PCOS UK (Verity)
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30y/o, PCOS, TTC and Anxiety

Morning All!

My husband and I have been TTC for the past 7 months. Over the past 4 months or so, I've developed acne on my jaw line and my hair is noticeably thinner, particularly around my forehead and ears. After zero positive ovulation tests during the 7 months (despite having irregular periods every 38-44 days), we decided to visit a doctor. I had blood tests which all came back normal, however my ultrasound showed plenty of cysts on my ovaries. This together with the other symptoms I've been suffering was enough for the GP to diagnose me with PCOS.

Although I had expected this diagnosis due to the research I had carried out, hearing the words still left me devastated. Everyone around me seems to be getting pregnant so easily! Its left me feeling anxious ever since.

I am slim, fit and healthy. I exercise 3 times a week and I believe I have a balanced diet! I don't understand why this has happened to me and why now. My self esteem has fallen through the floor due to my skin and hair and I feel on the edge of crying most of the time. Then I feel guilty for feeling down... there are so many worse things in life than TTC, a few spots and thin hair!

I am trying to be positive. I did more research which has driven me to change to a dairy free, low GL, sugarless lifestyle (this is a big deal for a chocolate and cheese loving foodie like me!). No improvements so far (And still negative OPKs) but I'm determined to regain control of my body! So I'm going to continue with the diet changes but I'm also looking for advice:

Can anyone recommend anything that worked for them? Can anyone suggest something to help with the anxiety? Does anyone else feel the same way? Can anyone point me to some decent scientific studies on PCOS and factors that can improve it? Has anyone actually got rid of PCOS after a diagnosis?

The GP is going to refer me onwards (once I've had another cycles worth of blood tests), so maybe Clomide will be round the corner.... but who knows how long that will take to get sorted!

Sorry for the rant! :-)

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Hello, I am almost 27 and found out 4 years ago that I have PCOS, I am very similar to you, very slim, healthy and fit and as a result don't fit the general PCOS category. I have done lots of research on the subject, I don't take any hormones at all now. But since since diagnosed with Rheumatoid arthritis in October last year, I had initial steroids, and I'm still taking methotrexate. My hair is now very thin, and I have cystic acne all along my jaw line, the worst it has ever been. I went to see a dermatologist last week, and she recommended spirolactone, a drug to block testosterone levels which can also help PCOS. However I have also been like you researching diets, apparently lots of foods can reduce testosterone naturally, including peppermint tea, I hate taking medication so might give this a go first.

I have heard that clomide is very effective. I have been to see a Gyne a few times, although I'm not trying to conceive at the moment, they always say there are lots of options. Please try not to worry as it will make things worse. I know how horrible thinning hair and acne can be, but take each day as is comes no one will notice it as much as you do :)

Stay positive. Let me know how the sugar free diet goes, I have read lots about that too.

Ruby

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im also a slim pcos girl and just as confused as u r. iv tried OC s to control symptoms and they just make my hair fall out although they do control the hirsutism. i would definately eat as healthy as poss and excersise although be careful on building too much muscle mass because i have read that can cause a testosterone spike. i have also heard clomid is effective and i am hoping to try spironolactone soon too.

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I know it probably feels like the end of the world but please try not to think that. I have been getting annoyed at people seemingly getting pregnant at the drop of a hat but one thing has helped, my nan used to say that everyone is different, I hope this helps you, its given me a lot of comfort.

my doctor thinks I've either been making it up or I think I know her job better than she does, which is not the case, I have a lot of respect for the medical profession. So I have had to do completely on my own, using my own research.

