As we all know, at least 1 in 10 women are diagnosed with PCOS and everyday more and more women are added to our numbers. For so many of us, we get the diagnosis and are then left to our own devices, with very little information and support. I asked the women on the PCOS Diet Support Facebook page what they think every woman with PCOS needs to know. Here is what they said:
You are Not Alone
PCOS can often leave us feeling isolated and alone. The symptoms are embarrassing and not something we tend to speak about so it’s hard to find other women with the same diagnosis.
But, you really aren’t alone! There are hundreds of thousands of women with PCOS and so many of us know what you are going through. So, if you have just been diagnosed, take heart that you are not alone and why not check out the PCOS Diet Support Facebook page to connect with women who know what you’re going through.
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Diet and Exercise are the Best Medicine for PCOS
I’ve mentioned this in a number of previous articles and this is the foundation of this blog and my own management of PCOS. Researchers have found that diet and lifestyle changes are often more effective than medication in managing PCOS and should always be first line of treatment (1)
So, what is the best diet for PCOS?
Try some of these articles for more information:
Getting Started on Your PCOS Diet
Is Your PCOS Diet Dairy Free? It Should Be!
You can Fall Pregnant
One of the most difficult symptoms of PCOS is the difficulty falling pregnant. We are often diagnosed as we’re trying to conceive but are struggling to. I have also heard of many women being told that they will not be able to have children when they are diagnosed with Polycystic Ovarian Syndrome. This is simply not true.
I am one of thousands of women with PCOS who have fallen pregnant naturally and I have two beautiful children. There are many thousands more who may have needed help in the form of fertility treatment but they have also fallen pregnant. So, the bottom line is that just because you have been diagnosed with PCOS, does not mean that you will be unable to fall pregnant.
PCOS is for Life
Doctors are unsure of how PCOS develops or why we have it although scientists have recently identidies the genee thought to cause PCOS. PCOS seems to be caused by our insulin releasing cells over responding to carbohydrates and releasing too much insulin. This excess insulin acts on our ovaries (and adrenal glands), causing them to produce too much testosterone.
Basically, there is something fundamentally broken in our bodies and this is not going to go away. We can certainly manage it and our symptoms and we don’t have to be slaves to our PCOS. But, PCOS is not going to go away and we need to get control of it NOW.
PCOS Doesn’t Define You
PCOS tends to strike the core of who we are as women and can make us feel much less than we are. There is very little that is attractive about PCOS: hair growing in places you don’t want it, that extra tyre around your belly, skin of a teenager. But those things don’t define you. This is what I think defines a woman with PCOS:
- We are so courageous, facing this condition day in and day out, with perseverance and determination, not letting it get in our way.
- We are strong, fighting our bodies and our cravings, determined not to give in but sticking to our plan so that we reach our goals (whether it be to improve our skin, lose weight or have a baby).
- We are creative, finding ways to make food fun and use it as our medicine.
- We are so loving and supportive, reaching out to each other, feeling each other’s pain and encouraging each other to keep moving forward.
- More than anything, we are BEAUTIFUL (whether we feel it or not).
You have the Right to Excellent Medical Care
I have come across this time and time again and I have experienced it myself. So many of us are diagnosed and then left to our own devices. I was only offered treatment if I wanted to fall pregnant otherwise I was largely brushed off.
If you feel that your doctor isn’t listening to you or hearing you; if you feel that you’re not getting the help that you need, you should ask for a second opinion or a referral to a doctor who specializes in PCOS. You are in charge of your health and you need to make sure that you are getting the right support to manage it in the long term.
Also, it is important to remember that many women with PCOS also have other medical needs. Diabetes, thyroid problems, depression and anxiety and cardiovascular disease are often associated with PCOS. If you feel that your symptoms are not getting better in spite of following a PCOS diet and regular exercise, you could have other medical problems that also need to be addressed.
It will Take Time
Treating PCOS (either through diet and lifestyle or medication) takes time and is an exercise in patience. Many of the symptoms will take time to improve and get under control. So, if you don’t see results immediately, be patient and keep on keeping on. It will get better, it just takes some time.
So, these are some of the things that every woman with PCOS should know. If you think that I’ve left something out, leave me a comment and let me know!
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Articles like this are always a comfort as well as a motivation. <3
I have had this disease for 8 years my weight fluctuates so much. I need a decent diet plan Ican stick to and meal ideas. Thinking going on shake diet plan and one meal is anyone doing this and with meal replacement shakes do you have anything else with it?
