Do I really have PCOS?

[-Resque-]

I'll try to make a really long story as short as possible... last summer began a very long spell of bad health for me. I was getting married in September, and in July went to my doctor to see if there was anything I could do to change my cycle so I wouldn't have my period on my honeymoon. (If I'd only known then what I know now!) She prescribed me birth control, and instructed me to take 3 pills on the first 3 days and then take it one a day as normal. (So 9 pills in the first 3 days.) After the 4th day, I was having horrible joint pain, and cramping, and decided it SO wasn't worth it. I stopped taking it, and got my period a week later. This set off a cycle of BV (which I'd never had before) that wouldn't go away, yeast infections, and my period not coming for THREE MONTHS.

I went to see another doctor (a gyno), who gave me Prometrium to restart my period... only it didn't work. By this time, I was having a lot of pelvic pain, mostly in my butt. My doctor put me on a different brand of the pill, and this did start my period again after the first month. I was still having BV and pelvic pain though. I was given an ultrasound where the doctor found 2 cysts, one on each ovary. One was 4cm, one was 2cm. He didn't think they could be causing my pain, however, so he elected to do a laparoscopy. When I woke up, he said I had very mild endo, and PCOS. He said it would be very hard to conceive for me. I still had the two cysts, they had not changed at all. I was ultimately diagnosed with interstitial cystitis, and pelvic floor disorder, and started rehab, and meds. I decided, after two months of being on the pill, to stop taking it, and see what my body did. I got my period right on schedule, and have every month since. (October to January). At a follow up ultrasound in November, one cyst was gone, and the other had shrunk to 2cm.

I'm questioning my diagnosis of PCOS. Does two cysts equal PCOS? I started my period at 13 and have been getting it every 26-27 days ever since. I have never missed a period, and it has never been longer or shorter than 25-28 days. I am not overweight, and never have been. I don't have painful periods, other than some cramping the first day. Nothing seems to fit.

I got pregnant in January, on our second cycle of trying. We timed DTD to ovulation tests. It was a blighted ovum, sadly, but during an ultrasound there was the 2cm cyst still... and nothing on the other ovary. When I told my doctor I was pregnant he said I must have very mild PCOS. I don't even know what that means. I have never been offered further testing of any kind. My doctor did say he would put me on Clomid if I wanted... he was willing to do it before we even tried on our own! Is this normal?

Since the miscarriage, I have continued to get positives on ovulation tests midcycle. I have started temping, but this is the first month for it, so I don't have a coverline or anything yet. My OPK was positive yesterday, Day 12, but I don't have a temperature rise yet to indicate ovulation.

Sorry for the novel. This has been a very trying and heartbreaking 10 months for me.

[Jaimee]

Well, I'm not expert on PCOS (though I do have some friends who have it) so you might get some better answers in the Infertility forum.  But, from what I understand PCOS usually causes very long, wildly erratic cycles.  During these cycles you may have patches of EW CF as the body attempts to ovulate, but does not succeed for a while.  Often women with PCOS do eventually ovulate (though not always), but it can be very hard to see the temp spike to determine O day because of the erratic temps.  There are, of course, other symptoms of PCOS, as you mentioned and it doesn't sound like you have any of those either.  Ovarian cysts alone do not give you a diagnosis and generally resolve on their own in time.  Just from a layperson's perspective I would venture a guess that all your pain was from huge doses of hormones that your body was not at all used to and the accompanying hormonal imbalance that prevented you from menstruating for a while and probably caused the cysts.

I'm glad to hear that you are charting, because OPK's alone don't necessarily indicate ovulation.  They indicate that your body is gearing up to ovulate.  Plus, if you get a clear biphasic pattern then I would say you do not have PCOS or if you do, it's not going to really affect your chances of getting pg.  Endo is another matter, however.  Doctors are often quick to prescribe things like clomid and progesterone creams/supplements when you have a miscarriage.  These medications can help some women with recurrent m/c's have healthy pregnancies.  But I would say that you are not there yet and should not feel pressured into taking unnecessary medication.