I rely on natural supplements. Taking maca root 500mg, which is the lowest available, three times a day helps with most symptoms and agnus castus 1000mg,once a day usually in the evening more or less makes my body ovulate. But I only take these because I did my research.

good luck

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Hi could you tell me what the maca root and Angus cactus is meant to do please?x

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the maca root is meant to help balance hormones and the agnus castus is meant to almost make your body ovulate. I say meant to because there is almost no medical studies in to it. Oh and I also drink quite a few cups of peppermint tea coz that's rumoured to suppress testosterone. Hope that helps

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What dosages would you recommend? X

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probably best to start with the lowest you can find and if you need to you should go up from there

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Have u found taking this has helped. I drink peppermint tea and I'm taking fa and inisitol just wondering if I shud take these too.....can u take too many things thou x

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my cyclees have reduced but I'm not sure if that's natural or not. I am starting to wonder if you can take too many supplements at once. As for the tea, I already drank it,thinking ot was good for my stomach not knowing it could have been helping me in other ways too.

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Ok thanks. Yeah I read ur message and instantly thought shud I get that stuff too but I take.vitamins and this inisitol so u do wonder how many different thungs can/shud u take. I usually drink peppermint tea to debloat so I'm good with that. Thx for it reply xx

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I wanted to do something as my doctor wouldn't or doesn't have the experience to help and I only did this after doing lots of research

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try spearmint tea!! it debloats and has been shown to reduce the effects of testosterone! take 2 cups a day i have read x

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you should be careful with angus cactus of ur LH is high because its affects actually increase LH which could potentially make ur symptoms worse

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I haven't really had any side effects or any symptoms getting worse

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Hi

I wanted to reply to this more to say your not alone. I was diagnosed with pcos when I was 14 I'm Now 33 and trying to conceive. I also am fit and active but unlike my friends who seem to just fall pregnant when they want i have to wait for another period which current are 40 to 60 days apart.

Pcos side affects are rubbish and are unfair. Remember a side effect is mood swings so part of how it feeling is down to your hormones. The best thing that worked for me in terms of balancing me out was the minera coil. I had that removed for getting pregnant and it's thrown me all over the shop. But once you get pregnant and whenever u decide u don't want anymore kids I would recommend going on that.

For trying to conceive if your Dr has diagnosed u with pcos they shud refer u to get help and like the suggestion above u may be prescribed clomid they will also check your partner to ensure he is ok.

I am currently taking lots of vitamins (multis; b complex; vitamin d; zinc) I'm taking folic acid buy I am taking folic acid and innisotol which is a powder. I started taking that about 2 months ago and it's really helped my moods. Also ger ur partner to take multi and zinc. I have a referral to hospital this month and I'm hoping to get something that help as like u I don't know when or if I am ovulating.

I'm laughing at myself typing this cause it message sounds like me. But remember pcos is soo common now and the amount of people having babies with it is high. It's unfair cause we can't just decide to get pregnant and it just happens. Maybe when it does thou we will appreciate it so much more. Also unfortunately in forums about these issue the main people writing are the ones trying who need the outlet. The ones who have been successful are to busy chasing there kids around to message so don't get dis hearted reading all the sad struggles people have had.

I've only been trying 9 months. I can't promise I'll be the same if I'm trying in 2 years. But you read a lot about how it mood can influence things.

Exercise helps pcos so keep that up. The gluten/dairy/sugar free thing I've read up on but I'm not convinced about. My approach is I'm going to specialist later this month and will see what they give me. Acupuncture and reflexology are also meant to help but again I'm keeping all these other things up my sleeve and trying drs first. I've read so many stories about just getting clohmid or metformin and that working that I'm going to trust that first.

Sorry for this long message. I just wanted to say your not alone. Try what works best for you. Pcos affects us all differently unfortunately there is no cure only a way to manage it. I've spent 20 years trying to manage it. Knowing this phase of my life soul be tricky. It's unfair but if the only "illness" we have is pcos were not that unlucky.

Good luck and try to stay positive xxx

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This could have literally been written by me! 30 as well, only diagnosed 10 months ago since coming off the pill as no periods, no ovulation, acne, hair loss on head and hair growth on body. Ultrasound also showed multiple small follicles. However I am thin, have always eaten healthily and now follow gf, df low gi diet. Like you, having had normal periods all my life and no other health issues, I thought ttc would be as easy as it has been for all my friends and family and it has devastated me that it is not and left me feeling angry and bitter a well as very anxious as to whether we will ever have a child. I have so far tried clomid 50mg but no hint of ovulation so dr has now put me on metformin (even though I don't have insulin resistance) and next month will try 100mg. After that he said I can have injectables or ivf. Sorry I can't be more helpful or give you a success story but just so nice to hear from someone in exactly the same boat! X

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Thank you so much Ladies! I can't tell you how reassuring it is to know that others feel the same as I do. I truly appreciate the advice too: I've heard a lot about things like maca and reflexology, so it's good to know others are trying or thinking about taking/doing these. Like you I'm going to try one thing different each cycle and give each change a chance to have an effect!

