Trouble TTC

RE visit & PCOS question *potty mouth warning

Today I had my first RE consult; it went..ok. We went with this doctor first because although fertility is one of her concentration/specialties, she is a general endocrinologist-if that makes sense. We did this for two reasons, 1. I have other issues going on other than IF and want to figure those out as well. I didn't want to get stuck focusing on the cause of IF and push aside possible other problems that could be exacerbated if we are successful. 2. My insurance does not cover anyfuckingthing IF related. A visit to an RE in a fertility clinic/office is covered as long as we don't do anything but chat-just another $40 copay. We are already looking at paying around $2500 for DH's CT scan (thankfully that will go towards our his deductible) so we're really trying to find ways to get any IF testing coded and loop holed into counting towards my deductible. We will still have to pay for things oop but it will at least help with future expenses. We had hoped that going to this RE would help to set off less red flags to the insurance since she's not 'technically' labeled as an RE. oh and 3. the office is the same building as my OB..not all the way in freakin boston.
That all being said, this RE ordered some more b/w to check antibodies and progesterone, said that she really didn't see anything as far as a thyroid issue-didn't want to start me on anything 'just to try it out' for fear of adverse effects which I'm kind of thankful for, and suggested that I see an RE at a fertility clinic so that they could do further testing if they saw fit and work in conjunction with my OB. :(  
*mini rant* i am SO fucking sick and goddamn tired of doctors and ppl irl telling me to cut out stress because that's probably the cause. i'm stressed. i have been since before these things started happening and it's most likely not going away any time soon, so let's stop throwing that bullshit "diagnosis" at me just because you either have no fucking clue or are too lazy to put in the leg work to figure out what's really causing it all. I do yoga & work out, I get plenty of sleep, I eat pretty healthy, and I still feel like shit and can't get pregnant. I'm paying out my ass for specialist copays and testing, which is only adding to the stress, so please do your motherfucking job and not make me have to spoon feed you options as to what it might be after having to do copious amounts of research because you won't tell me anything other than, well X looked fine so no need to worry, oh you're still having symptoms? that's interesting.........and then not pressing the issue further. I feel like i'm working against every dr. i meet and i just want ONE to go "i'm sorry you're experiencing this, let's do everything we can to find the problem and get you a plan to fix it" wouldn't that be a beautiful thing!*end
SOOO...my PCOS question(s) is such: Is it possible to have PCOS and not have multiple cysts? How else would a Dr. diagnosis it without 'string of pearls' present? 
It seemed as though the RE was leaning towards this still being an option, but looked hesitant to mention it. She asked a bunch of related questions and it got me thinking that I should have asked if that was still a possibility. I hadn't really looked any further into PCOS after my first ultrasound because the Dr. told me it was unlikely since there was only one cyst showing and I hadn't been doing as much research then so I sort of moved on from it. 
Unfortunately, but optimisticly, moving on to RE at fertility clinic. and in the meantime any advice and help is greatly appreciated!

image
Me:26 DH:27
Married Oct 2011
NTNP for about a year before actively 
TTC since April 2013
Currently testing for infertility cause and hormone imbalance.
Infertility & ovarian cyst diagnosis: May '14
B/W: 'good', more ordered to check antibodies & progesterone
SA: Normal :)
U/Ss for cyst: who the f knows
DH's cat scan: showed encapsulated fatty growth; u/s: didn't really show much more
Breast Specialist: Most likely a large fibroid, but keeping an eye on it, repeat u/s every 6mos 
HSG: clear tubes, uterus is A-ok
WHAT'S NEXT: DH's consult with surgeon to discuss next step for growth, either biopsy or surgery~Big discussion with Dr. before any possibility of starting Clomid, since I'll want another u/s before and to be monitored and he doesn't seem into that. I had to force his hand just to order the AMH test so may be looking for another OB
~All welcome :) ~
Cycle 3 of OPK; Cycle 2 (this time around) of Temping

Re: RE visit & PCOS question *potty mouth warning

  • I'm sorry this doctor couldn't help you like you'd hoped. Hopefully the RE at the fertility clinic will be able to give you some answers and help you come up with a plan. Slight side-note, where are you located? In MA? If so, I could recommend my RE's office who has been great so far. They've got a few locations. Feel free to PM me.

    I don't have any PCOS advice, but I'm sure others will.

    Good luck!



     

    TTC since July 2012 
    BFP 5/22/13. Lap. to remove ectopic and dx with endo. 6/16/13

    RE consult: June 2014

    DX: FVL, endo, hypothyroidism, blocked left tube

    Oct. 2014: First treatment cycle: Clomid+trigger+IUI=BFN

    November 2014: Clomid+trigger+IUI again=BFP!

