What causes one to be a "thin cyster" with no side effects???

mamcduff28 · 04-29-2009, 04:19 AM

Well I got off the pill 5mo. ago (hopeing to let my hormones regulate themsleves for a few mo. before my husband & I began trying to get pregnant) and little did I kno, I was opening a can of worms! After the 3rd mo. of not having a period, I went to see an OB doctor. They did a pelvic exam and took my blood. Everything felt normal and the prego & thyroid tests came back negative. I went back the next day for a sonogram to find out that I had many follicle cysts on my ovaries... which they say is "probablly" polycystic ovarian disease. The following week they had me take an injection of Progesterone to jump start my period. Indeed, it did start that next week but now, after 6wks, im back to nothing again! This is SO crazy to me because I was regular before I ever began the pill and was ofcourse regular while on it. Sooo, i began trying to research this PCOS which is why I am now more CONFUSED than ever! All the documents I have read say that it is mainly caused from a blood insulin problem with the side effects of facial hair, acne, hair loss and obesity. I have NONE of these! In fact, i only weigh about 107-110lbs. I have NEVER had any problems with acne or facial hair. My hair is fine but I have alot and it has always been that way. I am one who loves to eat healthy and excercise 5days a week so I dont understand how my blood sugar could be off! I DONT understand ANY of this and feel its starting to take over my life!

Im used to beeing chipper & chatty and lately I have been kinda quiet and sad. HAS ANYONE EXPERIENCED THIS THAT COULD GIVE ME SOME WORDS OF ADVICE?? Could this PCOS be caused from ANYTHING else besides blood sugar levels? Such as going off the pill, beeing too thin, stress, or anything that COULD apply to me? It seems my doctor is dragging her feet to just test my hormone or sugar levels! She just wants to focus on whether I want to take fratility drugs and start trying to get pregnant or to throw me back on birth control! Cant a girl just want to figure out whats wrong and fix it first? I have an apt. this week but I dont want to just choose between Clomid or birth control! So, in the meantime, does ANYONE have any answers or suggestions??? If so, PLEASE PLEASE PLEASE fill me in! I would GREATLY appreciate it!!!!!

rachapman · 04-29-2009, 09:40 AM

HEY! This sounds familiar... I had no idea I had PCOS until I got off Depo. Im still wondering if there is a correlation there, or just coincidence. As far as displaying very few symptoms, everyone gets a different mix. Yours could just be limited to irregular menstruation, cystic ovaries and funky insulin/sugar levels. If that's the case get you some Metformin and thank your lucky stars that's all you ended up with! It gets way worse! Oh, you said you didn't understand how your blood sugar could be off, did you do a full fasting glucose test where you don't eat and then drink little bits of syrup for a while? It doesn't sound like your doctor is very comfortable with PCOS, most aren't. You need to find a doctor with experience in treating it. Do a search for some other "cysters" in your area and ask them who they see and how they feel about them. I'm on Metformin and my cycle came back nice and regular and i got pregnant within 6 months, on my own, no fertility drugs. You can read my full story on my profile.

here&there · 04-29-2009, 10:18 AM

I've been scanning the forum a bit and finally I've found a case that is like mine. I have a similar history: I had regular periods (like clockwork) before I was on birth control. I'm 27 and a year ago I got off the pill after taking it for 5 years. Although I had prepared myself for irregular periods (which can be common after going off the pill) I got my period after 2 months, then again after 3, and then when it was almost 4 months I went to my GYN. She diagnosed my with PCOS based on what I've said here, an ultrasound (which showed polycystic ovaries), and blood tests.
I also have very few of the classic symptoms: I'm definitely not overweight (123 lbs.). I do have a history of acne, and it was treated in the past, but it had returned (but not as bad) after I stopped with the pill. I'm blond and I've never had much excess hair, but I did notice that I had more than in the past (for example, I had to shave my legs more often).
I'm recently married and I don't intend on starting a family for a few more years, so my doctor told me I should go back on the pill. I was taking Yasmin at first and then switch to microgynon because I wanted something with less side effects. I really don't want to go back on the pill! I can't stand managing my days with it and I think it negatively affects my libido. I'm looking for other ways to deal with the situation - that's why I came to the forum.
While on my honeymoon I suddenly got my period after only 1 1/2 months! My diet had changed (we were in Thailand) and I was walking around a lot on vacation. My friend is a nutritionist and she recommended for me a low carb diet which can help women with PCOS ovulate naturally. There's plenty written about it in the "Diet" section. I'm giving it a try. I eat pretty healthily anyway so it isn't that difficult.
I'm still not 100% sure about the diagnosis and I think I should ask for more blood tests when I go back to my GYN (she was willing to let me go another 3 months as I am and visit her again - as long as I didn't go more than 3 months without a period).
So, I'm sort of in a similar situation and I'm just trying to understand what's going on at this point, but personally, I've decided to take the diet route and give it a try before deciding to take any medication (and birth control is medication).
I hope we'll hear from other women who were in similar situations here that have been around the block and can give us some more advice... :-)

