1st Post: Diagnosed a yr ago, no advice or meds from Doc
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miss_smiler84
Posts: 2 Member
Hi All,
I just wanted to see if any of you lovely ladies could give me some advice or tips on PCOS.
I have been suffering from PCOS for over 13years however I was only officially diagnosed a year ago whereby I was just told by my Doctor to loose weight and symptoms may disappear. I had lost 4 stone by this time and still had servere symptoms.
I feel here in the UK the Docs arent really too clued up on PCOS (or maybe its my docs having poor knowledge) and as a result I was left for years feeling I was a hypochondriac, I felt alone in my condition and even though I had tests my doc insisted there wasnt anything wrong. Well low and behold 12years later I was told I had PCOS. I felt relieved even though I knew there wasnt much I could do about it! Or lead to believe there wasnt.
Any other ladies from the UK having this problem?
I wasn't given any meds or given much advice other than to loose more weight! As you ladies may know loosing weight isnt easy when having PCOS so slow and steady progress is what I went for.
I was left going through masses of sites on the internet and reading books but I've quite frankly had enough! As much as gaining as much knowledge about PCOS is needed I feel would love some ACTUAL medical advice instead of reading things that may or may not be true.
I've recently after struggling with depression and anxiety have got myself focused and motivated to nip this well and truly in the bud.
I'm eating better, more fruit, veggies, following a low GI diet and excercising daily.
But I am still struggling. Does anyone have any advice on low/ depressive moods? I have really positive times but just as Im seeing progress I drop back into my depessive/ self distructive ways. I treat myself badly, emotional eat and just ruin all my good work.
Another thing I hate is my facial hair. I have tried everything! literally waxing, shaving, lazor, NO!NO! and creams but I still have thick dark hair. Any advice on what I can do if anything? Or if hair growth reduces over time / more weight loss? I currently taking the pill hoping it would help. I must admit after not being on the pill for 5 years then going back on it I've seen a slight improvement.
Anyway sorry for the HUGE post, thanks for taking the time to read this and if any of you want to add me please feel free :flowerforyou:
Kelly
I just wanted to see if any of you lovely ladies could give me some advice or tips on PCOS.
I have been suffering from PCOS for over 13years however I was only officially diagnosed a year ago whereby I was just told by my Doctor to loose weight and symptoms may disappear. I had lost 4 stone by this time and still had servere symptoms.
I feel here in the UK the Docs arent really too clued up on PCOS (or maybe its my docs having poor knowledge) and as a result I was left for years feeling I was a hypochondriac, I felt alone in my condition and even though I had tests my doc insisted there wasnt anything wrong. Well low and behold 12years later I was told I had PCOS. I felt relieved even though I knew there wasnt much I could do about it! Or lead to believe there wasnt.
Any other ladies from the UK having this problem?
I wasn't given any meds or given much advice other than to loose more weight! As you ladies may know loosing weight isnt easy when having PCOS so slow and steady progress is what I went for.
I was left going through masses of sites on the internet and reading books but I've quite frankly had enough! As much as gaining as much knowledge about PCOS is needed I feel would love some ACTUAL medical advice instead of reading things that may or may not be true.
I've recently after struggling with depression and anxiety have got myself focused and motivated to nip this well and truly in the bud.
I'm eating better, more fruit, veggies, following a low GI diet and excercising daily.
But I am still struggling. Does anyone have any advice on low/ depressive moods? I have really positive times but just as Im seeing progress I drop back into my depessive/ self distructive ways. I treat myself badly, emotional eat and just ruin all my good work.
Another thing I hate is my facial hair. I have tried everything! literally waxing, shaving, lazor, NO!NO! and creams but I still have thick dark hair. Any advice on what I can do if anything? Or if hair growth reduces over time / more weight loss? I currently taking the pill hoping it would help. I must admit after not being on the pill for 5 years then going back on it I've seen a slight improvement.
