PCOS research

[ashlie89]

Hi there, My name is Ashlie and I am studying Human Biology as part of my course at university.

I was just wandering if any PCOS sufferers wanted to share their stories so I can use it as primary research in an essay of mine.

Just a bit about why I am doing this: I was given a choice about what body system I'd like to write about in my essay, so I chose the Endocrine system. Part of this came from when I trained as a beauty therapist a few years ago, I used to get many women with PCOS come in for waxing or epilation treatments and most were TTC, I found most of these stories heart-breaking however the hope that came from these women was very compelling.

To me the endocrine system is a very complex system that I would like to know more about, and a first hand story would be great to help me understand this more.

What I would like to know:

• What you as a sufferer knows about PCOS and the hormones that directly or indirectly cause this?

• What age you found out and weather it was from underlying health problems or from TTC?

• How long you have had PCOS and whether the symptoms of the condition have changed with age? (and what age you were diagnosed)

• Whether pregnancy affected the severity of the symptoms?

• Have you taken any medication which has helped you conceive, or reduce the symptoms?

• And any websites with statistics and really helpful information would be great (preferably medical documents or university research that you may have looked into)

I will need information to reference you in this essay, which will only consist of a first initial and a surname. If you wanted this to be more confidential I can pass you on my email address and/or facebook if you prefer.

Please let me stress this is for educational purposes only and you won't be used in any statistics or surveys!

Kind Regards

Ashlie Hamlyn

P.S. If you are willing to help could you please state weather you are UK or US as I believe the medication and support you are given by the medical services are miles apart! Thanks (Sorry for the essay!)

 

[phoenixrose]

I think this is a great topic for you to look into. I wish I could help but I don't know that I literally fit into your topic. I don't have any classical signs of PCOS as all labs are fine and I have no other symptoms except that I have the "string of pearls" in my ovaries on u/s. So I guess I have polycystic ovaries but not PCOS.

Whenever you are done with your research will the ladies on here be able to read it? I wish you the best of luck.

 

[ashlie89]

I think this is a great topic for you to look into. I wish I could help but I don't know that I literally fit into your topic. I don't have any classical signs of PCOS as all labs are fine and I have no other symptoms except that I have the "string of pearls" in my ovaries on u/s. So I guess I have polycystic ovaries but not PCOS.

Whenever you are done with your research will the ladies on here be able to read it? I wish you the best of luck.

Yes of course! Although some help first will be needed, think I may copy and paste it into another thread as you are the only person that has got back to me :\

 

[StephHastings]

Hello,

I am Stephanie from US, I live in FL and I suffer from PCOS and have been since I was 21 years old. When I was told about this, I was completely devistated as I wanted children so bad later in life. To make my bio short I was 28 yrs old and found out i was Pregnant, and I was on Metformin 1000mg per day. I was never on any type of "fertility" Drugs. I have a beautiful 6yr old little man. I am also TTC my 2nd, and have an appt with the doctor on the 7th. I have tried 3 rounds of clomid and were unsuccessful. Hope this helps, and FYI you are more than welcome to message me should you have any questions. My answers are below.







* What you as a sufferer knows about PCOS and the hormones that directly or indirectly cause this?- Hair growth,irregular periods, Heavy periods.

* What age you found out and weather it was from underlying health problems or from TTC?- I was 21 just doing a normal OBGYN check up.

* How long you have had PCOS and whether the symptoms of the condition have changed with age? (and what age you were diagnosed) I have had PCOS about 12 years and I have the same symptoms, pretty much nothing has changed.

* Whether pregnancy affected the severity of the symptoms?- PCOS does effect pregnancy, however it does not mean you can't have children. There are drugs out there to help with PCOS. I believe I have a mild case of PCOS because my son was conceived just on metformin.

* Have you taken any medication which has helped you conceive, or reduce the symptoms?= Metformin, Clomid

* And any websites with statistics and really helpful information would be great (preferably medical documents or university research that you may have looked into)- Baby Center, Baby & Bump, MED HELP

 

[rosebud_01_99]

hi there, i would be willing to talk about it as well but idont want my actual name used, i have pcos since i was 17 ttc for the last 16yrs but nothing has worked for me, even ivf, either negs or m/c. i can send u detailed answers later. thanks

 

[abrock]

