New here. Very confused and frustrated. Please help

jawwaj81 · 02-10-2009, 05:55 PM

Hi, I am a newbie, possibly a "thin cyster"

-went on birth contol consistently in 3/01 Quit bc pill 8/08 after almost 8 years on it
- had my period in Aug ,Sep (31 day cycle), very light in Oct (40 day cycle), no period in Nov, period in Dec (after almost 60 days), and nothing since then, on cyle day 61 with no sign of period yet.
- went to dr for irregular period after stopping pill (thought I was pregnant
)1st gynecologist dx me with PCOS in Dec. just based by ultrasound findings alone
- 2nd opinion gyno says no pcos based on "normal labs"
- I'm 27 y/o 5'3 96 lb's, acne (cystic), hair thinning,irregular period,tired all of the time since stopping pill
- I have my first appointment with an Endo (Dr Robertson in Atlanta), but I can't get in until May :o(
- I really just want to get a normal menstrual cycle again, and I'm scared I won't be able to get pregnant again

klb2009 · 02-10-2009, 07:27 PM

Hugs to you. I am in the same position, possibly a thin cyster. I discovered this board yesterday after an appointment with a dermatologist. I'm 29, have dealt with cystic acne and irregular cycles since 15, have some insulin resistance issues and high cholesterol, but not the apple shape or the excessive hair growth. The derm was very blunt in her assessment, she said the only thing that could be causing such persistent acne would be PCOS. So, I made an appointment with my gyne and hope to find a regular endocrinologist with a specialized knowledge of PCOS. My gyne appt is two months away, so I definitely feel your pain. I'm also trying hard to not self-diagnose with PCOS, but I have found this website to be very informative and helpful. Good luck, I know the wait is a killer!

bkb2008 · 02-10-2009, 07:40 PM

My heart goes with you too lkb and jawwaj. The wait is hard. Do you have any of your lab results or u/s results? For me I had the dr print me a copy and with the quantitative data, I went scouting online and in the library. At least being able to pit my hormone levels/ cysts sizes etc against what is reported in journals gave me a better idea of my condition. Also made me feel better that I'd have better answers to ask the dr when I see them. :-)

Feel free to vent or ask questions if you need. I'm quite newbie too (I joined like just days ago) and the ladies online have been so patient and nice in answering questions so far! :-)

DD56 · 02-10-2009, 10:32 PM

jawwaj81,
sorry to hear your doctors have been so confusing. PCOS seems to be a syndrome with lots of different appearances in different women and doctors are forever arguing about the criteria for diagnosis. Certainly doesn't make things any easier for us! I think bkb2008 posted this earlier, but these are the 2003 Rotterdam consensus criteria: (there are several other sets of criteria used also, just to add to the confusion)

need 2 of 3 of following:

Oligo- and/or anovulation (that means infrequent or no ovulation)
Clinical and/or biochemical signs of hyperandrogenism (excess hair, acne, male-pattern hair loss)
Polycystic ovaries (by ultrasound)

In addition, other causes (congenital adrenal hyperplasias, androgen-secreting tumors, Cushing's syndrome) must be excluded.

from what you are saying, you might fit the criteria for pcos. Abnormal labs are not necessary for the diagnosis. But you are also very thin, with a quite low BMI of 17 (underweight is below 18.5, so you should weigh at least 105 to be in the normal range), so that may also be a reason your cycles are irregular.

jawwaj81 · 02-11-2009, 02:32 PM

Thanks to everyone who has replied. It helps knowing I'm not alone in the wondering and waiting game. In regards to my weight, I've always been this small or smaller and I think my periods were pretty regular before I got on bc pill. Of course I started taking them when I was 19 years old so I don't know how much attention I really paid to my cycle back then. I wonder if my bmi does have anything to do with the irregular cycles? Does anyone know also if being off bc pills 6 months would still be giving me long irregular cycles since I was on them for so long? I've been trying to chart my bbt (only since day 45 though) and it's pretty up and down. I also have been feeling like I'm having ovulation pains or twinges, but it seems to be pretty often. Is that because of the possible high LH with pcos and our bodies trying to ovuate?? I also feel like I have horrible pms off and on.