Anyway sorry for the HUGE post, thanks for taking the time to read this and if any of you want to add me please feel free :flowerforyou:
Kelly
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Replies
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Kelly, First of all, congrats on the weight loss! 4 stone... thats like 56 lbs right?? Keep celebrating the good things that you have done! I am sorry to hear that your doctor doesn't seem to be informed. We have that in the states as well at times.Maybe you should try getting a recommendation for another doctor. Mine was actually a fertility specialist that specialized in PCOS, and I have an OBGYN that specializes in it as well. Sometimes it takes a few tries before finding one who is well versed in PCOS. I luckily found one who was. She tried me on metformin, but it didn't work out well for my stomach. Her next approach was to offer Chlomid, but because my hubby was unemployed at the time we aren't quite ready to go down that road, I mean we are trying, but would rather still see if we can do this naturally. Instead she recommended an over the counter (in the states) vitamin of Inositol. I found it on Amazon for like $20 for a big tub of the powder. I have seen a lot more people talking about it lately too. It has helped me with the migraines I was getting and helping my cycle get on track.
I am also trying to follow clean eating, taking out all of the processed foods, with low carb high protein diet and it has been helping me feel better. I also cut out all caffeine and soda for the last three weeks and I can't believe how much better I am sleeping, which has been helping with my depressive tendencies. I know I will hit a wall again of frustration/depression, and I am trying to formulate a plan of how I am going to deal with it. Though there are a lot of people on the PCOS board on Facebook that get medical marijuana for their depression... I think I would gain weight though if that were legal in my state!
The facial hair, I have no recommendations, being blonde its a little easier, but its still a weekly struggle that I have no answer to.
If you are on Facebook, there are some good groups with constant discussions about what we are going through. I know there are people all over the world on the PCOS - Polycystic Ovarian Syndrome group. There are even some Nurses who have it that are on there with good advice.0 -
Trust me it's not just the Doctors in the UK that have no clue...
In my experience Doctors struggle to even diagnose it let alone have a clue how to treat it. I've done the same as you reading and reading through internet research, weighing it against what else I've read, what I've experienced and what rings true. Do I know everything there is too know, pretty sure I don't, but I do know a whole hell of a lot more than ANY doctor I've personally seen. (How sad is that.)
After seeing a new Doctor who ran new tests and being told I don't have PCOS. I took a copy of my results to see a Naturopathic Doctor. She explained to me why the Doctor (or the lab) couldn't make an accurate diagnose from my blood work. She said that without knowing where you are in your cycle they can't possibly know if your hormones are out of balance.
I've had PCOS symptoms since I was a teen, and presented symptoms way before I got heavy. I'm very certain that weight is a exasperating factor to PCOS but it's not the cause, and therefore CANNOT be a cure. Yes weight loss may help your symptoms but until the root cause is addressed your symptoms won't ever be diminished.
Both my sister and I have PCOS. I've had no luck with any assistance from a medical doctor. And as a result I've been seeing a Naturopathic Doctor. However, my sister has had assistance and reasonable advice from her MD.
My sister's Doctor prescribed Metformin to assist with the Insulin Resistance. And Aldactone (Spironolactone) for the hair issues.
She's had reasonable luck (lost about 20lbs) on the Met over 5 or so months and she's not great about keeping her diet low carb. It's too early to tell about the Aldactone, as she's only been on that a few weeks and it takes anywhere from a month to 3 to start working.. Obviously for prescriptions your doctor has to be on board to receive them.
I'm being treated by my Naturopathic doctor. I'm on two herbal supplements. I'd suspect that you'd be able to get these in the UK, I found them online here in Canada, or you can get them directly from an ND. My ND said that PCOS responds quite well to a naturopathic approach. That they are more able to treat the causes of the issues (hormonal imbalances) in comparison to a pharmaceutical approach. I'm taking 8grams a day of Inositol, and 2 capsules of Testoquench for Women (taper up to 4 for 6 months then taper back to 2). The Inositol is to help with Insulin Resistance , and the Testoquench for Women is to assist with the root cause of your hormonal imbalance. Even to assist with the horrid hair! (And trust me at this point only the bottoms of hands and feet aren't hair y:sad: ) Again it takes several months for the hormonal issues to balance them selves out so I can't report if it helps with the hair? What I can tell you is my weight loss is very typical for a "normal" person at the moment as I'm loosing just over two pounds a week. Lost 18lbs in 2 months. I still eat low carb, however, when on occasion when I've been unable to follow low carb or have chosen not too, I don't seem to have the massive setbacks that I used to experience.