The TTC is the bit I get most nervous about. But the hair loss is quickly catching up. Especially because my friends and family say I'm being paranoid... I know I'm not! But like you've said, you always notice it more yourself, others probs only see it when you point it out, and even then it might look minimal to an outsider. I've been thinking about getting some extensions... has anyone got any experience with this? I'm aware they can damage your hair more and they are so expensive! But I've been doing my research and found something that might work.... anything to get my confidence back!

I'm so glad I found this forum! There's definitely something therapeutic about talking to others who know exactly where you are coming from and knowing they feel the same. After my down day yesterday, this has cheered me right up, so thankyou to everyone.

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In terms of hair extensions I follow a blogger called amberfillerup on instagram and she has her own hair extensions called barefoot blonde hair, they look really good xx

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Hey everyone , I can only say what happens to me. But it's the worst feeling In the world not being able to have a baby and then every month if u are a little 'late' comin on, getting all nervous, get a test , hope it's too early to read positive , only to start bleeding the next day . My lowest point which sounds bad, is when one of my younger sisters announced she was pregnant with her second baby. I was supposed to b happy for her but sort of felt gutted. So one day after all the sadness and heartache of wanting and wanting, I just gave up. And made up my mind to have fun and start enjoying what is, instead of what might be. after 8 years of full blown stress and feeling I had not reason for a womb, found I was pregnant at the worst possible time( just ended a relationship), when I least expected it . I feel like stress plays a big role. A passion killer even. After 3 years on my own happy with my daughter I got into a new relationship and we were at it like rabbits. Just enjoying each other . I fell pregnant and miscarried. But still grateful for what I had and not wanting to go back to that dark place in my head, a year later got pregnant again , we were so happy , then 2 years later got pregnant again. So PCOS is crazy. I now have 3 kids , i went on juicing fasting and uppd my b6 and folic acid. Everyone is different but my youngest sister is in the same boat and I know her pain tho she hides it. So that's the advise I'm giving her. Look after yourself but live your life . Stress and anxiety do not help ! Sorry for the long post.

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Don't apologise! Yours is a sad but also a happy and successful story! It's blooming lovely to hear the happy endings, gives me inspiration. Thank you x

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PCOS has been a personal war for me. Now after having my children you would think that's it. But it's not. My issue has been my weight and also problems with hair, it's like the hair I should be keeping on my head has decided to distribute its self on the rest of my body . I was at my wits end before finding this forum. But I now realise I'm not alone in the fight.after having my kids I have added weight, which has elevated my other symptoms, and I havnt had a period in 10 months. Also I have pain literally everywhere. So as of tomorrow I've made my mind to bring this weight down. And fight through the pain. I feel like I need to be able to keep up with these little monsters, I waited so long for them. I hope more people come and post here , it's really interesting to hear what everyone is trying. Don't give up, and try to reduce any elevated stress u have Hun. As once u get pregnant , there is a long road ahead and babba won't like that. I would say that, really I wanted to have as many children as I could before the window closed 🙈😂. Sounds really bad but u see now 10 months and no period . Keep posting Hun.😊Tc

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Have u tired the minera coil that really balance my hormones out and helped me lose weight? It doesn't happen instantly but over time it really worked xx

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How are you testing for ovulation - if it is a kit then they are not reliable for pcos ladies. I would look at the fertilityfriends website as this shows how to chart your temperature and what signs to look for to show you are ovulating.

I would also consider reflexology weekly as I am 100% sure that helped me conceive Noah.

