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Irregular Cycles

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oobiecoo

Ideal_Rock
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Sep 10, 2007
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2,263
I know this is discussed some in the TTC thread but its so long and not exactly easy to find info. I''ve been off of hormonal bc for several months now and have been TTC. I started temping and checking cm but gave up when I realized my cycles were being so irregular. I am currently on cycle day 89... this has been the longest one yet. I was just wondering what other ladies out there have done in this situation. Should I be concerned? Is there any testing that doctors normally do for this sort of thing?
 

Italiahaircolor

Ideal_Rock
Joined
Dec 16, 2007
Messages
5,184
I''ve always been irregular. I''ve even gone so long as 9 months without menstrating.

In my younger years, I took birth control to regulate...and it worked really well. But, every time I went off the pill, I would stop again. It was frusterating and scary. Esspecially when I started TTC...because obviously birth control was the last thing I wanted to be on at that time.

Every womans body is different...I would suggest getting into see a doctor whenever you can.
 

April20

Ideal_Rock
Joined
Aug 1, 2008
Messages
3,312
I went off BC in October. Not TTC, just tired of the hormones. My first cycle off went from Oct 19 to Mar 16. It was 153 days or something crazy like that. I am on CD21 of cycle 2 and my temps are not indicating ovulation or anything close to it yet. My temps the last two days were in the 96.7 and 96.8 range (and change). I was JUST having a cycle irregularity discussion with DH bemoaning the fact that my cycle is so irregular so far and thus impossible to predict!

I had a dr''s appt on March 25 for my annual and also to get the drugs to end my cycle if need be. I had to wait 5 months for that appt and of course, AF showed the week before. This go ''round, I don''t know that I''m going to let it go past 90 days before asking for the meds, though I am opposed to taking things unless *absolutely* necessary. I hate adding things to my system as I would rather just let it work its way out, but I don''t think I can do another 153 day cycle.

If you''re TTC, I would call and get the provera. End the cycle and move onto the next. My doctor said they don''t run tests until you hit 6 months with no cycle.
 

fisherofmengirly

Ideal_Rock
Joined
Apr 14, 2006
Messages
3,929
Oobie!!

Miss you at the TTC thread, girlie. I know it's long and can sometimes be a little overwhelming, but a lot of us have had irregular periods and have sought treatment for it.

There are lots of different things that can cause a long cycle and I really think the only way you can tell what it is would be by seeing a Dr.

I've always had longish and irregular cycles. When in high school, I would only have about three-four a year, but at the time, my mom thought that was okay, since some girls are like that. They have increased in number per year since then, but they still were not regular.

When we decided to start TTC, my first cycle was 61 days! Of course with that length of a cycle, there is no way to know when to try for making a baby, so I was really upset and worried about it. The next was a lot shorter (around 35 or so) and I started charting and could see that I was in fact ovulating, but it was just coming late. (Delayed ovulation they call it.) I also noticed that it would look like my body was gearing up for ovulation (there are lots of signs that come with ovulation, once you know what to look for), but it would happen about a week to two weeks later. Most cycles were between 35-50 days.

Finally after the better part of a year and lots of tears, I went to the Dr., totally worried that I'd be told that I had PCOS or something else like cysts, fibroids, or messed up hormones. Well turns out my hormones are little off, but only in the brain department (haha.. that sounds funny). The Dr. prescribed Clomid to me, even though I ovulate, but I do it way too late, making the egg less "ripe," and this has been my first cycle on Clomid and I've ovulated at cycle day 14, and should finally have a cycle of "regular length" (meaning 30 days or maybe less) if I'm not pregnant.

The Dr. did a series of blood work to check my hormones, my egg quality, and to see if I could possibly need more testing to see if I could have PCOS, tested my thyroids and my gluclose, as all these things can effect the cycle. I also had an ultrasound to check the size and shape of my uterus and ovaries and to see if there were any fibroids or cysts present.

Anyway, Clomid doesn't come without some side effects, but it does work for a lot of women in getting their cycles lined up right to make becoming pregnant more likely.

What Clomid does is trigger to your brain to send the hormones to drop the egg in a timely manner, or at least that's how the Dr. described it would work for me. I would assume that for women who are not ovulating (as is very common in LONG cycles), the pill works in the same way--- telling your brain to produce the hormones to bring on ovulation in a timely manner). The pills are only taken for 5 days at the beginning of your cycle, the days depend on your Dr., though. I took mine 3-7, others take theirs 5-9, and I've seen a few do 2-6.

(They also have a shot they can give you to induce your period. I know my Dr. said anything past 65 days is way too long and maybe you should call a Dr. to see about how they feel about getting that medicine to bring on your period. I want to say it's called Provera?? I've never had it, but came close in December... another 60 dayer.)

Best advice is to see a Dr. and get some answers. The decision as far as whether or not to take medication was difficult for me, but knowing my period has regulated tremendously in the first cycle is awesome!

I hope you find some answers soon, Oobie!!

(Another note; I believe most Drs. only prescribe Clomid for 3-6 cycles at a time, because it can have an effect on your uterine lining and some other issues... as for what a woman does to be "regular" and stay that way, I don't know.)

