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Women's health

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Pcos and metformin

58 replies

PearlHeart · 15/11/2021 20:19

Hi everyone ,

I am looking for some advice or tips if possible. I am also sorry if this is the wrong section to post in.

I have been in the fertility/endocrinologist clinic for 12 years now (18-30) I have had no help for my pcos other than a huge pressure/ being forced to consider bariatric surgery.

The Bariatric surgery team have said they would rather my hormone levels were a bit more stable before doing irreversible surgery, they agreed I would lose weight. Yet their worry is if things are not under control that I will stall in losing weight or regain weight back so a pointless surgery.

Recently my consultant has agreed to a trial of metformin
Week 1 : 1 tablet per day
Week 2 : 2 tablets per day
Week 3 - onwards : 3 tablets per day

I haven't been given much in the way of what to possibly expect or anything that could help.

I'm apprehensive as I have heard horror stories of diarrhoea, sickness and tummy upsets etc

💜💗

OP posts:
Chenga · 15/11/2021 23:52

I did ask for the slow-release format of Metformin but my GP was reluctant to prescribe that as he said it’a simply not as effective for this purpose. No idea whether he was correct

I suffered with stomach upsets (to put it politely) for the first three months but it was worth it in the long run. My periods have been perfect ever since, a 28-day cycle for the 7 years I have been on it. Before I was all over the place -sometimes light bleeding all the time for months or nothing for years and there was no explanation for it other than my weight affecting my hormones.

Not everyone gets the digestive problems, remember that. And if you do get them, you could
always ask for the slow release.

Viviennemary · 15/11/2021 23:59

I think I would give it a go. I have heard that metformin does cause upset to the digestive system but if you persevere your body does build up tolerance. There is a lot of information about it on the internet and at one time there was a pcos forum. Don't know if that's still going. But it could be easily googled.

PearlHeart · 16/11/2021 11:14

@Chenga

Thank you for sharing your experience with metformin.

Do you mind if I as was there certain foods that caused the side effects or was it just generally always there. Would you say it's best to take it with food or during eating. ( sorry for all the questions)

I have been stuck in the last 3 years with no menstrual cycle at all, prior to this I was every 35-42 days. I now rely on provera (Medroxyprogesterone) 10mg twice per day for 7 days to induce a bleed every 3-4 months. Which is horrible if I'm honest the emotional highs and lows you almost feel a bit more it if control.

I'm open to giving it a good try as I feel I have zero options left if I can't get approved for surgery, I will receive no more medical care from the fertility clinic.

OP posts:
PearlHeart · 16/11/2021 11:43

@Viviennemary

Thanks for your reply, I have done quite a lot of googling about it but hoped to hear some real experiences. As a lot of the things I have read have been mixed.
A number were positive in terms of helping with weight loss, helping with testosterone levels due to pcos and can help with bringing back a menstrual cycle.

However on the flip side I have seen it done nothing for weight, it didn't help with my cos hormones and didn't help with menstrual cycle.

I know everyone is different but even to have something to go off would help.

One thing I see throughout is digestive upset resulting in diarrhoea, nausea , sickness and tummy cramps / discomfort.

I'm at the point 12 years down the line , bariatric surgery denied by surgeons 6 times due to hormone levels etc that I'm willing to try anything to help or get me closer to being accepted for surgery.

OP posts:
Chenga · 16/11/2021 12:01

You should take it with food but in those first three months, it would have made no difference at all when I took it, the effects were so pronounced. I never veered very far from a toilet. As I say, you can ask for the slow release format which apparently does not cause those side effects but doctors are keep you try the regular Met as it’s so cheap (and apparently more effective but I don’t know if my GP was just saying that) The tummy upsets don’t happen to everyone if they do, I would say 2-3 months of building up tolerance and you’ll be fine. Continue to take it with food though, otherwise it will make your stomach sore.

Don’t google too much as you tend to get skewed results regarding people who had bad side effects or for whom it didn’t work as they are more likely to take to the internet and complain.

I think it is definitely worth a try. Metformin doesn’t dick about with your hormones directly so there is none of the highs and lows associated with that. It is also a fairly benign medication iyswim, that you can be on for years and not worry about.

I realise I have been lucky with it and it doesn’t work as well for everyone but honestly, it has been brilliant for me. I think if it didn't cause the digestive problems in the early days, it would be hailed as a miracle drug.

TuftyMarmoset · 16/11/2021 12:05

I had stomach aches on the standard metformin but no diarrhoea- although I do have an iron stomach. I told the GP (who prescribed it then- I’m also under the endocrinologist now) and she just switched me to the slow release one and I’ve had no troubles on that, the only side effect I’ve had is reduced appetite. I’m on 2000 mg.