Hi ya! I am 25 years old. I was diagnosed with "Slim" PCOS as soon as I turned 24. I went to the doctor for an annual check up and to check into the fact that it had been a year and I still wasn't pregnant. The doctor ran cd 3 bloodwork to check my hormone levels, followed by a intravaginal ultrasound. I was told I had a "text book" case of PCOS. In order to be diagnosed you must have at least 3 underlying symptoms i.e. cysts on your ovaries, adult acne, weight gain, excessive adrogenous hormones, excessive hair growth, loss of hair, insulin resistance...(I know, I know it sounds really great.ha)
Instead of ovulating each month (where the egg releases), my follicle would instead turn into a cyst. My ovaries had many cysts. Upon hearing that PCOS was confirmed, I was devastated. I was then prescribed Metformin to help regulate my hormones, in turn regulating my cycles. The doctor, as well as myself, thought that this is all it would take to get me pregnant... 6 months later I asked to be put on Clomid. I had high hopes...4 months later the doctor stopped prescribing it to me. I ovulated with Clomid, but am still not pregnant.

In regards to your questions:

What you as a sufferer knows about PCOS and the hormones that directly or indirectly cause this? excessive adrogenous hormones/testosterone caused by your body's inability to process and regulate sugars (diabetic-borderline diabetic)
I personally switched to whole grains as much as possible as well as TRYING to cut out sweets. (very hard when you have a sweet tooth


What age you found out and whether it was from underlying health problems or from TTC? A few weeks after I turned 24. My doctor checked into PCOS after I hit the one year mark of ttc.

How long you have had PCOS and whether the symptoms of the condition have changed with age? (and what age you were diagnosed) I was diagnosed at the age of 24. That was almost 1 year ago. I never really noticed the symptoms before, or I attributed it to other things. I started having issues with my cycle as soon as I stopped birth control.

Have you taken any medication which has helped you conceive, or reduce the symptoms? I have taken Metformin since April 2011 (almost a year) I really think Metformin helps regulate my cycles. I still have INTENSE pain, but my cycles don't last for 2 wks. I took Clomid for 4 months. I produced follicles and ovulated, but still didn't get pregnant.

If you have any other questions just message me.

 

[StephHastings]

Abrock- How many milligrams of metformin were you taking? That also has a great impact on PCOS I am currently on 1500MG and some patients take up to 2500MG which is high, but I conceived my first son just on metformin alone. I also took clomid and I did ovulate but didnt get pregnant.. I just started back on it and it does mess with your stomach, however I will get use to it. I try to take mine with food. I am here if you would like to ever chat

BABY DUST to you!!

 

[fuzzylu]

What you as a sufferer knows about PCOS and the hormones that directly or indirectly cause this? High levels of progesterone in your body and cause a pcos sufferer not to ovulate or irregualy ovulate. also high testosterone can cause excess hair growth. other symptoms can be difficulty maintaing a healthy weight due to insulin production.

What age you found out and weather it was from underlying health problems or from TTC? I was TTC and bloods showed high progesterone so i then had an U/S scan to confirm PCOS. but to be honest i suspected i had pcos from being a teenager as have never had regula cycles and had weight problems despite sticking to diets

How long you have had PCOS and whether the symptoms of the condition have changed with age? (and what age you were diagnosed) I was 25 when diagnosed but had irregula periouds and weight probs since i was a young teen. AF has become longer, more painfull and much more heavy as i have got older. im lucky and do not have hair probs but did stuuggle when ttc.

Whether pregnancy affected the severity of the symptoms? pregnancy was great as i no longer needed to worry about heavy periouds and wasnt constantly worrying when AF would show. ive been on the depo since babies were born so no more af problems but im still overweight.

Have you taken any medication which has helped you conceive, or reduce the symptoms? I had metformin (stopped as making me ill) and clomid to get pregnant. the metformin really helped with weight loss and clomid worked for me

And any websites with statistics and really helpful information would be great (preferably medical documents or university research that you may have looked into)
I looked at loads of research when first diagnosed but cant remember them now as it was 3.5 years ago now. helped me to get my head around it (i tend to research most things tho)

 

[wilbz]

I have been diagnosed since age 29, have always had irregualr heavy periods, been over weight but also find it very difficult to lose weight. I conceived my first daughter with no problems at the age of 23, when she was a year old started ttc again new there was a problem but didn't go to the doctors till I was 28 had all tests done which showed mild pcos was perscribed clomid and conceived on first round and had my second daughter at 30. Husband and I never used any contraception and didn't fall pregnant again assumed I'd need clomid again. My gp perscribed me oralstat ( not sure if thats the spelling) for weight loss. I lost about a stone and fell pregnant. When I do lose weight a little I find my periods become more regular so I think my pcos is affect alot by my weight.