mamcduff28 · 04-30-2009, 03:48 AM

Awwwe thank you girls for replying, especially so fast!

Although PCOS isnt normal to have, it feels more normal to hear from others dealing with the same issues! I go back to the Dr. tomorrow but she doesnt plan to test my hormones at this apt. so I have a feeling she may be one of the Drs. who isnt real comfortable dealing with PCOS! If thats the case, then I will definately use your advice on searching for a new one! I really like the low carb diet idea vs meds. if I am isulin resistant. WAIT, let me rephrase that... I would prefer a diet over meds. although I LOVE carbs lol! Anyway, I too, hope that some "oldie cysters" stumble apon our link and give us some advice!! P.S. I also have a hard time believing that these problems have NO connection to having been on birth control as they claim! And then their advice is...lets put you back on...NO THANKS! lol Well, Ill let you know if I find out anything usefull tomorrow or if im going to begin a search for a new OB! Thanks again girls!

FunkyChicken · 04-30-2009, 11:10 AM

Dear girls,

I am in exactly the same position as you. I have also been around the block and dealing with this for some time. I HIGHLY HIGHLY recommed reading the article by Jarret Fertility clinic on this site.

It is in the thincyster part here under the sticky threads, it is posted by Kate Carney and titled Treatment for thin PCOS
IT IS SO SO SO important that you understand the difference between obese PCOS and Lean PCOS. This is the exact reason why we have a seperate thread here as we are dealing with differen issues.

PLEASE read the article and let me know what you think.

Louise

Elly in PA · 04-30-2009, 11:42 AM

Just wanted to put in my 2 cents...I made my first post last night in the thread on trying to ovulate naturally. I am 29 and I too stopped birth control and my cycles got longer and longer until I finally went in to the doctor. Never had problems before going on the BCP 11 years ago...no other hormonal indicators, just cysts by ultrasound. My doctor referred me to an obgyn who specializes in this sort of thing but for now I am trying a low glycemic diet and cinnamon, more exercise. I am not obese, just 10 or 15 lbs overweight, maybe. I too feel that there is a connection with BCP but since I went on it when I was still in my teenage years it could be that I developed PCOS many years ago but the BCP masked the symptoms. I am now taking my temps every morning and just going super healthy and listening to my body for a few months before trying any medication.

sheepiegirl · 04-30-2009, 12:01 PM

I've always been irregular, but was on BCPs from about 20-28. When I went off at 28 and didn't get AF I went to the doctor, who did bloodwork and that's where the diagnosis came from. Mine definitely wasn't caused by BCPs. I am sort of of the mindset that BCPS don't cause it, but since many people start taking them in a time in their life when symptoms might show up (but then they don't show up b/c you're on the BCPs), so when you go off of them they show up and the BCP is blamed, even though the symptoms would have shown up earlier if you never started the BCPs. Wow, that was a horribly constructed sentence!

I didn't think that Jarrett article really fit me, although lots of people swear by it. Other than the ovulation thing, I don't really have many symptoms. Not overweight (maybe under), have no difficulty controlling my weight, no acne, etc. It seems everyone's symptoms are different. Also, about the insulin, I don't think I've had any insulin problems, but I've also never been tested (except for the regular testing while I was pg).

so, it's okay to be a little confused, since it can be confusing. I would say, find a doctor who is comfortable with PCOS, as well as getting bloodwork done.

FunkyChicken · 04-30-2009, 12:12 PM

Dear Sheepiegirl,

Have you read the whole Jarrett article?? There is a a whole section on Thin PCOS and how we do not have any of the symptoms of PCOS!!! That is why it is SO SO SO important that anyone who is thin ESPECIALLY underweight read the article.