I'm very happy with what I'm taking from the ND in regards to assisting the weight loss battle. I however very seldom "cheat" I'm a long term dieter with roots in an eating disorder so if you are looking to compare apples to apples with my sister we certainly aren't in the same category. I know I need to wait longer to see if the other herbals help with the hair, and I might be interested in the pharmaceutical approach there, since I'm so stupidly hairy.
As for depression and anxiety, these are common issues for PCOS suffers (not sure how well that fact is known.) I used to be on anti-anxiety meds myself, and I still have to be careful in that regard. It makes sense if our hormones are all wacked out that we might have emotional issues. I certainly don't have a do this or that to help with this issue. For me I still have rough days, even weeks some times, but I've been able to keep it contained it to simply a bad day or a bad week. How I've done that is a bit harder to explain. I really worked through a lot of my emotional baggage. I started believing regardless of size or any other factor that I loved myself! As silly and trite as it may seem, it really did work for me. I felt for years I was a failure because I was fat. That I must be weak, and when I couldn't love myself I couldn't accept anyone else's love either. When we feel at fault for this disease we give it power. This isn't my fault and it certainly isn't yours! Do I say that we all sit around fat and accept our "fate?" HeII NO! This is a mountain to climb something we accomplish in spite of the odds!
Best of luck you're doing amazing already!
Angela0 -
Hi Kelly , I can totally relate to everything you are saying. I was diagnosed a few years ago with pcos and got told the same thing as u to lose weight and that was it and advised to come back if I struggle to conceive. I've never been offered any medication or metformin etc that I see a lot of people have been tried on. I get the impression doctors in the uk don't see pcos as a problem unless it stops u conceiving.
Well done on losing all that weight also, Last year I managed to lose 2 stone using my fitness pal n I felt great but as u describe I also suffer from issues with depression and anxiety and I gave up and started comfort eating again piling nearly half of it back on it.
One thing that also knocked my confidence massively was facial hair , people don't realise how much it impacts your life and destroys your confidence! At the end of last year I started electrolysis and although it has been time consuming the results have been amazing and my confidence has improved massively I would definitely recommend it. I was offered laser but I decided not to go for that. A couple of years ago I came off the pill to try for a family and I noticed hair growth got much worse following that so I think that must really make a difference in stopping new hair growth so will certainly be worth a try for u.
Having electrolysis has boosted my confidence and I'm now determined to lose more weight to try and get my pcos under control and hopefully manage to conceive which has brought me back onto my fitness pal. My 30th birthday is fast approaching and am determined to get fit and healthy and stay that way throughout my 30s and start as I mean to go on
would be good to be able to add some people on here in similar position x 0 -
Thank you for your comments ladies I really appreciate it!
I know we all suffer from this in different ways but our emotional effects are really relatable.
Thank you all for going into so much detail, I know PCOS is a complex yet not well know condition I feel a lot better knowing I'm not alone.
I want to congratulate you all on your own personal progress, its a hard and daunting journey but we are all strong and determined women and even if we do have down days, bad days, binge days or the days where we dont like ourself all that much we still find something within ourselves to keep going.
Believe me I have hated myself so much I avoided the mirror or talked to myself like absolute crap! Which is unhealthy I know. Just as Angela said we have to love ourselves. I didnt for a really long time from 2005 till 2011 when I decided I needed to get myself out of the dark hole of depression, I just took one day at a time. Started changing little things like how I look, what I wear or what I ate. I made a little more time for myself like brought myself new clothes instead of treating myself with food, or wore make up. Now I am slightly addicted to buy new products. I also made the decison to go back to University, a huge thing but the best decision I've ever made. As soon as I started treating myself like I do everyone else in my life I felt better.
But I do still have internal battles and talk myself down or out of things but I am getting much better. Helps having such great girlfriends without them I think I'd still be how I was a few years ago.
One thing that effects my confidence as it does for you ladies is my facial hair, Its horrid and embarrassing but I'm trying to focus on other things than letting it get me down.
I just didnt like the way I was left to fend for myself by the Docs. I get that PCOS isnt an easy condition to understand but felt lost and alone. Im glad there are groups like this and people like you to help me understand.
So big thank you 0 -
I'm in the UK and finding that doctors don't even agree on PCOS.
I was diagnosed with PCOS after seeking help with infertility. The first doctor discovered I wasn't actually ovulating, just making lots of follicles that didn't mature.
