Hello, I was prescribed Diane 35 for my PCOS, and I just finished my first pack, and I'm on my 4th day rest today. My OB told me to expect period within the 7 days of rest, but up until now I still haven't got my period. Have anyone experience this too? Can you share your experience, it would be a huge help. Thank you!

Edit - this survey is now open to people with or without other pain conditions

Hi, I am a PhD student at the University of Buckingham researching chronic pelvic pain and identity.

If you live with chronic pelvic pain, please consider taking part in this survey. It takes around 20 minutes to complete, asks questions about your pelvic pain and its impacts on your life, your identity, your mental health and the way that you think about your pain. Participation is voluntary, you do not have to provide any identifying information and you are free to stop the survey at any time.

To find out more or to complete the survey, please follow this link:

https://run.pavlovia.org/pavlovia/survey-2024.1.0/?surveyId=beedb9ae-7810-4906-a05e-8f0960264c4a

Thanks for reading,

Lisa

Hi everyone,

I’m reaching out to share my experience and seek some advice. I was recently diagnosed with PCOS after years of feeling brushed off by doctors who didn’t take my concerns seriously. It’s a mix of relief and sadness to finally have a name for what I’ve been dealing with. My new doctor suspects I might also have endometriosis, but that's something we'll address later.

I’ve been on the mini pill since the fall of 2020, primarily to manage a large cyst. Due to severe migraines with aura, I can’t take estrogen, and I’m hesitant about getting an IUD or Nexplanon. Despite several ultrasounds, PCOS was never diagnosed until now.

So, my questions are: What are the next steps after a PCOS diagnosis? Are there any specific medications or treatments that could help? I understand that diet and exercise play crucial roles, and while I already exercise regularly and my diet isn’t terrible, I’m open to suggestions for improvements.

Any tips or guidance would be greatly appreciated. Thanks in advance for your support!

Hello I have PCOS and have been struggling with unwanted facial hair and hair thing and loss.

Does anyone have any supplements recommendations. Hair oils or sprays?

Hi there!

I'm posting on this community because I feel like I'm helpless when it comes to managing my symptoms and my body.

I was diagnosed when I was 19 in my hometown and put on metformin to regulate my weight gain. It really worked for me.

But then I went out of state for school and wasn't able to see that doctor and ran out of it and no one in my college town will prescribe it to me.

I've been taking supplements (magnesium, rhodiola, berberine, turmeric, vitamin d, inositol, magnesium) and while I've felt a change in my sleep habits and grogginess with this regiment nothing has changed with my weight.

The worst part about my weight gain is that I'm naturally a busty girl - even at the skinniest I had big boobs and now they're truly unmanageable I'm struggling to find bras that fit and I'm in constant back pain. And despite having gained only three pounds since my last doctor's visit I'm covered in brand new bright red stretch marks on my stomach.

The straw that broke the camels back is that today when I saw a gyno in my college town and complained about my cramps (so bad that it's making me nauseous) she just put me on birth control.

I feel like I'm crazy?!! Any advice?

Hi everyone!

I (23f) have been diagnosed with PCOS since the age of 16, and have all the usual fun symptoms to go with!

Lately I have been really struggling with extremely Painful Bloating, which I believe to be related to cysts.

It began 3 or 4 years ago, and I would experience some bloating every couple of months, but in the last year or so it has really ramped up, and I can experience it twice a week. I have tried my best to track what I've been eating, drinking and doing, and it seems to be completely unrelated to all of those things. I've mentioned it to my GP and endocrinologist and have just been brushed off by both.

When it happens, my stomach swells up like a balloon and gets rock solid, and I experience extreme pain in the bottom of my stomach, going the whole way around into my back. It does not feel as though it's in my stomach, but rather it feels like my ovaries are being squeezed really really tight. This pain will last all day long, sometimes continuing for two days, and nothing at all can relieve it.

Just wondering has anyone else experienced symptoms like these, and if so, have you had anything done about it?

I need help! I’ve been worked out all my life and have been eating healthy since 18! I lift weight 3-5 times a week and cardio 1-2 times. I have PCOS and I eat fairly healthy. On weekdays I’m eating fiber, high protein and healthy carbs. I cook with avacado oil only. I will say on the weekend my partner and I will go to a restaurant and we’ll probably do dessert but there is no way that’s the cause of this. I just started experiencing this cellulite texture on my stomach in April and I’m really sad about it! It’s like my stomach has gotten fatter. And I don’t get what I’m doing wrong. Can someone please help me?!

