When people ask me what I do, I’m very open about PCOS Diet Support and the fact that I blog about Polycystic Ovarian Syndrome. People either start glazing over or if they ask me more about PCOS, I tend to give a brief overview. How do I explain to someone how deeply PCOS affects me; how it impacts on my mood, self esteem and the fact that it goes beyond just being a fertility problem?
So, to celebrate PCOS awareness month, I asked many of my readers what they want others to be aware of when it comes to PCOS. I’m going to share with you some of the things that they wanted others to know. If you are reading this article and have PCOS, my hope is that you would see that you are not alone in your struggle. If you are reading this and don’t have PCOS, thank you for taking the time to learn about something one of your loved ones may be struggling with!
Here are some of the things that were mentioned:
It’s more than just my ovaries
Yes, PCOS does impact on our ovaries, hence the name Polycystic Ovarian Syndrome. But it is also so much more than that. PCOS is an endocrine disorder that impacts on just about every area of my body and my life.
I gain weight easily, may have mood swings or struggle with depression. I have very real fears around my ability to fall pregnant. Sometimes I can’t think clearly and my getting through my day is a huge achievement in light of the exhaustion that I feel.
So, no, PCOS doesn’t affect just my ovaries. It affects me. Some days I need to be given a little more grace or with more tenderness cause it’s just been one of those days.
I may be overweight but it’s not for lack of trying
Some people may look at me and think I’m lazy, that I really should stop eating so much or that I don’t care about the way that I look. That’s simply not true. Don’t judge me because of my size.
PCOS makes it so easy for me to gain weight and losing it again is a constant struggle. I am often careful about what I eat and am mindful that what I put in my body is either helpful or harmful.
So, please cut me some slack. I may be overweight but I’m working on it.
Fertility is a tricky issue
Fertility is a tough one. It’s not impossible for me to fall pregnant but it can take so much longer than the average woman and it can be a source of great heart ache. So, before asking if I’m pregnant because of my weight or when I am going to have children, please tread carefully.
And now there’s another thing to consider. If I do have children, it doesn’t mean that PCOS doesn’t affect me anymore. Remember that it affects more than just my ovaries.
PCOS is an expensive business
Having PCOS is an expensive business. Not only are there doctor’s bill and medications, there is also the cost of fertility treatment to consider. Eating properly to manage my PCOS is also crucial and healthy whole foods tend to be much more expensive than standard processed foods. So, treating my PCOS is an investment of time, money and energy. It’s an investment that I am prepared to make, though, to live my life to the full.
It’s Not Convenient
Have you ever spoken to a woman who is ecstatic about having their period? No? Well there are so many women with PCOS who haven’t had a natural period for months, if not years. When they do finally actually have a period, it’s cause for major celebration.
So, not having a period for a couple of years is not convenient. It’s a sign that there is something wrong with my body.
PCOS is not curable
At the moment, there is no cure for PCOS. This is something that I have to learn to live with. I may well get my symptoms under control but I need to make sure that I keep them under control.
So, everyday when I wake up, I make a decision that PCOS is not going to get the better of me. Today, I will work hard to stay healthy. Some days are better than others but on the whole, I will do everything that I can to keep my PCOS well managed and in control.
Sometimes I just can’t help it
There are times when I know that I am being irrational or hormonal but sometimes I just don’t have control over my moods. I know that I can be difficult at times and it is something that I don’t particularly like. PCOS affects more than just my ovaries (have I said that before?)
My moods can get the better of me and I know that the mood swings are not fun for anyone. I’m really sorry and it is something that I am working on (as I work on getting all of my PCOS symptoms under control).
I am one of many
Unfortunately PCOS affects one in ten women worldwide. So, I am definitely not alone in my struggle with it. Considering there are so many millions of us affected by PCOS, I wish we had better support and understanding of what PCOS is and how it affects me.
I am determined
PCOS is not fun and does affect every area of my life. I am at risk for a lot of secondary health issues and it’s symptoms often make me feel unfeminine and unattractive.
BUT, PCOS does not define me and it is not who I am. I refuse to let PCOS dictate my story and I will keep going in my fight against it. I am determined!
I so appreciate you!
It means the world that you have taken time out of your day to find out more about PCOS and how it affects so many of us. If you have PCOS yourself, thank you for sharing your struggles and for your support.
If someone you love has PCOS, thank you for loving her enough to learn about the many ways that PCOS affects her and what it means for her.
So, those are just some of the many things that were mentioned by women with PCOS
Is there anything else you would like people to know about PCOS that I have not already mentioned? Please leave me a comment below!
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251 Responses
My friend had pcos,I didn’t even know what it was until she told me ,and she said the doctor told her hairy and overweight women tend to have it and I became worried because am both I have been overweight and hairy since I was a child, I have always had regular periods unlike my friend hers lasts for months and I just saw this article today and I got really scared , could I have pcos ?
hi lovely, best advice is to speak to your gp!
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October 12, 2018 at 2:34 pm
I have suffered with endometriosis and PCOS since I was a teen. I am now in my late 40s. I have gone through decades of surgeries and fertility treatments and have suffered painful menstruation for as long as I can remember. I also suffer from arthritis and in my early 40s managed my arthritis pain with the Dr. McDougal diet. The diet also alleviated much, but not all of my menstrual pain. I went off the diet when I was pregnant with my daughter who is now one and a half years old.
I didn’t get back on the diet until recently. We recently had a cold front come into the state and my arthritis pain went off the scales. I realized it was time to get back on my diet which starts with a 7-10 day fast. Coincidentally this started with my menstrual cycle this month and, for the first time EVER, I have NO cramps, bloating or pain.
I wish I had known this from the beginning. For however many months-years longer that I menstruate, I will be FASTING when it happens.
I was diagnosed with PCOS in my early 20s and went on birth control for 7 years. I went off for 3 months and started trying to get pregnant but I wasn’t ovulating or getting periods. I took Fertilemd supplement for one month and it jump-started my hormones. I wasn’t sleeping, I got acne, and I was moody……but after 30 days I was pregnant!!! I now have a healthy baby girl:)
I’m 26. I have been dealing with this since I was 13. Went to every doctor possible even those that are not covered because of their practices. Im constantly trying to find a balance. I am active yet always gaining weight. My diet is pretty good even though I force myself to eat due to constant loss of appetite. Tried so many different holistic approaches until 19 when I was put on birth control. Birth control messed up my liver. Metformin makes me feel sick all the time. Constantly in pain all around my waist and mood swings keep swinging. Its funny when I read articles saying we have to control our stress levels when many of us suffer from stress, depression and anxiety. I do believe I will find something that works for my body one day but it is still hard trying not to give up and feel “normal”.
Have you also tried chromium picolinate? It’s found at a health food store. I was prescribed it and also a digestive food enzyme because many of us also have digestive problems, leading to being deficient in vitamins, minerals, all those things.
