I really need help & advice on my PCOS from other sufferers!

Hey Everyone,

Im only new to the BB site so this is my first time on here.

I am only 20yrs old and was dx with PCOS exactly 2 years ago from today. DH and I have been TTC since we got married in 2008 and have had no luck. I only started getting irregular periods in 2008, before that they were completely normal.

I have attended the Natural Fertility Clinic at the Mater Mothers' Hospital in Brisbane for the past two years and been through a variety of treatments such as metformin(which made me terribly sick with diarrhea and vommiting for 3 months), Clomid(which I only did 2 months of but wasn't too keen after I had heard a few horror stories about it) and progesterone pessaries(which did nothing to help ovulate).

I have lost 18kgs to date and am now a nice size 14 but am aiming to lose another 18kgs. Although I have lost the 18kgs I still haven't had a period in 3 months(I got my period after losing my first 5kgs in 2 weeks). I am just wanting other womens stories and experiences of what worked and what didn't work for you?

Thank you in advance!

Hey...

Ah where to begin.. I myself have PCOS, but went undiagnosed for ages. From the age of 15 I was on the pill, as my periods were irregular, and very painful. When DH and I got married in 08 we decided that I would come off the pill and start trying. I came off the pill had a few normal cycles, and then nothing for 240 days. and I wasnt pregnant. I went and saw my GP, and instead of doing any tests she put my on metformin, and said lose some weight, and come back in 3 months. I lost about 15kgs, took metformin.. NOTHING! I went back and saw her, and she told me give it time you are young... All things Im sure you have heard.. Anyway I ended up getting a referral to my now FS, who rang so many tests to find out what was going.. June last year I was dx with PCOS.

Metformin.. is crap and I dont think that it is even worth it, I havent heard many success stories at all. Also while I was taking metformin I was also having accupuncture done.. which is supposed to help.. but didnt..
ATM I am in my second round of Clomid, and I myself have heard a few horror stories, and was not keen at all to start it... BUT all the things I have heard about usually happen with prolonged use. My first round of Clomid I ovulated on CD16, but we missed the egg.. Not enough DTD. lol. If you are worried about the clomid you should come talk to some of the ladies in the metformin/clomid thread.. you will gain alot of advice from them, and they are very reassuring! There is also success threads that I have read, about Clomid, about IVF so on and so forth..

I hope this helps..

I too have PCOS but am extremely lucky to have two kids. My cycles were all over the shop when TTC #1 and it was by sheer luck that we caught the one and only egg I popped out in over 14 months. After I gave birth to my DD it seemed to "wake" my ovaries up and I was suddenly regular. We used condoms as contraception and it took us 6 months of regular periods to TTC #2. After #2 I I had a mirena put in. Two weeks ago I had that taken out so I'm waiting to see what my cycles are like now.
I was about to be commenced on Clomid when TTC #1 & #2 but found out I was pg the night before I due to start a Clomid cycle.

Sorry not much help but I wish you the best of luck. You weight loss is fabulous. Every gram will help. Keep up the great work.

I have PCOS that was diagnosed after 13 months ttc our first DD. I ended up on clomid. On the second cycle of clomid and we conceived DD. I also hadn't had a period in about 3-4 months when we started using clomid and I didn't ovulate the first cycle I was on it. Good luck hun!

Severe PCOS here, but not exactly a classic presentation.

First of all - I believe metformin is only going to help if you have insulin resistance as part of your PCOS. This is determined through a two hour glucose tolerance test where they also need to check insulin levels as well as glucose. My insulin resistance is severe. I need metformin even while not TTC just to help control the symptoms of insulin rising and falling. And I can assure you that metformin success stories ARE out there. Not me, but a friend of mine. Generally it seems to be of benefit in the cases of milder PCOS. But for me, I will sing the praises of metformin until the end of my days. The thing with PCOS is that it's not just difficulty getting pregnant, it's a difficulty in staying pregnant. Without metformin I miscarry. Metformin does help to reduce the chance of miscarriage in women with PCOS however its use in pregnancy is somewhat controversial. But when I miscarried the day I so much as reduced the dose of metformin, I am thoroughly convinced.

If you really can't tolerate metformin, then there is great benefit in following a low GI diet.

As for clomid... That's the drug that I believe is evil. I had such severe panic attacks on clomid and such a severe break down while using it that my doctors have basically told me to never ever take it again. There are other options out there to help you ovulate that I believe are better than clomid (in the midst of that break down, it didn't even work). There's a drug called letrozole that is used in the same way as clomid and also FSH injections.

With the progesterone pessaries - they are never going to help you ovulate. In the lead up to ovulation, FSH rises, as well as estrogen. After ovulation, progesterone begins to rise, peaking at about one week after ovulation. If you are pregnant, it will stay high, if you are not pregnant, then it will fall and it's the drop in progesterone that triggers a period to start. Progesterone pessaries will help maintain a pregnancy after ovulation if the body doesn't produce enough on its own, but it won't cause you to ovulate.

