Living with PCOS Watch

Abby_W31
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I've had a look and can't find much advice for people worried about Polycystic Ovaries. I know that some people find it hard to talk to family about these sorts of things, so I would be more than happy to share my experiences and give what advice I can on living with PCOS, symptoms, and what can be done to treat it.

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Abby_W31
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rachel.h
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PandaWho
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(Original post by Abby_W31)
I've had a look and can't find much advice for people worried about Polycystic Ovaries. I know that some people find it hard to talk to family about these sorts of things, so I would be more than happy to share my experiences and give what advice I can on living with PCOS, symptoms, and what can be done to treat it.

I was diagnosed just over a year ago now, and while at times it can be hell, at other times i just get used to it.

Treatment wise its more about managing the individual symptoms, so differs from person to person depending on what symptoms you have and what gets to you the most.


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Anonymous #1
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Hia I'm worried that I have polycystic ovaries as I have irregular periods (like every wish months), excess facial and chest hair and bad acne (even though I have a topical treatment for it). I have an appointment with a doctor next week for something else should I mention my symptoms? Can they treat them if it it PCOS?
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PandaWho
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(Original post by Anonymous)
Hia I'm worried that I have polycystic ovaries as I have irregular periods (like every wish months), excess facial and chest hair and bad acne (even though I have a topical treatment for it). I have an appointment with a doctor next week for something else should I mention my symptoms? Can they treat them if it it PCOS?
It might be worth while making a different appointment as the stuff for PCOS can take up a bit of time with discussing symptoms, family medical history, and a physical examination (feeling your lower abdomen)

But with your symptoms it does sound possible. Each symptom can be managed, i take antibiotics for acne, i use hair removal cream for hairtuism (excess hair) and they tried me on metformin but my body wouldnt accept it, and due to my weight i cant go on the pill.
But generally before treatment starts you will have blood tests and stuff


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Abby_W31
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(Original post by Anonymous)
Hia I'm worried that I have polycystic ovaries as I have irregular periods (like every wish months), excess facial and chest hair and bad acne (even though I have a topical treatment for it). I have an appointment with a doctor next week for something else should I mention my symptoms? Can they treat them if it it PCOS?
Hi, sounds very much like my symptoms, I tried loads of things for my acne but none of it ever really helped. I think it would be worth bringing it up and they might say, make another appointment to talk about it.

I was diagnosed by my symptoms and then a blood test and Ultrasound to confirm. Nothing showed anything overly exaggerated for me though so I'm getting referred to a specialist.

As far as I'm aware, there isn't a cure for PCOS, but like PandaWho said, the symptoms can be managed with creams and using the Pill dependant on your situation. I remember reading that Ovarian drilling can remove the cysts but I can't remember if it helped symptoms or not.

I found the NHS website very useful on the topic if you google PCOS it should be one of the top results!

Always here to help if you want a chat.
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Abby_W31
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(Original post by PandaWho)
I was diagnosed just over a year ago now, and while at times it can be hell, at other times i just get used to it.

Treatment wise its more about managing the individual symptoms, so differs from person to person depending on what symptoms you have and what gets to you the most.


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I think I was about 6 months ago now, I'm on the Pill which seems to have helped acne but is making me extremely moody and hormonal which sucks :/ Think the doctor wants me to change treatment in a few weeks so we shall see if that helps any.
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Anonymous #1
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Hia I have a blood test and pelvic ultrasound for this but I was wondering rem what happens during the pelvic ultrasound? Kinda scared :/
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Abby_W31
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Hia I have a blood test and pelvic ultrasound for this but I was wondering rem what happens during the pelvic ultrasound? Kinda scared :/
Nothing to be scared about They'll ask you to drink about 2 glasses of water an hour before so your bladder is full and they can get a better view of things. What happened for me was that I went into the room, they explained what they would be looking for etc etc. If you are sexually active and happy to do so they may ask to do a vaginal ultrasound but again, you're okay to say no if you don't want to, it's just so they can get a better picture of things that way.

Anyway, I recommend wearing sweatpants or some trousers that are easy to pull down to your hips as they will want to scan the area below your belly button. they'll put some gel on your stomach and run a probe over the area, it doesn't hurt or anything (If I'm honest it tickled a little) the probe transmits images to a screen which the doctor will save and send to your GP or a specialist for analysis. When you're done they'll wipe away the gel and let you go to the toilet to empty your full bladder and then talk you through what happens next. This is wht happened to me anyway, different things might work differently at different hospitals.

You'll probably have a female doctor with you but if it's a male you can always ask if you'd prefer a female.

