Long term PCOS sufferer

[pcos-sufferer]

Hi, this is my first time on anything like this so bare with me.

I was diagnosed with PCOS around 2012 ish I can't remember exactly when as it was a long time ago. At the time I was told I was given no information or advice about the condition and was just sent on my way.

I started with period issues around 12 years old, I bled for over 2 years with no breaks, I went to my gp at the time who did nothing and just put me on the depo injection telling me this would stop the bleeding, yes it did but I was not aware of the side affects. Fast forward to the diagnosis in 2012 ish at this point I am still on the depo injection ( I had breaks but only for a couple months here and there to let me bleed) I had gained a substantial amount of weight by this point and couldn't figure out why especially because I was in the gym regularly and eating well.

At this point I had moved and requested an appointment with my new gp who took me off the depo injection and put me on the jasmine pill (not sure how its spelt) I spent some time in this pill which regulated my period.

Fast forward to 2018 I met my partner, after a year I came off the pill to try for a baby, I went to another gp who sent me to the fertility clinic where a male doctor just badgered me about my weight and told me they won't help until I lose weight. The problem I have is I can exercise and diet all I want but I don't lose weight, I asked my gp for help they sent me to a weight management online group, all they wanted to do was help me have a healthy relationship with food and that was it, the thing is I don't have a problem with food I eat bare minimum.

So I guess I am here to ask for help, I just don't know what help I need.

None of my gp's have ever ran any tests except an ultrasound they keep repeating every 4 or so years to re tell me I have pcos.

This year I didnt bleed for 8 and half months, I have asked my gp numerous times to investigate as this is not normal for me and I have been in a lot of discomfort with my stomach but I got told take a pregnancy test which I told them I had already done and took 1 every month which were all negative and so it was left at that, I then spoke to another gp who said its because I am nearly 30 and have pcos but again no investigations or test just left to suffer. Well today I came on, it's painful and theres not a lot going on blood wise.

So what can I do, I need help to shift the weight but I have no idea whats going on internally, and I really want a baby which is my end goal.

Any help and advice is appreciated.

Sorry it's a long post.

[JMSNutrition]

Hi, I'm sorry to hear that you've been not given an adequate duty of care by your GP's. I'm a nutrition coach who specialises in PCOS. It sounds like you have a lot going on and instead of writing out a whole spiel on here, I'd be happy to jump on a call with you to discuss the interventions that are likely to improve your symptoms and increase your chances of fertility. Do you know which type of PCOS you have by any chance? No worries if not. My website is jmsnutrition.co.uk if you would like to talk.

[needlewoman22 in reply to JMSNutrition]

How many types of PCOS ARE there?

[JMSNutrition in reply to needlewoman22]

There are 3 types of PCOS that are diagnosed dependent on the symptoms of PCOS being experienced

[needlewoman22]

My daughter was diagnosed at 23 by a locum, after ballooning at uni, from a skinny gymnast to a round faced sloth! She is active, rides, and is on her feet a great deal being a small animal vet, but has missed out on a huge amount of the fun of university life because of it.No help at all from the GP's, metformin seems to be the fall back treatment but it is not the cure all they think. I have explored so many different aspects for her-she is single, no man, so no children on the horizon, but it has impinged on her whole life-she is now 47. I saw Dr Mc Gowan on TV diagnosing a girl with PCOS so I got my daughter a phone consult (Jan 2021) and she put her on Spironolactone, which has helped her go from very heavy 2-month long periods to virtually nothing. She is still very overweight, cannot lose any, but seems a bit more able to cope. There really does need to be a concerted approach-not every female wants to get pregnant anyway, and it's the quality of life at the end of the day. Good luck!

[JMSNutrition in reply to needlewoman22]

So I tend to recommend inositol to PCOS patients. It works in a similar way to metformin but less of the metformin side effects are experienced. I must say I have never heard of Spironolactone for PCOS. This doesn't mean it's not good but the fact I haven't heard of other practitioners using it makes me want to dig into it a bit further. The thing that is most likely going to improve her PCOS symptoms are weight loss and improving insulin sensitivity if she is partially insulin resistant. In regards to weight loss, while i'd be happy to work with her, i'd like to give you some of the information you may need to get started.....

Weight loss is achieved by creating an energy deficit... consuming less calories compared to what is 'burned'/expended per day.

The majority of energy expended comes from our basal metabolic rate (bmr) (this is the the amount of energy our body needs to keep working even at rest i.e keeping out heart pumping, blood flowing, lungs moving, brain operating etc.... energy just to keep us alive even if we were in a coma) This accounts for roughly 60% of total energy expended daily for the average person. Then we have things like, the energy required to breakdown and metabolise food consumed, general movement e.g. walking to the shops, cleaning the house, walking to the bathroom, etc... and then exercise. This account for the other 40% most of which comes from general movement throughout the day (so exercise and the calories expended to break down food are fairly negligible in the whole scope of a day.)

To give her a rough estimation of her energy needs i'd suggest taking her weight and multiplying it by 22- this is a very simple way of getting an approximate bmr for females.

However in PCOS women this has been shown to be impaired by up to 40% so if you take the figure calculated above and multiply that by 0.6 you may be close to her bmr than what an online calculator would tell (this is potentially one of the reasons why she is struggling with her weight at the moment)

you can then take this number and x that by a daily activity factor to get a rough idea of daily energy needs- i'd suggest 1.2-1.5 if she is sedentary to moderately active again this is best guess (most people use step count to help them pick a figure), this is why a practitioner's help may be of benefit and they can run closer with estimations (i'm just trying to provide as much as I can in the simplest format to help you get started if that's what you desire to do).

