PCOS survey, please help me and other sufferers

I have had pcos since I was 16 was never given and information from my doctor I was told I had it and that was the end ov it I was 19 when I put myself on the implant as that is the only one I can have I had a period for 6 months solid and was advised to have it removed now I am nearly 22 and had a period a week ago well what I think was a period a different doctor told me that if I don't have 2 to 3 periods a year I could get cancer ..... but I have got the depression the anxiety the snap outs the bad moods some days I don't even leave my house I have hair on my face back and bottom I am in pain every day and no matter what I do the doctor won't take me seriously I hAve hit a wall and don't know were to turn anymore xx

1. The doc who diagnosed me retired straight after she was the only one who seemed to know anything and even though it's on my notes other docs don't believe me coz I was diagnosed at 16 even though all tests (and subsequent scans) have been positive.

2. Depression and anxiety (and infertility which increases the depression and anxiety)

3. Combination pill (briefly went on depo injection but got more depressed 5 docs later and the 2 were linked)

4. Apart from the anxiety and depression which came out later in life I show no other symptoms (oh and irregular periods but the pill controls them now) hence Noone believes me.

5. Yes

6. yes

7. I don't really know. I have regular low periods so it's difficult to tell ...I should prob keep a diary.

Are you trying to get something done about the lack of help and advice and knowledge. Obviously the depression is off on one at the mo but I feel so isolated. I don't know 

Sorry

Hope I helped

1. The doc who diagnosed me retired straight after she was the only one who seemed to know anything and even though it's on my notes other docs don't believe me coz I was diagnosed at 16 even though all tests (and subsequent scans) have been positive.

2. Depression and anxiety (and infertility which increases the depression and anxiety)

3. Combination pill (briefly went on depo injection but got more depressed 5 docs later and the 2 were linked)

4. Apart from the anxiety and depression which came out later in life I show no other symptoms (oh and irregular periods but the pill controls them now) hence Noone believes me.

5. Yes

6. yes

7. I don't really know. I have regular low periods so it's difficult to tell ...I should prob keep a diary.

Are you trying to get something done about the lack of help and advice and knowledge. Obviously the depression is off on one at the mo but I feel so isolated. I don't know 

Sorry

Hope I helped

Hello there, I hope that my answers help! Good luck :-)

1. No, I do not. 

2. A. The first would have to be the very drastic psychological issues that have taken place. (Mood swings, stress,anxiety,etc.)

B. For me the next worst is trying to cope with the fact that I am almost guaranteed being unable to have children, and also having to deal with very early premenopause at the age of 28. Not sure which is worse; dealing with all that internally or having pretty much everyone in my life look at me like I'm crazy...(esp when I try explaining fact that I'm going thru the change at my age, they just don't believe it)

3. I am taking over the counter supplement called estroven. Pretty much knocked out hot flashes and mood swings are way more manageable.

4.Absolutely, more severe with time.

5.  Yes.

6.  Yes.

7.  I have noticed a pattern. Seems like week or so before, after and during I'm in much better mood and mind frame. Foot the most part the rest of the time is when opposite occurs. I have very irregular cycles. For the first time ever my last cycle I had the misfortune of having 3 within a single month... 

Again, hope that helps! 

No . Had to fight to get the doctor to do anything to diagnose me in the first place then . Then endless fighting to get anything done regarding fertility . Would d up going in circled with the same scans and getting no further .

The trouble conceiving was hell and suffering depression as a result . 

I was eventually given metformin but only after looking it up myself and harassing the doctor. This made me quite ill a d the doctor was not helpfull

I have noticed some of the symptoms worsening over the years the hair and lack.of periods . 

I would not say the last questions exactly apply to me 

1. No, I was diagnosed with PCOS and haven't heard anything since

2. Weight issues and body hair

3. Not for PCOS

4. Yes (And blood work has shown it's gotten more hectic)

5. Yes

6. Yes

7. Not really my periods are pretty hit and miss so it's hard to tell if there is a pattern

Hope this helps

1. Do you feel you have full support from your doctor?

Yes she is the first one to diagnose me.