Best of luck to you
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nutterbutter3005
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Hi i've just noticed this thread! I was diagnosed around 4 years ago, but at the time was basically told that there was nothing they could do and i just had to get on with it. Its since caused serious deprression and social anxiety, as I have so little self confidence due to the excess hair and inability to lose weight. I have been on various diet plans and still the weight doesnt come off. I can't take the pill as I am too overweight! Just feel like I'm stuck and it's starting to really ruin my life and my relationship
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A321
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Heyy

Found this thread at the right time!! Just came from my appointment, consultant thinks I may have PCOS. He said I can have an ultrasound to confirm or start Dianette treatment straight away. I've asked for an ultrasound. However the only treatment options he's given me is Dianette and another pill. I'm not too keen on pills especially after reading how there's a higher risk of clots, strokes, increased appetite and most importantly weight gain! I was on another pill before, not for PCOS, however I ended up putting on alot of weight.

Is anyone taking anything else? Or can recommend other treatments?
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Abby_W31
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(Original post by A321)
Heyy

Found this thread at the right time!! Just came from my appointment, consultant thinks I may have PCOS. He said I can have an ultrasound to confirm or start Dianette treatment straight away. I've asked for an ultrasound. However the only treatment options he's given me is Dianette and another pill. I'm not too keen on pills especially after reading how there's a higher risk of clots, strokes, increased appetite and most importantly weight gain! I was on another pill before, not for PCOS, however I ended up putting on alot of weight.

Is anyone taking anything else? Or can recommend other treatments?

I'm on Dianette, the risk of clots and such is only minimal, like 1 in 10000 or something, I'd have to check the leaflet for the exact numbers. I went for an ultrasound to confirm as my bloods came back pretty average which wasn't what we were expecting, but again, they didn't find much in the way of cysts so I'm obviously an abnormal case or something! My GP wants me to go on another sort of pill but I'm not sure which yes as I need to make an appt to see her.

That's enough about me though, there's various hormone pills you can go on, each doing different things. As far as there being a cure, officially there isn't one... however, I did come across an article about this woman who went through a surgery to have the cysts removed from her ovaries and goes on to claim that this 'cured' her, NHS online claims that the procedure will just reduce symptoms rather than curing it complertely. I really do want to stress though that this is most likely just a coincidence as there is no scientific evidence to prove that this works.
The NHS website has some good information regarding treatment -- http://www.nhs.uk/conditions/polycys...roduction.aspx

I'm sure other people will put in what other treatments they are on, not everyone will have exactly the same treatment, surely?

Good luck
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Anonymous #2
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Hi I'm late to the thread but just found out I have pcos.
Even though I have had problems with my periods since they started-mainly being heavy and sometimes lasting weeks at a time, I didn't think it meant I had pcos. I always thought that was when your periods were absent. Anyway i pushed to be referred for a pelvic scan after having periods that were lasting more than 4 weeks at a time. They found cysts on my ovaries and I then had a blood test which shows I have higher levels of testosterone than normal-does this mean I definitely have pcos- the doctor wasn't very clear. They said most likely I do but because my periods have gone back to being regular again, I don't need to do anything and also as I'm not trying to have kids, its not an issue.

The other symptom I have is very thin hair all over my head, I've lost most of it over the years, very embarassed by it. I was a bit overwhelmed by the appointment and didn't ask whether anything can be done for my hair loss now that it may be related to my hormone levels? Has anyone else experienced hair loss with pcos and found something to help?
How about changing diet/excercise? thank you.
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PandaWho
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(Original post by Anonymous)
Hi I'm late to the thread but just found out I have pcos.
Even though I have had problems with my periods since they started-mainly being heavy and sometimes lasting weeks at a time, I didn't think it meant I had pcos. I always thought that was when your periods were absent. Anyway i pushed to be referred for a pelvic scan after having periods that were lasting more than 4 weeks at a time. They found cysts on my ovaries and I then had a blood test which shows I have higher levels of testosterone than normal-does this mean I definitely have pcos- the doctor wasn't very clear. They said most likely I do but because my periods have gone back to being regular again, I don't need to do anything and also as I'm not trying to have kids, its not an issue.

The other symptom I have is very thin hair all over my head, I've lost most of it over the years, very embarassed by it. I was a bit overwhelmed by the appointment and didn't ask whether anything can be done for my hair loss now that it may be related to my hormone levels? Has anyone else experienced hair loss with pcos and found something to help?
How about changing diet/excercise? thank you.
PCOS generally means you have irregular periods rather than none at all as the cysts prevent ovulation there for the lining of the womb is not shed. Which as i understand is the reason for prolonged periods as the lining of the womb keeps growing until you release and egg, there for WHEN and egg is released theres twice as much lining to shed.

Cysts come and go, so you can have regular periods for months, then all of a sudden miss a period as you have cysts again, and remember you have 2 overies, and both can get cysts.

I have excess facial hair but not not loss of hair!


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(Original post by PandaWho)
PCOS generally means you have irregular periods rather than none at all as the cysts prevent ovulation there for the lining of the womb is not shed. Which as i understand is the reason for prolonged periods as the lining of the womb keeps growing until you release and egg, there for WHEN and egg is released theres twice as much lining to shed.