That said I’ve been on it for almost 2 years now and not noticed any improvement in symptoms so I’m not sure it’s necessarily worth it.

EBearhug · 16/11/2021 12:12

I take it for diabetes, and I've not had any side-effects - I think you won't know till you try it.

DaimDillyDoo · 16/11/2021 12:23

I have PCOS and tried Metformin but it made me sick as a dog... of course you'll lose weight on it, if you're that nauseous you can't eat! I had bad tummy cramps, diarhea and vomiting. I even tried slow release but it didn't work. I came off it and tried inosotil combined with a hormone balancing diet.

PearlHeart · 16/11/2021 12:42

@Chenga
Thank you again for answering my questions and giving a good overview of things.

I think that's the downside to Google, you almost fall down a rabbit hole of very mixed reviews. I'm open to it possibly not working I just feel after 12 years of being stuck in limbo and the last 3 with provera. I just need to give something a try and keep pushing to try get the bariatric surgery.

That's a blessing no "crazy" hormone changes from angry , crying , frustrated and back again in a day.

It's nice to see there is some hope you f course everyone is different and nothing is guaranteed but I don't really have anything to lose in a way.

💜

OP posts:
PearlHeart · 16/11/2021 12:46

@TuftyMarmoset

Thank you for reply with your thoughts/ experience with it.

I have definitely found it's mixed results with pcos.

I'm sorry to hear it hasn't really made much difference. It's so difficult at least I found to get any help with pcos and the symptoms etc.

💜

OP posts:
PearlHeart · 16/11/2021 12:48

@EBearhug

Thank you for your reply, it's nice to hear first hand experiences of it.

It seems so mixed some get side effects . Others don't.
It works for some and not for others.

I agree about giving it a try, I feel it's kind of a last resort until I get approved for surgery and then down the line fertility assistance.

💜

OP posts:
PearlHeart · 16/11/2021 12:52

@DaimDillyDoo

I kind of worry that if I get side effects that will be the only reason for any weight loss etc. it kind of worries me that in order to loose the weight you potentially make yourself unable to hold food in ( sickness / diarrhoea)

It's pretty much last chance options as I have been told I'm not entitled to anything else to help and this was reluctantly my offered after the bariatric surgery team recommended my fertility/endocrinologist gives a trial to see if it will give any stability to pcos issues.

I looked into insitol and other supplements but I couldn't figure out what dosage and my consultant wouldn't tell me as he said I wasn't entitled to help?

💜

OP posts:
DaimDillyDoo · 16/11/2021 14:43

You can buy inosotil online, I got mine from my protein world and it works similarly to metformin.

Give PCOS nutrition a follow on Instagram if you're on there

PearlHeart · 16/11/2021 14:56

@DaimDillyDoo

That's handy to know, is there specific amount you have to take based on weight etc?

I'm guessing you mix it into a drink/ shake or is it tablets? ( sorry for the stupid questions)

I will have a look now on Instagram thank you so much!
💜

OP posts:
TuftyMarmoset · 16/11/2021 15:38

As inositol is a supplement rather than a medicine I don’t think enough studies have been done to establish the optimal dose but the packaging should say. You can buy it in tablet form or powder but the tablets are more expensive.

HouseIsOnFire · 18/11/2021 01:47

I know you are asking about meds, but have you looked at what you'reeating as well? I changed my diet and it has been life changing!

I've only recently (this year) been diagnosed with pcos. They tried to manage it with progesterone (previously 8 years on mirena with caused huge weight gain, which now I am trying to lose!)

I have tried losing weight before but with no luck and then in August I switched to no processed foods and avoiding pcos-irritant foods (there's load of resources out there, but kym campbell has 2 lists of foods to eat and foods to avoid, all free). I also make sure to eat protein at every meal.

I am now not on any hormones, my symptoms I've had for years before diagnosis have cleared and I'm even starting to have what looks like a cycle! I've also lost 10% of my bodyweight since August (sadly another 40% to go!).

I am still in shock it's had such an impact, and wish someone had told me before! I had tried dieting in the past to no avail and eating this way is sustainable unlike keto, & I don't feel deprived at all! If you'd like to chat more, feel free to pm :)

Gingerkittykat · 18/11/2021 03:09

Metformin made me feel so sick in the beginning I would skip doses so I could eat but when I was changed to slow-release I had no problems.

