Hey everyone! I just joined about 20 minutes ago, and I already feel overwhelmed. I am 25 years old, married for almost 4 years. Hubby and I are not currently TTC, but we have been talking about it lately, and this has kind of thrown a hitch into our plans.
Long story short, I have always had long cycles..usually around 35-40 days, sometimes longer, rarely shorter. About 5 years ago I had to have a lap to drain a large cyst on my right ovary. My doctor at the time suspected that I had PCOS, but due to a overly dramatic billing situation (they billed me thousands for a procedure I never had done), I stopped seeing her, and didn't have another gyno exam until last week. (Bad, I know.) I guess I ignored certain things over the past years, and I finally realized last year that there may be a problem. My periods started getting a lot worse, longer, more painful. I had a period every 28 days last summer, then in September 06, January 07, and April 07. I have not had one since. I went to a new OB/GYN last Monday, where I was told I most likely have PCOS. I have not had my lab results yet, but I am pretty sure I will have it. My last doctor thought I had it too, it was just never confirmed. After my appointment, I found out my grandmother and aunt both had it. I had a sonogram done, and my ovaries are covered in cysts, and my uterus is full of fluid from where some of the cysts have ruptured. My doc put me on Provera for three months, hoping that it will kick start my periods into being regular, and she said she will most likely put me on Clomid after the three months, as she doubts Im ovulating at all.
I was pretty upset, but I am starting to gain hope. I have some questions though! I am fairly thin, Im 5'5, I weigh 125 (give or take a couple pounds). I only have a few of the side effects listed on various PCOS pages...late or delayed periods, cysts, Ive had very mild acne in my life, although I have almost always had small bumps across my chest and shoulders. Is that a symptom? A lot of the things Ive read have a lot to do with insulin. I am actually hypoglycemic (diagnosed when I was 14), so where does that come in? Also----is it really difficult getting pregnant and STAYING pregnant with PCOS? Ive read some disturving statistics on miscarriage, and like I said before, its all so overwhelming. I hope I haven't asked too much at once!! Thanks for any input from you all!
Hi aufachse,
I'm fairly new here too-- many questions as well, but I can share some of my experience. I'm about 5'5, and 125 pounds-- so looks like we're in the same ballpark, though I never had regular periods. My ovaries are covered in the 'pearl necklace', as my dr. calls it. I've had mild acne (small bumps) on my chest and on my upper back and forehead.
It's my understanding that it is difficult to get pregnant for some, while others don't have a problem. I've just started down that road-- as in a month ago, and who knows how much time and intervention we will need. I try not to stress about it though. There is a lot that you can worry about!
My best advice is to get yourself a doctor who is familiar with PCOS-- and when you are ready to conceive, go to an RE (reproductive endocrinologist).
Good luck with your results, and there's plenty of good medicine out there to help with the issues that you may have had. You may find relief in finally pulling some pieces of the puzzle together.
Hillary
Hi aufachse and Girl Glass,
You both sound a lot like me. I'm 5'5'' 115 with bumps on my chest (occasionally) and on my upper back (I hate it). I believe I am also hypoglycemic because if I don't eat every 2 hours I get the shakes real bad and feel dizzy. I've just never had it check on.
Unlike you aufachse, my periods all together stopped instead of being really heavy/long. The whole fluid in your uterus thing sounds awful! You poor thing.
We started TTC about a year and a half ago but only started seeing a doctor in January. My first doctor assured me that we will get pregnant. One way or another, thanks to modern medicine and practice guidelines. We've been doing the whole provera/clomid cycle for 6 months now and I had my first IUI a few weeks ago. We're really hoping that it worked because we want a baby so bad.
The reason why I'm giving you all of this information is Don't Worry! You're not alone! Until I found this board I thought I was some weird mutant because everything I read said that PCOS was only seen in obese women that had hair all over their body. Sure didn't sound like me. But apparently what we have is PCOS but a different form, and unfortunately harder to treat.
Wish you both the best of luck and keep us posted on your med. stats. As far as staying pregnant with PCOS, I'm sorry I don't have any info for you. But it is my understanding that women that are diabetic and/or insulin resistant have a harder time. Those who aren't are fine.
Hi aufachse,
My ovaries are covered in the 'pearl necklace', as my dr. calls it.
See, I don't have that at all. She said that normally the cysts are like you described, on my ovaries however, they are just spread out all over. She said I don't meet the normal things associated with PCOS, but with all the different things added together it says PCOS.
Hi aufachse and Girl Glass,
I believe I am also hypoglycemic because if I don't eat every 2 hours I get the shakes real bad and feel dizzy. I've just never had it check on.