linds2729 · 02-11-2009, 04:27 PM

jawwaj- I just want to encourage you - you will find from many on this site, that many women are still able to get pg with PCOS. It sounds as though you may be a "thin cyster" to me. I had very similar diagnosis. I used to have some semi-regular cycles 30 days or so, but it seems to be almost never now that I'm ttc (how convenient). My first ultrasound, after ob noticed irregular cycles, came back "normal" but I was annovulatory (my ob told me that most of the time you do not ovulate if your cycle is longer than 40 days). She also told me it could be my weight (I weighed a little less). After that, I went on bc for about 1 1/2 yrs which we thought may actually help regulate me. However, after going off I knew there was still an issue bc of my irregular periods and ttc for 6+ months. Another ultrasound confirmed possible PCOS (string of pearls). I do have slight abnormal hair growth also (like around belly button) - RE noticed, OB did not, I thought it was just genetic and not a big deal. They don't think I have IR because I'm at a good weight although I haven't been tested. I didn't respond to Clomid and now I'm trying another oral med- Femara, but my RE (specialist) seems very positive that they will be able to help us get pg. Although IVF is an option we may need to consider if these other meds don't work. An RE will probably recommend testing your DH's (or SO) sperm to make sure there is no other issues you are unaware of.

Good luck. It's nice to relate with all of you who are also in the waiting game. With the LONG cycles and not knowing, it can be wearing. I just try my best to turn it over to God.

btw, I keep hearing that metformin may be a good med even for thin cysters, but both my ob and re have not recommended...

bkb2008 · 02-11-2009, 05:49 PM

jawwaj81- I'm not sure if this helps, but I used to be super regular in my late teens and early 20s too. When I got diagnosed with PCOS and prolactinoma at age 22, it was a long journey there. My cycles were crazy for 1.5yrs prior to the dx. The 1st gynae I went to didn't even do a blood test to see what was wrong. He took a look at my acne and said, Diane 35 for you. Solves crazy cycles and crazy pimples. I reckon the Diane 35 (which is a form of bc) just masked the problem of the irregular cycles. It wasn't till I switched drs that they uncovered the problems of PCOS and prolactinoma.

Given your weight, it might be that you're too light and that your cycles are all over. It is good that you are charting now since quantitative evidence like BBT, CM, bloodwork, OPK etc can help see what's wrong with the cycles. Have you read "Taking Charge of your Fertility"? I would totally recommend. While waiting for proper diagnosis and apts w your dr, it helps to be able to read your body and it gives some great insight. All the best! :-)

beautyfromwithin · 02-25-2009, 12:05 PM

Hi Jessica!

Just wanted to invite you to an Atlanta area PCOS Meet & Greet we're having this Saturday, February 28th at 10:30AM. We're meeting at Sip Coffee Lounge. Please let me know if you're interested and I can send you more info.

Have a great day!

Shannon

Lucygirl · 02-27-2009, 01:39 PM

Quote:

Originally Posted by jawwaj81

Hi, I am a newbie, possibly a "thin cyster"

-went on birth contol consistently in 3/01 Quit bc pill 8/08 after almost 8 years on it
- had my period in Aug ,Sep (31 day cycle), very light in Oct (40 day cycle), no period in Nov, period in Dec (after almost 60 days), and nothing since then, on cyle day 61 with no sign of period yet.
- went to dr for irregular period after stopping pill (thought I was pregnant
)1st gynecologist dx me with PCOS in Dec. just based by ultrasound findings alone
- 2nd opinion gyno says no pcos based on "normal labs"
- I'm 27 y/o 5'3 96 lb's, acne (cystic), hair thinning,irregular period,tired all of the time since stopping pill
- I have my first appointment with an Endo (Dr Robertson in Atlanta), but I can't get in until May :o(
- I really just want to get a normal menstrual cycle again, and I'm scared I won't be able to get pregnant again

Hi
I am a newbie too and just registered on the site an hour ago so I'm not even sure I'm doing this right??? I was misdiagnosed for YEARS.....then the symptoms were over the top crazy.......weight gain, mood swings, cysts, dandruff, hair on my chin, horrendous cramps. It wasn't until I had an internal sonagram that everything clicked. I had to have 2 operations to remove my fallopian tubes and left ovary due to large cysts. I take the birth control pill zovia every day and never go off to have a period and it changed my life for the better.....no more cysts. I take the pill at the same time every day and I find that I don't have mood swings anymore