I was put on metformin, and told to lose weight. I tried Slimming World. Lost over 2 stone. I also had ovarian drilling. Unfortunately it didn't work.
But by the time I got to the stage of my first IVF, the next doctor said metformin was old fashioned, not proven to help, so he took me off it. I had never actually been tested yet for insulin resistance. I gained the weight I'd lost back.
Looking back, it's kind of bonkers they'd just throw this powerful drug at you without proper testing!
Anyway I'm back now and more determined to lose weight than I've ever been.
Seems like the next step is to get checked for insulin resistance and also pre diabetes. Since that is in my family too.
I pluck daily and it's painful, lol. But I had a friend who was transitioning from male to female, and she said electrolysis was the best solution. And she confirmed that plucking won't make your moustache grow back darker. I hope that helps.
Please add me if you like! I'm new to MFP
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As for depression and anxiety, these are common issues for PCOS suffers (not sure how well that fact is known.)
Angela
I have felt so up and down for years and never really realized why until I became more proactive in my health and paid more attention to PCOS and it's impact on my life. The severity of my PCOS at times is very related to the amount of depression and anxiety that I feel.
Recently I have started taking a multivitamin, inositol (insulin), saw palmetto (anti - androgenic), vitamin d3 (PCOS sufferers tend to have low vitamin d), vitex (women's health), and apple cider vinegar (helps the body filter toxins). It has only been about a week so I can't say for sure whether it is causing a major difference, but psychologically I think it has helped me so far. I would like to stay away from prescriptions for as long as possible because I am quite young and would like to try to improve my health independently first with more natural approaches. I think some of this has to do with how my symptoms became so terrible after I stopped taking birth control (and have since been unable to find one that does not make me incredibly moody). I also want to try to balance my hormones so that is a motivation to stay away from birth control which just covers it up for the most part. But from what I have read metformin (insulin I believe) and spironolactone (lessens hair growth I believe) have been the most mentioned medications used in regards to PCOS0 -
But from what I have read metformin (insulin I believe) and spironolactone (lessens hair growth I believe) have been the most mentioned medications used in regards to PCOSAs for depression and anxiety, these are common issues for PCOS suffers (not sure how well that fact is known.)
Angela
Metformin is not insulin. It is a medication that allows your body to use the insulin it already makes. With insulin resistant PCOS or diabetes, your body has no idea what to do with insulin. So you've got all this insulin floating around, you cells dont recognize it and so they ask you to make more, which you do in a repeating cycle until you've got tons of insulin messing up all kinds of things in your body but your cells are still using very little of it for things like nutrient absorption. Metformin is like a bridge between your cells and the insulin so your cells recognize and use the insulin you are already making.
This can help you to avoid diabetes because after awhile your pancreas gives out and quits making insulin which then means your diabetic and need to take insulin. Carbs and to a lesser extent protein causes an insulin response in your body so if you have insulin resistance its is hugely beneficial to lower your carbs so you dont cause that insulin spike your cells cant use. If you go LC/HF it helps your pancreas get a break, not damage itself by making so much insulin and helps you use the insulin you do make. It also drastically lowers the need for insulin.
At least this is how it was explained to me. Some people can handle metformin especially if they get the ER version and some cant. Many can use it just until they lose enough weight and lower their carbs enough they dont need it anymore. Inositol performs many of the same functions as Metformin with fewer side effects but at a higher monetary price. I personally take both because my insulin was WAY out of control but I am going in for a new insulin level tomorrow so I might be able to back off the metformin soon.0 -
I got diagnosed a couple of years ago but had suspected I had PCOS since my late teens. I'd tried telling doctors before that that I had the symptoms but nobody seemed to do anything. I am now 31 and don't feel I have enough support from my doctor because I'm not trying to get pregnant, she's prescribed me a contraceptive pill though so I'll have 'normal' cycles. I've also been diagnosed with type 2 diabetes not long after that but it's not bad enough to need medication for it. Added to that I'm on other medication for my mental health which is well known to have side effects of weight gain. Sometimes I feel like I'm banging my head against a brick wall with this whole weight loss thing! The physical problems make my mental problems worse and vice versa.
I really don't understand why there is so little support for something like PCOS when it can be so complex and impacts on what feels like everything sometimes!! If any of you would like to add me and help motivate each other, share ideas for helping to manage it or just chat/moan etc etc....feel free 0