Definitely continue charting and see what is happening with your normal, non-medicated cycle.  Keep us posted and ask for charting help if you need it!

Edited by Jaimee - 5/17/11 at 10:59am

[-Resque-]

http://www.fertilityfriend.com/home/28bbb7

Thanks for your reply. I'm hoping I had an ovulation spike last night... I guess I'll know in a day or two if my temps continue up. I didn't start temping until midcycle last month (which would have been after ovulation) and my temp at its highest was 98.84. So it's obviously dropping from SOMEWHERE and then rising again! This is my third cycle after miscarriage, and I'm hoping last month's short LP was a fluke. (Only 9 days). My gyno cauterized what little endo I had in October. He said the endo on it's own would not effect my fertility very much... it seemed the PCOS was a much bigger concern to him. I feel like if I got pregnant in January, and have ovulated for sure the last two months... it's pretty likely I don't have PCOS at all.

[Jaimee]

Well, definitely a possibility when combined with creamy CF to dry and +OPK to -OPK!  It will be exciting to see what your temp does over the next few days... hopefully climb higher so you can see a clear biphasic pattern, especially when you said you had temps last cycle in the high 98's.

[-Resque-]

I got my crosshairs this morning, and I am officially 3 DPO. :)

[Jaimee]

Looks good and very non-PCOS I might add. 

[herent]

Hi, well you might have PCOS and maybe not.  I have PCOS and have never had erratic cycles always 32 days on the dot, always get positive Opks around the time I would ovulate and I still don't ovulate as well as ovulatory looking bbt charts and no O.  Opks often don't work for women with PCOS because we can often have high LH levels frequently in a cycle.  PCOS has so many symptoms and not all women with PCOS have all of them, some only have a few.  Lots of PCOS women are not overweight or have problems conceiving.  I think It would be important to find out weather you do have it, because it may not be affecting your fertility but It can affect other aspects of your health later in life, specifically diabetes and heart disease, PCOS puts us at a higher risk.  PCOS also puts us at a higher risk for miscarriage.  I was diagnosed through ultrasound, blood tests including fasting glucose to find out if I was insulin resistant, also tested testosterone, and LH FSH ratio.  I really hope you don't have PCOS and it was just the pills that caused your hormones to be messed up,  because PCOS sucks .

[Jaimee]

Originally Posted by herent 

Hi, well you might have PCOS and maybe not.  I have PCOS and have never had erratic cycles always 32 days on the dot, always get positive Opks around the time I would ovulate and I still don't ovulate as well as ovulatory looking bbt charts and no O.  Opks often don't work for women with PCOS because we can often have high LH levels frequently in a cycle.  PCOS has so many symptoms and not all women with PCOS have all of them, some only have a few.  Lots of PCOS women are not overweight or have problems conceiving.  I think It would be important to find out weather you do have it, because it may not be affecting your fertility but It can affect other aspects of your health later in life, specifically diabetes and heart disease, PCOS puts us at a higher risk.  PCOS also puts us at a higher risk for miscarriage.  I was diagnosed through ultrasound, blood tests including fasting glucose to find out if I was insulin resistant, also tested testosterone, and LH FSH ratio.  I really hope you don't have PCOS and it was just the pills that caused your hormones to be messed up,  because PCOS sucks .

Thanks for posting as I'm certainly no expert on PCOS!    I'm curious, though, how did you get ovulatory looking charts if you weren't ovulating?  What was causing high progesterone mid cycle for a normal length LP?  Monthly cysts?

[tantylynn]

I received a PCOS diagnosis from my GP, and am having it confirmed with a fertility specialist. Everybody that has it is so different, it would be impossible to say whether or not you had it based only on symptoms like being overweight, and having cysts etc. I would suggest seeing a specialist to get a definite diagnosis.