If you need to know anything else please ask

 

[wannabemummyb]

What you as a sufferer knows about PCOS and the hormones that directly or indirectly cause this? Progesterone, testosterene and insulin hormones are not within the normal ranges, resulting in a number of side effects; cysts on the ovaries, hirutism (sp?), weight gain and difficulty loosing weight, insulin resistence (type 2 diabetes), adult acne, skin tags, irregular periods. From the research i have read the "cause" of pcos is not know.
What age you found out and weather it was from underlying health problems or from TTC? 28 (was diagnosed feb 2010), although i suspect i had it prior to going on the pil
How long you have had PCOS and whether the symptoms of the condition have changed with age? (and what age you were diagnosed) 1 year. Symptoms have decreased on loosing weight and low gi diet
Whether pregnancy affected the severity of the symptoms? Not had a sucessful pregnancy yet
Have you taken any medication which has helped you conceive, or reduce the symptoms? Metformin, 1500mg taken as three tablets of 500mg per day. Low gi diet
And any websites with statistics and really helpful information would be great (preferably medical documents or university research that you may have looked into) i have read so much about this condition online that i am unsure where to reference.

I am based in the UK, i was diagnosed after coming off the pill in dec 2009, i had no periods until a really heavy bleed in july 2010 (gp confirmed suspected early miscarriage), GP did numerous blood tests and referred me to have a transvaginal scan, which was indicative of pcos. He put me on the metformin and referred me to a fs. Have had two fs appointments, but they will not provide clomid until i lose 100lbs in total!

My periods did regulate for about 6 months, coming exactly 35 days apart, until sept 2011 when i had a 115 day cycle.

Please pm me if you want to know any more

 

[abrock]

Steph-I am also on 1500mg of Metformin. I am hoping that the Metformin will keep me ovulating since my prescription of Clomid isn't good anymore.
It looks like we are going to be in the 2ww together Keep me posted on your symptoms! I had a positive opk last night. DH and I bd this morning. He works out of state so we didn't get a chance to any time previously this week so I hope I didn't miss the window. I can only wait and see...
I am sending much baby dust your way!

 

[SabrinaKat]

I was diagnosed with PCOS when I was 26 and had been told that I probably couldn't have children very easily; I had the classic symptoms of weight gain, sluggishness, etc., but actually did get pregnant at age 41 (I had been with my OH for years, but 'thought we'd see what happened, and I got pregnant after two months of trying), but sadly had an mc at 7-8wks (August 2009); I went to my GP and began to lose weight (BMI 40! to BMI 29/30), gentle exercise, healthy eating and 1000mg of metformin. My OH and I decided to do IVF and it was discovered that I also had an underactive thyroid, which mirrors some of the PCOS symptoms, and I began to take Eltroxin as well; in May 2011, I did the final bloods for IVF and my thyroid medication was increased. The next month, I became pregnant naturally and continued the metformin at 2000mg until wk20 of my pregnancy; my LO was born (at 36wks due to pre-eclampsia, but up until wk32, my pregnancy was normal, had hypertension for the first time ever at wk32 and was very carefully monitored) earlier this month at my age of 44! So, we were 'trying' again for almost two years after the mc....

I did also chart my cycles from August 2009 to pregnancy in June 2011 and did notice that my cycles ranged from 21 to 44 days, so the metformin, started in September 2010 did help better regulate, e.g. from 25 to 35 days.

I was a student at Oxford when first diagnosed (so UK), but now live in Ireland, however, my pre-IVF work was done at a London hospital, so may be helpful for your research?

Let me know, and best wishes

 

[StephHastings]

Abrock- I just started CD1 today and I am taking 1000mg i backed it down because I just started it back and I think 1500mg is a bit much in the beginning. I need to get my body use to it then move up again. I am hoping that this is all it takes, as I also took clomid and I did ovulate 1 out 3 cycles but it was poorly. Progesterone levels were very low. I am going to see my doctor on the 7th and I believe he said we were going to try the Femara. I will keep you posted I am sending you lots of Baby Dust!!! Keep me posted on your 2WW.

Steph-I am also on 1500mg of Metformin. I am hoping that the Metformin will keep me ovulating since my prescription of Clomid isn't good anymore.
It looks like we are going to be in the 2ww together Keep me posted on your symptoms! I had a positive opk last night. DH and I bd this morning. He works out of state so we didn't get a chance to any time previously this week so I hope I didn't miss the window. I can only wait and see...
I am sending much baby dust your way!