Oooh, just another plug for the TTC thread: we have a lot of recent graduates who've moved on to the Pregnant thread, so it's not moving nearly as fast as it once did! Come join us!!
 

oobiecoo

Ideal_Rock
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Italia- I will try to see a doc soon. My problem is that I don''t have a gyno, I had a really horrible one that I left and then last time I just went to the nurse practitioner for my yearly checkup. I need to find a good one in my area.

April- 6 months with no cycle at all? Hopefully this one doesn''t end up that long. When I do find a doc then I''ll ask about provera.

Fisher- So your doc didn''t find any signs of PCOS or thyroid, etc issues other than your ovulating late? My cycles are all over the place and get longer and shorter and longer again. I looked at a PCOS questionnaire and am convinced that might be my problem. Who knows though. I lurk on the TTC board once in a while but I don''t feel like I belong since I gave up on temping and my cm is almost nonexistent. I''ve had a really hard time lately because I know several people who have become pregnant... one girl didn''t even want kids, some aren''t in relationships... and I know I shouldn''t look at it like this but I can''t help but wonder why these women were given children and not myself. I don''t even want to go to sis-in-laws baby shower next month. *sigh* I''ve put off finding a new doctor because I thought my body would regulate itself after being off birth control for 6 months but its obvious now that its only getting worse. I''ll make an appointment soon.
 

fisherofmengirly

Ideal_Rock
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Apr 14, 2006
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Oobie,

I totally know the feeling of not wanting to find another Dr. That was part of where I was hung up, too. I didn''t want to deal with the moving of my records, but I knew I''d have to have a Dr. once I was pregnant anyway, so that was a sorry excuse, I came to realize. I think mostly I was scared to hear that something could be *wrong* with me and that I''d never be able to have kids. The thing is, though, that there are so many avenues to try now in the TTC world, that there is rarely a time when it''s not possible to become pregnant (not saying it doesn''t happen... but it''s pretty rare). It just takes some of us longer than others.

Maybe you can use all your friends being pregnant to your advantage and find out from them who their Dr.s are, if they like them, if they''d recommend them, etc. That''s how I ended up with my Dr. office, and so far, I''m pretty impressed.

I was really, really, really nervous to go in. I didn''t know what to expect, or what the tests would be, or how invasive it would, and mostly I was scared to know what was wrong. My ultrasound showed NO issues at all (and in the back of my head, this was my biggest worry, that I had horrible cysts and scarring or something of that nature, because I sometimes have painful periods, and I''ve heard that''s a "sign" of cysts and fibroids). My hormones came back fine, all within range. I did have one test that came up toward the higher end of "normal," but still normal and my Dr. said there was no reason at all to be concerned about it at this point.

As far as there being no problems with my tests/thyroid/hormones/glucose, but there still being a problem with when I ovulate... the Dr. said that sometimes the brain just delays sending the message (the pituitary gland is responsible for this) to the body to ovulate, and he said sometimes it''s just a matter of lack of communication between the two, and Clomid makes that connection stronger. Well, it looks like it''s worked for me, and I''m so glad I went. I wish I''d gone sooner!

I know you said you''re not charting right now, and I know it can be a little stressful to feel like you''re obligated to taking your temp at a particular time each morning, but it really does provide so much information, and it''s really great information for the Dr. to have, too. If I hadn''t been charting for 9 cycles, I couldn''t have gotten the Clomid yet; he would have told me to start charting and to come back in after a few cycles, so he could tell if I was ovulating or not on my own.

So, maybe you can see about getting into a Dr. to do the Provera (and if you get someone who tells you to wait months... keep calling around!! Ask your prego friends who they use and try them first), then you can start charting. Knowledge is totally power here, and I''m probably more hopeful now for a baby to come into our lives than I have been in months.

Good luck to you, and if you need support, you know where to find us!! For sure, for sure!
 

Anastasia

Shiny_Rock
Joined
Mar 23, 2005
Messages
451
Oobie,

I too had VERY irregular cycles all my life. When I was trying to get pregnant the first time, it was very difficult for me to even figure out if/when I was ovulating.

I waited a year to go to the fertility specialist. Everything checked out for both me and hubby. The doctor put me on clomid, and I got pregnant on my second cycle. (I did have an early miscarriage during the year of trying).

I now have three beautiful children. I got pregnant the second and third time without really trying. I was expecting to have to take clomid again, so while we weren''t actively trying yet, we were beyond thrilled to see those positive tests!

I was still irregular between pregnancies, but since I had my third child, I am finally regular, and have been for ten years.

I would go to the doctor now if I were you. Ask for recommendations from friends, and get the process started.

Good Luck to you (and Fisher too!). I think you''ll feel better if you get checked out by the doctor and find out what''s going on.
 

oobiecoo

Ideal_Rock
Joined
Sep 10, 2007
Messages
2,263
Fisher or Anastasia, I hope you don''t mind me asking but do you recall how much the clomid costs? It looks like my insurance won''t cover it.. or any other infertility tests or drugs. Does that seem to be standard or is my policy just weird?
 

Anastasia

Shiny_Rock
Joined
Mar 23, 2005
Messages
451
My clomid baby is now 14, so I can''t remember. I do think our insurance covered it at the time.