It’s been 5 month my husband told me he is not in love with me anymore. That was the last time I saw him. He moved in to live with her, this was after 9 years our my marriage, i was heart broken until i got in contact with Dr.Mack, after i saw good testimony on how he restored relationship, i decided to get in contact with him and when i told him all my problems he laughed and said this is not a problem that everything will be OK in 2 days time.Exactly the 2nd day my husband called me i was shocked and what surprise, My Husband behavior was normal as the man i got married to. Am so grateful to Dr.Mack for what he did for me in helping me to get my husband back, I want to thank God for using Dr.Mack as my source of savior,if you wish to contacting him Email: dr_mack@ yahoo. com,,,
I really love this article, I’m currently 20 and was diagnosed early last year, and it’s been a pretty rough road for me, I’ve been between jobs a lot, I’ve had a big problem with my sleeping and my will to get out of bed in the mornings. I’ve been pretty down about everything since I was diagnosed. I kinda always wanted to have a “normal” life but that idea seems like such a fantasy at this point. I’m not really sure what I’m trying to do with my post here, but not many people really understand what pcos is for so many women, I just enjoy seeing people who understand what pcos really means to those of us that have it.
I’m exactly the same! I’ve had period issues for a few years now (I’m 18), but last year I was diagnosed with PCOS and It seemed to explain a lot. But lately I’ve been so down and get random mood swings and take it out on everyone else but most don’t believe it could be due to this. I seem to get the same period pain in my lower abdomen each time I’m stressed or worried, even if I’m not on my period. I’ve become worried lately that I am infertile, as a few times I thought I might be pregnant but I never seem to be, so I worry that when I am trying later on it wont be possible. Does PCOS get worse with age? Will I have less chance of being able to conceive later on if my symptoms are so bad now?
I commented on here a while ago and I just found out Sunday that I am pregnant. I am 5 weeks 1 day pregnant and I have concerns. Is me having PCOS going to affect my pregnancy? Am I going to miscarry due to my condition? Is my baby going to be ok? Is my baby going to be healthy? Can i pass on my pcos to my baby? I also was diagnosed with MRSA in 2007 I haven’t had a breakout in years but can I also pass that on to my baby?
Hi I’m 17 and i have pcos since i was 15. Its so hard for me to believe that i have pcos… when i see those girls with shorts and bikinis and then look at myself!! I can’t wear bikinis and shorts because i have hair on my chest and my legs and my stomach and my back… i just want to cry .. literally its so hard for me. I want to be normal like other girls but i cant. I just cry and cry and cry all the night till morning. I feel really bad about myself cuz i have hair on my chin my neck my face. And people say you are so beautiful but they don’t know how much pain I have. Always shaving my facial hair cause im scared of all my friends call me BOY… but now I’m using pills and diet hopefully it will help me. Thank you ❤️
I was also diagnosed in same age and was suffering since 13 and I really look so bad and dull with pimples
I’m not sure if this is an old article or ongoing, but I love it! I am almost 22 and was just diagnosed with PCOS last month. I hadn’t had a period in over 2 years, but had been told by my previous doctor that my hormones (blood test) were normal and that I did NOT have PCOS. After months, maybe years, of frequent abdominal pain, amenorrhea, and a combination of other things, I got a second opinion. My new doctor told me that you cannot completely rule out/confirm PCOS without an ultrasound which I had not had before. She was able to tell me 15 minutes after my ultrasound that I indeed had PCOS the whole time. Mind you my first doctors appointment was 4-5 years ago. She has put me on birth control and I realize the hormones may take some adjusting. However I feel lethargic, nauseous, and just not myself. Is this normal during month 2 of birth control? She said my thyroid hormones were fine but I’ve still gained 20 pounds within the past year and a half and would like to lose some anyway. If anyone has any helpful tips, recipes, etc., I would appreciate it! I’ll definitely be checking out more of this website as well.
I have no idea how long ago you posted this, BUT yes it can take 3 to 6 months to really get adjusted to birth control, especially if it’s your first time. Another bit of advice I’d give you – PCOS related – stay AWAY from Progesterone-only BCs. They do NOT control the PCOS symptoms, you need to Estrogen for that. I did the Progesterone shot for 3 months or so and that lack of Estrogen let my PCOS symptoms go wild and I ended up gaining 30+ pounds in that 3 month span with no other lifestyle changes. Now, not all BCs are created equal for every woman…you may go 6 months and still feel terrible, that’s when you go to your Dr and try something else. Good luck Lynn!
Such a great post! The only thing that is different for me is that I do get my period. It is just irregular and very heavy and miserable. So, I would be totally okay with it stopping and never returning again. Haha.
Thank you, Tarryn for your wonderful blog and courses. You are really going to change my life. xoxoxo
Thank you for making a safe place for women to find out pertinent information. I was diagnosed 35 yrs ago after almost bleeding to death from my period. If it wasn’t for my primary care physician, who was incredible for his time. (self proclaimed “country doctor”) I would have died. He found me after much research, my endocrinologist. The Man saved my life and has been trying to keep me stable for all this time. Please make sure you include the other end of the spectrum with PCOS. those of us that bleed excessively. Because of the excessive bleeding I was told at 26 that I would never be able to carry children.
Recently with much testing and research, I discovered I have Hashimoto’s Disease. Further research should be done linking PCOS with Hashimotos (Thyroid) And please, if you think you have either of these diseases, See a Good Endocrinologist. So many Family Practitioners are in way over their heads treating and diagnosing either 0of these diseases. Keep the faith!
I am 19 years old and last july 2016. I am diagnosed of having a PCOS at first its hard for me. Especially on my weight plus my irregular period. first I hate taking medicine and its hard to accept that I am taking some pills just to have period. My Ob gave me 6 months for taking pills and my last period is january 2017 and now i am going to have my check up again on my ob gyne. I am also afraid of not having a baby in the future. They say that it’s hard. But I must work hard for my own sake. Thank you for having this kind of website ^^
Those of you struggling to get an OB/GYN to understand to even look into your symptoms, try to find a midwife. When I was a teen I went in for my annual checkup and came back with a positive pregnancy test. Except at that time I hadnt even had sex yet. They all shrugged and said I must have a hormone imbalance and did nothing more to look into it. I havent suffered with infertility as I have two kids now. Ive had the same doctor for 5 years now, I’ve gone in multiple times to talk about my irregular or extremely heavy and long periods, weight gain, inability to lose weight, hair loss, facial hair, all of it. Everytime they run some basic bloodwork and then say oh well, I dont know whats going on, everything seems normal. They have never done a test for pcos or testosterone levels or A1c. I didnt know much about pcos except that it usually comes with fertility issues so I didnt even bring it up since that wasnt an issue for me, but they shouod have known better than me. I just knew something was wrong and that they werent listening so I went looking for doctors with a more natural approach to medicine and ended up being refered to a midwife by a friend. I saw her this month and talked to her about everything I have been telling my OB/GYN for years and she immediately knew it was pcos and ordered all the tests. Find someone who thinks it is important to spend the time to listen to you and really go over everything. Because she runs her own business she has time for her patients. We spent an hour and a half discussing everything, whereas with a regular medical professional they rush through it all to go on to the next person within 10 minutes.
This is the first article and comments I’ve seen since I was diagnosed with pcos that has helped me to see that I’m not going crazy and my symptoms are real.