The article basically says that being underweight can also be a cause of PCOS in thin people. Tha tis why I think it is so important that us thin cysters read the article.

It starts on 'normal PCOS' and then goes into great detail about thin PCOS.

Lou

JMac30 · 05-01-2009, 02:29 AM

LADIES!!! I am so excited to find this thread because I feel like I've found some women in the same boat as me!
I went off the pill a year ago at the age of 29. I too, wanted to get my body off of it so me and my husband could start ttc.
Well my first period didnt come for 51 days, but I thought that was normal because my body was just getting used to being off the pill. But I did kind of drive myself crazy wondering if I was pregnant that whole time and took 5 different pregnancy tests, so I decided to chart my next cycle (fertilityfriend.com is a good website for charting if you're interested).
My next cycle was ANOTHER 51 days. Strange! But because of charting I could tell that I ovulated on Day 40. I went to my doctor to ask if this was normal and he assured me I probably just had post-pill ammenorrhea, meaning my body is just taking its time to get the pill out of its system. I DID ask about PCOS but he assured me I could not POSSIBLY have it, as I didnt have any of the outward symptoms. I am a healthy weight (BMI 23 or 24) have no facial hair, no thinning hair, etc.
So I went along my merry way. My next cycle was 40 days - WOO HOO they were getting shorter!!! (We werent REALLY trying to get pregnant until after this cycle so we missed our timing completely.)
THEN my NEXT cycle went on and on... I didnt ovulate until cd58! BUT we somehow got pregnant!! CRAZY!!!! Sadly, at 11 weeks along an ultrasound revealed that the baby had no heartbeat and was measuring only 7 weeks.

Truly devastating. I had to have a d&C on Jan. 22, 2009.
My only hope after that was that maybe my body would regulate after being pregnant and I would begin having normal cycles. But..... no such luck.

I charted and charted this past cycle and my temps were just all over the place and I never ovulated. When it got to 70+ days I made an appt with a DIFFERENT doctor, an OB, maybe someone who would take me seriously since my regular doctor was convinced I was FINE. Well this OB ran blood tests but he still didnt quite know what it was I had. But the blood tests showed my LH:FSH ratio was 2:1, which is enough to diagnose me with PCOS, apparently. BUT we did a fasting glucose, fasting insulin, and androgen tests as well, and my levels on ALL of those were normal!
I HAVE been breaking out a lot more since the pregnancy and miscarriage however. I had acne as a teen but always thought it was normal teen acne. When it came back after I went off the pill I just thought that was the way my skin worked, I have a bit of hormonal acne, I didnt think it would be related to PCOS. But now I am finding out that maybe it is.
SO now I am 30 and have been off the pill for one year and have JUST found out I have PCOS. Craziness. My OB prescribed me progesterone and all I got after completing it was a day and a half of spotting. I made another appt to see him but couldnt get an appt until May 14th.
I too am an active exerciser, I teach a Sculpt class twice a week, I am training to run a 10K, I hit the gym regularly. I eat fairly well but am going to try to be even BETTER, by avoiding processed carbs as much as possible. I have my first acupuncture appt tomorrow, and I am trying Vitex.
SO I am hoping I can get this under control on my own and bring back my O's! And preferably a more normal length cycle.
All the OB really mentioned to me was that he could put me on Clomid when I wanted to. And I may go that route but part of me really wants to see if I can bring it under control naturally. I dont like medication, and I too am just trying to figure out why I have this!??
I had normal cycles before I went on the pill too?! There is very much a "Why Me" feeling around this diagnosis, isnt there? It's like, what did we do wrong? Is it something we ate? Something we drank? What caused this???

Anyway, I rambled on, but lovely to "meet" all of you, and let's keep eachother posted as we go through this together.

