through a very, VERY rigid exercise and diet regime) to lose over 11 stone in the past few years, and keep it off, so that has helped improve my symptoms dramatically. My diet and exercise regime is more rigid than most peoples' would be, but I have to be very rigid because of the difficulty in losing weight if you have PCOS.

Thankfully, for me, my PCOS is under control and not bothering me for the past few years.

SarahC91

Esoteric_ wrote: »

I had the opposite experience with periods. :pac:

I was diagnosed with PCOS at 16 (I'm 24 now) if I remember correctly, after scans and bloods done a few times each.

I had acne, struggled with weight loss, even when eating and exercising correctly, my periods were very irregular, lasted 2-3 weeks at a time, but were very frequent (at one point, I had three 2 week long periods in the space of 2 months!), aside from when I was 15 and I didn't get any for about a year. I'd also be in bed for several days at a time, crying in pain, and would need to change my pad every 15-20 minutes. Ponstan didn't even take the edge off of it tbh. Never had any issues with facial or body hair, thankfully, but had the rest of the symptoms.

Eventually, after over a year of going back and forth to an endocrinologist (who kept telling me to lose weight, rather than do bloods or scan me!), scans and bloods were done a few times each, and I indeed had it.

I was put on Glucophage, but it made me quite sick, very nauseous, so I eventually refused to take it because I was vomiting a LOT on it.

Instead, I was given a medical cream and pills for acne, which worked wonders, and was put on Cerazette (this took a 5 year wait because of a history of blood clotting issues in my immediate family, and some wonky blood test results a few times over!) and I couldn't be happier. I don't get periods anymore (this is a common side effect of Cerazette), but when I did still get them for the first few months, they were regular, 5 days long, very little pain aside from a bit of minor cramping, no heavy periods, etc.

I've also managed (through a very, VERY rigid exercise and diet regime) to lose over 11 stone in the past few years, and keep it off, so that has helped improve my symptoms dramatically. My diet and exercise regime is more rigid than most peoples' would be, but I have to be very rigid because of the difficulty in losing weight if you have PCOS.

Thankfully, for me, my PCOS is under control and not bothering me for the past few years.

I was put on cerazette last year, and I had to be taken off it as I started bleeding the day after I was put on it which was in July, and was heavily bleeding until November! I too was kept being told lose weight instead of being scanned! Now I haven't had a period since, and have nothing being done for me at the moment, though I get terrible stomach pains regularly! I dont know what to do anymore, as the only option they gave me (cerazette) didn't work

Esoteric_

SarahC91 wrote: »

I was put on
cerazette last year, and I had to be taken off it as I started bleeding
the day after I was put on it which was in July, and was heavily
bleeding until November! I too was kept being told lose weight instead
of being scanned! Now I haven't had a period since, and have nothing
being done for me at the moment, though I get terrible stomach pains
regularly! I dont know what to do anymore, as the only option they gave
me (cerazette) didn't work

I was on cerazette twice, and the first time, I was taken off of it because I bled for 91 days. Not very heavy, bt heavy enough that I needed pads. I waited about 6 months before requesting that I try it again and honestly I've found it fantastic this time around. Have you spoken to your specialist about other treatment options? Glucophage is meant to be great, just didn't like my body. :pac:

SarahC91

Esoteric_ wrote: »

I was on cerazette twice, and the first time, I was taken off of it because I bled for 91 days. Not very heavy, bt heavy enough that I needed pads. I waited about 6 months before requesting that I try it again and honestly I've found it fantastic this time around. Have you spoken to your specialist about other treatment options? Glucophage is meant to be great, just didn't like my body. :pac:

I have spoke to them and their only other suggestion was the mirena coil! Personally I do not like the idea of this and do not want to get it at all! I have never been told about glucophage and generally get rushed out of the room these days! Maybe I should go consult another doctor because there must be something that can be done!

Esoteric_

SarahC91 wrote: »

I have spoke to them and their only other suggestion was the mirena coil! Personally I do not like the idea of this and do not want to get it at all! I have never been told about glucophage and generally get rushed out of the room these days! Maybe I should go consult another doctor because there must be something that can be done!

Have you been speaking to a GP about this, or have you been seeing an endocrinologist? If your doctor is providing no help (which it sounds as though that's what's happening since you're not on Cerazette anymore), i'd urge you to seek a second opinion. PCOS IS manageable with the right treatment, but in my case, I had to fight to get that treatment, so I'd advise you do the same.

central

Hi there,

I too am a PCOS sufferer. I was diagnosed aged 18 and I am 32 now. I had no real issues for about 10 years and then it all went pair shaped.

To cut to the chase, I was put on Noriday about 18 months ago, this worked, most of the time. It is a pill that stops your periods altogether, therefore stopping the hormones soaring. Maybe you could try that SarahC91? Ask your doctor, a new doctor, if this is an option for you.

I too like the rest of you was told to lose weight (and I was not overly big to begin with) and also found it very hard. I am now off the Noriday since March and have had 2 cycles, 30 days apart, so all is looking good, for now. My husband and I are hoping to conceive, and this being the only reason I came off the Noriday.

Best of luck SarahC91 - it is painful, frustrating and stressful but you will find the solution. As I said, I was lucky for 10 years and have had 3 fairly bad years with a couple of A&E visits and some surgery but for now, all is good.

King Krib

This might be a bit off the wall but at this stage we'll try anything.... Have any of you PCOS sufferers tried a fertility bracelet in order to assist in conception.?
As I said at this stage anything is worth a shot.