I am trying to see if there might be a link between hormones and development of *lean* PCOS. From a medical standpoint, this question will never be pursued by gynecologists or the pharmaceutical industry because it will call their practice into question. As patients, we should watch out for and learn from each other. I work in the medical field so I might be able to see if there is enough evidence for a real project. Please private message me or respond to this survey, thanks in advance!
From my experience, I have never had PCOS before I went on oral contraceptives (OCP). My periods had always been normal as a teenager with 28 day cycles. When I was 19 I started OCP and once I went off them at age 29, I realized that my cycles were totally wacked (ranging from 12-85 days). No family history of polycystic ovaries. I was also a one-time egg donor at age 25, from which I got hyperstimulated by careless doctors. Before this my ovaries were 100% normal on ultrasound. After this, they were never confirmed as normal. I suspect that the prolonged exposure to hormones led to the polycystic ovaries. I am also NOT insulin resistant.
Here is the survey:
1) What age were you diagnosed with PCOS? Are you insulin resistant? (yes, no, not tested). Any family history of PCOS, infertility, spontaneous abortions/miscarriages?
2) How much did you weigh as a teenager? And after diagnosis?
3) Were your periods ever normal as a teenager? How many days in the cycle? At what age did you develop irregular periods and what is the range of your cycle length (without having to induce a period with progesterone)?
4) If you had prior ultrasounds before developing PCOS, were they normal? At what age did ultrasound first detect polycystic ovaries?
5) Did you ever take birth control pills or had hormone injections/implants? Reason for starting? What brand? For how long?
6) Did you notice any changes in your menstrual cycle after taking the pills? Did the cycles ever go back to normal?
7) Did you ever have acne or hirsutism (excessive hair growth)? At what age did you first notice this?
1) I was dx at 20 year old. I will find out if I have IR on the 20th of this month. My mother developed PCOS at age 30.
2) As a teenager I weighed anywhere between 100-140lbs. After DXis I weighed 110lbs
3) My periods as a teenager were 31 days apart (EXACTLY). I developed irregular periods in Dec 2008 they were 51-95 days without being induced.
4) I had an ultrasound at 16 years old and they noticed a lot of fluid behind my ovaries, but never searched further into it. I was DXed without an U/S.
5) I took:
*Ortho Tricyclin Lo from March 2005-March 2008
-Became Sexually active
-Stoped taking them because of PMDD
*LoEstrin from March 2008-Dec 2008
-Does not cause PMDD
-Stopped taking them because I stopped getting AF completely
6) With Tricyclin... my cycles were normal. With LoEstrin... I stopped having a period completely. My cycles have never returned back to normal. They are a minimum of 51 days now.
7) I never had acne until stopping BCPs. I noticed excessive hair growth at 17 y/o. It has gotten much worse since stopping BCPs.
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Liz, Thin Cyster (20) DH (22)
DX: March 2009
TTC#1Since December 2008
11/15-BFP @ 9dpo 11/16-B/W Confirmed Pregnancy 11/17-Vamps took 8 viles for prenatal testing (my poor vein could only give them 7)
Yorshire Terrier: Mika 1 year.
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1) I was diagnosed at 24 after pushing very hard since no one seemed to want to diagnose me. Yes, I am insulin resistant and on the way to type 2. I have no family history of PCOS.
2) As a teenager I weighed between 99-117 pounds. After diagnoses I fluctuate in the same range.
3) Yes, my periods have always been about 32 days. I have not developed irregular periods however, once stopping birth control (because I have been on and off them three times, it takes about 3 months to return to "normal")
4) I never had an ultrasound.
5) I took OrthoTriCyclen for a year and a half, stopped because of weight gain, then went on OrthoTriCyclenLo for a year and 8 months, then stopped due to scares regarding blood clots, then on Nuvaring for 2 years, then on OrthoTriCYclenLo again for a year.
6)Yes, it takes me 3 months to get back to my 32 days in between cycles.
7) Yes, I have both acne and hirsutism which started when I was 15. Both got better on the pill and then worse when going off.