Smile77 · 05-01-2009, 07:36 AM

Hi,

I got so excited to read your messages. I decided to re-post a message I put in another thread here. One difference is that before BC pills I wasn't regular. I 've always been fighting with too long menstruations and after I got of BC the lack of them. The policysts were present already at the age of 19, nobody told what it meant, until I wanted to conceive.
So this is my story:
---
Hi,

I also have the same problems. I am not overweight no excessive body-hair. Last Friday I went to the gyno and was diagnosed even before getting a blood test. I was shocked and left the gyno crying. After the weekend I decided not to rush into clomid and the whole medical cycle. Yes I have the follicles on my ovaries, however I believe I can ovulate on my own. I've been through stress lately and haven't got a period after February ( a pattern I recognise from previous stress periods, it just blocks everything). But, before, with a healthy lifestyle (jogging, gives me endorphines, I just love it), I actually managed to have my periods once per month. I'm on duphaston (7 days) now, in order to get my periods back. The gyno asked me to have a blood test on CD3 and come back as soon as I want to start with clomid. First, I would like to see the blood test results!
I feel like she is pushing me too much. I hate that. Yes I want a child desperately, but first lets figure out how my body works. I planned to monitor my temperature every morning. Not very pleasant, you have to do it rectally (yagh!). I give myself till September, I am still 31. After that, I will consider medication...whatever there is available.

wish you all good luck my strong cysters. big kiss and hug from Amsterdam.

All the best,
PCOS Message Board

---

The thing is, I also want to regain control over my body. I want to understand it and not to be rushed towards radical medication.
I am so happy that you guys understand it. I was told I was getting obsessive about it. I totally disagree. I just want to understand this syndrome, I don't think the doctors do.
If it was to me I would have had blood tests at least once a weak so I could monitor the hormone levels. Am I asking too much? Besides, the hormones, including BCs make me sick and extremely moody. I would like to postpone that as much as possible.

Karibusmiles · 05-01-2009, 06:47 PM

My experience is similar. I had almost no other symptoms except irregular periods. All my bloodwork came back fine except for a slight LH:FSH ratio problem. It is sooooo frustrating and I often feel powerless over my own body. I can feel my hormones constantly fluctuating (like my body wants to have AF, but just won't). I did find information on being insulin resistant. Since I've tried BCP, natural herbs, & provera, I decided to give Metformin a try. Hang in there and work through it!!

mamcduff28 · 05-02-2009, 02:52 AM

WOW, im SOOO glad to hear from ALL of you! I didnt really find anything out at my apt. other than this doesnt HAVE to be a blood sugar thing for me and that it very well could be from stress or weight loss. Although, they did have me come back this morning to do some more blood work to rule some more things out. (Results will be about 10 days) So in the meantime, they are starting me on Prometrium to help keep my periods regular and see if my body will snap out of this! I will take 1st pill in a few mins and im nervous because I have "new medicine" axiety lol! For real though! I will DEFINATELY keep you all posted on this and we ALL SHOULD! Hopefully we can help each other through this!!! And dont ever worry about your messages being too long or that we are over reacting because this is a BIG deal for all of us! SOMETHING is NOT right!! P.S. Funkychicken...Im going to go read that article now...Thanks!

Smile77 · 05-02-2009, 01:36 PM

Hi again,
My blood test results are in June. I am still having duphaston. It turned out to be for 10 days, they made a mistake in the hospital (can you imagine?!). Thaks to good old internet and prior experience with other doctor.
I am now on day 4 and I am keeping a daily note of all my activities concerning PCOS. These include medicines, sport activities and temperatures. Also my mood. The thing with sport is for those of you already active try not to overdue it. My max will be 5km every 2 days. This because athletes also have menstrual disorders. I just want to avoid messing with that. I'm not a professional (and not trying to act like one) so if somebody has a different argument, please ...
Good luck girls and please keep us tuned with your progress.

rusty1 · 05-03-2009, 12:35 AM

hi
my first doctor diagnosed me with pco based on a blood test(tsh, fsh and lh) and ultrasound result. he checked my blood sugar and it was normal.the thing is it should not be what he tested...my second and current doctor ordered a glucose tolerance test which tests for insulin levels vs sugar ingested.my insulin secretion was way above normal which suggest insulin resistance, another symptom of pco. he started me immediately on metformin.looking back, i should have started my metformin about two years earlier and maybe, maybe things would have been easier for us to ttc at this point in time
please look for a specialist in this field.not all doctors are familiar with the case. all of gyn will know a bit. but an expert in the field will know a lot.
God Bless!!!

Smile77 · 05-03-2009, 07:09 AM

hi,

Rusty1, thank you so much for your meassage. This is giving new insights. Actually, my dctor started pushing towards clomid even without looking at my blood test results. I stood on looking at them first.
Could you please be more elaborate about your experience with met., and how it worked for you?
cheers,
Smile