PCOS UK (Verity)
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Feeling frustrated

Hey all

New here, and needing some support, I am 26 and been diagnosed with PCOS 6 years ago, and I have been battling with my weight, periods, ahir growth, mood and pain.

I am off to see my doc again tomorrow and I am struggling on always being let down, being told to lose weight and it will all be better, I am currently on day 22 of my horrible period and this is the 12th one in 7 months. I have low mood and energy, I want to just sit in the corner and Cry. I am fed up of being palmed off and im generally looking for any advice people can give me around help they have got, medically or diet, anything that might help me in this situation.

my side effects are as follows, cramping so bad i cry in pain or faint, clots and long bleeding, headaches, back ache, pins and needles in my back and feeling sick, being sick, craving all the foods I shouldn't have, gaining a stone in the last month. I have done a pregnancy test incase as I was wanted to rule that out and it was negative.

it is effecting myself esteem, my life, my marriage , everything

thanks

Ann-Marie

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Hi Ann-Marie, I’m sorry to hear you’re feeling like this. I am 30 years old, diagnosed when I was 15. It’s been one heck of a rollercoaster with more lows than highs. I very seldom have periods but when I do they are varied. Sometimes very heavy and painful, sometimes none at all. Losing weight will help (has in my case) but it took me a very long time to accept this as the answer to my problem. While I have found that weight loss has helped with some symptoms, probably more the reduction of sugar intake, my periods still haven’t naturally returned.

Please know that you are no alone with how you are feeling, I know all too well how you’re feeling. Things will get better for you, you have to believe in yourself.

My very long story is below!

I was a dress size 12 when I was diagnosed. I was instantly put on Diabette which I was taking for 5 years. When I was 20 I decided to come off the pill as my now husband and I wanted to start a family (still working on it!) I know this was very young however I knew I’d have problems conceiving so had to start early. After just a few months and within a year a ballooned to a size 18. In 2009 I was referred, reluctantly, by my GP to see if we could start fertility treatment. I was instantly rejected at our first appointment because I was told I was too overweight and needed to lose 3 stone and sent away with no further support!! I did not handle this well and sent me down a dark road even though I tried to carry on as normal. Thinking there was no hope I was comfort eating and in another year ballooned to a size 22.

2 years later we booked our wedding which wasn’t going to be until 2013. It was only then that I decided to try and take control of my weight. I went to my GP to see about my options. I was prescribed orlistat, a diet pill. My goodness this was the worst thing I ever done!! I won’t go into detail but the side affects we NOT pleasant. Just a few weeks on them I decided it wasn’t worth it. A t at or so later I was put on Metformin. I tried, but it just gave me an upset stomach but I persevered. I was on off but just couldn’t get on with it.

2013 and the year or our wedding! I managed to get down to a size 20 (I never used to weigh myself) I achieved this my exercising (tried street running but ended up just using the cross trainer at the gym for half hour). Diet wise I was just trying portion control.

After the wedding I put on some more weight and approached my GP about bariatric surgery. The referral went through and I went for the tests but unfortunately got rejected. This is when things got really bad for me. I was off work for the beat part of a month as I simply couldn’t face the world.

I got a referral to occupational health (God bless the NHS), who were absolutely fantastic. I had some counselling sessions which really really helped me.

After a few months I began to pick myself up and review my situation in a new light. I started to go to slimming world. My start weight was 102kg. This worked well for 2 months and I lost 6kg. But then I stalled. I was getting frustrated because I was trying my best. After about 9 months I gave up, as I always do.

I was getting frustrated that I was told the key was to lose weight and it seemed that simple. My periods in between these years hadn’t returned, birth control wasn’t an option for me so I just decided to forget about it all and start living life. My weight continued to fluctuate.

Although my fertility issues had bothered me, the lack of periods and worry of my lining not being shed frequently was an even bigger worry. Also the horrible beard that has a tendency to grow 😡

In March 2017 I decided to go back to my GP to see if I could get another referral to a fertility specialist, more so to try and get my periods back! She agreed without hesitation and with just 3 weeks we had our appointment. With the nurse. I thought “here we go again, same situation as last time, it will all be a waste of time”. The nurse had taken my weight, which on the day was 102kg. She said she would have to speak with the consultant about seeing me, which she did. We had our appointment, which involved the task of losing 15kg. I was advised to eat a low carb diet and minimise sugar intake. If eating fruit opt for berries. I took this advise, along with some sessions at the gym (30 minutes on the cross trainer, a few light weights and 500 metres on the rowing machine). In the meantime I was prescribed progesterone to take every other month to encourage a bleed.

The first week of giving up sugar was hell! I had mood swings, I was not a nice person to be around. But I knew I HAD to do it. Not for the end result of a pregnancy, which would be fantastic, but more so because I owed it to myself. I wanted to start to feel good about myself again, wear nice clothes to work, go into a shop and know that I can pick up off the rail instead of having to order larger sizes, but most of all to control my symptoms and hopefully slow down the facial hair growth!!