I take met 1000mg daily but I started out taking 500mgs a day. I first cut the 500mg pill in half and took half in the morning and half at dinner.....at first I thought I would never be able to go out of the house b/c my stomach was so upset but then you get use to it and it has helped. The hair on the chin problem is a pain in the neck.....I feel like I am constantly covertly running into a bathroom with a razor to make sure you can't tell there are 16 thick black hairs coming out of my chin! Some day I would love to get my body back to where it was......I use to be a personal trainer while in college and grad school....now I cringe when I have to get into a bathing suit...60lbs overweight.
It's so nice to have this websiteand not to feel like I am alone in this struggle.

anselmi · 03-05-2009, 05:33 PM

I know you feel great on the pill, but all it is doing is masking your problems, that is if you have PCOS. I dont know enough about you and I am not going to try, but you should really think about finding a doctor that can help you with your pcoS symptoms because they are obviously still there.
Good luck!

ArtsyLizzy · 03-05-2009, 07:33 PM

Anselmi,
When you say that the Pill just masks the symptoms, what other options could you have? When I was irregular (which I was for 7 years, getting a period every 7-9 months) my hormones fluctuated wildly, I had crazy mood swings, my acne was terrible, and I just kept gaining weight. Since I've been on BC, I get a regular period, my face has cleared up and my moods are much more stable' I do need to lose quite a bit of weight - 35 lbs or so. However, soon I will be TTC and I have a lot of fear of how hard it is going to be. From what I've read I can probably start ovulating if I can lose 5-10% of my body weight. But that will be pretty hard to do since I am almost certain that I have IR. I am a newbie to this site and I am really interested to hear my fellow soul cyster's stories and advice.

anselmi · 03-06-2009, 10:29 AM

ArtsyLizzy, I have IR also, I am not overweight but have added a few pounds. When I found out i was IR my doctor told me to go on a diet to see if I could get it under control. This diet includes the normal amount of servings of all the food groups that everyone is supposed to do. It also means cut out sugar and simple carbohydrates. Simple carbs, like potatoes, white rice, any type of bread or pasta that isn't 100% whole grain or whole wheat. The reason for this is because they are simple carbs so they break down quickly in your system which means a quick fast increase in insulin. If you eat complex carbs like whole wheat bread, it takes longer for the food to break down and therefore, it demands less insulin over a longer period of time. Also, it is good to eat small frequent meals. Like oatmeal and a bananna for breakfast, hard boiled egg and a handful of nuts for mid morning...and so on. This book I bought http://www.amazon.com/G-I-Diet-Healthy-Permanent-Weight/dp/0761131787 and it has an amazing diet plan in it and also a great section that lists all of the best, ok and not good for you options in all of the food groups. It really isn't a hard diet to do, its really just eating better. The diet will definitely help with ovulating, but it defiantly isn't the only factor causing you to not ovulate. After I did the diet for a month, I was retested for IR and my glucose tolerance levels were on the low end of a normal person, so it could work for you or at least help you some. Also there is a pill metaformin out there that is a second choice. I would really urge you to try the diet for a while though because I've heard metaformin has some side effects.

I'm assuming you have PCOS. Well when you start trying to have kids, you will still have it, the birth control didn't get rid of it. All the birth control did for you was put it in the back of your mind for a while. So when you start trying, you need to find a great doctor that can supplement you with the proper hormones you are lacking. I didn't have the bad acne problem, but I'm pretty sure there is a medicine for that too.
My story, I have very irregular periods, IR, and hypothyroid. My doctor gave me T3 for my thyroid problem, put me on the diet for IR, and I was put on prometrium, oral form of progesterone, and progesterone in oil shots (my progesterone levels were obviously really low b/c I wasn't ovulating). If you haven’t gone to see a reproductive endocrinologist...I'd suggest you do. But don’t let them push you into doing something with out doing a little research on it. There are a lot of women out there that get put down the wrong paths to getting better. Good luck I hope this helped!