    BFP 11/28/14 MC discovered 1/14/15

    Blogging to stay sane

  • I'm so sorry you have to go thru this it sounds so frustrating. Well when I was diagnosed with PCOS. My RE received my bloodwork back before she did my u/s and based on my AMH being 11 she concluded I had PCOS. But I also had the pearl necklace as well. Good luck!
    Me: +35 DH: +35
    TTC: Since January 2013 
    DX: PCOS. Severe Endometriosis, Unicornuate Uterus w/only left tube and left ovary, Pedunculated fibroid (on the outside of uterus) and Anovulation. All conditions diagnosed 8/13
    TX: Metformin
    DH DX: MFI - low morphology, low motility
    Ultrasound shows both kidneys in spite of UU. 
    HSG showed clear tube on the left side. 
    Lap Surgery performed 1/9/14 to remove fibroid and endo (Stage 3)
    • IUI# 1 June 2014 started 100 mg of Clomid - 7dpiui Progesterone: 13: BFN
    • IUI#2  July 2014 started 100 mg of Clomid - 7dpiui Progesterone: 5.75: BFN
    • Natural Cycle - so shocked to be in 2WW - 7dpo Progesterone: 15.5: BFN
    • Working with new RE starting injectables in late August.
    • IUI #3 August 2014  w/ Menopur: BFN
    • Finally ovulating on my own!!
    Waiting to start IVF hopefully
    **********All Are Welcome**************
    3T January Siggy Challenge: New Year's Resolution
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  • I had PCOS but never a string of pearls. Do you have other signs such as hair growth on your chin or your lower abdomen?
    41 & single; DX:  PCOS
    TTC #1 with IUI and donor sperm
    First IUI May, 2014, Clomid + Trigger = BFN
    Second IUI July, 2014, Clomid + Trigger = BFN
    Third IUI Dec, 2014, Femara + Follistim + Trigger = BFN
    Fourth IUI Feb 2015, Femara + Follistim + Trigger = C/P :(

  • That all sounds so frustrating!!  Yes it is possible to have PCOS without the string of pearls.  I did a lot of research when I was diagnosed, and although I do have a ton a cysts, you don't need to have them to have PCOS.  They can diagnose through bloodwork, usually the LH/FSH ratio is off and testosterone and AMH can be high.  Also, physical symptoms play a part (weight, extra hair growth, irregular cycles).  It's really a combination of several factors.  Hope that helps.  Good luck with your testing, I hope you get to the bottom of it quickly!
    Me: 28 DH: 30 Married 3 years
    Stopped BC 7/13 Officially TTC 9/13
    First RE appt 3/28 Dx- non-IR PCOS
    No response from Clomid 50mg or Femara 5mg
    Clomid 100mg- BFP! Beta #1 15 DPO 169, Beta #2 17 DPO 340
    EDD: 4/15/15



  • I'm sorry you aren't getting straight answers from your doctors. I hope the RE will really be able to help you more. My re mentioned that PCOS should have 2 out of 3 factors to be diagnosed. One was hormone levels (LH/FSh), second was symptoms, and I think the third was anovulatory/irregular cycles but I have to double check. Hopefully you get some answers soon! and I agree, the "stress" thing is so annoying! it's just another way to make it feel like it's my own fault for having trouble, I hate it!
    ***********siggy warning **********



    Me: 26 DH: 27
    TTC #1 Since Aug. 2013
    Cycle 1: O CD 25=bfn
    Cycle 2: O CD 48=bfn
    Cycle 3: Anovulatory/Provera =120 days!
    Cycle 4: Anovulatory/Prometrium=127 days! RE consult 6/16
    Me: Anov/poss. pcos?  HSG=normal/SA= Normal 
    July/Aug. 2014= Femara+trigger+TI=BFP!!
    Beta #1@ 16dpo=626!! Beta #2=1510
    Ultrasound @ 5w6d=heartbeat at 110!
    Ultrasound @ 6w6d =heartbeat at 131!


    Pregnancy Ticker

    image
  • Gaaaaah!!!  I hate the "stress" diagnosis.  Such a bullshit cop-out.  Also, I have read that only extreme stress can impact fertility but that there are no studies proving it is a cause.  Our bodies get used to a certain amount of daily stress, so only huge spikes in stress patterns would have negative effects.

    I don't have any advice to offer on PCOS, just wanted to express my sympathy with that frustrating (and stressful!) non-diagnosis.  GL with the next RE.  FX for some real answers soon!