Cysts come and go, so you can have regular periods for months, then all of a sudden miss a period as you have cysts again, and remember you have 2 overies, and both can get cysts.

I have excess facial hair but not not loss of hair!


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Thanks for your reply, that makes sense. i feel like my GP doesn't really think much of it, they were pretty sure I didnt have it and just had pco and didnt need the blood test, but the sonographer did say something similar to what you did. They said one of my ovaries was slightly enlarged, later results showed I had cysts. But if my periods are regular now does that mean the ovaries are not affected at the moment ?
Hmm I think I might ask another GP next time about my hair. They really don't seem to take it seriously which is disappointing.
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I was sort-of diagnosed with PCOS a couple of years ago; I went to the doctor with irregular periods and excessive facial and body hair (which I've had since I was a child), and she gave an external examination (pressed really hard into my stomach and felt around and said she could feel cysts), and then said she was fairly-positive it was PCOS. Since then I was put on the pill which really helped with the period situation so I didn't ask too much about it.
Several years on, I do wonder if I actually have PCOS. If I'm not on the pill I have no period for a couple of months, and then when I do I can't go 10 minutes without needing to change. As I said I also have always had excessive hair growth. However I've never been overweight-if anything, I'm slightly underweight if not average weight, and I've never had trouble with acne. My doctor has mentioned before that I probably have too much testosterone in my body.
Do you think it's just a testosterone issue, or is it PCOS? Again, I know it's better to ask a medical professional, but I'm not too concerned about the actual diagnosis as long as the symptoms are handled.
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Helenia
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(Original post by Anonymous)
I was sort-of diagnosed with PCOS a couple of years ago; I went to the doctor with irregular periods and excessive facial and body hair (which I've had since I was a child), and she gave an external examination (pressed really hard into my stomach and felt around and said she could feel cysts), and then said she was fairly-positive it was PCOS. Since then I was put on the pill which really helped with the period situation so I didn't ask too much about it.
Several years on, I do wonder if I actually have PCOS. If I'm not on the pill I have no period for a couple of months, and then when I do I can't go 10 minutes without needing to change. As I said I also have always had excessive hair growth. However I've never been overweight-if anything, I'm slightly underweight if not average weight, and I've never had trouble with acne. My doctor has mentioned before that I probably have too much testosterone in my body.
Do you think it's just a testosterone issue, or is it PCOS? Again, I know it's better to ask a medical professional, but I'm not too concerned about the actual diagnosis as long as the symptoms are handled.
High testosterone is one of the findings seen in PCOS. You can't normally feel PCOS cysts from the outside though, so I'm surprised your doctor used that for diagnosis!

You may still have it - you don't have to have all the symptoms to be diagnosed (I have irregular periods, but they aren't painful or heavy, am overweight but lose weight relatively easily when I put my mind to it, and have very polycystic ovaries on ultrasound, but don't have any excessive facial hair or acne). You're right that it's all about symptom management though, for most people.
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Djamy
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(Original post by Abby_W31)
I'm on Dianette, the risk of clots and such is only minimal, like 1 in 10000 or something, I'd have to check the leaflet for the exact numbers. I went for an ultrasound to confirm as my bloods came back pretty average which wasn't what we were expecting, but again, they didn't find much in the way of cysts so I'm obviously an abnormal case or something! My GP wants me to go on another sort of pill but I'm not sure which yes as I need to make an appt to see her.

That's enough about me though, there's various hormone pills you can go on, each doing different things. As far as there being a cure, officially there isn't one... however, I did come across an article about this woman who went through a surgery to have the cysts removed from her ovaries and goes on to claim that this 'cured' her, NHS online claims that the procedure will just reduce symptoms rather than curing it complertely. I really do want to stress though that this is most likely just a coincidence as there is no scientific evidence to prove that this works.
The NHS website has some good information regarding treatment -- http://www.nhs.uk/conditions/polycys...roduction.aspx

I'm sure other people will put in what other treatments they are on, not everyone will have exactly the same treatment, surely?

Good luck
I've been through this surgery, removal of cysts on 1 ovary, 5 times. They continue to come back eventually. It isn't painful, nor a long procedure. When that time comes.e of the month comes, and falls on that ovary, it is painful, irritability, swelling, etc.
At any rate, each time they are removed, everything goes back to normal, bleeding, etc. Until a cyst comes back.
I was put on bc pills to regulate periods however, that stopped working, when my Gynecologist recommended a partial hysto. I went along with it, to find years later, the cysts would still return. Now I'm many years older and in menopause to learn and feel cysts again.
I've thought to have that ovary removed but hesitant, that I may have to be on hormone replacement, or given estrogen.
I'm not rushing into that as I did the partial hysto. At an older age now, it's really horrible, as I believe the cysts are messing with my hormones, just really unbalanced, and I'm considering to go and just have the cysts removed once again. They do interfere and make menopause much more complicated I believe. The hot flashes are horrible all throughout the day.
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