PCOS survey, please help me and other sufferers

I meant no for question 1, not yes

1. Not really. When I was 16 I told my docter I had irregular periods. Once every 3/4 months. She told me that it was no problem, if I ever have a problem getting pregnant in the future it mite be something to look at.

Years later, I had a spiral (mirena) placed. The gynacologist told me, oh.. I think you mite have PCOS. Asked me if I had irregular periods and told me I probably had the syndrome. She answered all my questions, but kind of told me to come back when I was planning on getting pregnant. I had to push to get the hormone test. 

So to answer the question; no.. not really full 'support'. 

2. I never use to have exces body hair. But when I stopped taking the pill at about 24 I developed dark thick hair below my belly button and on the inside of my legs. This really made me insecure for a long time. Now I just learn to live with it and wax it when I can. The second worst thing is the fear I won't be able to concieve in the future. I am 27 now and want to start a family in 2 years or so. I am scared I won't be able to get pregnant. 

3. (Mirena) spiral and the pill to lesson my hair growth. 

4. No, periods have always been irregular. Only when I stopped taking the pill, I started becoming more hairy.

5. No.

6. I have been depressed once. But that had to do with circumstances non related to PCOS.

7. No. 

1. No, I have no idea what's going on :-( 

2. No periods and weight problems 

3. I am just on metformin. Was on the pill but felt I had been on it for too long. 

4. Yes

5. Not panic attacks but have suffered with anxiety and anxiety attacks for years

6. Yes but not clinically, I have spouts of both every now and again

7. I havnt myself but my partner seems to think I always get depressed or more anxious around when I'm due to have a period.

I hope this helps. Docters really need to start taking this more seriously and giving us more help, advice and support!. I really don't understand any of it , and sick of going to Docters and coming away still clueless! X x 

1.  No not really, everytime I see my doctor she just says I need to lose weight (i know this, but isn't always easy).  When I found out I had pcos it wasn't really explained to me and I was just advised to go on the pill and that was it.  Think I've learnt more about it from google. 

2.  Excess Hair and fertility problems.

3. I am on Metformin, was on the pill for about a year but been off it for 6 months now as trying to conceive. 

4.  Yes, weight gain, more excess hair and still irregular periods. 

5.  No but very anxious when I leave the house ( don't know if that's related to PCOS or more self esteem )

6.  Yes depression, I am on anti depressants.

7. I haven't noticed.

hope this is helpful! xx 

1. I never have. The rural area where I live has never had adequate enough doctors. I've been to every one in my area and have had no luck. They all treat PCOS like birthcontrol pills are a solve-all solution, but when you're trying to conceive... well, you understand.

2. TWO? Do I have to limit myself? I'm constantly on my period for one. I can't seem to lose more than 30lbs without rebounding to a bigger weight than before even when I continue the diet and exercise regime. I'm always stressed and depressed. ALWAYS. Oh, and did I mention fertility issues already. Yeah, I think I did.

3. No meds. Omega 3 suppliments, iron suppliments.

4. They are continuously getting worse. I started out with a regular cycle. Then, the cycle started regularly skipping one month. Then It skipped more and I barely had a period. Now, I can't get away from my period. It seems to get worse after I let the doctors do what they want.

5. I've had one as a result, but I wouldn't say I suffer from them. Mostly, I just get really easily stressed, hormonal and upset.

6. Yes and yes.

7. I can't even calculate my circle. It's on most of the time and off for mere hours that make no sence and cannot be drawn into any kind of pattern. Therefore, I don't know if it fits a consistency. The depression is caused by stress. I can be fine for a while and flip into a fit the same day within minutes. I feel bipolar sometimes.

1. My Doctor supports me as much as she can but she's admitted herself that there is a lack of knowledge around PCOS so she works with the information that she has but thinks there should be more research into the condition and it's cause. 

2. For me it's mood swings and palpitations which I've been told is a result of my crazy hormones. 

3. 1,500mg of Metformin XR

4. I think since my diagnosis last year they have gotten worse but I don't know if that's down to being more aware of my body and the condition or if it's to do with age. 

5. I suffer from anxiety attacks but I have learnt how to deal with them as well as I can. 

6. I am easily stressed. I wouldn't say I'm depressed but I definitely have those down days where I cry for no reason whatsoever. 

7. I've been trying to track my symptoms and moods more and I am starting to see a somewhat monthly pattern.

Hi.

No I don't feel supported by my doctor at all. I had a baby nearly 9 years ago, I fell pregnant within two months of taking clomid which I am eternally grateful for.

However I have always felt I have just been dismissed by my doctors when I raise other issues which affect me deeply. 

I managed to drop 2 stone and 3 jeans sizes, this was all done by myself, my own research into my diet and exercise. I also believe due to my weight loss my periods have become pretty much regular, I don't think I have missed one in 18 months.  No doctors involvement

The issues I have are acne and excessive hair which just seem to be getting worse and worse, causing me to withdraw into myself and plunging deeper into depression.

I have never been offered any medication or advice for these problems which is a daily battle

It seems you only get help when trying to conceive and feeling less and less like a woman is unimportant.

1. I got officially diagnosed 3 days ago, but got told when I was 15 it was very likely almost certain I had PCOS but the gynaecologist did not want to investigate then as it was 'invasive' in his words not mine, I'm 23 next month. I see my doctor on thursday for treatment and the two doctors have been lovely so far with me feeling so horrible.

2. The excessive hair, weight gain.

3. No, I have the nexplanon implant but im wondering whether they'll take me off it?

4.I know I've had this since I was 15 so yeah, hense why I had an ultrasound.