My diagnosis was terrible I was told I had pcos four years ago then told I didn’t and it was a mistake however two years later I knew I was not my normal self I knew something was wrong. I had every symptom (hair loss, extreme tiredness, 2stone weight gain which I couldn’t shift, tough patches of skin, ache and mood swings) apart from irregular periods. When I went to the doctor because I didn’t have irregular period it meant I didn’t have pcos! Once I demanded a blood test it also didn’t slow up through my bloods so they would not send me for a scan. I went back numerous times I felt like I was going crazy it was only when I decided to get a private scan I was told on the spot I have pcos there was no way there was any doubt, I felt a huge sense of relief that there was a reason I felt how I did. I was put on metphormine for a few months which they said would help me loose weight however I had terrible hair loss on the medication and came off it.
Today I’m still sruggling with the symptoms I’m still unsure if it’s normal how I feel I’m tired all the time, my head constantly feels fuzzy, I find it extremely hard to concentrate I feel like my brain doesn’t work the same anymore is this normal??
I was diagnosed during my teen age but no one took it serious including the doctors but now at 25,because of my severe acne and scarring,my dermatologist referred me to a gynaecologist who comfirmed it again. I have hairs on my chin,chest,abdomen,legs etc,severe acne and scarring,i increased from a size 6 to size 14,my cholestrol level is constantly high even though i avoid all meals that can cause such.i am presently being treated with lymecycline and birth control pills.the whole stuff has led to a lot of complexity issues, i cry every night and feel very emotionally unstable. Nobody cares about what i go thru and with all my effort it gets worse.i dont know what to do am tired.
I’m so sorry that you’re having such a hard time, Ruth! It can all be exhausting. Just take it one step and one day at a time.
I’m 31 and was currently diagnosed with PCOS. I have a daughter, and I had her 4 years ago – the time when I don’t have PCOS but is already having irregular menses. The time I was diagnosed with PCOS, I was devastated and stressed out. It never came to mind that this can happen to me. My husband and I are planning to have a second baby (in the next 2 to 3 years), and the thought of having PCOS and its effect on the chances of being pregnant again is kind of heartbreaking. I’m just praying that when the right time again for me to conceive, we will be blessed with another angel. As of now, I’m trying my best to have a healthy and active lifestyle. I was glad to be bumping on this site as I felt that I have someone to share my thoughts and feelings as one of the women who are suffering from it.I know we can conquer this. 😀
Im 15, and I found out tonight that I have PCOS – better to find out sooner rather than later, right? – I’m not gonna lie, i’m a little nervous about it, i’ve got a friend who has it as well, so i can always talk to them, but it’s nice that pages like this exist so that there are other places people can talk about it.
I’m 15 as well. I just found out I have PCOS and I’m absolutely devastated. All I ever wanted was to have kids. i’m so helpless and I feel like this is the end for me.
Ok so I am so happy I found this post! I feel I need to say how I feel, tell my story and I have no one who understands how I feel .. until I read all your comments! So I haven’t had a period for 3 months I am 26, me and my partner have been trying to conceive for over two years (I was just kinda kidding myself that it would happens eventually) I do have a perfect little girl who is dying for a sibling, I no how lucky I am to have her, so around Christmas when I was really late I though YESS it’s finally happens took a test.. well about 50! Had loads of negative and 5 faint positives I was so happy then I started to get really bad pains went the doctors got messed about them eventually got sent for a scan last week, now I had no bleeding so 99%though there would be a baby, sadly there was no baby not even a sack and instead of getting told I was with child at the scan I was told I had PCOS! My world crashed and I have seen 2 doctors both had a not arsed attitudes! Basically sorry nothing we can do about it, loads of woman have it suck it up and get on with your life ?I can’t believe that woman get treated like this! My mood swings have been horrendous those close to me don’t really seem that concerned with it and inside I feel ashamed so sad and a big lost! I no I shouldn’t and I am hoping I can come to grips soon this is the start I suppose! Thank you for all being so amazing and honest with your posts! Also if anyone else had positive peg test with pics?(I am waiting to see a gyno to look in to it further) all help and advise will be massively appreciated x
Forgive yourself. It doesn’t help by blaming yourself. Diet, exercise, and sometimes medication can help. A gynecologist can sometimes take scans and see what’s going on. Blood tests can see if there are other concerns. For me, diet helps a lot and exercise. It is really tough as a lot of people don’t understand and they don’t understand what comes with it.
Hi Jessica,
I too was told quote “its highly unlikely that you’ll ever fall pregnant”. I was about 31 at the time (now 37). Having 1 or 2 periods a year was normal for me.
In August 2014, my husband and i did a neways 3 week detox. During this time i fell pregnant, but didn’t know i was pregnant until 33 weeks later. 6weeks later we brought home a baby. I’m a bigger girl so i didn’t notice my tummy getting bigger.
The main reason for this post is to tell you to not give up. I know a few other girls with pcos that have had babies also. I’m now going to get gastric surgery in the up coming months and the surgeon told me that a dramatic change in diet will make me extremely fertile as well as increasing the libido. Maybe that’s something you can try?
I’m sorry that you were treated poorly. Some doctors just treat you like a number. Please don’t lose hope, it will propably happen once you relax which i know is easier said than done.
Good luck and all the best Jessica.
I’m 16. I was diagnosed with pcos a few months ago. All my doctor did was take blood tests. Nothing else. I find my weight bothers me and getting motivation to exercise is a problem. Going from eating junk to tying to eat healthy is he
Are especially when my house is mostly full of sugar and prosessed foods. No one really knows how I feel about my pcos. They don’t think it’s that big a deal. I found this page very comforting . Thank you
I was diagnosed with PCOS around 2 years ago and the real painful part was that even doctors here in my country (Iran) didn’t take it seriously and they wouldn’t give me a proper prescription to deal with my symptoms (hair loss, acne, insomnia, mood swings, depression, abnormal dramatic bleedings to name a few). All I heard was that this condition isn’t curable and that I have to live with it for the rest of my life and that there’s no official treatment/medication for PCOS…. I never gave up and today I’m completely PCOS-free; my symptoms are totally gone, my ultrasound result indicates perfectly normal-size ovaries and I feel like myself once again. So if you have PCOS pleaaase don’t listen to what people keep telling you, even cancer is curable. All you need to do is encapsulated in these steps:
1: Listen to your body’s language to figure out what type of PCOS you have (what is the cause of your condition? insulin resistance? hormonal imbalance? stress? obesity? or a combination of 2 or 3?)
2: Forget about useless non-existent chemical medications for treating PCOS. If your body is insulin resistant drink one glass of brewed turmeric everyday (for one to two months). If your body needs more estrogen drink one glass of fennel tea again everyday, get a lot of sleep but if your PCOS has made you insomniac try to find an herbal remedy that helps you have better sleep
3: if you’re not currently on the pill or plan on getting off the pill in the near future, try taking Vitex (do not take them while you’re still on the pill)
4: If you have gained a lot of weight and don’t seem to lose much of it easily then there’s a big chance that your body is insulin resistant (turmeric work wonders for this condition)
5: Try Ceylon Cinnamon tea once in a while (especially if levels of your blood sugar are high)
6: Chill out, I know it’s easier said than done but it’s absolutely necessary. Besides once you see that your symptoms are under control you do automatically relax a little
7: Don’t expect PCOS-free people to get you or understand what you’re going through; they simply can’t.