2. What two things are the worst part of your PCOS?

Breast pain Periods

3. Are you taking any medication including the pill?

I am on the Pill and she perscribed Chromium

4. Have your symptoms got worse as you've got older?

Just got diagnose I am 27 yes they have.

5. Do you suffer from panic attacks?

I do.

6. Do you suffer with stress/depression?

yes

7. Have you noticed a pattern with questions 5 and 6 where it happens more at a certain part of your cycle? If so, which week/s does this tend to happen?

If I am regular it happens 2 weeks after my periods over. If i am not regular which happens more often than not it can happen for months on end.

1. When origionally diagnosed when I was 21, my Gyne told me to just stay on the pill until I wanted to get pregnant and then we could discuss options. Im now 26 and have been off the pill for a year, now (Acne, weight, irregular periods, hair growth and thinning on head, depression) PCOS symptoms are showing. 

2. Acne and hair growth

3. Just started taking Antagolin (2 days) and considering metformin

4. not sure have been on the pill since 16.

5. no, just major depression since i was 13

6. stress and depression, moody

7. always there but slightly worse week before and during period.

I would love to know if anyone has tried Antagolin or metformin and had any symptoms of PCOS reverse? 

1. I stopped seeing my doctor because they told me my problem was mainly cosmetic and there was nothing they could do to help me.

2. The hair problem is the worst for me! It's so bad... Second would be the extremely painful, heavy and irregular periods.

3. No. I'm not allowed to take any pill due to suffering with migraines. I was tried on one drug for a few weeks, I can't remember the name of it, and was stopped as it didn't help any of my symptoms.

4. I'm 21 and have recently been diagnosed although I have had the symptoms that I do now from the age of about 10. I feel that the symptoms were worse when I was younger because I was extremely depressed about the situation. From what my doctor has said, i think that the more stressed and worried you are, the worse the symptoms get! I was so humiliated about the hair problem mainly that I didn't go and see a doctor until I was 19/20 as I didn't want anyone to know how disgusting I was! Not even my mother.

I think, as I have gotten older, I've accepted my problem, I have got into a good routine of waxing so the hair (although it grows back extremely quickly and always gives me horrendous ingrown hairs) isn't always there and I believe isn't as thick and dark as it used to be!

I am also in a relationship with an amazing man who knows about my situation and doesn't care, he still loves me exactly as I am.

I don't think my periods have changed at all really.

So yes, I believe my main symptom has got slightly better since I first noticed it.

5. I used to suffer from horrendous panic attacks a few years ago. I was in a bad relationship with a bad man who made me feel very insecure and self conscious, especially about my pcos. I think I was extremely depressed although I didn't want to go and see a doctor about it! That was when I used to suffer from panic attacks.

Since the relationship ended however, and since meeting my new partner, I have felt much more positive about my situation and the panic attacks have stopped, although I still have a small anxiety problem which shows itself occasionally.

6. Same as previous question. I am much less stressed about my pcos in recent years due to being in a happy relationship and feeling like I have more control over the hirsutes now. I still have bad days where it feels like it's a never ending battle of waxing and being hairy that really gets me down but on the whole, I'm doing a whole lot better than I was before.

7. My periods are irregular. I do get a period almost every month although they come and go randomly. I have no clue when it's going to start.

Some months I get extremely down and negative about my pcos, it makes me feel very depressed for a few days and then I start a period just after which makes me think it's due to hormones etc. but sometimes I'll have this, sore breasts along with symptoms like cramps which make me believe I'm going to have a period and it never comes, the symptoms settle back down for another few weeks before starting again.

I know I don't have complete pcos because I have no cysts on my ovaries, my problem is a big hormone imbalance but I hope this helps all the same.