Unlike you aufachse, my periods all together stopped instead of being really heavy/long. The whole fluid in your uterus thing sounds awful! You poor thing.
Have you found an RE yet?
I was tested for hypoglycemia when I was 14, and had several fainting spells. It is a really crappy test, but worth it in the end. They basically pump you full of sugar, and take blood at various times. I always carry around a snack with me now, a bag of peanuts, or some crackers. And I can tell instantly when my blood sugar is dropping.
As for the fluid thing---it STINKS! I have felt so bloated lately, now I know WHY. I kept thinking..WHY am I bloated?? I haven't had my period in months! A few weeks back I had terrible pain in my right ovary, so I guess a cyst ruptured. Blegh!
As for the RE---I guess I will wait until hubby and I are actually TTC?
Aufachse, sorry I assumed you were TTC, my bad. I hope you can find an office that is staffed with OB/Gyn's and RE's so they can consult. My office has that and it is nice. However, I am not satisified with my RE at the moment (long story, you can read some of my posts).
My OB/Gyn told me that the most important thing when you have PCOS is to have periods. Whether its with Provera or BC pills, it is important for your uterine health. I also do not have "string of pearls"-like ovaries. Mine are more grape like. Cysts all over the place but relatively small.
Let me know if your doctor suggests anything with the hypoglycemia, my RE has told me it has no effect and is of no consequence to PCOS (I don't believe her). Just eat when I need to, high protein foods.
Regarding a diagnosis of PCOS. It is my understanding that the only requirements are that you have multiple cysts on your ovaries. All of the other effects are part of the "syndrome" part of it. Some women get hair in weird places, some women's hair falls out, some women get acne, some don't etc. There is no real definition. I don't know if I necessary like being labelled PCOS, I prefer to be labelled "anovulatory" because I think its more descriptive and leads to my symptoms. If I could figure out why my body suddenly shut down and decided not to ovulate, I would be a happy camper (but that's the scientist in me).
Another symptom I have is whenever I would actually get a period on my own (about once every 4 months...sound familiar??), the week before it started...not only would my hair start to fall out (noticable in the shower) I would get very swollen, very tender breasts that had cysts in them. I also suffer from kidney stones (unrelated, i believe) and one time, I had to go for an ultrasound of my kidney. It had a 2 inch cyst in it! My breasts were also cystic at the time and a week later I had a period.
I went back in for a follow up, after my period, and the cyst on my kidney was gone, and so were the ones in my breasts. I think that this is very significant but, once again my RE thinks its all coincidence.
Don't know if you ever have had anything strange like that happen, just thought I'd check. Just don't let anyone bully you into a diagnosis. From age 23-25 I was told that I wasn't having periods because I was just too stressed out, or maybe I was too skinny etc. No one took the time to see what was really wrong with me. Ever since then, I demand to know all the information I can. I have my own record of all my blood work and tests and do a lot of my own research. Keeping my own chart has really helped me realize what my body is going through and why some things are happening.
Let me start by saying, I'm so glad that I found this PCOS board! I can't tell you the number of times I've referred to it with just regular questions, thoughts, and wanting to see if others were experience the same things as me. Pfew! I'm not alone!
I was diagnosed when I was 18 from a blood test and they found that my Testosterone levels were sky high, and this explained why AF would show. The 'Pearl Necklace' was my doctor's way of telling me that there were cysts all over-- small, everywhere. I think he was trying to make me feel beautiful or something, and that's sometimes the last thing that I feel with PCO. Later, I found that there are a few 'major' symptoms of PCOS and you only need one of them to have the syndrome. (irregular periods, hirsutism, female pattern hair loss, and acne). I'm not sure that you actually need cystic ovaries in order to have PCO (wait, that doesn't make sense! hmmm) Anyway, I've always wanted to have regular periods because, somehow, I think that it will make me more feminine (dumb, silly, I know).
Aufachse, you should get an RE before you determine you want to get pregnant (just my opinion). I've had an RE since my early twenties, if only because some of them specialize in this syndrome-- and it's always good to have somebody on board who is familiar with the situation. I also kept my regular gyn, but once a year would get checked by the RE. He'd check my symptoms, the size of my ovaries (ours tend to be bigger) through ultrasound, and just plain keep track of my PCOS as a baseline.