__________________ Thin Cyster Age: 25 BMI:19 Not TTC
PhD Student in Social, Ethical, Political, and Cultural Thought at Virginia Tech. To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
1. I was diagnosed at age 28. I am not IR and have no family history of PCOS or infertility issues.
2. As a teenager I weighed around 120-130 lbs. Now I weigh around 140 lbs.
3. As a teenager, my periods were irregular but I remember them being between 28-35 days. Now, after going off BCP in the last year, they have been between 34-45 days.
4. I never had an ultrasound.
5. I was on Orthocyclin for a couple of months and didn't like it so I switched to Mircette. I was on Mircette for 8 years.
6. My periods were very regular on BCP but once off the pill it has varied from 34-45 days.
7. Yes, I have both acne and hirsutism which started very recently since I have gone of BCP. I had very little acne and no problems with excess hair when I was a teenager before I went on the pill.
I have been diagnoesd by one endo this year but my new endo thinks I might have adrenal problem due to severe acne and being thin all my life.
no IR,my mom had iregular periods after having me but she has her period exactly 28 days at age 49 now.
my weight fluctuates alot but I've always been thin 45 to 49 kg,I have a lot of stretch marks because of that.
I always had almost normal periods every 32 days,there were time I had episodes of not having AF for 2 months and induced with progesterone but was enough to keep me going for couple of years.
4) If you had prior ultrasounds before developing PCOS, were they normal? At what age did ultrasound first detect polycystic ovaries?
I've done 3 ultra sounds during my teenage years and now at age 26 after developing pcos,all normal no cystic nothing.
I went on diane 35 at age 18 for my acne problem.but I stopped it after 6 months,until last Jan I went on yasmin,alesse and finally diane 35 for 3months,had to stop due to adverse reaction to diane.
oh yeah.my life is a hell .developed cystic acne which I never had,hairloss,excess hair and no periods unless induced by progesterone or using NPC.
its been 9 months fromthe day I stopped Diane 35.nothing is normal I just had my 50 days npc induced AF.
I always had acne since the age of 13,has some hirsutsm not on myface though.but my acne still is one of my main symptoms.
__________________ -------------------------------- 26-Engaged to my DBF To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
Diagnosed in March 09
---------------------- symptoms: Acne mild Hirsutism recent hairloss Iregular menses
---------------- Meds I'm currently On: Accutane Vitex Npc sage tea Licorice tea Ultimate goal: To find a natural solution for my pcos symptoms To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
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1) I was diagnosed at age 28 (just this past September). I am not IR and there is no known history of PCOS in my family.
2) I was probably about 115 lbs as a teenager. I'm 5'7" and I'm anywhere from 120-130 lbs on any given day.
3) Yes my periods were totally normal as a teenager. I went on BCP at age 16 and then even had normal cycles 28 days in length during a 5 month hiatus from BCP in 2006. My cycles starting getting longer after stopping BCP and range anywhere from 28-70 days. My 70 day cycle could have gone longer--I induced it with Provera.
4) My first u/s was to diagnose PCOS. That was this past September.
5) Yup, I was on BCP & Nuvaring. The Nuvaring was really only for the last 2 1/2 years. Prior to that I was on oral BCP for about 10 years.
6) Nope. My cycles were fairly regular (probably not exactly 28 days) prior to BCP.
7) I don't have any excess hair but I've had acne along my jawline that flares up frequently. I'm one oily person, too!
__________________ Me: 28
DH: 30
TTC #1 since 05/09
DX: PCOS without IR 10/09
Symptoms: irregular cycles, cystic ovaries
1) What age were you diagnosed with PCOS? Are you insulin resistant? (yes, no, not tested). Any family history of PCOS, infertility, spontaneous abortions/miscarriages?
---Diagnosed @ age 20. No history of it, though my mother did have to have a hysterectomy after a softball-sized cyst was found and had infertility issues her whole life. I am NOT insulin resistant.
2) How much did you weigh as a teenager? And after diagnosis?
---I weighed about 100 as a teenage but at the time of my diagnosis I only weighed 87lbs. I can attribute that to stress and a shift to vegetarian diet.