That stinks that it isn''t covered!
 

swimmer

Ideal_Rock
Joined
Nov 9, 2007
Messages
2,516
Oobiecoo,
Cost is going to depend on how your Dr. codes your prescriptions and tests. Irregular periods is a condition that is covered, that would be provera, etc. Coverage for fertility treatments varies from state to state. Clomid is not that spendy when paid out of pocket, around $100 it says online with generic being .5 that. Good luck and I hope you get an appt soon.
 

tiffanytwisted

Brilliant_Rock
Joined
Mar 28, 2006
Messages
792
Insurance seems to vary greatly in what they will cover when it falls under infertility. However, your doctor should at this point be calling it "irregular cycles" and not infertility, which the insurance should cover testing for.
On a side note, my clomid is $20 per cycle from Walgreens (my insurance does cover it but it says on the bag how much it would have cost).
I do think you should see your doctor asap in order to figure out what is making your cycles so wonky.
Good luck!!
 

fisherofmengirly

Ideal_Rock
Joined
Apr 14, 2006
Messages
3,929
Oobie,

What Tiff and Swimmer have said is right on (hi, girls!!). My Dr. has NOT labeled me with "infertility" and don''t let yours do it, either. I''m under the "irregular cycles" blanket and that will be really important if I were to change jobs, change insurances, etc.

My insurance does not cover Clomid. I have been prescribed the medication in monthly doses (5 a cycle) and it can be refilled 4 times. My Dr. visit was my co-pay charge only, no cost for the blood tests, no charge for the ultrasound. Again, this is because it was all "medically necessary" to determine why my cycles are so flippin long.

I would assume the cost would also be related to the dose. I''m on 50mg, the lowest dose. The lowest dose works for many people and carries less of the side effects along with it.

I called around to different places for the Clomid (by the way, the generic is the same as the brand name, called Clomiphene) and found that it''s ridiculous how widely costs vary on prescriptions, depending on where you get them filled! Anyway, the local mom and pop pharmacy that is next door to work would have been $31 and some change a month. Wal-Mart and grocery stores had it for $9 a month. I went with the $9 bucks a mont option.

So, as for out-of-pocket costs, it''s not bad. I had my co-pay for this visit and I''ll go back in June if I''m not pregnant yet, with husband, to get a referral for him to get checked out (they really don''t think it''s his issue, since my ovulation was so off, and when I told the Dr. my hubby would likely freak out over the sperm analysis, he cut him some slack and said it could wait til June. A lot of Drs. want to have the husband checked right away, before the Clomid is prescribed, though). The only other cost was the first month supply of Clomid. So, it''s not bad at all.

Again, best of luck to you, Oobie!!


**November, funny that your insurance covers Clomid. Mine doesn''t. Hmph! I''ve not checked to see what they cover as far as other interventions, but since I don''t think Paul and I will be going that route, I suppose it doesn''t matter. Still, if we wanted to do that, it would be really sad that insurance would have say over whether or not we could!**

**Anastasia, I had no idea that Clomid was on the market 14 years ago. How awesome that you''ve been able to not only have one child, but three! What a blessing!!**
 

fisherofmengirly

Ideal_Rock
Joined
Apr 14, 2006
Messages
3,929
I should also say, Oobie, that I was *freaked out* to go to the Dr. I just recently went, and I don''t know if I would have had the guts to go yet if not for the support of my husband and the women of the TTC thread. Not a lot of people in real life know about my TTC struggles (because let''s face it, it''s depressing at times and frustrating when everyone around you seems to be free of such difficulties). If it would help you, since I went to recently and remember the visit very well, I could walk you through what the appointment entailed.

I just really know how much it came as a relief to me when I went, and I wish that same relief to you. To know that there is a way to get past a roadblock is so empowering. It took us a few days of contemplating the effects of Clomid, and things like that, but it was nice just to know there was a non-invasive option out there to try.
 

Italiahaircolor

Ideal_Rock
Joined
Dec 16, 2007
Messages
5,184
Oobiecoo, I wouldn''t worry to much right now about the "what if''s" and I would focus more on taking it one step at a time. As someone who has been down the infertility road, there is a lot of things they will try on you before jumping into drugs or treatments, so you will have plenty of time to either save or switch insurances if thats you''re only hope.

First of all and most importantly, find a good OBGYN. You can contact your insurance to help you and many hospitals have women''s centers right on location. If it does turn out that you need to see a full blown specialist, the OBGYN will refer you one.

Secondly, relax. It''s not totally uncommon to skip/miss periods and it certainly doesn''t mean you "cannot concieve." Until you have all the facts, you''re just worrying yourself in a circle, which isn''t doing you or your period any favors.
 

Festy

Shiny_Rock
Joined
Oct 6, 2008
Messages
477
Hi Oobie,

I ditto others that say take it one step at a time, and make that first step calling for an appointment. Please don''t put this off. Once the appointment is made, you can (hopefully)relax and know that you''ll have answers soon. And please feel free to join us in the TTC thread whenever you like! I hope this gets resolved quickly for you.
 

NovemberBride

Brilliant_Rock
Joined
Jun 26, 2006
Messages
962
Hi Oobie,

I would ditto the last two posts and make an appt with an ob/gyn in your area.