8: avoid inactivity
9:Last but definitely not least; try acupuncture. IT IS ABSOLUTELY INCREDIBLE how these little needles can help your body heal itself.
Good luck with all of you and please do not give up no matter what others say: there is always a cure.
Heyy. Was going thru comments & read what u wrote about insulin resistance & Turmeric. I have high insulin levels & currently having anxiety attacks coz 3 months due. Extreme difficult to lose weight. Can u plz tell the way of using turmeric? That would b quite helpful. Thanks in andvance. Xoxo
Hi Elmira;
I read your comment and I must say it was very informative and motivational!
I too am living in Iran and it’s been like 10 years since doctors diagnosed me with PCOS. I’ve been struggling with my weight since my puberty and even though I’m working out regularly and trying to control my calorie intake, I could never reach my ideal look.
on the other side, doctors in Iran are no help and their reaction to this terrible syndrome is as casual as a simple cold! thanks for sharing your experience and the best way to control all the symptoms, I appreciate the effort!
I’d love to be in touch with you, tell me if you’re interested.
Hi. I was so glad after reading your notes. I suffer from this syndrome. as you an Iranian girl that always here from doctors it is not curable. I fear from using these ways without a physician confirmation. Isn’t it better to visit a Traditional medicine professional to start such a treatment duration??
thank you
Hi, I’m 23, from India, and here as well, the doctors are not aware of PCOS. Apparently I’ve had it for around 6-8 years, but I was diagnosed just 3 month ago.
The doctor put me on birth control, even though I’m not sexually active, just to control the symptoms. But it was hell! Lots of side effects.
I’m glad to hear how you could get rid of PCOS and this gives me motivation.
I’ve stopped taking the pills and am looking forward to a huge lifestyle change to control my symptoms.
Would you please explain what do you mean by brewed turmeric and how do you prepare it?
Sorry for the long rant, your help would be really appreciated. 🙂
Hello Elmira!
Thank you for the tips that you have shared and will definitely try some of them. I have experienced the same inept diagnosis. When I went for my check-up the doctor basically just told me that I may find it difficult to get pregnant and that I should lose weight and was given Metformin. I did not know that there was so many things about this disease that I wish my doctor could have told me.
I decided to stop taking it about 4 years ago because I wanted to take a more natural path to healing. Through your story, I am comforted and continue to hope that I will be pcos-free someday. This disease has affected my life in so many ways.
Am 17 and i just found out i have PCOS. First came the body hair with more on my legs and that was when i was 13 but my mom didn’t let me take it off because she wanted me to accept myself and that caused the bullying in school. At first when i got my periods they were mostly irregular and sometimes i don’t get them for months.Well, what the concern of my parents to something medical was the sleep apnea. I barely get enough sleep at night and am always tired and sleepy during the day.Well my major point is that right now all i can say is i have a lot of mixed feelings because am kinda happy that all this weird stuff has a name and also am not alone in it but i think it was better not knowing about it because am still in the denial phase where i can’t accept the fact that i feel am gonna die because it’s so not fun. But its still kinda nice knowing am not the only one in this.
I was diagnosed of PCOS a year back. Since then i tried almost everythng anyone ever told me. I did dieting excersice, medications what not. Lost like 5 pounds in the start then the weightloss stopped. I kills me from inside every month when i get over my due date for periods.. dont know how many hrs i gav spent in the bathroom CRYING in fear of never having kids. The worse part is, cant tell anyone in my family coz where i live, girls with slight abnormality , life is doomed. Im first time writing anything about my PCOS anywhere. Being a dr myself, the thoughts & aftereffects of pcos makes it a nighmare. Feel like dying.. wrote just to tell you, im glad someone out there is brave enough to speak about the problem in public. Just so you know, YOU ARE APPRECIATED.
This really helped me while I wait to see my doctor again
I was diagnosed last week and I’m only 19.
I never knew there were so many amazing woman out there also, facing this fight.
I feel a little better knowing I’m not alone.
Last night I was cuddling my partner and I told him I was scared, had a little cry. He him hugged me tightly and said it will be okay.
I’ve already been diagnosed with depression & anxiety so this seems to push me to almost my limits.
Seeing a dietitian this week to see what amazing foods I can no longer have ?
You woman are inspiring me to take this battle strongly and I am not alone.
I’m in the exact same situation. I was diagnosed with PCOS last week and I’m only 18 years old. Instead of missing my periods I am bleeding or spotting non stop. I also have been dealing with depression/anxiety/panic disorder for a majority of my life. Due to all the random stressful bs in my life I lost a lot of weight so that may be a factor. I also think my bleeding gets worse whenever I worry. Everyone that deals with this seems so strong and hopeful and I honestly don’t know how to deal with this. I also read something about adrenal PCOS. I’m wondering What the difference is. I’m concerned with the fact that most doctors seem not to know much about this. Im starting to also see a dietitian. Sorry I’m word vomiting a bit. I’m just really concerned and overwhelmed.
I really want to thank you for the things you do for women suffering from PCOS. I was diagnosed only a few months ago and am sooo depressed over it. Unfortunately until now I had to deal with doctors who had no idea about PCOS. I still didn’t get an insulin resistence test because my doctor got it confused with a normal diabetes test. One doctor sends me to the next etc. Let’s not even talk about how people around me reacted to it. From friends who won’t stop asking me if I ever will be able to have children, or people who complain over their period being a day or two too late, to people trying to play it down completely. I feel so alone and confused right now but your website kind of helps me understand a bit more. Thanks a lot!
I diagnosed with PCOS a few weeks ago, and its really breaking me inside. PCOS destroy me inside and out, I can’t manage the mental breakdowns I am facing right now 🙁
Yannie, I remember the tumbling feeling after my diagnosis 9 years ago. It gets better, I promise. Some days are harder than others, but you will get through. How do you eat an elephant? 1 bite at a time. Just take 1 day, 1 hour at a time when you feel overwhelmed, you’ll make it. I did.
Inositol, Google it..it helps
Thank you for a great and informative article. I just got diagnosed about a week ago, nobody else in my family has this, and I’m very angry and upset and scared about the diagnosis and don’t seem to have anyone to talk to about it, not anyone that truly understands anyway. My doctor says as long as I lose some weight I should be able to reverse it and have children someway, God willing and I’m praying that is the case. I have so many questions. I’m breaking out more than I ever have in my life, I used to only have the occasional pimple. My testosterone is high and my mood swings are crazy. I feel bad for my poor husband, he gets the worst of it, I get so enraged sometimes that I can’t even think straight for a few minutes, and then I come down from it and I’m exhausted, I’m actually PHYSICALLY (and emotionally) exhausted from being so angry. This never happened to me before. Does this happen to anyone else? Another question, does anyone have any knowledge of when and why PCOS asserts itself at any given point? I’m 21, 5’10, with a lot of stress due to graduate school, and family and relationship stuff, the “norm”. I could stand to lose a good 40 pounds (5 down yay) but otherwise *knock on wood* I’m healthy. They found a cyst on my ovary a few months ago but I just did another ultrasound and they said it went away, so that’s good. But I’m just wondering what made my period come to a screeching halt a few months ago, what made the cyst form a few months ago, was it stress? In other words, If I’ve had this (biologically speaking) all my life, what made it manifest now? Thanks for any responses, I could really REALLY use some support.