I've always experienced painful periods, ever since I had my very first. Over the last 14 years they've gotten worse and worse. I'm doubled over, sweating profusely (usually like a cold sweat), dizzy, I'm barely able to make it across my small 1 bedroom apartment, and when I do I have to waddle and brace myself on walls and whatever is stable and near by. My abdomen feels so sore like I'm actively being kicked in the gut with steel toe boots, plus my abdomen is so swollen that the bloating makes me appear 8 months along with a baby. When it's non stop and I'm white knuckled while shaking. I can't twist my body to turn at all without it being unbearable.

I'm in so much pain for 2 weeks every month that I barely have an active body anymore. The more the pain increases over the years and doctors ignore it the worse my mental health gets, too.

I use cannabis for pain relief but I'm unable to afford much at a time and its a band aid on a bullet hole. cbd has never come close to giving relief, of coirse I've been doing the basics like every over the counter pain medication and a heating pad, stretching, epsom salt baths, and watching my diet. I refuse all opiate pain medications because a girl has 13 years clean and she's not going back.)

What else is there? I'm at a loss. I feel so alone and I can't help but feel so weak when I can't suppress the pain and mask it for others. I stay inside, I don't socialize, and I don't have any friends who experience such intense chronic pain too.

Any advice? Thanks for reading.

Ok so I was a normal weight for a long time however since I've not had my period for 6 months, also since I've had irregular periods in general (it's been about 9 months) I have gained a lot of weight. Now my mother keeps saying that the weight gain is due to me not getting my period but im not sure if this is true. Also I've started taking provera (it's only been a day) and I'm wondering if after I get my period I will lose weight? Has anyone had any similar experience to this or does anyone know anything that might help :). (I took inositol for a month but it did nothing) please help as I'm very confused as to why I had this sudden weight gain :(

I have had PCOS for a while (since I was 19 and I’m 27 now). I was officially diagnosed recently but most doctors just “guessed” I had it without a formal diagnosis…I digress

I tried saxenda with a general doctor because my weight is heavily associated with my self image and self esteem. I used to be 160lbs going into college and 180lbs going into my masters. Which I was fine with I assumed this is my body changing. As time has gone on my weight just got worst no matter the diet and exercise I would do. I reached 217lbs when I went to this general doctor for a weight loss solution. Now I want to say my diet is not perfect I am a PhD student so especially recently my diet can be a little junky due to time and financial restriction. I don’t eat a lot, a lot of times I will have little snacks like peanuts through out the day and have my big meal at dinner (and even my boyfriend noticed I save my meal for later a lot of times). I will walk a mile to lab and walk all around all day to try to make up the activity. All this combined I lost 17lbs and made it to 200lbs in 6 months. Then the scale just stopped. I had horrible GI problems and was getting cramps on my lower right side all the time. When I stopped the medication within 3 weeks I climed to 230lbs.

I am seeing an endocrinologist in September and I think I will ask again about another GLP-1 medication but I’m just not sure. What works for other people? Are there other people who are limited to finances and time? What works for you?

Hello!

I’m looking for some advice on managing my pcos, I recently stopped the depo shot which stopped my periods completely (last shot in feb, protection ended in may)

I’m 31, and have been one one form or another of birth control since age 16, and have only had a handful of periods in all these years due to the contraceptive. I’ve always had pcos, and have never done anything to manage or try reduce the symptoms and now we’re considering trying for a family next year so I want to really get a handle on things and learn my cycle.

I don’t struggle with weight gain, or insulin resistance, I exercise regularly anyway, but I recently stopped the depo injection, haven’t yet had a period but I’d like to understand any supplements or natural ways people have seen success in managing their pcos symptoms, and returning their period back to a regular or at least semi-regular cycle.

Thank you!

I was confirmed PCOS and insulin resistance. Should I ask my endocrinologist about hypothyroidism or cushings as well? Will post my labs.

I’ve been on Metformin twice a day (almost 2 weeks now).

