PCOS Experiences

I was diagnosed with about 13 years ago after having my son. As the years have gone by, my periods have gotten worse. Extremely heavy, big clots. They used to come and go with months in between, though now they just come and don’t go away. I constantly bleed. My doc said I have a swollen uterus and so it never fully empties out, hence the continued bleeding. I can’t take hormones/bc as I’ve had a bi pulmonary embolism. I’ve had 2 D&C’s. The last one 3 weeks ago and I also had the mirena put in (low dose due to the clots). (I’ve also previously tried metformin with no changes….)Β I don’t know if I’m done having kids (I only have 1) so I’m not ready for the hysterectomy that’s in my near future. Has anyone experienced anything like this? Is there hope? What can I do to delay having hysterectomy until I’m ready?

PCOS experiences
  • That’s so rough! I’m not sure what you can do but have you looked into vitamin or mineral deficiencies? Diet?
  • I’ve recently started taking all the vitamins/minerals I’m low on. I’ve gone gluten free since before Thanksgiving.
  • My personal experience is that I had the rough horrible awful painful periods that would be clots and all, it was ridiculous. When I went low carb (and this was long before I had kids or knew about pcos or anything, it was purely to try to lose weight), I noticed that a lot of hormonal issues resolved. i also tried macca in pill form and vitex and a few vitamins to try to get my hormones back on track coupled with low carb, I noticed my periods were a lot less painful and started to regulate. unfortunately with hormones it takes forever, but once it’s back on track or at least more bearable it’s much much better.

I was going on 18 months without a period when my new gyno finally gave me medicine to start one last month. Today is the first day of the first period I’ve had in YEARS without artificial hormones. I’ve never been so excited to stain my panties.

    • I had very irregular periods. In July I got medicine to bring one on and I’ve had a period every month since πŸ™‚ it’s great to feel normal and to feel like a woman πŸ™‚ Congratulations hun x
    • I know that excitement all too well. I was put on medication in October to bring one on because I had gone 12 months. I have yet to have one on my own. Woohoo for you πŸ™ŒπŸΌ
    • My was the same till I hit my 40s. Now I get my period on the 12th every month with no help from drugs. It is weird how it happens because nothing has changed with my weight or health.

So i have a shopping horror story I want to share.
Background: genetically most of my family is over weight. Genetically my genes defintely arent the best. So even when i was little i was over weight. Now i managed to lose most of the “baby fat” for a while but now i am approaching 30 it is catching back up. I do make a conscious effort to eat health and work but as many of you know with pcosthe weight tends to hang around the middle. I went shopping to find a red dress to wear for valentines day dinner with my boy friend. I tried on at least 35 dresses. And none fit. Or they fit in all the wrong places. I left dressing rooms in tears and my mom who was with me tried cheering me up but unfortunately she is 5’9 and super thin lol so she cant relate. After finding a dress finally i needed to get a bra. The bra store lady basically told me i need to special order my bras because ” they dont make them for girls my size” . Wtf? Have any of you ever expierced horrible shopping trips? How do you raise your self esteem after one? I consider my self a strong woman but that day i wanted to go home and cry.

    • I am a bridesmaid for my best friend in June. When we were at our dress fittings the lady took my measurements and ask how much weight I would be losing between now and the wedding. I was furious.
    • Yeah been there. I have to special order my bras from Lane Bryant. They are slightly uncomfortable but I wear shapewear under all my dresses and sometimes with my jeans. I like the Maidenform Shapewear, Wear Your Own Bra line. I own several to help make things smooth.
    • Can you go to Nordstroms to get a bra? They sell all sizes and are super nice and helpful.
    • I never thought about them actually. I mean my bra size shouldnt be too hard im a 36 DDD. I usually go to Soma for bras… i will check out nordstrom.
    • You aren’t even that big πŸ™ for sure you would find a bra at nordies! I’m the same size as you!
    • I’ll keep them in mind. Thanks for the info!
    • Soma is good. But Nordstrom is the best. They carry bras upwards of U.K. Gg
    • I really wanted to buy some bras from Torrid one day but because of my big self and small boobs (44B) the girl told me that they don’t really carry those in store and to just order online. Oh well
    • Ya. I have the opposite problem. Small band size massive cup size. I can’t shop at torrid for bras either. Or Lane Bryant.
    • I feel for you – but you’re beautiful still! I went in to a shop one day, and the girl who worked there just looked at me and said – without any prior conversation – you’re to fat to wear any of our clothes…
    • I was pissed – she got fired – and I actually could fit something there (but I didn’t buy it!)
    • People are so flippen rude! Glad she got fired.
    • Omg! I cant believe that! Ugh people have no respect!
    • Girl you don’t even look big!
    • I’m about a size 16-18. But all my weight is in the middle. “Plus size ” (i hate that term btw) is awkward because usually its too big at the top. “Misses” sizes fit my boobs but are too tight every where else.
    • There’s no way you would have to special order a bra.
    • Hey…at least you were looking for a dress. I don’t do dresses…..lol