Generally low GI is the way to go to control pcos, not sure I would go dairy free as I don't think it is necessary, but if you see improvement then keep going, sugar free yes as this makes the symptoms worse and also white carbs too.

PCOS is hereditary they believe and it comes down both the male and female line, it is not ovary related really, it is only a symptom so the name is misleading. My hubbie and my son are carriers of pcos. There is no cure sadly, but diet helps and also the combined contraceptive pill.

It is extremely rare not to conceive due to pcos. 1/3 of fertility issues are now men so get your partner in good condition too :-) My hubbie had lots of dead and two tailed and he went on the Boots Vit C and zinc tablets and his improved by over 100% in a year so may be worth putting him on that too just as a precaution.

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Hi, I do feel for you, this is a perplexing disease which, as far as I know, can still only be managed not cured. I was diagnosed in my teens, and am now in my fifties. Much less information was known about it then. The first thing to realise is that your body is unique, and it's therefore important to get to know its rhythms and reactions, in order to help you discover what's right for you.

It was only when I married, aged 36 that I really contemplated having children; having been told when young that it would be difficult to do so. It took quite a while for me to fall pregnant, I eventually had a low dose of clomid. Sadly, I lost the first baby. I took a break and six months later fell naturally. I had my first child at 39. It seemed the clomid had given my fertility a bit of a boost overall.

But a bit later it looked like we might be a one-child family, as several more years of trying went by without success. But I wasn't giving up. I started to closely monitor my body and moods - I intuitively felt I kept missing the mark with blood tests determining ovulation. On a hunch I started using ovulation urine stick tests (available in all pharmacists ) in the weeks after a period. My time of ovulation was way out of the Ball park estimated by my doctor. She was very kind and empathetic about my plight and wish to conceive. She agreed to my request to do blood tests more frequently to determine LH/FSH levels. As soon as there was any evidence of a spike, I went straight to the sticks to determine that 48-hour window. It worked, I had my second child at 43.

Not everyone's choice I realise but I started when my fertility was biologically on the decline, so I had that against me too.

However, my point is this, get to know your own body's bio-rhythms, and be pro-active in managing your symptoms. Eat and sleep well, drink plenty of water, exercise, indulge in womanly treats of spas, massages, yoga - anything that works for you to help make you feel good on the inside and reduce stress levels. And never give up on the idea that there is a formula / combination of these and even meds that will work for you, and even help you conceive. Do the research too.

This book is old now - and there is probably much more up to date advice out there - but I found The PCOS Protection Plan by Colette Harris and Theresa Cheung quite helpful.

Good luck ladies. I hope this post has helped in some way.

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Ladies I wanted to update you all after your lovely advice and brilliant reassurances :-).

After 4 months of waiting (and zero periods) I finally received my referal to a fertility clinic nearly 4 weeks ago. The doctor was incredible. She talked me through every stage of my internal scan, explaining that I do have a lot of cysts, but my uterus was in great shape: win! Then came the exciting bit. "Oh Look! Here's a follicle ready to go: you're going to ovulate very very soon!". Wow. Ok. Better get going...

She ended the scan on a sour note. She wasn't happy with fluid she could see around my ovaries and the fact she couldn't see my fallopian tubes properly. She said she was going to refer me on for a tube check to see if they are blocked, in which case she would refer me for IVF. If not, and I didn't conceive this cycle, Clomid.

So I left deflated. PCOS and potentially blocked tubes? Flipping heck. What a downer.

My appointment for my tube check is on Wed. But...

I've been having period like cramps on and off for the past 4 or 5 days. So for some reason i thought I'd do a clear blue test.

It was only blooming positive!!! 1-2 weeks so seriously early days, but I'm so over the moon: can't stop crying! I could kiss that doctor for telling me I'm ovulating! I'm (sorry "we're*) so, insanely lucky.

Fingers crossed everything works out. I'll keep you all updated. I know the risks of something going wrong and I am worried. But i know I can conceive now so I'm staying optimistic for our future regardless.

Oh, and I cancelled the tube check! :-)

Thank you for everything xxx

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