HI Claire,

I was diagnosed with PCOS in 2009 when i was 22 and was put on the pill and told they couldnt do anything for me until I tried to have a baby.  I've always been over weight and always found it hard to lose weight but through determination i've lost 3 and a half stone but am currently still 1stone over weight and cant shift it at all even tho i exercise 4 times a week and following a food programme.  I first got my period when i was 10 and it would come and go every few months but was always heavy on very painfull.  The funny thing is my sister also got her period when she was 10 and although she doesnt have PCOS, she is struggling to have a baby at present and even had to cancel her first attempt of IVF because her body didnt react to the medication!  Sorry to waffle on a  bit but thought id give a bit of history before i answered the questions.  I also have endometrosis, in 2010 i had a laparoscopy and they lasered away the cells.  I came off the pill in Sept 2014 and at first my periods were every 5 weeks but now they are ranging from 5 - 7 weeks so its hard to determine if or when i am ovulating as we are trying for a baby.  for the last 8 weeks i have been very down and am finding it hard to see the positives of life!  i'm doing my best to stay positive but its diffitcult when my moods are so eratic and i've little or no energy some days

1. No, my doctor told me to look up this site to get a proper understanding of PCOS even tho we live in Ireland.

2. Waiting for periods, mood swings/depression

3. Off the pill

4. Since stopping the pill I've gotten bad acne, light facial hair and depression

5. no

6. Yes

7.  i feel like the only week that i am myself or normal is the first week after my periods.  Any other time i feel moody, short tempered and have no energy

 

1. Yes I am just sent away with tablets most of the time.

2. Acne and fatigue

3. I was taking different pills and meds but have recently come off as nothing helped and made my acne worse

4. Yes my acne and sleeping have got worse

5. No

6. Yes depression and stress

7. My acne gets worse usually before my cycle however I no longer have periods

Hi

1. Do you feel you have full support from your doctor? Not really, he increased my dosage but have felt helpless and depressed since. Told him and he said it was normal as body adjusting.

2. What two things are the worst part of your PCOS? Feeling of failure to conceive and depression due to metformin.

3. Are you taking any medication including the pill? Metformin only

4. Have your symptoms got worse as you've got older? Yes, more emotional and psychologically troubled

5. Do you suffer from panic attacks? No

6. Do you suffer with stress/depression? Yes extremely.

7. Have you noticed a pattern with questions 5 and 6 where it happens more at a certain part of your cycle? If so, which week/s does this tend to happen?

My cycle is so sporadic it's impossible to know.

1. Do you feel you have full support from your doctor?

No, all doctors I have ignore that I have it. The only one that acknowledge it was the fertility doctor I seen 8 years ago.

2. What two things are the worst part of your PCOS?

Not being able to get pregnant and weight

3. Are you taking any medication including the pill?

Nope

4. Have your symptoms got worse as you've got older?

Mine are getting better. Other than being 30lbs over weight, my symptoms are no period/ovulation. My cycles are still irregular but occure between 30 and 32 days but is a huge improvement from 3 to 9 months apart when I was ttc under the treatment of the fertility dr 8 years ago. (Very curious to why mine are getting better?h

5. Do you suffer from panic attacks?

Getting better as well as I age

6. Do you suffer with stress/depression?

Getting better as well

7. Have you noticed a pattern with questions 5 and 6 where it happens more at a certain part of your cycle? If so, which week/s does this tend to happen?

No pattern

When seeing the fertility doctor, I did years of treatment which included iui and ivf. Like I said the only symptoms I have are no ovulation, irregular periods and over weight...

Hi Clare,

1. Do you feel you have full support from your doctor?

No.

2. What two things are the worst part of your PCOS?

Excess hair mainly on my face (I have monthly laser treatments) and depression/anxiety.

3. Are you taking any medication including the pill?

Was taking Lucette for over 2 months but it make me feel sick and towards the end I started vomiting. I then tried Dianette and that made me feel sick also so after 3 days I stopped. Not on anything now.

4. Have your symptoms got worse as you've got older?

Yes. More excess hair, mood swings, anxiety, panic attacks and depression. I'm almost 26 and was diagnosed at 21.

5. Do you suffer from panic attacks?

Yes. Only when my stress levels are really high.

6. Do you suffer with stress/depression?

Yes.

7. Have you noticed a pattern with questions 5 and 6 where it happens more at a certain part of your cycle? If so, which week/s does this tend to happen?

No pattern. However I do feel more depressed 1-2 weeks before my cycle.

Hope this helps.

J x