This is what the specialist told me is required for a diagnosis of PCOS. Two of the following must be met:

- Polycystic Ovaries on an ultrasound scan (multiple small cysts in your ovary)

- Irregular cycles

- Elevated testosterone (usually manifested as acne, or excessive oil production on skin and/or hair)

I have all three, but she still wanted to do some more testing (hormonal assessment and another u/s scan) to rule out other causes. I am also normal weight and don't experience regular ovary pain. Well I do, but not in the ovary that is polycystic. I also have a complex cyst on my right ovary, which they're worried may be endometriosis. The tests I'm doing will also help them determine whether it's likely, and if it is her recommended next step is laparoscopic surgery like you had. (BTW - how was that? I'm terrified of doing it, should I be?)

Also, having PCOS doesn't necessarily mean that you don't O. I have been charting for 2 months and took my charts with me to my appt. One of my questions was if it was possible to have a sustained temperature shift and NOT be Oing? She said no, and that based on my charts I have been having ovulatory cycles. But that doesn't change my diagnosis of PCOS, unfortunately.

[tantylynn]

Ps. I'm confused...was your diagnosis the interstitial cystitis and pelvic floor disorder, and then later PCOS? Also, I don't think his willingness to give you Clomid was strange. I read somewhere that it takes people with PCOS an average of 3 years to get PG without any intervention...and then there's the higher risk of miscarriage. To me it would seem strange to have to wait the normal 6 months/1 year of trying before being given extra help. 

I'm sorry you've had to go through all this, and I hope you get it worked out soon! I'm sure you'll get all of the support you need here on MDC. Good luck and keep us posted!
 

Originally Posted by -Resque- 

I was ultimately diagnosed with interstitial cystitis, and pelvic floor disorder, and started rehab, and meds...

I'm questioning my diagnosis of PCOS...

When I told my doctor I was pregnant he said I must have very mild PCOS. I don't even know what that means. I have never been offered further testing of any kind. My doctor did say he would put me on Clomid if I wanted... he was willing to do it before we even tried on our own! Is this normal?

[-Resque-]

I was actually diagnosed with the PCOS first- in the search to find out what was causing my pain, two cysts were found via ultrasound- one on each ovary. When my gyno said he didn't believe those were causing my pain, we went to a laparoscopy, where the endo was found. When he didn't think THAT was causing my pain, he did a potassium sensitivity test, which diagnosed my IC. It was a rough 6 months.

Upon further ultrasound, in the following months, one of my cysts disappeared completely, and the other shrunk. I have not had any more cysts since those two. So definitely not "multiple small cysts." I also became pregnant on month 2 of trying. It did end in a medical miscarriage, as it was a blighted ovum. This is now month two after miscarriage of TTC. I also have never had irregular periods except for when the birth control drove my body out of whack. I don't know about elevated testosterone- I don't have acne, and my hair is not any more oily than usual, I'd say! I guess I will go to someone else for further testing, if it is important for my health for me to have a definite diagnosis. My gyno did not seem interested in further testing, and I don't believe he would give me Clomid now anyway as I had no problems conceiving the first time.

Thanks! 4 DPO and I'm hopeful!

Edit: Sorry, I just noticed you asked me about my lap. I was TERRIFIED going into it... I had been in so much pain for so long, and the thought of doing yet another painful thing to my body was horrifying. However... it turned out to be a breeze, no joke! They put me under, and the next thing I remember is waking up and them offering me IV pain meds, which I refused, as I wasn't in pain! When the anesthetic wore off, and I was home, I took a Percocet whenever the incision sites started to ache, which wasn't hardly at all! The worst pain was in my right shoulder from the gas they use! Definitely stand up and walk around, it will keep the gas from getting too bad. I had the surgery on a Friday and was back to work, in no pain by Monday. (Well, no pain but the pelvic floor pain, which you won't be experiencing!)