Hey Jessica,
I unfortunately cannot answer your questions as I am quite new to this topic too but I wanted to tell you that you are not alone. I am 22 years old and because of uni I’m stressed out a lot lately. My symptoms were: extremley fast weight gain the more I was under stress (especially on my belly where I wouldn’t normally put weight on), no weight loss although I never had problems losing weight before this, being depressed and angry all the time to the extend that my family started noticing changes in my behaviour, growing hair in places were it shouldn’t grow and missing my period for over half a year. So yes, I have also experienced changes in my mood. I have read that stress can worsen the symptoms of PCOS so I hope my mood swings will get better, the more I understand about PCOS and the first anger goes away.
I also feel alone because nobody really understands me (sometimes I don’t either) so I hope I could in some way help you by replying.
Good luck with your PCOS!
Hi Ina, thank you so much for your supportive response, it really was helpful and made me feel like I’m not alone. I’m sorry I took so long to answer, to be completely honest, my Grandmother passed away in the last few months and I have been really sad to the point of depression and haven’t felt much motivation to do anything, much less exercise or be on a diet. But I really have to. I lost and have been able to keep off about 15 pounds thank God, and thanks to the Metformin, but I still have a long way to go, I just need to start up and get back on the bandwagon. Hearing that we suffer from some of the same symptoms made me feel more at ease, (I know that sounds weird, I wish we weren’t suffering from them, I wish no one is), I too especially gained weight right in my belly, whereas if I gained weight before it would kind of like disperse itself and look more equal around my body, now it just lands right on my tummy. I also had no problems losing weight before and now it is more difficult but it might also just be my lack of motivation. I am trying to take it one day at a time and make better choices slowly but surely. I wish you the best of luck with your PCOS and everything else, and I thank you again for your sweet response.
Hi Jessica.
I’m also 21 and was diagnosed a few months ago. I’ve had irregular periods for around 6 years now. I just had my first period in 2 years last month! I’ve been trying so hard to lose weight, managed to lose 2.5 stone since April. Seems like because I’m losing weight my period came back. Hoping I’ll get another one this month.
Just out of curiosity, do you suffer with Acanthosis Nigricans? It’s something I’ve noticed is probably associated with PCOS.
Hope you’re well
Hi Ashleigh, thank you so much for your supportive response! I’m sorry that I took a long time to respond in return, I lost my Grandmother a few months ago and like I mentioned in another comment, there was a lot of stress and obviously sadness from losing my Grandma and I have been pretty depressed lately. On a positive note, congratulations on your impressive weight loss, you go girl! I really have to get back on the bandwagon, I’ve just been feeling a major lack of motivation but it is time to take better care of myself. I am also glad to hear that your period arrived and I hope that they continue to do so. I fortunately do not suffer from Acanthosis Nigricans. I wish you the best of luck with your PCOS and everything else and again, thank you for your response, it really helped!!!!
His all I too was diagnosed with pcos when I was 17 I’m now 26 I have no periods at all don’t be upset when doc tells u you can’t have children I’m really overweight for my body frame used to be bubbly and confident had no treatment at all for pcos and I have a beautiful 2 year old little boy whom I didn’t know I had conceived until I was 5 months pregnant so don’t give up but anxiety etc has really hit me since having my son but he gives me something worth getting out of bed
Hi Jade, thank you for your inspirational and supportive response, I really appreciate it. I am so happy thank you were able to have a beautiful baby boy, may God bless him always, and I am going to be praying that I can have my own children someday as well God willing. I wish you the best of luck with your family and your syndrome and thank you again for your response, it was greatly appreciated.
I’m 15 and I haven’t had my period in forever, and it started coming regularly when I was 13. Aside from that, I have other symptoms of POCS. My mom thinks something is up and wants to take me to the doctor. But I’m just scared and don’t know what to do.
You should definitely go ..don’t waste time Bcz if you have pco then u will suffer so plz go be strong I also have pco I’m just 16
Hey Nyla,
I had been diagnostic with PCOS when I was about 10 along with a lot of other problems(lol) I was late in getting my period but they too started to regulate and go crazy again around your age. ( I am 17 now) I was scared and super nervous that something else was really wrong with me. But don’t be so worried! A big part of that is just puberty in general. Don’t get too scared. Some of the irregularity is primarily with your natural surge of hormones that are new to your body. It would be good to check and see with a doctor ( moms know best) to make sure everything is okay and if you could get something to help. Oh!, and a big tip that really helped me was keeping a period tracker. Then you can show it to your doctor with no mistake. Imputing your weight and how you feel when on it can give a lot of clues to your doc. Hope everything works out for you girly!
Nyla, it’s only easy for me to say “don’t even scared” since I know how you’re feeling. I’m 31 and was diagnosed 9 years ago, although I have never had a regular cycle. Talk with your mom, your doctor, or any other woman you feel comfortable with. Don’t hold your anxieties inside. PCOS is very manageable and effects all of us differently.
Hi, I am 15 and I have most of the symptoms mentioned above. I am scared of telling my parents, what if they think I am a freak?
Maya, as a Mom myself, I’m sure that your parents will love you and be so proud of you for having the courage to share your fears with them. If you do have PCOS, the sooner you get a diagnosis and know what you are dealing with, the better.
I loved being able to read this article. I was recently informed I have PCOS. I never knew that the symptoms I experienced have been because of my diagnosis. Ever since I got my first period when I was like 14 it was never normal. I may get it 6 times a year, twice a year, once a year, or recently I had it for 6 months straight, had to have a procedure completed which removed a bunch of built up tissue that had never shed. When I was 16 I was told I would never have kids! This statement killed me. I’m 26 now and still no kids, no pregnancy scares, no nothing. Everyday I always wonder will I ever have kids, have a child is my biggest dream and I’m sure so many of you can also relate to that feeling, but when someone I know becomes pregnant I can’t be happy for them. Something just doesn’t allow me to, and I feel horrible because I don’t want to be that selfish or jealous person, but I cant explain how I feel because they will never know that same feeling! I was curious as to if anyone of you experience any unwanted hair in different areas like your stomach, chest, chin and face!
Thank You
Hi Manda! I am also having hair problems.. losing hair in areas where you want them (thinning/falling hair 🙁 ) but have facial hair. You are definitely not alone!
I’m 18 and in February of this year I got a blood test for PCOS which came back normal even though I believe I have the symptoms. My symptoms I feel have got worse and when I went back to get tested in June of this year I was told I didn’t have it so I don’t need tested for it. It’s on my mind every day and I fear I will never be able to have children. I’m at a complete loss at what to do and have no one to talk to about it as my mum believes as my bloods came back normal I obviously don’t have it.I live in the UK and feel there is hardly any advice or services available to me. I suffer from facial hair, anxiety, weight gain although I am still a healthy weight for my height, irregular periods and am on medication for acne
Do not fear infertility. Eat the best you can and exercise as best you can. Surround yourself with positive people who acknowledge your symptoms regardless of a blood test. There are many fertility treatments these days. It may be a struggle…but when the time is right you can deal with it. Good luck and best to you..