I went off the pill in August and when I had not gotten a period in November, I went to my ob/gyn to get the provera. Apparently, for a lot of people, that one dose of provera kick starts your system and you''ll go back to getting somewhat normal cycles. However, it did not work for me so I ended up using Provera a few more times. I would suggest you start temping, because you will want to know if you are ovulating or not and it will help your doctor in determining what is wrong (if anything even is, some women just have abnormal cycles). I temped, so when I went back to my doctor after a few Provera cycles, I was able to tell her I did not ovulate. Based on that, she prescribed me Clomid. If I didn''t know whether or not I was ovulating, she probably wouldn''t have given me Clomid so early since they usually like you to wait a year of TTC before intervention. However, if you aren''t ovulating, there''s no way to get pregnant, so no reason to wait a year. My 1st cycle Clomid baby is due in November! My insurance did cover Clomid, but it was not expensive even without insurance. However, I think you are still a long way from worrying about Clomid.

I also wanted to point out that if I recall correctly, you are pretty young. My doctor did say that she was pretty sure I''d start ovulating again naturally within a year or so and that some women just take longer than others to regulate after going off the pill. Since DH and I are 30, we didn''t want to wait a whole year to find out I still wasn''t ovulating. I''m not saying you have to wait it out because you''re young, but if you don''t want to go the Clomid route or are worried about costs, it may resolve itself over time if you are willing to wait a bit to start a family.
 

oobiecoo

Ideal_Rock
Joined
Sep 10, 2007
Messages
2,263
Thank you all for your replies! Only my sis-in-law knows we are ttc to that doesn''t leave many people to talk to do about these things. I''d like to find an obgyn that I can stay with a while(I''ve been bouncing around these past couple of years) and I found a group that seem to be highly recommended. The only problem is that its about 45 minutes away from my home(possibly longer, depending on traffic) but is fairly near one of the nicer, newer hospitals that kind of specializes in women''s health. I found another practice that is closer to my home but the hospital here isn''t nearly as nice and I doubt they would travel to the other one. Is 45min-1 hour away too much for doctors appointments and possibly giving birth?

Fisher- Please do tell me what your appointment was like. I''m due for my yearly checkup so I was just going to discuss everything at that time... or should I make 2 separate appointments?
 

fisherofmengirly

Ideal_Rock
Joined
Apr 14, 2006
Messages
3,929
Oobie,

My original gyn was in NC, but when I moved, I knew I''d have to find another Dr. Well, I put it off. And off some more. I really liked my NC Dr, but knew that I wouldn''t be traveling 6 hours for appointments once I was pregnant, so I started asking friends (mostly at work, since we have similar insurance plans) about who they used, and then two co-workers got pregnant at the same time basically, and I kind of followed their pregnancies and listened to their complaints and comments about their Dr/group. Eventually, one of them won out. I started by calling the Dr. office and speaking with the receptionist, as that''s a big thing for me. If the person you call every time you need to schedule an appt. or have a question is going to be rude or snappy, I don''t need to bother with the group.

I knew I wanted a Dr. office that would have midwives, as I hope to be fortunate enough to have a low risk pregnancy that will allow for using a midwife for labor. So that was also a big contender for me.

I spoke with the receptionist multiple times, asking about the procedures for various exams/tests. By the time I''d charted three cycles (this would have been October), I knew I had delayed ovulation issues. She said that I would have to be established as a patient before they could do any testing on me, and said I could set up for a consult with the Dr., or I could come in for my yearly (I opted to have my yearly with my Dr. in NC, since I''m a pansy and just hate change).

Then my cycle that started in Oct. didn''t end until three days before January. I was heartbroken over it and had to face reality that this wasn''t going to just fix itself on its own (by that time, I''d been off the pill for a year... went off it 1/3/2008).

I called the Dr. office again in January and was told that I could schedule an appt. any time for a consult, and that I may also want to wait til I''m at the beginning part of a new cycle, so the Dr. can perhaps look at options to get my period coming regularly (I thought this was CLOMID talk... which scared me at the time).

A lot of my friends suddenly got pregnant and all the sudden my husband had emerged from the frightful but willing to try for a baby phase to the yearning for a baby like me phase, and that''s what it took for me to be ready to see what could be done to get the baby making rolling a little more smoothly.

So, I called on the first day of a new cycle (totally in tears, mind you) and the receptionist put me on hold and let me talk with a nurse who explained everything that they would do at the appointment: I had the option to have an ultrasound that day (to check for cysts, fibroids, uterus shape, ovary shapes, uterus lining), to have a consult with the Dr., and to complete blood work to see if any of my hormones were off. The nurse was careful to explain to me that there would at no time be any pressure for me to start any form of medication if I chose not to.

The nurse said that without the Dr. either examining me or an ultrasound being completed, I would not be prescribed any medications at the appointment, because they have to know what''s going on inside before they can determine the best actions to take. Every tearful question I asked was answered with patience and understanding.

Then I talked to the receptionist again and set up for an appt. the following morning (very excited that it could be worked in so short-notice!!).