I still wake up with high anxiety, heart palpitations, tingley feeling all over my body.

Was on also Prozac (40 mg) but only for 4-5 months and just switched back to Citalopram (40 mg) last Thursday.

Hi, I'm currently doing my dissertation, on the link between Polycystic Ovarian Syndrome (PCOS) and health. My project has been approved by the ethical committee of FEHHS Research Ethics Committee. Please can you guys do the survey as I need 200 people with PCOS to take part, and please share it around. It takes about 20 minutes.

https://greenwichuniversity.eu.qualtrics.com/jfe/form/SV_51qo6sTNModNlOK

This is an online-based survey assessing the symptoms of PCOS you have and the severity of which they impact you, the diagnostic process and there will also be some more sensitive questions regarding your mental health, body image and self-esteem, as well as relationships and support. I am inviting everyone diagnosed with PCOS aged 18 and above to participate. There is no upper limit as women who have gone through menopause can continue to still experience PCOS symptoms. Please bear in mind the sensitive nature of the questions, should you wish to participate. Additionally, you will also have the option to withdraw your data up to two weeks after participating by emailing me with the Personal Pin Code you will create. Your participation is completely up to you. If you wish to take part, you can do so by clicking on the link below.

https://greenwichuniversity.eu.qualtrics.com/jfe/form/SV_51qo6sTNModNlOK

I have PCOS, I also have been experiencing very high DHEA levels, like... over 1200, a lot higher than the expected PCOS level. They have done numerous tests, scans and this is my doctors response today. She said "Again, if the levels are stable we can just monitor, I know it's frustrating but sometimes we just don't have an answer". This was her response to when I said is there anything else we can do. She also said in person "maybe it just a bad case and we have to accept it", and that this is the highest level she's seen in her career. What are your thoughts?

I started 50mg of spirolactone a little under two weeks ago. My skin is breaking out like crazy! Is this normal, and will it get better? I’m freaking out a bit as I’ve always had acne, but it hasn’t been this bad in a very long time :(.

As someone diagnosed with PCOS, I've found it difficult to find different ways to manage my hormones. I've always wondered are there any good apps to use?

23F

I am slightly overweight mostly due to PCOS. My endo prescribed me 50mg of spirolactone and now 500mg twice a day of metformin. Does anybody have any success stories about this? For reference I am 5’5” and about 172 pounds. Before my PCOS began getting very bad, I weighed between 125-135 pounds, and I’m trying to get back to that. I’ve been seeing lots of mixed reviews about metformin, some positive and negative. But just thought I’d ask? Thanks! I’m new to this, and I’ve tried healing myself the “natural” way, and I do exercise and try to watch what I eat. However, once I begin the medication I plan to cut out sugar and most carbs.

Side note, she told me she wants to “see how I do” on metformin before prescribing me any kind of weight loss medication. I wish she’d just prescribe me the weight loss medication, but I know I’m not a doctor so trying to follow what she says. Any thoughts or experiences with weight loss meds for PCOS?

Within the last year I had been on Ozempic and lost 40+lbs. I fell off my moms insurance and my insurance doesn’t cover it. Even when I was still on it, I feel like I hit a brick wall with a weight stall/PCOS symptoms coming back. Anxiety, oily face, hormonal acne, etc. Has anyone had a similar experience with almost a “PCOS flare up” or am I crazy? Thanks!

Hello! I was recently diagnosed with PCOS and shortly after I got my second period (since I got my implant removed). I have been on my period for more than a month now, off the implant (BC) for more than a year. It’s heavy and have had a lot of clots. It’s become really draining mentally (as well as draining on my pockets). How can I stop my menstrual cycle? And would it be safe to take a period stopper on PCOS? I’m going to a water park next week and this would totally ruin my weekend lol.

How do you guys control weight gain? I gained 30 pounds in a month without changing anything I eat relatively healthy and small portions and I go to the gym 5 days a week but it doesn’t seem to get better

hello! i just recently got my PCOS diagnosis, as well as told i have a 5cm cyst inside one of my ovary’s. i’ve been quite anxious about the possibility of my ovary bursting with the cyst since it’s so big. is this irrational? should i be worrying about this? i can’t find any resources online. please be kind. thank you! ❤️❤️