Refrain, good luck with the IUI! I'm keeping my fingers crossed for you! My cysts have never bothered me, but when DH and I do the BD (TMI), sometimes they hurt- again, normal for PCOS. What is the Chlomid/Provera cycle like for you? My RE tells me that we need to go straight on Chlomid in order to get pregnant, but DH and I would rather enjoy ourselves ttc for a little while on our own-- even if it's pointless-- which feels terrible! Do you do Chlomid and then do a booster shot after finishing Chlomid? I heard that some take a shot, others don't-- confusing!
No worries----we are not ttc, but we aren't preventing either, if that makes sense. The period every 4 months is something I go through for sure, and my boobs get soooooo sore, but I think I have only ever had cysts on my ovaries, that I know of.
Aufachse, you should get an RE before you determine you want to get pregnant (just my opinion). I've had an RE since my early twenties, if only because some of them specialize in this syndrome-- and it's always good to have somebody on board who is familiar with the situation. I also kept my regular gyn, but once a year would get checked by the RE. He'd check my symptoms, the size of my ovaries (ours tend to be bigger) through ultrasound, and just plain keep track of my PCOS as a baseline.
Yeah, my doc said my ovaries are larger than normal, which is kind of the norm for PCOS. Maybe this is stupid, but what is the difference between an RE and my regular gynocologist?
Girl Glass- The Provera/Clomid cycle for me went like this:
Round 1: Provera followed by 50mg Clomid CD5-9: No ovulation
Round 2: Provera followed by 100mg Clomid CD5-9: No ovulation
Round 3: Provera followed by 150mg Clomid CD5-9: Late ovulation CD 26
Visual problems (random bright lights, lights with "tails", blurry)
had a period without Provera. However, my doctor said that I could not have 150mg of Clomid again because it messed up my vision so bad. So she had to knock the Clomid back down to 100mg. Now, from previous experience she knew that would not make me ovulate on my own. So she gave me:
Round 4: Dexamethasone each night (to reduce my androgens), 100mg Clomid 5-9, and then followed my follicles by ultrasound. On 100mg of Clomid with the Dexamethasone, I produced 2 follicles on my own each >17mm. The 100mg of Clomid didn't allow for ovulation (or at least those suckers to pop out), so I had an hCG injection (2cc) on CD 15 at 10pm. The hCG will allow the eggs to "pop" out 36 hours later. So my IUI was done at 10am on CD 17. I had a second injection of hCG on CD 21, just in case the IUI took this hCG would keep my body from starting the AF process.
So now....I wait. I'm on CD 27, praying that AF does not show up but rather a BFP (AF will show up on her own since I did "ovulate")
So that VERY LONG answer to your question is summarized here. Clomid messed up my vision at a high dose so they had to lower it. But the lower dose will only stimulate follicles, but not let them pop out. Therefore, I had to get the hCG injection to make them pop out. Because the hCG is so predictable, I had an IUI done to put the sperm and the egg in the right place the right time. We could have done it au naturale, however, my CM was not developing and why take the risk of those little guys not getting in there...I'm an impatient person. Some women don't need hCG because Clomid allows them to ovulate fine and dandy and on time (not me though).
If you aren't having regular periods, then I would highly suggest going the Clomid route if you are seriously wanting to TTC. TTC with no meds is not fun. We did it for a full year and there is nothing worse that trying hard, not getting AF, POAS, getting BFN again and again and again, and then waiting a few more months for AF to show up. Most of the time even if you do ovulate properly, its a late ovulation (like CD 24 etc), and the window of healthy implanation passes, so it won't work anyway. Just my experience.
aufachse405- The difference between my OB/Gyn and RE. Is that my OB/Gyn diagnosed my PCOS but is not in the business of treating it when TTC. She only gave BCP to stimulate my periods, but she did consult with the RE regarding my charts. When it came time to start trying, my OB/Gyn sent me to the RE to begin all the medicine/ultrasounds etc. I still see my OB/Gyn for annuals etc but my hormones are all being kept in check by my RE. Now praying that we finally do have a child, I don't know who I will keep seeing to keep my hormones in check. Probably my OB/Gyn, who will consults with my RE for proper administration of Rx's....
aufachse405- The difference between my OB/Gyn and RE. Is that my OB/Gyn diagnosed my PCOS but is not in the business of treating it when TTC. She only gave BCP to stimulate my periods, but she did consult with the RE regarding my charts. When it came time to start trying, my OB/Gyn sent me to the RE to begin all the medicine/ultrasounds etc. I still see my OB/Gyn for annuals etc but my hormones are all being kept in check by my RE. Now praying that we finally do have a child, I don't know who I will keep seeing to keep my hormones in check. Probably my OB/Gyn, who will consults with my RE for proper administration of Rx's....