3) Were your periods ever normal as a teenager? How many days in the cycle? At what age did you develop irregular periods and what is the range of your cycle length (without having to induce a period with progesterone)?
---As a teenager my cycles were a little longer at about 37 days, but still regular. My cycles went wacky after stopping my second brand of BCP when I was 18 and now they are 3-5 months between periods.
4) If you had prior ultrasounds before developing PCOS, were they normal? At what age did ultrasound first detect polycystic ovaries?
---I had no prior ultrasounds but the 1st one I received at age 20 revealed both ovaries enlarged with cysts
5) Did you ever take birth control pills or had hormone injections/implants? Reason for starting? What brand? For how long?
--- I took Kariva for about 9 months. About a year and half later I took Yaz for 3 or 4 months but it made me absolutely neurotic so I discontinued that. Jump forward about 6 months after that and I took Kariva again for about 6 months. Discontinued and then took Alesse for a week or so just to force myself to have a cycle..
6) Did you notice any changes in your menstrual cycle after taking the pills? Did the cycles ever go back to normal?
---At 1st BCP kept my cycles regular but then they started to get more spaced out, usually about 2 months inbetween while I was still taking them. I never had AF on the days that I took the inactive pills, it was always while I was still taking the active pills. After completely ending all BCP about a year and a half ago, my cycles have stayed irregular
7) Did you ever have acne or hirsutism (excessive hair growth)? At what age did you first notice this?
---none
1) What age were you diagnosed with PCOS? Are you insulin resistant? (yes, no, not tested). Any family history of PCOS, infertility, spontaneous abortions/miscarriages?
Diagnosed at 25, gluc was norm for fasting glucose (but I wasn't tested for hyperinsulinemia and I've heard fasting gluc isn't the best test for IR). One cousin (of many) just told her testosterone was too high but no mention of PCOS (that's for another thread), mother had hysterectomy due to chronic dysplasia, grandma had multiple mc's due to RH factor, history of family diabetes
2) How much did you weigh as a teenager? And after diagnosis?
I weighed about 120-130, ballooned to 160 in a matter of a year or so while on BCP, went on a super strict diet and came down to 130-135 when dx'ed (still maintaining this weight)
3) Were your periods ever normal as a teenager? How many days in the cycle? At what age did you develop irregular periods and what is the range of your cycle length (without having to induce a period with progesterone)?
Always normal periods(28-32 days) as a teen (even when I first started). I had a norm period for about 6 months after going off BCP (which I took for 5+ years), and it has been non existent since July. I have no idea how long my cycle is now
4) If you had prior ultrasounds before developing PCOS, were they normal? At what age did ultrasound first detect polycystic ovaries?
no prior us's, my first cystic us was at 25 when dx'ed
5) Did you ever take birth control pills or had hormone injections/implants? Reason for starting? What brand? For how long?
I took BCP Yasmin for 5+ years, I started solely for birth control purposes
6) Did you notice any changes in your menstrual cycle after taking the pills? Did the cycles ever go back to normal?
Yes, I just went of BCP in Jan of this year. They were about 30 day cycles for 6 months, and then I stopped having them altogether. I haven't had one since July
7) Did you ever have acne or hirsutism (excessive hair growth)? At what age did you first notice this?
I only had the occasional break out as a teen. After going off BCP, my acne started getting progressively worse. It was worse than any point in my life before that, and I developed cystic acne for the first time in my life (like 1-2 new ones a day and they would last for 1-2 weeks or more!) I started Met about 3 weeks ago, and my acne has been much better since
Thanks for starting this thread. I think there is a correlation, but I think you are absolutely right- I don't think it will ever be admitted by pharma or docs! If I knew then what I do now, I would never have started BCP for any period of time! I wanted temporary birth control (that I could control), not a lifetime of battling infertility!
Just a side note, a friend of mine took one round of Depo when she was 25. After the 3 months it was in her system, she started growing a full on beard and never got her regular periods back. She was dx'ed with PCOS shortly after and is now having trouble TTC. She was completely normal with no excess hair for years and years prior to going on depo. What else could it have been?