Another sucker of PCOS is that some of the appetite regulating hormones appear to be impaired in PCOS sufferers- particularly leptin (the one that makes you feel full and would help determine satiatiation and the termination of a meal). Therefore, it would be prudent to choose foods higher in fibre and protein e.g. lean meats and some complex carbs and starches to help feel more full.

This is only a little start but I hope it provides some more guidance than the general 'eat less move more' rhetoric that is so commonly touted.

[Kimmy2002]

Firstly lots of different things help different people and not one solution suites all.. this is just my personal experience.. take as little or as much as you think could help … it’s a cooked out reply..

My first advise is go and do your own research, Pinterest/Google is a good source of advise.. pcos diet, pcos symptoms, pcos why, pcos what is it.. all things I typed and got some serious knowledge. There are also people on Instagram who do 30 day free meal plans and give you loads of information for free.. I think it’s called simple pcos, me personally I developed type 2 diabetes I was 6 stone over weight, lost a load of hair on my crown to point where I wear a wig and loads of hair in places there should be non! I was always tired and I just felt crap for so long it was my normal. My husband and I have been trying for a baby for over 13 years and for 10 years I hadn’t had a period so my pcos was quite severe. The first thing I did was learn what pcos actually is and then that helped me understand how to change both my diet and lifestyle to be well again. A super simple explanation is our body’s don’t tolerate sugar.. so they create insulin to match the higher sugar levels then because we have high insulin we create to much testosterone as the two hormones match each other within us and that causes a load of crappy side affects, like heavy periods, constant periods, no period at all, mood swings, weight gain, hairy chin, neck and back, loss of hair on crown and receding hair line, sweating a lot, always hot (especially hands and feet ) constantly tired, .. the list goes on but you can change it.. sugar is your new nemesis and It’s also not just simple sugar like sweets and deserts.. unused carbohydrates turn into sugars within our body if it’s not used.. so white potato, bread, pasta rice all things that if possible need to be removed from your diet even gluten free options should be a treat, There are other things you can have.. sweet potato, butternut squash, swede, quinoa buckwheat… but they are all complex carbs and will stop the ride of sugar spikes and plummets.. that’s also important as that why your craving food.. not even bad food just food I hear ya I been there.. it’s your body craving it’s next sugar high it sounds ridiculous I know.. one of the most helpful things I now know is to eat protein with every meal.. the protein helps Cut down sugar and carbs so double you protein intake (chicken, all fish and as much as you can inc oily fish if you can, please do cut the fat of bacon or pork as there is not a diet plan in the world where it’s good for you! ) and half your carbs and also good fat like avocado, humous, coconut oil, organic real butter.. please also stop counting calories.. a standard diet as you probably already know won’t work for us! and I back that up as i personally got a pcos nutritionist at my own cost and this comes directly from her... if I can shed any help I would also recommend going gluten and lacto free another side affect of pcos is loads of people are diagnosed with IBS again crappy lazy doctors what it is in most cases is a thing called pcos Leaky gut ( again Pinterest it) basically you can upset your tummy with gluten and lactos so if you avoid them it one more thing you don’t have to deal with but it’s more than just being close to a toilet constantly.. the leaky gut is twinned with inflammation of the stomach and left untreated can be nasty and again the side affects of that are feeling crap, tummy aches, the runs but it’s also affects your body working at a normal level.. Also the constant tiredness and feeling crappy seriously I know those diet changes feel like a lot but once you do it you will never look back.. I used to want to sleep in the late afternoon I was so poorly All the time I didn’t know what feeling good felt like until I changed my diet and lifestyle. One of the big issues is also stress.. stress actually makes your sugars increase crazy right! But when your stressed or upset do you reach for bad food.. look it up it’s a hormone called cortisol and it’s a ladys With pcos worst friend we need it as it helps us wake up and stimulates other hormones but we have too much.. there is no medical way of reducing so it’s a manage stress and situations. I’m 4 stone down, feeling fantastic and had conformation of Ovulation 2 months in A row but it’s taken 2 years of research and changing my diet to get there.. supplements is the last thing to briefly talk about you 1000% need inositol if nothing else, an omega 3, vit d with k3 and palmetto plus forte, also magnesium glycinate is a good Shout. There also herbal supplements called adaptogens you can take to help deal with stress hormone cortisol.. but please do your own research I can only tell you what has worked for me and every one is different. I wish you luck

[Hidden]

Not sure if this helps...im 38 was diagnosed at 14. I developed bad acne then weight gain plus non existant period...this led to gp referral and pcos diagnosis. Ive no idea what type i have but scans have shown i have textbook pcos ovaries. At 14 i was put on the pill...which led to more weight gain around 20 i came off it all. Then i was advised doing nothing with no period can led to thick linings which can become cancerous so i then opted for mirena coil. For me this was a turning point within a yr of mirena i discovered exercise. I know everyones pcos is different and im never was and am a runner but i started running and generally exercise possibly cause the mirena balanced my hormones and gave me more energy. But i lost weight and started to feel better. So if ur looking for a way to manage pcos the mirena was a great choice for me.

In terms of fertility i have a 4 yr old and another on the way both thru assited conception and both came with struggles. I tried various online forums..changed eating and vitamins but both times ive got pregnant via medical assitance. I got a gp referral to assited conception on my first i was given letrozole similar to clomid and worked pretty quickly. 2nd time round letrozole didnt work; 2 failed ivfs didnt work; a few losses and then back to the strongest dose of letrozole and that time it worked. Diet; exercise, alternate stuff helps but in my opinion fertility is best pushing for medical intervention

Nhs only fund medical intervention for ur first child so unfortunately for a pcos/infertility issue if u want more than one child u need to pay urself xx