Hi Abigail. Sorry in advance for any mistake since I am not an English native speaker 🙂
My story is very similar to yours, I have all the symptoms but I am not overweight . Some women have weight problems some others don’t, and the same thing with hair or acne. The test I had (the one that actually confirmed that I have PCOS) was an gynecological ultrasound. In the image is very visible if you have PCOS or not, you can see the cysts in the ovary.
I recommend to have the ultrasound, and find a doctor who take this seriously, because one of my greatest problems with doctors is that many of them will tell you is not a big deal and all you need are birth control pills.
Anyway, I just want to tell you that even if you have PCOS, you are not alone and there’s hope. I know is a constant struggle that affects you apperance and selfconfidence but never forget you are beautiful.
Good luck, Abigail
Abigail,
I just found out I have PCOS today. I’ve always had issues but my blood test came back negative as well. I developed a horrendous pain and I insisted that my doctor do an ultrasound to find out what was wrong with me. Turns out it’s PCOS. You should have them get images of your ovaries to be sure.
Have you had an ultrasound done to check to see if you had cysts on your ovaries?
I’m so sorry. I wish I was so insightful at 18. If you believe you have it, do your best to manage the symptoms with diet and vitamins until you are old enough and have enough control to find a doctor that will care and listen to you. I would recommend a Napro doctor if you can find one. And don’t let someone put you on birth control for the next 10 years. That’s what happened to me. Personally it just made things worse. It’s your body. Do everything you can to take care of it. This is the most informative website I’ve ever seen for managing PCOS so you’re on the right track!
Hey. I live in the UK too. My GP did extensive tests just to rule out everything and once she was sure I have PCOS, she started me on birth control pills to get my period going. But the pills made me very emotionally unstable and I told her about it. She was alright with me not taking them as long as I take it atleast 3 times a year ,just to keep my womb healthy. I also got tested for diabetes and am on metformin now. Metformin helps me to get my period as well. So, I think it would be best if you talked to your GP about working out a plan for you. Good luck !
I feel your pain I’ve been to so many doctors and every one kept telling me there is nothing wrong with me and I will grow out of it. Now I’m 28 and finally got diagnosed but the doctor was like since you not ttc there is nothing he could do for me, but there is so much he can do. I hate doctors. Try to find a support group even if it’s an online one it really helps.
The interesting thing about PCOS is that for some women, it is not about cystic ovaries at all. I was diagnosed after the birth of my second child, 14 years ago,and to this day, I have never had cysts on my ovaries. Infertility has not really been an issue for us either as we have 6 children and only need to talk about for me to get pregnant. The downside of being fertile while suffering from what is the leading cause of infertility among women, is the extreme guilt and self-doubt about your diagnosis. I have EVERY other symptom and have had the diagnosis confirmed by 2 OB/GYNs and my primary care physician, but because of my ability to easily conceive, I don’t like to tell people I have PCOS.
Hi everyone I have suffered with pcos for ages now I had a internal scan I keep getting a lot of pain with it and I’m having a mare losing weight no matter what I do, I suffer with depression and severe anxiety. All my doctor says is lose weight wish it was that easy I’ve not ever used medication for this tho if anyone has any good ideas and has anyone ever had there cysts removed as I can’t see no way out nothing helps or works ?the
I’ve been living with pcos for about 6 years now I found that paleo diet works for me to lose weight however I wish I could express the pain felt when washing your hair and you pull out clumps all you want to do it shove them back into your scalp or the pain of waking up every morning and having to shave your chin and neck. The pain of mood swings or ovarian cysts plus the cystical acne
NO BODY understands no matter how many times you explain to them. Just because something worked for someone without pcos does not mean it’ll work for me
It was terrible never understanding when you suffer with the symptoms and no one knows or understands. I have amazing skin care and hair care that has helped a lot but it still shows every now and again and it is so hard
I am 15 years and after half a year of telling my parents I have PCOS, I got diagnosed today. My parents think PCOS is the same thing as kidney stones, she says that I got PCOS because of my mood swings. When in reality my mood swings and depression may be caused by my PCOS. My parents are so not understanding, no one listens to me.
I’m so sorry to hear that, Annette! You should think about taking a Vitamin D supplement (it’s been shown to help with depression in women with PCOS). Also, you could ask your parents to read this article https://www.pcosdietsupport.com/pcos-symptoms/pcos-explained-partner/ It might help?
My family is the same way, especially my dad. One of my big symptoms is my weight, but no one in my family believes me that this is one of the symptoms and that it is a lot harder for me to control my weight than for people without PCOS. My dad has gotten to the point of simply being a jerk and telling me bariatric surgery is the only way to lose weight – he totally doesn’t comprehend that I have to have a special diet to treat PCOS, just like how he has to have one for his diabetes.
I am so sorty. It is very hard for some parents. BUT that is no exvuse. IT is child abuse not to support your health and to make you feel safe. LOOK online. FIND a PCOS expert of women’s care center in your area. I am sorry your parents are being ignorant but there is hope. Make sure you continue to get help for yourself.
Hi guys. Tommorow my results will come out and my doctors fear that besides pcos, im also a type 2 diabetic.. Haha suddenly i feel so doom. I just turned 21 and i realized if it is confirmed i will forever depend on drugs to maintain my life and sugar. I dont know what i will do ?.
You can control a lot of it with diet too. I am being tested for insulin resistance and other hormonal factors so I know what you mean. Some lifestyle changes can help sometimes
Cinnamon is great for controlling and regulating blood sugar! They even sell in pill form.
You don’t have to be on drugs for your type 2 diabetes! Try eating low carb (cutting out the white foods-bread, rice, potatoes) and keeping your TOTAL carbs to under 50g a day. It’s hard in the beginning, but you can do it! If you take care of it now, you most likely won’t need the meds at all. I didn’t take care of it when I had the chance and eat low carb and have to take Metformin ER to keep my blood sugar numbers in the healthy range. A year ago my A1c was 11.4. January it was 5.7. April it was 6.2 and July it was 6.4. I had to get off insulin due to losing my appetite in January due to a different issue but my body is still a lot healthier than it used to be! YOU CAN DO IT!!!!!!
I feel your pain, sweetheart! I was diagnosed with PCOS at 14 and then Type 2 Diabetes the week before I started my freshman year of college. You are not doomed, even if those results come back Type 2. It is an adjustment, but it can be done. Everyone is different, and my way is not the best nor the only way, but with diet & exercise I am down to 1 maintenance medication, it is work, and it takes time, but I beg you, please don’t go in with the feeling of doom, because it will pull you down so quickly. You will be in my thoughts and prayers for sure!
Hi there! I was diagnosed with pcos in 2006 at the age of 20. A year n half later I was diagnosed with type 2 diabetes. Trust me I know the emotions and the struggles. I’ve learned so much about health during these yrs. The diet “Trim Healthy Mama” has been a life saver for me. I’ve lost 35lbs since Jan…..3 months ago my doctor said I could drop all my metformin for my diabetes. I have also been using the triplex from Plexus for a tear now and since then I’ve never skipped a period. I just thought I’d let u know that u don’t necessarily have to use pills the rest of your life. This is what worked for me. All of us are different so try duff things to see what works for u. With your doctor of course…..best wishes to u.