The nasty thing about PCOS is that what works for one woman with it isn't necessarily going to work for another woman with it. In my immediate circle of friends I can easily count four women apart from myself with PCOS. One needed only metformin. Another needed metformin and clomid. Another needed IVF (successful first time). All three of them conceived their second child with no intervention at all. All three had a surprise second child. Another just took a long time but didn't actually use anything to help. And then there's me who needed IVF and ICSI as well, but took something like 5 transfers and three miscarriages before I had a successful pregnancy. We also have male factor infertility to deal with as well as a few other health issues.

Losing weight is certainly a help in managing PCOS and becoming pregnant. For some it's enough. For others, even with weight loss, more intervention is still needed.

I hope there's something of use in what I've said. PCOS really is a tricky thing to get your head around - for the doctors as well as those who have it.

BW

Hi there and welcome to BB

I have PCOS but conceived DD naturally after one month of trying only! Unfortunately, bub #2 hasnt showed up yet for over a year now.

I had very irregular cycles, 64 days .. 32 days, 125 days. I went to see an FS and was also diagnoised with insulin resistance.

Took two rounds of clomid but with no success. I didnt get any side effects either.

I am yet to take Diabex XR to control my insulin resistance but am trying to exercise and cut down on sugar. Hopefully taht will help.

Congrats on losing the weight btw! and I hope you get a BFP soon!!

All the best!

Hi there i'm another PCOS sufferer. I was diagnosed June 2009 after having the most horrible pains in my stomach and after blood tests and then later on confirmed with an U/S i was told i have PCOS. I found out i also have an insulin resistance which isnt uncommon. I was put onto Metformin and the Yasmin pill. The pill gave me migraines and i was only put on a 3 month trial of metformin. I was told that it is used as a fertility drug as it makes women very fertile and was told to be careful not to fall pregnant but i ignored that advice and in November 2009 i fell pregnant after one accident. I too have a very irregular cycle i can go 3-5 months between periods and i don't ovulate as often as other women so to pin point when i do i was told would make concieving very difficult. I lost all hope in believing id be a mother but the most important thing i have learnt is to be positive.

Well done on losing weight. I lost 9kgs which i believe increased my chances of concieving.

Good luck :)

Thanks Everyone for your info and experiences.

I too tried accupuncture for about one year and foundit did help lower stress levels and regulate things but I still was not ovulating.

I think I will just keep losing the weight and possibly try the shots or maybe Clomid again after I talk to my OB & midwife.

Thanks again everyone, please keep info and experiences coming through if you haven't already put yours up.

Hey PB&J - another person with PCOS (I don't like being a sufferer :))
I knew I had PCOs but as I was on the pill it masked the PCOS symptoms until we decided to TTC. After months of nothing (no periods), I went to a FS who triggered AF and did 4 clomid cycles (I didn't have any reaction to the clomid). After that I had an ovarian cyst so had to have a cycle off before trying IUI, then it was Christmas, so I decided to take myself off to a naturopath to get my body right. Suffice to say with herbs we were pregnant on cycle #1! Went back to her to trigger AF when DS was 13 months old and again - first cycle! Unfortunately that was our angel baby and we're now back trying with her in the first proper cycle post m/c.

I still have long cycles 40+days but a good luteal phase. Working on losing weight and taking some herbs to try to shorten my cycle.

So basically I'm saying it's worth trying naturopathy. There are herbs that help with insulin resistance if you have an issue with that - certainly helped me lose weight! Weight loss is awesome - good on you for doing so much of that already!! My naturopath is also a nurse who used to work in IVF so she's happy to work along side the medical people if you want to do both, I'm sure you can find someone like her.

Good luck! As my FS said to me on the first visit "you will get pregnant, don't worry, it'll happen".

Wow... I never heard any negative stories about Clomid. I didn't have any issues with it - I got pregnant on our 2nd cycle with Clomid. For me, it was a god send!

Just subbing as I'm currently on my phone, but will be back to reply! :)

I haven't read all the other stories..... I'm supposed to be doing an essay lol.

I was diagnosed in 2006. When a cyst burst and I was in crippling pain. I fell pg naturally 2 years after the op.

Since having dd1 I've had a total of 4 periods. None for over a year and then one massive one a month ago.

I'm 56 kgs. Metformin was The first port of call as they consider pcos in an insulin resistant family. It made me fairly sick so I asked for surgery. I didn't want clomid of fear of more cysts.

I also had panic disorder which is why I wanted the surgery. I wanted to see how much hormones played in my anxiety levels.

We wanted to conceive obviously and so I had ovarian drilling 2 weeks ago.

Can't say too much about it's success at the moment as I'm bleeding like a stuck pig..... Which I hope is a good sign!

I will be happy to try clomid in a few months now because I have read it's success after drilling.

Anyway that's my story.

Weight isn't everything. It is a factor but it's worth having an ultrasound or blood tests because weight loss won't lessen your testosterone or LH levels completely.

I'm happy to say I've got my first neg opk in a year!!! Which is a great thing. It means my LH levels have returned to normal.