The first thing was the ultrasound and the tech. was very friendly and professional and really made me at ease, well as at ease as you can be. I''d been warned by fellow TTCers here that an ultrasound is *internal* at this phase (as it would be for first ultrasounds during pregnancies), so I was prepared. It was almost painless, and I only yelped because the instrument was cold. It basically looked like a dildo of some sort. The process was short, and unlike what I thought, it is not shoved far into you and it totally was nothing of the horror I''d made it in my head! (In my opinion, a PAP is much worse!!) The tech. showed me my uterus, pointed out that it was of good shape and size, pointed out my lining was good (although I had no idea what she was showing me and she had to zoom in and point it out), and then showed me the ovaries, also stating they were good size. There were follicles growing and she pointed out that was good and that there were no cysts or fibroids. She freeze-framed several times and saved them to my file, and told me those would be the shots the Dr. would review. And then I was done. Got dressed again and went back to the waiting room.

Then another nurse called me, made me pee in a cup, took my weight and blood pressure, asked about any meds I was on (I''d already filled out their form/history information, but she asked again anyway), asked if there was any DV in my relationship with Paul, and then the Dr. came in. Said he was going to review my ultrasounds with me, looked at them, said they were good and everything looked well there, and asked if I''d been charting. I told him I had, told him how long we''d been off the pill, that I kept hoping I''d "self regulate," even though my cycles were long prior to going on the pill, and that sort of thing. He looked at my charts, commented that he was glad I''d been charting for so long (6 cycles at that point, but 9 months time) and stated that my charts appeared to show clear ovulation, but that there was always a time that my body geared up for ovulation, but didn''t do it. He said that he thought I''d definitely benefit from Clomid, went over the pros/cons, side effects, etc. and said he''d give me the prescription, and if I opted not to take it, let him know. He said he wanted me to come in the following day (cycle day 3) for bloodwork to see if my hormones were lined up good, and said that based on my charts and ultrasound, he felt Clomid would be very helpful. He stated that I could for sure do Clomid this cycle and if anything odd came back in my bloodwork, he''d let me know, if clomid wouldn''t be a good option for me in following months. He went into what I explained earlier about how Clomid works for people who ovulate late (brain signals, all that)...

He asked about Paul''s health, and a brief history of any illnesses, etc. Asked about the sperm analysis and I told him Paul would do it, but reluctantly. He said most men don''t volunteer for that, but he''d put off doing the referral until June, when he wanted to see me back if I was not yet pregnant.

He said to call the office when I''d confirmed ovulation with charting and stated that when I found out I was pregnant, to call the office right away to schedule either a beta or ultrasound to help determine if I was carrying multiple babies (there is a higher chance of this when using Clomid) as the sooner you catch it, the better for planning how to safely carry the babies.

Then I left and came back the next morning. Had 5 vials of blood drawn. Got the results a week later, everything was in range. The tested for all kinds of things, thyroid issues, glucose issues, hormones, FSH levels, LH levels, all of this is to see where the issue with late ovulation may be coming from. For me, it seems to be up in the air right now. Could be because my FSH is slightly elevated, but still not above the "normal range." Anyway, the Dr. said it''s not a problem as of now and if we don''t reach pregnancy soon, we''ll look at doing more testing to see if the number is rising, etc.

So, the only time I was undressed was with the tech, and it was really not painful, was not nearly what I''d made it up to be in my head, and after the appt, I felt *so* much better to know that I was looking at a much more positive outcome than I''d been worrying about for MONTHS.

Probably a longer explanation than you wanted, but I''m often long-winded. Any other questions you have, I''ll try to answer.

I really do think talking to your pregnant friends about who they''re seeing would be helpful!!

**about the distance to the Dr. office: my group''s office is about 20 minutes from my house, 45 from work, and the hospital they''re linked with is about 40 minutes from my house, an hour from my work. To me, it''s not that bad. I know that the hospital we chose was the best for us (awesome neonatal/birthing units), and is known as the "baby factory" because of the number of births they have there. I''m excited about it and have several friends who''ve had their children there, with no complaints. The hospital down the road from our house (10 minutes) is not where I want to have my baby, and this is part of why my group was chosen, because you also have to find a Dr. who will deliver where you want to have your baby.
 

oobiecoo

Ideal_Rock
Joined
Sep 10, 2007
Messages
2,263
I found 2 groups of doctors...

One has two locations which are very convenient for me but they are only associated with the hospital here in town which isn''t very nice.

The other doctor''s group recently moved and is about an hour away and only serves the hospitals that are an hour away.

Either way, the options aren''t good! I really think an hour of stressful driving to doctor''s appointments is too much for me if I *were* to become pregnant.

I went ahead and made an appointment with the first group but the soonest I could get in to see a doc and not nurse practitioner is May 6 so I have to wait until then. I wish there were other options in our town but there are only like 3 other individual doctors- one is horrible and I really feel more comfortable with a group than just a single doc.

Should I reschedule and just see the nurse practitioner?


Thanks for all of the info Fisher, this is all really helpful for when my appointment finally rolls around!
 

tiffanytwisted

Brilliant_Rock
Joined
Mar 28, 2006
Messages
792
Oobiecoo- Sorry that your options for doctors/hospitals isn''t any better. If it were me I would''t want to drive an hour either!
I know May 6 sounds like a long way off, but it''s really only 3 1/2 weeks, which I don''t think is too bad when you are getting in to see a new doctor. I think NP''s are fine, but if I were concerned about something being wrong, I would prefer a doc. But that''s just me. Good luck!
 