5. No, not really.

6. Depression, no. Stress, yes. I have days where I want to cry over silly things like not finding a matching shoe ha.

7. Couldn't tell you. My last official period was April 2012 before I went on the injection then switched April 2013 to the implant. Before that I think it was Christmas 2011. Haven't had one for two and a half years.

Not much help haha.

1. No. Before I was diagnosed I knew what I had as my chances were pretty high as my sister has it, the doctor (locum & gyno) laughed and said she doesn't think I need a scan there will be nothing wrong with me however I persisted.. once diagnosed all my gp said to me was you have pcos but can still conceive, I bled for 3 months and still going now it took me 2 month to just get an appointment with my gp, he won't put me on anything yet and is sending me for another scan, I'm so worried about what's happening to me and it's been 2 weeks and still not heard about this scan! I need to see someone I can really talk to and feel like they care.

2. Bleeding & excessive hair.

3. No medication & no pill as was trying to conceive.

4. Yes !

5. No not panic attacks, I feel I suffer with anxiety pretty often.

6. Yes, a lot. I wouldn't go to my doctor though, I try to cope with everything myself unless I need referring for something really serious I'm worried about.

7. No I don't see a pattern, at the moment my cycles are messed up I bleed for a few weeks and then have a few days off :l

Sorry if that was a bit long, I've had a rough few months. I really appreciate what you're doing. I don't think these reproductive conditions are cared for enough or taken seriously enough! No one understands what we actually go through but us and I don't think doctors know enough about these conditions either, instead of learning theory from a textbook, learn from people like us who actually have it. My doctor said Bleeding is not usually a symptom of pcos but I've read up a lot online and loads of people with pcos have what I have I just think it's not as common as irregular bleeding. 

Keep us posted, let us know what happens. xx 

I'm 21 years old. Spent a good 3/4 years being diagnosed and undiagnosed with PCOS to be finally told by a separate GP recently that I actually do have Pcos.

1. Supported by GP

No, my doctors didn't seem to care. When I first went I was young, about 15, not sexually active and they just wanted to shove me on the pill so I would get periods. Then I went back again and was sent for an ultrasound, which while I was told probably do have pcos but results and blood tests came back "inconclusive" was told doing well to keep weight off and told thats it, basically dont have it. Moved GP recently, she looked at my previous notes and diagnosed me there and then. I am already on COCP (Contraceptive pill) for contraception but otherwise no other support offered.

2. Worst Parts of PCOS

Weight struggles and Infertility worries.

3. Medication

Only taking the pill. Started taking this for contraception rather than due to pcos.

4. Symptoms worsened with age

Not that I have noticed but I never used to get periods at all until I started taking the pill so who knows. Have noticed weight gain though.

5. Panic Attacks

No

6. Stress and Depression

Depression yes. Stress yes. Anxiety yes. Low Self Esteem yes. Low Self Worth yes.

7. Noticed a cycle

Not particularly, I feel pretty low most of the time but don't get panic attacks. Find myself more anxious around people, the more people I am around the more lonely I feel. (Low Self Esteem?)

Hope this helps.

Hi. New to the world of Forums. 34 years of age.  Originally diagnosed informally by my GP in 2006, due to excessive hair growth and hot flushes.  Left to just go and look things up online, no talk of being able to manage the condition,  other than seeing a beautician about electrolysis!!.  All I knew about it then was that my symptoms were due to PCOS and that I would likely have trouble conceiving. Experienced pain in my ovaries in 2012 and freaked myself out thinking i had ovarian cancer, given I never had a formal PCOS diagnosis I worried that I had been mis diagnosed   Went to a new GP, who sent me for a US scan and repeat smear. Confirmed PCOS but again no advice other than to lose weight.  I only recently delved into just how specialist a diet should be for PCOS sufferers, diary free, low GI ect. I probably should have paid more attention to it all earlier on but GPs made it feel like it was something i just had to live with so no point reading up about it. 

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

See above!

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

Paranoid about my symptoms, are they PCOS related or something more sinister. ! Its just horrible not knowing what's "normal", especially when "normal for me" changes constantly inc IBS.  I tend to have 10 days period each month with intermitant bleeding in between but recently shifted again.  So will be going the doctors to check out latest symptoms.

3. Are you taking any medication including the pill?

No. A private health assesment suggested seeing a gynaecologist about Metaformin if i cant lose weight in these next 6 months.

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

Yes, but my job has got more stressful and my weight has gone up.  So might be more physical than just age related. 

5. Do you suffer from panic attacks?

No

6. Do you suffer with stress/depression?

Not really

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?

I am still relatively chilled out, I do have a tendancy to have times in the year when I am more easily upset that other points.  I have often but that down to me being over sensitive but after reading around the forums it is likely to  all be part of it.

hi Clare,

 

1. Not really, not much advice or support from my GP. I was referred to a specialist who was great but only saw her twice 

2. Fertility and cravings for high carb foods

3.  Previously on combined pills for 3 year (Ovranette, Femodene and brevinor) just started Zelletta today)

4. More prone to pain in ovaries, but otherwise no.

5. No

6. No

7. N/A

I was always slim. Never had regular periods in my life, when I did have one they were horrendously heavy and painful. First went to my GP about it when I was 16 but they did no investigations and said most likely my age and it would settle down. Went back to GP aged 19 and was diagnosed. Went on the pill after that. My symptoms are irregular periods, tiredness, craving sugar and high carb foods, frequent urination, excessive thirst. Never experienced weight problems or excessive hair. I am a healthy 9 st 6 at 5 ft 3. I have always had an active lifestyle and eat a balanced diet ( aside from having lots of sugar). 

I hope this helps,

Hannah