I was astonished at how much the weight started dropping off me! By August I had lost 7kg. I feel ill in October and put some back on. Recovered over Christmas and then back on track. I’ve since then managed to lose another 5kg. I’m the lightest I’ve been in years and was always in denial about weight being a issue.

You have to want to lose weight. It’s not easy at all but just take small steps at a time. And when you feel you can’t do it any longer, yes you can!! You owe it to yourself and I promise you that you will see the benefits and your symptoms will improve in time. There is no quick fix sadly but have faith in yourself xx

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Thank you for coming back to me and sharing your journey with me, I have lost weight in the past , I managed to lose 3 and half stone and then the periods came back and became constant and it all went back on, I need some sort of kick up the ass, I want so badly to feel healthy and be healthy yet every turn I seem to self sabotage myself. I was doing really well with a work out programme but had to give it up as i kept falling and fainting. is there any groups that you follow on fb, or online for support , as I kind of feel that my family are not very supportive.

I wish you all the best with the fertility specialist, and 7kg is amazing , did you just cut all sugar completely ? i think i need to do that, I see so much information that seems to differ about caffeine and carbs, low GI etc.

thanks again =)

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It's a vicious cycle!! In the past when I came off track then that would be it- there would be no coming back. Now, if I have bad few days, it's ok. Draw a line and start again- tomorrow is a new day.

It's important to keep yourself healthy and that means not over doing it in terms of a workout program. From my own experience I have learned that even if I lose 1/2 a lb in a week, then it's still a loss. I have also done much better since I stopped referring to 'diets' and started to have a healthy balanced diet.

I did sign up to a Facebook Group about 5 years ago, can't remember what it is called now but to be honest I didn't really gain much out of it. As supportive as my husband is, and as much as I know I can turn to him, he doesn't really fully get it when I'm feeling down. I was very lucky to meet someone at work a few years back who is going through the same thing as me, so to be honest I don't know how I would have got by without her- she has been and absolute angel. And it's also taught me that actually it's good to talk- you just never know- you might be able to help someone else out by opening up.

In terms of my diet, my consultant advised me to cut out sugar as much as possible, and carbs. In terms of fruit avoid the likes of watermelon and pineapple (I eat tangerines), and if eating fruit try and stick with berries. I really enjoy eating natural yogurt with blueberries or blackberries. If I get bored of that I throw some pecan or walnuts in. I don't opt for low fat alternatives. It really is about finding foods that you enjoy, and also remember that there will be days when you won't stick with it, and there will be weeks where as good as you are you may still put on a little weight (me this week- so frustrating). Try not to let these situations know you off course- and keep in mind that end goal, whatever that may be for you- it will be so satisfying when you do get there.

If you have Twitter and want to message me privately my username is abbyw29.

I hope you manage to pick up soon xx

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Would you consider going on the combined pill? For me this masks all the symptoms pretty well (I am on yasmin), I also find it much easier to lose weight (it is still slow though!! but easier to keep the motivation going).

I would ask your GP to send you to see an endocrinologist as pcos is their area and they should be able to help. Pain generally is not a pcos symptom but is for endometriosis and their is a link between endo and pcos so it is not uncommon to have both. You do have to be quite forceful with your GP sometimes as due to lack of money they will just fob you off.

Look at the NICE guidelines on pcos and the NHS as it will make you feel more confident in what you can ask for.

Just another note, it is not uncommon to suffer from depression, they do not know if it is the hormonal imbalance or the symptoms that cause it. I know when I am going through a down phase as I cannot be bothered to do anything and just lack any umph at all (exercise also helps to lift the mood) but if you have a prolonged down period don't think twice about using anti depressants, I had bad PND depression and went on them and they brought the light back to the end of the tunnel - I was off them for about 7 years and went back on them a few years ago and they help me massively just to keep my mood more level.

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I am on a mini pill thing, this is like the 4th one we have tried to stop the bleeding , and nothing seems to be working, I am not leaving today with out being referred, I am hoping that the doctor will actual listen to me.

I will push to see a endocrinologist as you suggest, I had been previously tested for Endometriosis and they said I didnt have it. but these pains and the other side effects, are completely new to me in the last 6 years i have never been in this much pai or felt this ill.

I will take a look at the websites you suggested.

I was on an anti depressant a few years back, but they made me feel numb, not even normal just numb, I didnt feel anything so I will speak to the doc about maybe a different one.

thank you very much

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How did they test you for endo?

There are loads of different types of anti depressant as well so one sort may not suit but another may.

I would consider a combined pill if you are allowed on it as it should help hugely from a pcos point of view.

Good luck at the GP.

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i had scans done and scrapping of my lining taken and they said that there wasn't enough findings to suggest endo and that they didnt recommend I have the other one done , threw the belly.

I am writing done all this for the doc! and i will check if I have tried the combined or not.

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A laparoscopy (through the belly) is the only way to find out if you have endo - there is an endo forum on here so maybe ask the ladies that have it their advise if if a scraping would actually confirm it or not (I thought it was only a lap that confirms it but I am not that knowledgeable on the condition)

Good luck

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Thank you so much I will pop on there and ask ! I appreciate the advise

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