Octavia

Ideal_Rock
Joined
Oct 28, 2007
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2,660
Oobiecoo, where I live the wait is around 3-4 months for existing patients to get an appointment, and almost 6 months for new patients. You''re really lucky to live in a place where the wait is so much shorter! Since you have some big questions to ask, I think you should keep the appointment you already have -- like Tiffany said, it''s only a couple weeks away.
 

oobiecoo

Ideal_Rock
Joined
Sep 10, 2007
Messages
2,263
Tiffany- Yeah, I think I''ll keep the doc appointment since its more than just a yearly checkup. I don''t mind NPs but I saw one (in my general doctor''s office) for my last exam so I feel like I *need* to see a doc this time anyway.

Octavia- 3-4 months is a very long time! What do you do if you just need a follow-up appointment? Or if you get pregnant and need to schedule something every month? I hope they''d make an exception. I normally wouldn''t mind waiting... but its getting close to 100 days without Aunt Flow so I was hoping they could give me a shot or something. It''ll be my luck that I start the day of my appointment and will have to wait another month to get an appointment! lol
 

Octavia

Ideal_Rock
Joined
Oct 28, 2007
Messages
2,660
I think they make exceptions for emergencies/follow-ups/pregnancy, this is just for the regular yearly exam. I''m not sure what would happen if I was in a situation like yours and wasn''t an existing patient -- they''d probably find a way to make the appointment sooner, but PA is one of the worst states in the country for OB/GYN services. My doctor and her practice are awesome, but unfortunately they''re just too busy...but if you find a practice here that''s not busy, it''s a pretty clear sign not to go there!
 

fisherofmengirly

Ideal_Rock
Joined
Apr 14, 2006
Messages
3,929
Oobie,

Gosh, I''m sorry there''s not more options for Drs. in your area. Given your choices, I think the Dr. that''s an hour away would be my second choice, and if I wasn''t pleased with the Dr. office that''s closer, then I might consider switching over.

When you called to make your appointment, did you tell the receptionist that you needed to schedule your yearly exam, or did you explain that it''s also been so long since your period? I know all Dr. offices are different, but I would think something like that could be something that would warrant having an early exam, being "worked in," etc. Of course, if they don''t know this, than the May 6 appointment is totally reasonable. It is only a few weeks away, but I know that when you''re finally ready to get answers, you want them *now.*

As far as whether to see a Dr. or a nurse, with your situation, I''d advise the Dr. Reason being that a nurse cannot prescribe medications, cannot begin the process of ruling out any diagnoses, and things like that. Not saying you need medication; I hope you don''t, but I''d not want to have one appt. just to reschedule for another one later to get answers, when you could have gotten some kind of clarity and peace of mind from the first appt, if you''d had it with the best person to begin with. Know what I mean?

For what it''s worth, I''m proud of you for making an appointment. I know how scary it is and how it''s so easy to put off. I think you''ll absolutely feel better once it''s completed and you are beginning to taking the steps to learn more about your body''s system and how to help things along toward motherhood!
 

oobiecoo

Ideal_Rock
Joined
Sep 10, 2007
Messages
2,263
So I went to the doctor today! She was nice but seemed kind of rushed so I forgot to ask her a couple of my questions. I also found out she is married to my primary care physician so that was cool.

She diagnosed me with PCOS almost immediately. She ordered blood work and an ultrasound to see what is going on down there. She is also making me come in for a uterine biopsy in a couple of weeks. I''m scared to death and really wish I didn''t have to do it! Right now we are just approaching this as an issue with my irregular cycles and not as a fertility problem. I told her we *were* trying but now we are probably going to be holding off if it doesn''t happen in the next month or so. DH''s sis is planning on getting married in Greece next year and they''ve asked us to be the MOH and best man so we really want to be able to go and obviously can''t if I''m very pregnant.

Today has been such a stressful, painful, and emotional day for me... I went and got both the bloodwork (terrified of needles!) and the ultrasound (transvaginal) done today as well having my pap smear. I do feel better though knowing that I might get some answers when I go back in a couple of weeks.

She didn''t recommend a shot to start my periods again... she wants to wait and see how everything turns out first. She also recommended having a salivary hormone test done. I really want to do it but she said insurance rarely covers it and its not cheap so I''ll wait on that for now.

Now I''m off to research PCOS some more!
 

fisherofmengirly

Ideal_Rock
Joined
Apr 14, 2006
Messages
3,929
Oobie,

Wow, 5/6 got here fast, didn''t it?

I''m so glad you went to the appointment. The actual procedures weren''t as bad as you were imagining, were they? I know... I was so scared and then I was like, "That''s it? That''s an ultrasound??"

So, question if you don''t mind my asking: how did your Dr. determine that you have PCOS without having the results of the ultrasound yet (or did the Dr. have that info., because I read your post like you saw the Dr, then had the ultrasound) and without the blood results back yet? I''m just curious, because I thought PCOS sort of required having that information, not just a list of "symptoms" (ie: that list of things they say can occur when you have PCOS, painful periods, anovulation, overweight, excessive facial hair, that kind of thing).