Go back to brown bagging your lunches.
And if at all possible: grow your own vegetables. And do it as pesticide free as possible.
We had tomato plants and more growing up — full on gardens — it was a big thing out here for every yard to have rows and rows of vegetables and flowers — and nobody at all used a pesticide or a bottled fertilizer. Horse manure was the big thing; everybody’s vegetable were big and huge and fantastic.
Plan one healthy big meal and cook it on a Sunday. This way you will have dinner for a whole week.:)
4 years now with pcos and endometriosis. I was losing weight but now my weight is going back up. My loved ones keep saying well try this diet or that one or more this one, or this pill or that pill it’s going to work for you. I knew w they love me but they really don’t understand why I can’t lose weight. I just keep smiling to myself and trying to say everything is fine. Thank God I’m not alone
I know how you feel. I recently got diagnosed with endo, (so now i have PCOS and endometriosis). So right now I’m taking a med to reduce endo that if I can remember correctly it reduces my PCOS because it makes me not get any periods. They “blocked” them. I hope that this treatment works. I have one more month of shots, then an ultrasound and later CLOROMID (or whichever med the dr prescribes to ovulate).
They never will. I keep getting told that weight gain is natural in life (which it is but I refuse to let that be an excuse). Just remember that every body is different, and you have to find what works for you. Even without PCOS that is true.
Right. You are not alone. We just have to continue to encourage one another and do our bests sharing true findings. ?Best wishes!
Hi it’s my first time on this website and I didn’t even realize before that so many other women go through the same things as me! I am 23 years old and have been dealing with pcos for about five years and now that me and my husband want to a have a baby I went to see a fertility specialist and will be starting my treatment soon. I’m just really glad to see all the support here and feel for the first time that I’m not alone in this horrible thing! Sending love and best wishes to all of you!
Consider Napro technologies, it’s a lot cheaper and can result in helping you be over all more fertile and have several children.
So I just recently was told that my transvaginal and pelvic shows that I have possible PCOS. I have been having mood swings that I don’t understand why I’m having them at times. I’m losing my hair, I have severe fatigue, weight gain and it’s so hard to lose it and my periods are just awful. The results said it corellates with PCOS because of all the not normal follicles or cysts whatever they are called that were found on my ovaries. I’m just really upset because it’s a gyno I went to see and she didn’t schedule a follow up or anything to let me know what it means and I asked if my hair loss could be from PCOS and she said normally PCOS doesn’t cause hair loss. I’m really pissed off because it didn’t give me answers or make me feel good and she prescribed me birth control. So I went to my primary Doctor and got a referral for an endocrinologist and I’ll have to wait until next week but I’m hoping they can give me answers. My blood work was all normal but she never tested my glucose/sugar or testosterone levels either. I used to take anti depressants but my doctor took me off of them almost a year ago because I’m not really depressed and I only started them because of some big issues that were happening a few years ago. I told his gyno this and she basically is treating me like I’m crazy now. It makes me so mad because I know something is wrong with me its my body. The symptoms have just gotten so bad to the point I’m going to give up because of the doctors who don’t want to help me. Please if anyone has any advice it would greatly appreciated.
Also I’m 30 and I have one daughter if that matters lol
Don’t give up!! I’m sorry to hear you’re having such a difficult time with your gyno. It sounds like she doesn’t have very much knowledge on PCOS because all the symptoms you explained are typical symptoms of PCOS. I’m currently 29, I was diagnosed about 4 years ago. Through my personal experience with my doctor and gyno I found that neither has enough knowledge on PCOS so it’s been trial and error for me. Tried the birth control and Metformin and both were terrible on my body. I gained 30lbs in 3 months and it took me almost a year to lose it after birth control. The Metformin was too harsh on my stomach. What doctors and gynos should be stressing is the importance of proper nutrition. My biggest advice to you is to eliminate all dairy, try to eat low GI and be active at least 30 min everyday. A combination of weights and cardio. I really want to stress the nutrition part. I always joked around with people and said if I even looked at a chocolate bar I’d gain 5lbs, not too far from the truth. I actually found eating Paleo REALLY helped me, I don’t suggest this for everyone but it’s what worked for me. Having PCOS doesn’t necessarily mean you have Metabolic Syndrome, but there’s a good chance you do if you are overweight. You must eat to stabilize your blood sugar all day long, when you eat high GI or eat bad food your insulin spikes high which causes weight gain and other awful symptoms. For example, I used to eat greek yogurt, shortly after I’d have major bloat and water retention and severe pain in my one ovary. Those side effects were immediate, there’s other side effects that are even worse in the long run. As for the hair loss, I noticed my hair has thinned out a bit but it’s when your testosterone peaks high. With good nutrition and activity you can improve that because your hormones will start to balance out. Don’t give up, there’s many others just like you going through the same thing. Do the research on your own for now and try things such as eliminating dairy, at least until you can find a better gyno. Good luck, keep your chin up.
Hi Amy,
I am so sorry to hear about the roller coaster ride you have been on with your health. I have PCOS and hairloss as well. Please do some research on Natural Bio identical Progesterone Creme. It naturally is derived from Wild Yams. Only try the bio identical not synthetic progesterone. This creme has been a life saver for me, has helped with my insomnia and regulate my mood. Often with PCOS you are low in Progesterone. Progesterone helps to regulate your estrogen and testosterone and often with PCOS you will have low levels of Progesterone which than creates an over abundance of estrogen and testosterone in your body. This overabundance will give you hair loss, insomnia and acne ect. I hope this info will find you and help you on your journey to health.
Sometimes I can’t breathe. I feel sick and violated. I used to be a strong girl. Now I cry all the time. I am seventeen. And I have to take 4 meds for pcos and thyroid. I have to remember to take them even if I forget to breathe. All the things you said they are true. They are so true. I am also a hypochondriac and it doesnt really help. I try o be strong but my mind is a chaos. Last night i discovered how thin my hair has grown and that is a sideeffect ofthe drugs i will have to take for God knows how long. You missed the anxiety attacks. The violent ones that knok the breath out of me. I can’t think. I can’t breathe and its terrifying. But I want to thank you for calming me right now. Thank You. So much.
You’re not alone. I don’t know what is and isn’t a.symptom but I have anxiety attacks sometimes too and sometimes I know all I need is someone to acknowledge it and comfort me.
A lot of women with PCOS struggle with anxiety
absolutely true about anxiety. I’ve had PCOS for 25 or so years and the anxiety is my worst symptom. so glad to have a community who understands.Blessings to all!
I am 26 and have known about my pcos for 9 1/2 years. Diagnosed at 17 I heard the Dr tell me the news and thought “great, I’m doomed to be fat, ugly, and depressed my whole life.” I spiraled into a pretty severe depression and didn’t want to talk to anyone about it. It took me several years to start to research it when I found out someone else I knew had pcos. For years I went it alone. I’m now more than ready to take life into my own hands and seek the support I need to make it through. Thank you for this post, I wish I could have all my friends and family read it to understand me more.