I took it for diabetes and lost a stone in a couple of months without trying. I just didn't have any appetite once I switched to the slow release so ate a lot less. My body did get used to it and my weight then stabilised but the initial weight loss was great.

ImNotWhoYouThinkIam · 18/11/2021 03:47

I was recently diagnosed with pcos and type 2 diabetes. I take metformin on the same schedule you've been prescribed. I'm about 6 weeks in and still suffering with bad belly. Pains, nausea and diarrohea. Blush
I haven't seen any positive changes yet, other than a bit of weight loss but I've also had a diet overhaul so it could be that.
You won't know until you try though!

Goneblank38 · 18/11/2021 04:18

Hi OP, I also take Metformin for PCOS. I had nausea, dizzy spells and terrible headaches while I scaled up to 2000mg. It can be tough while the body adjusts. Around the same time I began Metformin I committed to changing my diet and I began running. I found that Metformin had less of a negative impact when I was eating well and drinking water constantly. From my experience, making Metformin part of a holistic life change works best. My periods did return and became regular enough for me.

Good luck!

orangejuicer · 18/11/2021 04:24

I don't know if it helps but I was on metformin for gestational diabetes in pregnancy and didn't have issues like the ones you mentioned (also have PCOS btw).

ajandjjmum · 18/11/2021 05:20

DD had PCOS diagnosed about two and a half years ago - the biggest issues were weight gain (despite daily gym/exercise), mood swings and to a lesser extent, acne.

She saw a PCOS consultant who prescribed metformin, and she did have the unsettled stomach issues for several months, although they were controllable. She also had a very understanding boss, who packed her off home when she was feeling particularly sick.

Her moods have pretty much settled down, and she has lost a lot of weight, which was the biggest issue for her self-esteem. She is a much happier person.

She did try the SR version at one point, but felt that it was not as effective. She currently taken an average of three tablets a day, but the consultant has told her to be flexible depending on what's going on in her life.

Good luck OP.

PearlHeart · 18/11/2021 08:08

@HouseIsOnFire

Unfortunately I have I have been in weight management groups which I was referred to by the fertility/endocrinologist since 2014.

I have completed these 12 week programmes 5 times as the other 2 years they told my consultant there's no point referring me to the service.

However I have disordered eating, from 11-16 I would avoid food as much as possible and supliment with water eating one meal per day. Then it began to be guilt over eating anything health or not. If I ate a standard meal for 2 hours after I would have horrible stomach cramps and want to throw up as I didn't deserve food because I am disgusting. This is when the weight management groups referred me to food psychology. They discovered body dysmorphia and and disordered eating, they felt I had trained myself over the years ti have basically given myself a gastric band of sorts with the pain / sickness with food. I still struggle with this now I am embarrassed to admit. So it's a challenge to eat 3 meals a day,

I have just completed a further 12 week weight management group and lost 7.5kg but my fertility consultant is not happy. So wants me to do it again and they say there's nothing more they can do as I am not allowed the bariatric surgery that my consultant keeps telling them. As the surgery team feel my hormones are too all over the place and they worry I could end up in a worse off position. They amount of weight my consultant expects me to change PURELY as he wants to to assisted conception is too high to lose in the short time frame I have naturally (from weight management & surgery team) so I'm stuck in a no win situation.

OP posts:
PearlHeart · 18/11/2021 08:10

@Gingerkittykat

Thanks for sharing your experience. I do worry once I start about the gastro upset etc

That's understandable having no appetite with feeling unwell.

Oh I didn't know there was slow release, I will keep a note incase these ones are terrible.

OP posts:
PearlHeart · 18/11/2021 08:14

@ImNotWhoYouThinkIam

Thank you for your honest opinion on how they made you feel.

That's the one part I'm not looking forward to, but at this point I'm just glad I have had an option for anything that may or may not help other than having to do repeat weight management classes ( loose their target of 1.5% body weight for my consultant not to be happy and do it again as he wants them to do bariatric surgery)

That's so true, hopefully my prescription will be ready this week and I will just have to take the leap.

OP posts:
PearlHeart · 18/11/2021 08:18

@Goneblank38

Thank you so much for your reply.

If I'm completely honest I don't know the full reason why or what it may do in terms of for me but I'm open to giving anything a try.

I have been trying really hard to overcome my disordered eating and skipping meals etc which won't have been helping but my consultant wants a huge weight drop and he is not willing to wait for it naturally so behind my back has been trying to refer me for bariatric surgery they only reason I knew about it was when I got a phone call from them. :(

Thank you , I think I'm going to need it.

OP posts:
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