D, I know that you commented a while ago but to be honest, I’m not a fan of meal replacement shakes. I don’t think they’re sustainable over the long term and I would rather manage PCOS with a whole food diet and supplements.
What does your diet look like in general?
Thanks for tip #7! I have been on the pcos diet for about a month now, and woke up this morning feeling the abdominal/back pain, and the swelling associated with the cyst which has been on my right ovary for about 6 months now. It depressed me to tears, and I decided to come looking for some encouragement. Many thanks for cheering me up.
I feel for you ? this morning I woke up with my hand completely numb for the first time in a month. It’s my first week on the PCOS support diet. I think that it is going to take time to figure out what I can and cannot eat. I am glad to finally be having some answers though. I was dairy and gluten free for a few weeks before that but it was too restrictive and there were too few other foods that I knew I could eat. That is why I changed.
I am just about to turn 20 in a month and am in the process of possibly being diagnosed with PCOS.. My gut feeling is I have it, but I don’t get a definitive answer for another week and a bit. I want children more than anything in the world, it’s my dream job/dream goal/dream achievement. I had always planned on starting to try to conceive at 25 but now i’m scared the longer I wait, as each year passes, it’ll become harder to conceive completely naturally (which I want so badly). I was wondering, how long on the PCOS diet can you roughly expect to be in good shape to start conceiving?
I just started the diet 5 meals a day and 1 snack. Low impact workouts 3 days and 4 days high impact…I stay hungry is this normal? I am taking in about 1500 cals…. drinking water all day and zero sugar and not low carb no bread, or dairy.Is the constant hunger normal?
I experience non stop hungry. One thing I find that helps is an appetite suppressant water drink. Juice from a lemon and a lime, one or more orange slices, mix with cold water and drink throughout the day. I have noticed a big difference in my cravings since I started including third drink in my diet. I hope it helps you too.
Is laser hair removal effective when you have pcos?
it works but it is expensive to get the full benefits. I got it done under my chin and then started taking hormone therapy and that worked
Hi, I’m 16, I have been experiencing a chronic headache for 8 months non stop, I went to the doctors and i told them about my missing period and they sent for numerous blood tests and ultrasounds and they now have finally diagnosed me with pcos. The doctors I have been to have never heard of a chronic non stop headache been related to pcos just wondering if anyone else is experiencing headaches as well.
Eating gluten & dairy gives me non stop headaches. You may try going Gluten & dairy free with your diet and see if they improve. My headaches were completely gone after a week or two. I had also added lots of water (80 oz per day) and a morning fiber loaded smoothie (psyllium husk) which may have contributed. good luck!
I get headaches when my iron and or vitamin B12 are low. Have they checked your iron, hemoglobin and B12 levels?
I have chronic migraines associated with my menstrual cycle, which is commonly affected by PCOS. My doctor helped me with regulating the hormone jumps around my cycle and it fixed the headaches.
I had dizzy spells and zoned out a lot- then got head aches- then it changed to daily migraines and nose bleeds. I don’t know if it’s PCOS related or not but I assume it is- the extra chemicals in your blood affect the chemicals in your brain too. So random mental and physical problems do occur as a result
Hi just a quick post with a few words of encouragement. I have PCOS which was properly diagnosed 1 year ago by my gynae after my cycle went loopy and I was unable to get pregnant. At 41 by drastically reducing sugar and carb intake, walking more and therefore losing a bit of weight, taking inositol and having acupuncture I got pregnant after 3 months. During my pregnancy I immediately developed gestational diabetes but was able to control it without insulin . Baby William was born one month ago and is perfect! Healthy diet, exercise, inositol and acupuncture in combination also noticeably improved skin and reduced other unpleasant PC symptoms. All the best to you all
After 2 mths of annovulation, the period started withot medication but wouldnt stop (fluctuating between light, heavy, spotting, light heavy again) for 30 days !! until the Gynaec started me on Primout-N -to be taken for 21 days, repeat for 5 months more.
Am very sad to be on hormone replacement at age 13 itself. My athletic and otherwise healthy lifestyle (Inositol -100 + multi vit : “ovacare) since 4 mths did not help?
Any suggestions … is hormone replacement the only way out in this condition?
Tarryn may have the best feedback based on the vast past experiences, cases she has read. Menarch at age 10 coupled with PCOS by 12 can be quite a nightmarish introduction to woman-hood.