Im confused...because my OBGYN made it sound like she would be treating me as long as I continued to see her. She made statements about certain things we will do when I do start TTC, she told me about certain fertility drugs that would help me, etc.
__________________
Me -27 DH -32
Married since 08-01-03
01-08-08 BFP!!!!
DD: 09-08-08
To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
Hey girls. Hopefully I can add a little bit here as well. First about my symptoms- never got a period after coming off the pill & was diagnosed by my gynecologist, who was adamant about treating me (told me not to go to an RE because he'd run all these expensive tests that I didn't need, blah blah blah). I'm thin (125# 5'10), mild acne but skin is definitely on the oily side, and I also have hirsutism (hair on my abdomen & between my breasts that's a bit darker than it should be). "string of pearls". Wasn't monitored at all on clomid cycles with her which pisses me off now (was given a chart & some scripts & basically told to have at it- didn't know the difference), had a chemical pregnancy one of the months. So first, when you're ready to get pregnant go see an RE. OB/Gyns aren't experts at this stuff. She also put me on Metformin after the chemical. To tell you the truth I don't know if that would have helped me carry a pregnancy (had 3 chemicals, never made it to the second betas) because I was never taking it when I got pregnant. Started seeing an RE, told me I didn't need the metformin because I'm thin & "obviously not IR", told me I don't have to eat low-carb, he calls it "ovulatory disorder" & not PCOS. So anyway, I haven't gotten a straight diagnosis which seems to be pretty common with girls who are thin like us. And so DAMN frustrating because how are you supposed to treat something when you don't know what you're treating? I'm going in on Tuesday to talk about the next step (just had the 3rd chemical) & am assuming that we'll get the early loss workup at this point b/c we talked about it after the 2nd. I'll keep yall updated, because if that comes back negative I guess it is the PCOS or hormone imbalance that's causing me trouble hanging on to pregnancies. I don't think I've ever gotten androgen or testosterone levels either which I'm going to ask for. So anyway, I'll let you know what I find out & hopefully it may shed a little light on this.
Wow aclar1, you've been through a lot. So sorry to hear about the chemical pregnancies, must be awful. You're in my thoughts as you head to the docs.
aufachse405-If your Ob/Gyn specializes in reproductive endocrinology, then I would think it would be ok to stick with her. But if not, go get an RE.
Another reason is that REs need to be very flexible about timing. There are certain cycle days they MUST see you to check for things, sometimes even Sundays. Most OB/Gyns I know arent that accomidating with their schedules, dealing with preg. women, pap smears and etc. Its hard to fit you in.
REs are well versed and up to date on the fertility world, you don't want someone treating you who just knows the basics. My RE gave me 4 treatment options. All different, all shown to work in thin-PCOS patients. It was up to me to do my research and choose. Good luck and I hope you can find an RE in your area that takes your insurance. I think it will make your life a lot easier.
aufachse405- I keep forgetting you are not TTC! sorry. Your Ob/Gyn may have treatment options for you as far as maintaining periods. Also, since you said you want to try on your own for a while before meds, she may be talking about some non-medical stuff you guys can do. Or maybe she was giving you a preview about what an RE would do for you (Clomid etc.) but doesn't plan on administering them herself.
Sometimes docs dont get down to business until you mention the "we wanna have a baby now" statement (but not all).
But when it comes to TTC, go see an RE. And also remember...most of us having been struggling with that for a long time, so if TTC is within your 2-3 year plan, you may wanna hop on the TTC train right now.
aufachse405- I keep forgetting you are not TTC! sorry. Your Ob/Gyn may have treatment options for you as far as maintaining periods. Also, since you said you want to try on your own for a while before meds, she may be talking about some non-medical stuff you guys can do. Or maybe she was giving you a preview about what an RE would do for you (Clomid etc.) but doesn't plan on administering them herself.
Sometimes docs dont get down to business until you mention the "we wanna have a baby now" statement (but not all).
But when it comes to TTC, go see an RE. And also remember...most of us having been struggling with that for a long time, so if TTC is within your 2-3 year plan, you may wanna hop on the TTC train right now.
I totally see what you are saying----we have never officially 'TRIED' for a baby, but we have never prevented it. So yeah, we may have issues in that area. She knows that trying is in our future though, thats why she is trying to get my periods regulated over the next three months, then she wants to put me on clomid. I guess I will just be patient while I try to get my periods right.
__________________
Me -27 DH -32
Married since 08-01-03
01-08-08 BFP!!!!
DD: 09-08-08
To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
New here--questions and back story... 