1) I was late 20's. Was not/am not insulin resistant. No family history.
2) How much did you weigh as a teenager? And after diagnosis?
3) As a teen, my periods were approximately regular, within a given range of being about a month apart. They lasted 7 to 10 days though. Heavy cramping, mood swings, heavy flow. When I started grad school they started getting farther and farther apart. And then stopped. I was also getting tons of yeast infections. I spent about 2 years going to different gynecologists b/c nobody was really doing anything other than handing me a prescription for the yeast infection. And I kept saying there had to be something else going on if I keep getting recurring vaginal yeast infections.
4) No prior ultrasounds.
5) I was never on the pill before being diagnosed with PCOS.
6) When I went on the pill after PCOS, my periods were slightly shorter and lighter flow. Instead of 7 to 10 days, they lasted 5 to 7 days.
7) Yes for acne cysts, mostly on my chin. And yes for hair growth on chin and breast. Started in my 20's.
1. I was diagnosed at 32. I don't think I'm IR, but I haven't been tested yet. I was just diagnosed. No family history
2. My weight has only increased slightly since my teen years, but I am extremely, extremely active. As a teen I weighed about 100, now 108
3. My periods were never "monthly" but they were every 5 or 6 weeks. Flow 4 or 5 days. I was on BCP for years so I don't know when this changed. Now, no AF on my own.
4. No prior US. US last week at 32
5. I took Marlvelon for 14 years for contraceptive purposes.
6. My AF was lighter and less painful on BCP. They never returned!
7. I got severe acne at age 20. It was treated with Acutain. After I went off BCP in January I started breaking out. After I took some Provera and finally got AF it started getting better.
1) dx at 31, not tested for IR, but I know hypoclycaemic episodes very well.
No other PCOS in family, but it took Grandma 4 years to conceive my dad.
2) always between 54kg and 60kg, at 160cm.
3) Were your periods ever normal as a teenager? yes, 35 days long cycles and long AF. Got BCP to "regulate" my cycles at 28 days and limit AF. No cycles at all after BCP.
4) never tested before
5) Got BCP to "regulate" my cycles at the age of 16. various brands - Lovelle, Cilest, Valette. For 14 years.
6) My menstrual cycle vanished while taking the pills!! No AF, even with BCP. Until today no normal cycles.
7) No, not at all. But since I am taking Met I notice my hair on head is getting more densely, but it was densely before as well.
1) What age were you diagnosed with PCOS? Are you insulin resistant? (yes, no, not tested). Any family history of PCOS, infertility, spontaneous abortions/miscarriages? I was diagnosed at age 24 august of this year
2) How much did you weigh as a teenager? And after diagnosis?
Always been tiny, small family members, all my aunts and mother are small.. I weight 110 lbs. in high school 5'7" and weigh that now.
3) Were your periods ever normal as a teenager? How many days in the cycle? At what age did you develop irregular periods and what is the range of your cycle length (without having to induce a period with progesterone)? My periods were heavy and somewhat irregular. I went on the pill @ 16 for heavy periods and went off march of this year. Never took a break.
4) If you had prior ultrasounds before developing PCOS, were they normal? At what age did ultrasound first detect polycystic ovaries? Only had the one ultrasound after we started trying and I never had a period from (march-august) my bloodwork LH and FSH were high.
5) Did you ever take birth control pills or had hormone injections/implants? Reason for starting? What brand? For how long? Heavy periods. I was on ortho tri cyclen, nuva ring for two years, and the patch.
6) Did you notice any changes in your menstrual cycle after taking the pills? Did the cycles ever go back to normal? The pill regulated my cycle and hormones. I have had no period since then on my own without progesterone.
7) Did you ever have acne or hirsutism (excessive hair growth)? At what age did you first notice this? Just noticed acne after stopping the pill
Thanks y'all! Really appreciate this!
__________________ On Prometrium 200mg at night for 10 days.
Clomid CD 3-9
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1st round Clomid 50 mg-bust (no O)
Started first month of accupuncture and chinese medicine because clomid made me crazy and achy.