I was put on the pill at 12 and it works for me (on implant now because of less risks though periods still end up as you said) I’m 23 now… But it doesn’t work for everyone. If medication doesn’t work experiment a bit with the no carb, no dairy PCOS diet and excercize plan. It’s tricky to find out what will work as it is a bit different for each person, but you should feel a difference when you get the right plan for you
Please do rrply me i m impatient now as nothing helping me out is the get trim help me out
Hii I m shweta I have pcod since I was 12 but luckily I have 2 kids I m 31 now with 97 kg weight want to reduce it trying hard from 1yr not finding results and I m pure jain veg help me to find altenate to meat thnks
Hello maam….i m just clueless about things happening to me….i mean im trying my level best to get ride of this but im not getting any results…feels soo hopeless sometimes….would u suggest me any medication along with my prescribed diet and a routine 1 hours of physical excercise that would help me reduce weight?
Hi tarryn i just want to share with you..A year after my polycystic ovary turns into Normal ovaries now ..thankyou for all the tips..words aren’t enough how thankful I am..I’m 12 weeks and 4 days now and the baby was fine..
I am a 30 year old diagnosed with PCOS in 2013. I’ve been going through fertility treatments to try and become pregnant for a few months now (not successful yet), but they have never said anything about diet/nutrition. I am not overweight (5’3″, 128lbs) and am a very active athlete. A lot of recommendations suggest weight loss, but I don’t think that applies to me. Should I be paying more attention to my blood sugar/carb intake if insulin plays such a big role in PCOS?
Hi Chandra – Sometimes being very athletic can cause just the same problem and prevents ovulation. It sounds daft I know. Its worth seeing if relaxing the intensity of your excersize can help xx
Hi Chandra. I’m like yourself and not overweight with my PCOS – I’m petite 5″2′ and UK size 8. I already led a pretty healthy lifestyle (lots of gym classes and relatively healthy food). I spent a year unsuccessfully trying to get pregnant but found this site and changed a few things (mainly lowering my dairy intake, taking inositol and spearmint tea). Within 2 months of my diet change I became pregnant. Obviously this is no guarantee, but I seriously believe the changes helped us. I’m currently 5 months pregnant with my first and over the moon. Good luck to you, I hope all goes well x
I also have lean PCOS (5’7″ 124lbs) but my PCOS caused me to feel horrible all the time and have two miscarriages. I have been cleaning up my diet and life, no toxic personal or cleaning products etc. for about a year now. The past few months though I’ve really gotten serious about the diet made it a solid habit and gained better understanding of exactly what to eat/not eat (I do low card, no gluten, no dairy, no sugar, limited fruit, lots of healthy fats) and have just had three normal cycles in a row!! First time in my entire life that has happened! I’m on a small dose of thyroid med and take inositol and multiple other supplements and do spearmint tea. Having PCOS without some of the traditional manifestations can be tricky and is why it took so long for doctors to decide that’s what I have and why I was so miserable but diet and lifestyle changes have made all the difference to me and I now have hope I will fall pregnant again soon and this time keep the baby, I know there is hope for you as well!
Hi Caitlin, I am sure Tarryn will respond to you herself, just wanted to encourage you to keep on with your lifestyle changes and look at sites like Tarryn’s for more help and advice, things like cutting out diary work for others.
How do you find a PCOS specialist? They exist?
See a reproductive endocrinologist..they can help you manage your symptoms and pcos
Hi Tarryn, I am nineteen years old and have been extensively trying to manage my pcos symptoms for almost six months with a low car diet and exercise. I haven’t seen success and do not understand why. I feel hopeless. Do you have any advice? Thank you.
Hi Caitlin, keep on doing what you are doing, results are slow but they will come. I did low carb and exercise and it took me almost two years to lose 60 lbs. I reccomend checking blood sugar levels whenever possible. I have recently added metformin and spironlactone meds to the mix and its helping a lot along with the diet. I had never gone the medd route before wanted to do it naturally but I’m finding great relief with the insulin resistance and the andandrogen blocker to help level things out. Good luck and don’t give up!
I took a year and a half to lose 55 pounds. It will happen. You will hit plateaus and have times when you slip up a day or two but the weight and symptoms will eventually ease off. Praying for your strength!
Hi Caitlin, do not get discouraged! Any small step towards getting your health in check is huge. I was diagnosed with PCOS at 19 as well and when I was 24 I had hit my goal weight and I had lost 75 lbs. I am now 28 and currently pregnant with my first child after trying for over a year. It takes a lot of patience and it will be a life long battle for us diagnosed, but eventually you will see the results and reach your goals. Don’t give up, you can do it!