[brichole1214]

This is an example of a Polycystic ovary....there are SEVERAL cysts on the ovary every month and they are folicles that grow but aren't producing eggs....i had this problem and it took using medication to correct my problem...i got pregnant after 6 months of seeing my RE for it.  This is the tale tale sign of PCOS and  this is one of the things the doctor would be looking for on the u/s.  I would say if your ovaries didn't look like this then it's very unlikely that you have PCOS. It's also a good sign that the cysts went away.  I had a cyst that ruptured when i was 16 and at that time when i had a vaginal u/s done it wasn't there...but when i was 25 i went to my RE for my first u/s my ovary was COVERED in cysts.  I really hope that you ovulated and caught your eggie this month! Sounds like you've been thru a lot!!!!

[herent]

Originally Posted by Jaimee 

Thanks for posting as I'm certainly no expert on PCOS!    I'm curious, though, how did you get ovulatory looking charts if you weren't ovulating?  What was causing high progesterone mid cycle for a normal length LP?  Monthly cysts?

Good question I'm still wondering myself .  Possibly the cysts, I argued with the gyno who was giving me the P4 tests that my charts were showing O but she said definately no O. I was temping for 8 months and charts looked great, that was when I was ttc DS2.  Maybe Unruptured Follicle Syndrome, I read about this in Taking Charge of your Ferility.  My body is a mystery, it makes it hard to trust your body thats for sure :)
 

[Jaimee]

Originally Posted by herent 
Good question I'm still wondering myself .  Possibly the cysts, I argued with the gyno who was giving me the P4 tests that my charts were showing O but she said definately no O. I was temping for 8 months and charts looked great, that was when I was ttc DS2.  Maybe Unruptured Follicle Syndrome, I read about this in Taking Charge of your Ferility.  My body is a mystery, it makes it hard to trust your body thats for sure :)

That's really interesting!  Thanks for sharing!
 

[-Resque-]

I just got my BFP. I hope this sticks.

[Jaimee]

  Yay!!  Congrats!

[herent]

Congrats H & H 9 months :)

[monkeyscience]

Just saw this, and wanted to comment, though first... CONGRATS!!

Based on what you said, I think your doc is nuts for diagnosing you with PCOS, unless additional blood tests were done that you didn't mention. As Brichole mentioned, 2 cysts is definitely not a sign of PCOS! Like several people mentioned, PCOS is associated with multiple cysts per ovary. Lots of women have ovarian cysts from time to time, but with PCOS, you have lots of cysts, all the time. it is actually possible to be diagnosed with PCOS without the cysts if you meet the other two criteria Tantylynn mentioned. But your cycles aren't irregular, and it doesn't sound like your doctor tested your hormone levels, so he/she has zero basis for giving your a PCOS diagnosis. I would probably not worry myself further about it if I were you.

In response to a couple of other things mentioned: It's possible to have high testosterone without having acne, oily hair, etc. I am living proof. Although I had terrible acne when I was younger (and oily hair!), I've had very clear skin since around the time I went to college 9 years ago. I wouldn't have known about my high testosterone unless my doctor had done a blood test. In fact, my PCOS diagnosis was delayed by my first gyno looking at me and deciding I didn't "fit" the PCOS mold, and therefore not testing me. (Not overweight or with excessive body/facial hair.) A later doctor decided to run the blood tests based on my menstrual history, and found high testosterone and a wacky LH/FSH ratio. The RE I ultimately saw did an ultrasound and I had polycystic ovaries. So even though I don't look like a classic PCOS case (also not overweight/insulin resistant), I've still got it. And, for the record, my charts are very easy to interpret. I DO have a clear temp shift when I ovulate, or when I'm given Provera. The only thing "confusing" is the fact that I don't ovulate for months or years at a stretch, so if you're looking for a temp shift in that time, you won't find one.

Anyway, all that to say, PCOS presents in many different ways, but it doesn't sound like your doc has a clear idea of what PCOS is, based on the info you gave us. If you're still worried, though, once you're done with pregnancy/nursing, ask to have your testosterone and LH/FSH checked on Day 3 of your cycle. If those come back normal, you should be home free. :)

[-Resque-]

Thanks so much, everyone!

Monkeyscience, he did not give me any bloodwork. I will have my first ultrasound in 3 weeks, so I will see if that one stubborn cyst I had hanging around is gone. I'm guessing it probably will be by this time.