When the tech. did the ultrasound, were any comments made? My tech explained everything, showed me the follicles (I was terrified they were cysts or fibroids), the lining of my uterus, all that kind of thing. Did you get any information about what the ultrasound revealed?

How long til you get to go back?

Any questions you have you can probably ask when they call in the next few days to week with the results of your blood tests. You can also ask that they fax you a copy of the bloodwork, so you can look it over. It''s *way* too much information, acronyms, and numbers to retain for long if you''re just jotting it down as they go over it.

Wishing good news for you, lady!!
 

mayachel

Brilliant_Rock
Joined
Mar 2, 2008
Messages
1,749
Hi Oobiecoo-I just want to chime in on the saliva test. while I don''t know specifically the one she had in mind for you, there is one put out by Gen-Test. I believe it costs about $100 out of pocket, and some insurance will cover it. Not bad. The best part is, it tracks your hormones over 30 days, vs. wherever you happen to be the day you have blood drawn. It is a much more accurate picture of your body''s cycle. Also, tread carefully with anyone who wants to label you as PCOS as it isn''t always a useful diagnosis-since we officially only know how to manage symptoms, but not what causes it or how to treat it. That diagnosis should be made by bloodwork...not by the presence of cysts on the ovary as shown via ultrasound. (Which used to be very common diagnosis-till they got wise that depending on when you look, many women will have "multiple cysts" that get reabsorbed by the body).
 

oobiecoo

Ideal_Rock
Joined
Sep 10, 2007
Messages
2,263
My doctor said you really only need 2 out of 3 main symptoms for it to be a PCOS diagnosis. I had two already (irregular cycles and acne) and that left the actual presence of cysts so I guess we''ll see about that in a couple of weeks. I know that the term is used fairly loosely... but I kind of HOPE that I really do have it. It would give me a reason for my irregular cycles instead of just having to wonder and worry. I know that probably sounds strange.

My ultrasound tech didn''t say anything during the procedure. She said she just takes the pics or whatever and gives them to the person who reads them and then they will fax the results to my doc. I was kind of dissapointed because I really wanted her to point out things on the screen for me. I''m going back on May 18 to discuss everything and have the dreaded biopsy.

The saliva test is several hundred dollars. There is a fee for the initial consultation, a fee for the test, and a fee for an office visit where we discuss the results. It is done next door to the office in (what i think is) a "rejuvenation clinic" or something like that. I think they do several procedures that aren''t neccessarily medical but are related. I believe my doctor owns or works closely with them. I wonder what she''d say about me doing something like the Gen-Test...?

I don''t know what to think if PCOS can''t even be diagnosed with an ultrasound... I assume there are other things that can be diagnosed that way so maybe she''s just trying to cover her bases. She did say that the bloating I reported makes her wonder about my ovaries so maybe that''ll show on the ultrasound.

So will PCOS definitely show up in bloodwork?
 

mayachel

Brilliant_Rock
Joined
Mar 2, 2008
Messages
1,749
So, I dug around for the current documented standard of care. Here is the gist of it:

Copyright © 2009 American Society for Reproductive Medicine Published by Elsevier Inc.

A principal conclusion of this report is that PCOS should be first considered a disorder of androgen excess or hyperandrogenism. The absence of clinical or biochemical hyperandrogenism in the untreated state, or in women under the age of 40 years, makes a diagnosis of PCOS less certain, regardless of the presence of ovulatory or menstrual dysfunction or the presence of polycystic ovaries. Overall, at the present time, in the Task Force''s assessment, women with oligo-amenorrhea and polycystic-appearing ovaries on ultrasonography but no evidence of hyperandrogenism may not have PCOS and should be considered as having a different disorder. However, the Writing Committee acknowledged that some of its members considered the possibility that there are forms of PCOS without overt evidence of hyperandrogenism (see Minority Report below), but recognized that more data are required before validating this supposition. Alternatively, the diagnosis of PCOS in women who have evidence of hyperandrogenism and polycystic ovaries, in the presence of ovulatory cycles, appears justified based on current data.

The aim of this report was to yield criteria based on currently available data to guide research and clinical diagnosis, and future investigations. In addition, the Task Force recognizes that the definition of this syndrome will evolve over time to incorporate new research findings. As our understanding of the molecular and genetic aspects of PCOS advances, it is unlikely that the definition of PCOS will remain unchanged, but will be expanded, contracted, or divided to incorporate new findings. The Task Force also recognizes that there may be a number of women who have features suggestive of PCOS, but who do not fulfill the criteria; clearly, these women and their symptoms should be treated accordingly, regardless of whether a diagnosis of PCOS is established or not. In addition, the Task Force recognizes that need to potentially modify the syndrome we define as PCOS as new data is made public. The Task Force felt that the diagnosis of PCOS should not be made lightly in view of its potential life-long health and insurability implications.