For anyone who seems to be one who forms ovarian cysts (poly fluid kind), What have you found to dissolve or shrink them that worked well? My cyst is 2-3cm and I’m trying to avoid another laparoscopy. My Obgyn will not do any bloodwork to check for hormone imbalance, so it’s frustrating me. I’ve heard to try castor oil packs, Don Quai, cutting out gluten, dairy, and caffeine…What helped you?

    • The bc pill helped
    • Did the Dr share concern regarding it? Is it causing you pain? I’m just confused because I have a hemorrhagic cycst currently that’s 2cmx2cm and my OB said it was within normal limits. Since taking inositol and vitex I haven’t had any issues with cysts. The one I have now my OB deemed it a functional cyst, meaning I ovulated, but I had loads when diagnosed.
    • Get yourself to an endocrinologist.

How do you explain PCOS to your partner?

    • My partner was there when i was dignosed but ive struggled to explain other bits.
    • Just tell him your baby maker like to be bipolar, some days it’s good, and some days it’s bad. It can cause tears, frustration, & many other emotions. But remember God will never give you more than you can handle!
    • You could also do what I did. I let my husband go with me to my OB appointment and I let the doctor explain it to him, and he had his own questions he wanted to ask. It actually helped us both! I feel like he knows what to say when I feel like giving up!
    • How long have you guys been together? As obvious as it may sound all you can do us be honest. Explain what it is and what it means and try and answer any questions they may have. It may take a while for them to process as it not only effects you but them too. I found with my partner he just had a lot of questions and wanted to support me as much as possible.
    • This helped him understand more and open up a comversation about it.
    • As an Endocrinology disorder. Dont focus on the female bits as primary because if you do it makes it hard for people to think of it as more than just bad periods and infertility. They dont understand all the other issues it causes!
    • I told my partner to google it! And then told him what I suffered with as he went through the symptoms! Plus he joined this page so he can see what others including myself go through everyday!

Ladies what do you use for your skin when it’s dry and breaking out? Almost everything I try makes it peel! I’ve been breaking out so bad the last month bc I ended a relationship, and moved. Stress!

    • I use virgin coconut oil as it locks in the moisture after I use an acne scrub.
    • I use baby oil on a cotton pad.
    • I have sensitive skin and I can only use Ponds otherwise I breakout.

I cry because of this . I always say to myself why me😒. I just want to be normal.

  • Be strong girl…
  • Thank you. It’s just like why me.
  • You are not the only one facing this.. But please be strong.. i know you can..
  • You are normal! Us psos women are strong & beautiful.
  • Me too, all the time :c It sucks… it was completely life altering for me.
  • I feel your pain girl I say the same thing but your not the only person there are tons of people dealing with the same thing some worse than others..we are all here to support one another..stay strong you got this.
  • Thanks.
  • You are not alone.. sometimes i also ask myself the same question. But then at the end of the day you will realize there others out there with the same situation. You may be far, but we are at this together.. πŸ™‚ cheer up…
  • I think we all ask that same question.. why me… and I just have to tell myself, I wouldn’t be given this life if I couldn’t face all the challenges. It will make u stronger and more proud of the goals u conquer.
  • I know how you feel.
  • Feeling you girl.

This is the first time I’ve posted in this group…just looking for some advice.

I’m 30 this year and like a lot of the ladies here I have dreams of being a mummy.

My partner wants to wait another 18mths or so to start trying (I’m currently on Yasmin BC). I’m worried about the long path that lies ahead when we start trying and want to start trying now.

Our relationship is really strong and no dramas there. With pcos I just feel a bit anxious about waiting till I’m 31-32 to start trying for our first bub. Just looking for advice if anyone has faced this too?

    • If it helps, my mom almost certainly had pcos, long story short, and had my sister at 32 and me at 35.
    • I was ready before my hubby but didn’t push him. Now he’s fully on board and it feels awesome to know he’s in it 100%. However I under you’re scared and don’t want to take away from that. That’s just my experience but everyone’s relationship is different for sure.
    • I would let him know how with pcos it can take a while and let him know ur concerns with it. Maybe he will want to start early and who knows what will happen.
    • This is my experience, but everyone is different. I had the same mentality. I expected a year of failed TTC before going to OB and needing clomid, etc. We got first month TTC and it stuck. She’s four weeks old today. So I discovered in May that I ovulate just fine despite needing birth control to regulate periods.
    • This is all excellent and positive advice. It’s really the fear of the unknown! He is awesome and has listened about my pcos concerns… I guess it’s so many unknowns. Definitely agree the best thing is to wait till we both feel ready. Can’t help but get a little crazy over all this stuff sometimes!
    • And Brandi that’s so great, congratulations on your little girl!
    • Thanks πŸ™‚ baby dust your way whenever you and your SO decide to start.
    • Yes just because you have pics does not mean problems conceiving. I got pregnant by surprise 2 times. I would voice your concern and see if maybe you can settle in the middle at like 9 months from now. That way if you do get pregnant that month it’s still 18 months from now that bub will be born.