Not me but a friend of mine has this. She has two gorgeous kiddies, the first took ages, the second born 15 months later, then after another long stint if trying is pregnant again....with twins! Try and stay positive x


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Smudgies_mum- Hi hope your well. Just thought id put my 2 nursing cents in lol.
Weight loss is the only known way to get free testosterone levels down in females. I have also confirmed this info with my endo and he also said weightloss was the only known way to get it down, which sucks for us as i found weight loss very hard until i went on duromine.
18kg down and im interested in to see what my levels are like now :)

gah! i was nearly finished my reply but i accidently pressed back on my browser! :computer:

basically, i had/have symptoms of PCOS which were: VERY heavy and painful periods, VERY irregular cycles (sometimes i went over 3 months without a period! :o ), hair loss, i got dark hairs on my neck and chin, etc. and insulin resistance.


i tried different things the doctors suggested, which were metformin (especially because i have insulin resistance) and the pill, and i didnt like the reactions i got from all those, especially having to try so many different types of pill to find the "right" one, i ended up just giving up.

then a friend of ours suggested we try a naturopath, one in particular which he knew to be very good, and he put me on different herbs/tablets (tablets after a few times because i couldnt stomach the solution, :lol:) and i honestly believe that it worked!

being natural it normally takes longer than medicines, but it actually FIXES the problem rather than simply masking it, i was told due to my severity, give it 12-18 months, and i gave it that long (mind you, we werent trying at all during that time so it may not have actually taken that long?) and the month before i fell pregnant, i lost 5.5kg without changing anything! and my cycles were also becoming alot shorter and less painful too.

i completely attribute the changes to the naturopath meds because i wasn't taking or doing anything differently during the time i was taking that stuff.

if you would like any extra info, feel free to ask, im just not sure what else to write! :)

good job on the weight loss too hun! i know exactly how hard it is! :hug:

I'm with Hope - my naturopath is awesome too. I actually O'd on CD19 this cycle, unheard of in my living memory. Certainly worth a visit if you haven't tried it

Hi

Just thought I'd add my experience too! I had normal periods until I was about 23/24 when I stared having irregular periods and then none at all for about 18 months. I eventually went to the doctor and had some tests which showed PCOS, went on the pill, and didn't think too much more of it, until I was 30 and ready to have a baby. I came off the pill, but still didn't have any periods really, so went to FS after 6 months. They redid all my investigations and confirmed the PCOS (no insulin resistance) and I started on clomid for 1 cycle. I had absolutely no response so they cancelled and went straight to FSH injections. It was very stressful, and the injections made me very sensitive, emotional, moody etc (basically like REALLY bad PMT), but... it worked 1st cycle! So I conceived only about a year after coming off the pill. I now have 17 month old boy and am planning to go back to FS soon for #2 and am praying that it will work as well again.

Good luck! I really hope that your journey turns a corner soon- and never lose faith that you will succeed. I think with PCOS a lot of the treatment is trial and error, and what works for one woman won't work for the next one... so you just have to keep pushing until you and your doctors find the right answer for you.

Im 21 and have been diagnosed with PCOS, although im not ready to have a family, i always dream of having my own little family one day.

Sometimes i get really upset and emotional when i think about it, but no body seems to understand how i feel, this makes me feel very alone.
Im luck my bf is understanding but i wish my family and friends would understand too.

Although I have been pretty lucky and not put on any weight nor have i had excess hair growth, i have long cycles and have been getting very emotional.

Is it normal for me to get upset and emotional? Everyone around me keeps telling me get over it until im ready to have a famiy... Are these people right? or is it normal for me to feel this way?

Advice much needed xx

Of course it's normal to feel emotional and scared about what might be ahead, don't beat yourself up about it! I used to worry all the time about it, as there's so many possibilities... will I have problems conceiving, will I have to have treatment, will it work?? etc. But I think the key is to think it through, but not to dwell on it until it's an issue for you. You may have no problems, or you may have to have some assistance to get pregnant, but worrying about it now won't change that, it'll only make you distressed and not enjoy your life now. When you're ready for a family you'll be one step ahead as you already know your diagnosis and you can do the research before hand and be totally clued up so you can get help early if things are looking like you might need assistance. That will be really helpful to you when you're ready to start a family. I went off the pill early before I wanted to start a family and after 6 months of no periods I knew things weren't going to happen naturally so I made an appt with FS specialist early. As there was a 3 month waiting list it meant that by the time we had our appt we were truly ready and I hadn't wasted any time, so you can see knowing a diagnosis early can be helpful.

My advice would be to enjoy your life now and try not to stress too much about it. Chances are with the technology out there you will have a family when you want to, either naturally or with assistance. But you also need to acknowledge that you've got fear and feelings about these issues, it's nothing to feel bad about. If it's really impacting your life then maybe some counselling would help?? Talking things through with your partner or a counsellor might help you cope with your feelings. That might be overkill... but it's just a thought!

Good luck!

Thank you for your advise =)
I'm only new to PCOS and belly belly.

Its good to talk to people who understand the emotional rollercoster.

xx