Finally, the Task Force recognized that the applicability or value of the specific definition of PCOS could vary according to the specific concerns being addressed in an individual study or by individual practitioners. For example, the definition proposed by the AE-PCOS Society relies heavily on the relationship of hyperandrogenism with metabolic dysfunction. Thus, if the ultimate clinical or investigational concern were to be the long-term metabolic or cardiovascular morbidities of patients with PCOS, defining the disorder using the NIH 1990 or the AE-PCOS Society criteria would seem more appropriate. If the interest were to determine the genetics underlying this complex trait, then a more restrictive criteria, such as the NIH 1990, or even more limited to one or tow specific phenotypes (see Table 1) may be necessary to maximize homogeneity of the population. Alternatively, if the interest is determining the risk for anovulatory infertility and or hyperstimulation during ovulation induction, then broader criteria such as that proposed by Rotterdam 2003 may be appropriate (298).

Although it may seem to some of the readers futile to propose a third criteria for defining PCOS, considering the current climate of controversy, it is important to note that we believe that the sole exercise of considering all published data and rationally presenting each of the different phenotypic features separately encourages the development of a clearer and more logical approach to uncovering the true nature of this pervasive disorder, based on the individual phenotypic features. This is in line with the emerging field of “phenomics,” increasingly used in the study of complex genetic traits such as the metabolic syndrome and lipodystrophy (299) and (300). Phenomics can be defined as integrated multidisciplinary research to understand the complex consequences of genomic variation through systematic evaluation and cataloguing of standardized phenotypes. This approach, and the use of increasingly sensitive phenomic tools, has the additional potential for uncovering “early” or “intermediate” phenotypes that may be valuable in establishing the natural history and predictability of the disorder. Alternatively, insensitive, qualitative, subjective, and vaguely defined phenotypes are important barriers to the development of a greater understanding of the molecular biology and genetics underlying these disorders, including PCOS (301).
Minority report

Notwithstanding the above recommendations, the Writing Committee acknowledged that some members of the Task Force disagreed with the strong emphasis placed on hyperandrogenism in the report. For example, these investigators recognized the high degree of inaccuracy of many currently and clinically available androgen assay systems. Numerous studies have shown that routine platform assays for T and other androgens do not correlate with gold standard assays such as equilibrium dialysis and LC-MS (302). The vast majority of clinical practitioners do not have access to reliable assays of T, the correlation between different commercial assays is extremely poor, and correction with measurement of androgen binding proteins such as SHBG does not overcome the errors introduced. Therefore, one of the cardinal measures on which the AE-PCOS Society definition is based is unreliable in standard clinical practice and may exclude patients with PCOS because the assay results are reported to be in the “normal” range, or alternatively may include unaffected patients because of overestimation of T levels. Even in optimal circumstances, the relationship between the ovarian production of androgens and their circulating levels is largely unexplored.

Use of hirsutism as an alternate to T is unreliable in East Asians and other ethnic groups, whereas reliance on the finding of hirsutism in women of particular ethnic groups may include women who do not have PCOS. The assessment of hyperandrogenism is therefore at least as subjective and unreliable as ovarian ultrasound scanning in the current environment. As a result, some women with PCOS, and who may be at risk for metabolic disturbances, may be missed by overreliance on measures of hyperandrogenism. Consequently, some members of the Task Force considered women with oligo-ovulation and polycystic ovaries, but without overt evidence of hyperandrogenism (phenotype J in Table 1) to most likely represent a form of PCOS, reverting the criteria to that already recognized by the Rotterdam 2003 definition. However, these investigators also recognized, as did the Task Force as a whole, that more data was required before validating this supposition. For example, a recent study noted that women with oligo-anovulation and polycystic ovaries, but without evidence of hyperandrogenism (n = 66) had basal insulin levels, the principal metabolic parameter assessed, similar to controls (n = 118) and lower than patients with hyperandrogenemia and oligo-anovulation, with (n = 246) or without (n = 27) polycystic ovaries, or those with hyperandrogenemia and polycystic ovaries but without oligo-anovulation (n = 67) (303).


I''m one of those women who believe you need to always be your own best advocate for your health. I also get that too much info at once can be overwhelming. The full research study is, long but interesting. If you think reading the whole thing would be helpful for you, say the word and I''ll cut and paste it.

My main goal of bringing it up is to comment on the importance of what is actually going on in your body, and getting your health care provider to see *you* vs. a diagnosis. Especially since it is a syndrome without clear treatment. It is better to look at the pieces of the puzzle, to see how best to help *you*.
 

mayachel

Brilliant_Rock
Joined
Mar 2, 2008
Messages
1,749
My other two cents on all this, is that I would recommend an endocrinologist over your gynecologist.

From the Androgen Excess Society

I think I have PCOS. What kind of doctor should I see to confirm that I have PCOS and to get the correct treatment?

There is no specific title that guarantees that a doctor is knowledgeable in the diagnosis and treatment of hirsutism and PCOS. Overall, there are less than 50 individuals in United States , and another similar number abroad, that are very knowledgeable about these disorders, both through their research and extensive experience. However, many board-certified reproductive endocrinologists are familiar with these disorders, and these physicians may serve as your first line of consultation. In addition, some board-certified medical and pediatric endocrinologists, and on occasion general gynecologists, internists, or family doctors, may have an interest in PCOS and hyperandrogenism, and may be comfortable treating you. In general, dermatologists are quite knowledgeable about treating the skin manifestations of PCOS, such as the hirsutism, acne or androgenic alopecia, but do not generally feel comfortable dealing with the hormonal and metabolic problems of PCOS. Androgen Excess Society
 
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