My doctor says an IUD is the way to go and that’s what he wants to do, I haven’t agreed because I kinda don’t want it. Anyone else have it?

    • I have the IUD.
    • If you don’t want it, don’t get it. I’ve had it and got pregnant on it. After miscarrying I kept having pain/pressure in my abdomen. Which didn’t leave until it got removed. I’d never take it again. I had a Mirena.
    • I did the mirana and nexplanon.. It was terrible. Irregular bleeding, cramping/ spasms. I won’t ever do them again.
    • What is IUD?
    • Intrauterine device… Its placed in the cervix releasing constant contraception and hormones.
    • I have the IUD ! I love it ! No problems at all !
    • I have an IUD but it’s non-hormonal. I love not having to worry about if I take my pill late – I had hoped to stop using hormonal BC, but when I stopped taking it my exploded lol. So now I’m a cyborg with a copper IUD still taking birth control πŸ˜› I do love IUD. It burns to get put in because foreign object, and it can trigger bad cramping and bleeding for a month or two, but getting one installed isn’t as scary as it sounds in the end.
    • HAD one. I loved mine.
    • I will never get one. I’ve heard way too many horror stories about it migrating, perforating the uterus, or embedding in the uterus.
    • I love my iud no problems at all.

So despite pcos and a couple of large cysts I’ve always had a normal sex life. However yesterday I experienced extreme pain to where I couldn’t sit down, walk properly, use the bathroom or even just move in general without awful pain.. I’m wondering if it’s endometriosis and I’ve just never experienced major symptoms? Or can rupturing a cyst cause vaginal pain as well? (I’ve ruptured cysts before but it’s never hurt anywhere else but my lower belly)

  • I am not sure of your question… But i do know using Turmeric and detoxing hormones decreased my PCOS drastically , Hope you find the awnser your looking for though.
  • In my personal experience my PCOS has changed as I’ve gotten older. I went to the ER for pain I was having and it didn’t feel like the normal pain I have with PCOS, and I was checked out to find it was a cyst rupture, which I’ve had many times, but this pain was very different. PCOS changes in life. Hope this helps.
  • Thanks ladies. I’m overdue for my yearly so maybe this is my sign to just go in and get it over with. Gotta love PCOS, there’s always something new going wrong.

I feel like giving up.. all I ever hear of people is “it’ll happen when it’s suppose too. You have to be patient” it’s been 18 months.. why does it take medication (btw I haven’t even started yet, I don’t even know if it’s a option..) .. I need to come to the realisation that it may never happen..