Jamie send them the link! I gave my partner one to read and he said it helped him understand. For years I didn’t realize what my diagnosis meant and wished I had known earlier that I should have been doing something
I knew that i had PCOS before i was diagnosed. My days are so challenging. There are times im depressedabout life in general than theres severe hirtsutism to deal with along with infertility which i gave trying altogether because im older now so my chances are very slim. I just wish i knew than what i know now
I have a question. I have been diagnosed with PCOS, and I admit I avoid my OBGYN because every time I see her she gives me a horrible guilt trip about my weight issues, telling me that I’ll never be able to have children, and that I need to exercise several hours a day just to maintain my current weight. Not even to lose it just to maintain. And tells me she wants me to lose 50lbs by my next visit. Every time. And I leave feeling horrible about myself and crying so I avoid her, and haven’t asked her about my issues.
I went for a couple of years, maybe a little longer, without really having any true periods. Now, it seems like it won’t stop. I have large clots, and if I stop bleeding it’s for less than a week before it’s back. Is this common after years without a period? I know my body must have a lot to get rid of. But it’s been a few months of this and the clots hurt to pass. I don’t know if it’s from the PCOS and things building up over the time of not having a period, or if it’s a different issue and I really would rather not go be made to feel bad at the doctor if it can be attributed to this and ease my worry.
This makes me so sad and mad at the same time. Never go back there, find someone else who knows more about PCOS if at all possible. I would definitely go to a RE or different OBGYN just to make sure this isn’t a bigger problem. No one will care more about your health than you.
My own experience: I have never had a normal period, two months in a row. I started early (11 I think). At 20 I went to my GO (I didn’t know to go to a OBGYN or RE) and she told me I was “too young to be worried about those types of things (infertility)” and her answer was to put me on Metformin (which I had horrible reaction to) without even testing for IR. I was young and didn’t know better but I knew something was wrong.
I had a similar issue. I have very irratic periods but they got heavier. Bleeding heavy for up to 6 weeks consecutively then having a week or 2 off before bleeding again was draining for me so i told my consultant & eventually i was diagnosed with a large polyp which was removed from my womb. since then my periods have been more regular& lighter. Its helped but its not a cure, i still bleed heavy but clots are managable & period regularity is better but still irregular. it may be worth your while being checked for something similar.
I don’t remember the last time I haven’t had a proper period since I’ve been on the pill. And your OBYGN should give you support not guilt. Have you looked into diet? For me when I made a few changes, it helped me a lot
I had the same issue with doctors. I have been through 8. I had to fight to get answers and once i did i was made to feel like crap. My suggestion is getting referred to an endocrinologist(hormone specialist) it was the best decision i ever made. They truly understand what your going through. For years i was always told my options were either fertility treatments or birth control. I went to see an endo and he gave me 5 options i could pick from to treat the pcos. I hope this helps 🙂
How are things working for you? Do you mind letting us know what you tried. Looking for positive insight.
I was having the same blood clot issue. I ended up in the ER. All they did was draw blood and send me home. I ended back in the ER 2 days later. I had lost so much blood in that time, that I almost had to have a transfusion. Instead, they gave me iron pills and megace (it worked, but caused me to have breathing issues). At this point, I did not have a diagnoses. I really still don’t considering I just had a biopsy and D&C last week and I don’t see the dr until Monday, but he’s pretty positive after the blood work I have had that it is PCOS.
What is frustrating for me is, 5 years ago I had an ovarian cyst removed ( it was the size of a grapefruit) and the dr did nothing to follow up or to do a diagnoses. He pretty much removed it and told me to come back in a year for my yearly checkup. So I’ve gone 5 years with issues. I even told him about everything I was going through at the time, and he did nothing. So frustrated. So I know what you’re going through. I would def go to different dr’s until you find one that understands. I have a pretty good dr now who is helping me get through it.
Hey ladies I have a question. I was diagnosed a year ago with pcos but the only blood work my doctor did was when she found out I had pcos. After that she put me on metformin, then went and had the dye ran through my tubes. Took home ovulation test multiple days in a row and it showedboth line’s and the same shade each day. She asked if I ovulated I told her I took home test and it showed I was. But see I had heard that the test can be false when you have pcos. So Ikinda thought she would do another blood test to be sure. Also thought she wwould’ve done a ultrasound to see how bad the cysts were on my ovaries but she never did. Should I asked her to do an ultrasound?
Yes ask for an ultrasound. I had one i also found out that i had 2 small fibroids so yes ask for one tell her your in pain & feel something hard…. 😉
Alysha, I was Diagnosed last Wednesday after having blood work drawn. she said my insulin was to high that I needed to change my diet and eat five meals a day (small) and exercise everyday. she Put me on Metformin and told me that would make me lose weight. she’s my primary care doctor so now im going to my Gyno to get some real answers. IM very Confused and scared about this and the primary did nothing to help me figure out how to treat it.
I would love to an RE specialist for help getting pregnant. Don’t mess around pcos is serious and can cause havoc on your body causing problems getting pregnant. Specialists get out and the earlier and more aggressive intervention the better the results. Best of luck.
*Look* to an RE SPECIALIST
I started my puberty at the age of 8 where all the children are enjoying themselves in school. I have a very bad irregular menses that I can heavily bleed with clots for a month and after stopping one week my heavy bleeding start again. My HB can be as low as 7.1 and also iron deficiency. My family and I have seen all the gynae doctors in Singapore and Malaysia to get me treated. But none of the doctors can give us an answer. My dad broke down in front of the doctor and he begged the doctor to find the causes of the bleeding and give treatment to me . He said he don’t mind to pay as long as I am treated and become cheerful again.Because of the prolonged and massive bleeding I am depressed whenever I stain my clothes and people always give me that disgusted looks. Not only that, I can even fainted. At the age of 24, I finally saw a gynae that diagnosed me as PCOS. I asked him that after consulting so many gynae why none of them can tell me what is going on for that 16 years. He explained that the symptom of PCOS is no menses bleeding at all or every few months then have menses. He said unfortunately my symptom is not same as what he mentioned earlier. Because it is uncommon that PCOS cause a heavy bleeding for a month and it started again after one week of no menses, he started me on Diane 35 to control my males hormones. Last week I just saw the gynae again because of the massive bleeding for two weeks, she done the scan and told me that she can see something in my uterus but because of womb lining is very thick that why can’t see clearly. She said it could be polyps. I have been trying hard to lose weight but I have a very bad craving for sweets. Is that anyone can advice me other than Diane 35 is that any other treatment to be done,
Thank you so much, for everything i’ve just read.
i am currently 20 soon to be 21, and i’ve had pcos since i was 14.
alot of people always say, ” girl, youre so lucky to not have a period” but actually i am not lucky, especially when you go two years without one and when you do have one, it last like 3 days.
when i was diagnosed with pcos, i was never told anything about it and still to this day i really do not know much.
I was reading your post, and it actually helped me understand alot more than i know.
I truly do want a baby one day, but i feel that this is in the way.
Thank you, so much.
I am 26 years old and have been struggeling with PCOS for the last 6 years.
I want to thank you for this post, it realy says alot. And this has become a link that i can send to close friends and family when they no longer “understand”.
Thanks.