  • It will happen. Never give upπŸ’“ medication is an option, but there’s always hope. we will all get our miracle at some pointπŸ˜‡xo
  • 😭😭 I’m having a bad day today and have work in a hour.
  • I’m here if you need a talk!! Bad days are okay, there’s always better days coming! Just gotta keep positive and remember that it’s okay xo.
  • I know your miracle will happen πŸ’• I was feeling just like you yesterday, I know it’s hard try to stay as positive as you can, we will both get our miracle babies πŸ’• I just got diagnosed a couple days ago and I’m still struggling with hearing that I have this, I’m trying to take it one day at a time, we will start ttc soon, I’m just trying to stay as positive as I can.
  • Yeah that’s me, my partners so reassuring he tells me if we can’t have one then we’ll go travelling & have the nice things in life & my response is we can have all that with a baby but he’s trying to just make me feel better πŸ’• hope you get your baby real soon xx
  • My husband and I had been trying for nearly 4.5 years. Finally, I looked at him and told him I couldn’t do this any more and I just wanted to focus on school. (Doctorate) that was end of nov 2014. St pattys day 2015 I got pregnant. Dec 2015 I had my baby girl. My point is… I sat where you have. It will happen πŸ’œ
  • That’s so amazing xxx
  • It took me over 10 yrs
  • 18 months May seem like forever but keep trying and don’t give up
  • Yeah gonna just think of things that distract me from pregnancy like my qualification in my job & then hopefully it’ll just happen.
  • I tried for 18 months and it didn’t happen so I gave up and started the lchf diet (I wasn’t over weight just wanted to lose 10lbs ish and I decided to consentrate on myself and my work and then 6 weeks into this new diet I had my first period is 2 years and then 4 weeks later (now 10 weeks in to my new diet) I found out I was pregnant I had also lost the weight I wanted to lose
    I believe that lchf diet is what helped me get pregnant and I believe that lchf helps regulate our cycles
    I now have two beautiful little girls after being told at 20 I had 0% chance of having children they were both conceived naturally 4 and a half years between them but they are both here healthy and happy
    Don’t lose hope try to focus on something other than trying for a baby and hopefully your dream will come true soon x
  • What’s that diet could u explain x
  • It took me almost 10 years to get pregnant, first time was because I took steroids for a chest infection, second time was naturally. Sadly lost both pregnancies, but if I hadn’t of taken those steroids I wouldn’t of gotten anywhere, especially since I’ve only recently realised that I start the ovulation process as my period is ending. I’m 30 years old, I don’t have any kids, I’ve been in the same relationship for 10 years and I want to make my fiancΓ© a dad so much, but it’s been a really long and slow agonising process.
  • That’s so heartbreaking πŸ’”
  • Keep your head up hun… We all have felt this way. I went through alot of fertility medications, an ectopic and 10.5 years later I finally am getting my miracle. It’s hard to not get depressed about it but you got this!
  • I’m gonna stop thinking about it so much x
  • See an RE asap! (And make sure to get your partner checked too). It’s so hard to try and try and try but there are other things you can do besides FAM. Don’t cut yourself short before you’ve explored all your options.
  • Infertility is sooooo hard but as you can see, we’re all here for you!
  • Something that really helped me is that my husband​ and I started saving money for a big European trip. Our goal was $10k. When I felt really bad, I’d work on planning our trip. If we saved to 10k before getting pregnant, we’d go on our trip. if we got pregnant we’d use the savings to pay for our baby’s birth. We ended up with our little miracle a few months after we started seeing an RE (after months of working with 3 different obs).

What’s the longest you’ve gone without your period with PCOS?
So far I’m on about month 10 :/ I have never gone this long before, it’s always been irregular, but only by a month or so. My doctor had me do an ultrasound, and hormone tests, and the hormone tests came back normal I believe. On the ultrasound the tech of course said that my ovaries look polycystic (I’ve known that for Atleast 7 years now, I don’t think that will change) but 10 months… should I be scared?

  • I didn’t get mine for 8 months I then got it because I had an ectopic, then four weeks later I got it again.
  • Ow wow… interesting…
  • Before that I bled for 3 months straight so it went from one extreme to the other.
  • :/ it’s always extremes! I had extremely heavy periods and then bam nothing.
  • Yeh i was the same I went on progesterone only bc and it stopped them and it never came back.
  • That’s really good to know as well, thank you so much for sharing
  • Following, very similar situation
  • 3.5 years in college
  • Wow… what eventually made you get it?
  • Less stress (I went to a military school) and I got off the BC pills, started natural remedies and cleaned up what I was eating.
  • That’s what I’m noticing is a common thread here, the cleaner eating. I’m not on BC pills, that’s what doctors keep asking me :/
  • Sara avoid if you can!
  • That’s what they are trying to figure out now, there next course of action. I guess depending on the measurement of my uterine lining they may have to do a withdraw bleed? I think that’s what they called or she said put me on birth control which doesn’t completely make sense. I’m going to try and avoid taking the brith control if I fcan!
  • Totally 6 years
  • Wow.. what eventually made it come back?
  • It came after i lost 20 pounds.
  • That’s what doctors are telling me is that it is a combination of being obese and PCOS… so I’m wondering if I lose weigh if it will trigger it to start again… just weird because I’ve been this weight before and I was still getting my periods.. ugh so frustrating!
  • My first period was at 13 then no period until I was 19/20 (6yrs) i lost 20 pounds and period came back. After that period is whenever it feels like. To keep me regular it has to be birth control or Metformin. Now at 42 yrs of age if im not on those 2 medications I spot constantly. This disease is frustrating πŸ˜–
  • 16 months. Drinking tea daily helped me get my period back.
  • That is interesting… Any tea in particular?
  • 16 months.
  • Wow… what made it come back?
  • 7 years also and then comes back very very aggressive periods stops for some months then back again nightmare.
  • Oh no Tracy I’m sorry πŸ™
  • Its a horrible thing to live but we struggle by x
  • Oh well… except once but it was more like spotting.. I got so excited I put a Tampon in the minute I saw blood and then of course nothing else happened
  • 3/4 years
  • 2&1/2 yrs
  • Almost 2 years


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