    -----------------------------------SIGGY WARNING-------------------------------------


    Me: 31| DH: 36
    TTC #1 Since 07/2010
    DX: Unexplained Infertility
    TX: 
    IUI #1 on 7/3/14 100 mg Clomid + Ovidrel + IUI (44 million sperm, 1 dominant follie) = BFN
    IUI #2: on 7/28/14 100 mg Clomid + Ovidrel + IUI (23 million sperm, 2 dominant follies) = BFN

    IUI #3 on 8/22/2014 100 mg Clomid + Ovidrel + IUI (53 million sperm, 2 dominant follies)= BFP MMC @ 7weeks


  • I'm sorry you aren't getting straight answers from your doctors. I hope the RE will really be able to help you more. My re mentioned that PCOS should have 2 out of 3 factors to be diagnosed. One was hormone levels (LH/FSh), second was symptoms, and I think the third was anovulatory/irregular cycles but I have to double check. Hopefully you get some answers soon! and I agree, the "stress" thing is so annoying! it's just another way to make it feel like it's my own fault for having trouble, I hate it!
    This.

    A person does not need to have all of they symptoms to have the diagnosis.  A syndrome is different than a disease in that a syndrome is a cluster of symptoms.  Read this for a very doctor-y explanation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1069067/      This mostly talks about the high androgen levels and anovulation.  For a less doctor-y explanation, read this: https://www.medpagetoday.com/Endocrinology/GeneralEndocrinology/42519  This talks about having two of three characteristics: excessive androgen production, anovulation, and polycystic ovaries.

    All that to say: yes, you can have PCOS without multiple cysts.  Sorry for the lengthy explanation, but I like being armed with research materials.

    Me: 28  MH:35

    Married September 2012. TTC since September 2013

    June 2014 - Dx w/ significant PCOS and referred to RE.

    July/August 2014 - Testing complete: Testosterone & AMH very high, FSH slightly high, Vitamin D low, tubes and lining all lovely. DH SA: A+

    Cycle 1 (Nov 2014): 2.5 mg Letrozole/Ovidrel/TI = BFN

    Cycle 2 (Dec 2014): 5 mg Letrozole/Ovidrel/TI - BFN

    Cycle 3 (Jan 2015): 5mg Letrozole/Ovidrel/TI - BFN

    WTF consult scheduled for 1/29

  • so when i originally went to the OB about 12+months ttc and some weird hormonal symptoms she immediately suspected pcos and was the one who ordered my first u/s which showed only 1 (which i'm still in the midst of figuring out what went wrong with those results, but i digress). i had assumed most of what i was experiencing was thyroid related since i have a strong family history of hypothyroidism. i mentioned a few things that seemed to cross over to gyn issues and then she started asking me about other things and that's when i realized it could all be related. the main causes for her concern were: heavier onset periods that are now shorter in length than they have been in the past and a double period in may/june; acne throughout cycle; possibly not ovulating-looking more into this since i seem to have fairly reg cycles, but have no confirmation that i ever have; hair on head and eyebrows thinning, but hair on body getting darker-RE today checked lower abdomen and I was like "wouldn't know if it's growing more since i always shave from basically my clavicle down." lol; and my depression has been worse over the last year or so and really bad in the last 5 months. Even though my glucose, cholesterol, and blood pressure all seem fine; I have mentioned that I've been craving sugar lately which is abnormal for me since i'm all about salt. this seems to lean a little towards insulin resistance to me, but hey, i'm no dr. ;) i just looked through my last b/w results and looked up average levels for ppl with pcos..the only thing that seemed off was my DHEAS which is 246.8 ug/dL. And I don't have anything on AMH?? 
    image
    Me:26 DH:27
    Married Oct 2011
    NTNP for about a year before actively 
    TTC since April 2013
    Currently testing for infertility cause and hormone imbalance.
    Infertility & ovarian cyst diagnosis: May '14
    B/W: 'good', more ordered to check antibodies & progesterone
    SA: Normal :)
    U/Ss for cyst: who the f knows
    DH's cat scan: showed encapsulated fatty growth; u/s: didn't really show much more
    Breast Specialist: Most likely a large fibroid, but keeping an eye on it, repeat u/s every 6mos 
    HSG: clear tubes, uterus is A-ok
    WHAT'S NEXT: DH's consult with surgeon to discuss next step for growth, either biopsy or surgery~Big discussion with Dr. before any possibility of starting Clomid, since I'll want another u/s before and to be monitored and he doesn't seem into that. I had to force his hand just to order the AMH test so may be looking for another OB
    ~All welcome :) ~
    Cycle 3 of OPK; Cycle 2 (this time around) of Temping

  • Based on the hair on head thinning and body hair darkening, it sounds like you have hirsutism which is caused by high androgen levels.  The acne also points to high androgen levels.  The second indication could be anovulation.  I know you said you have no confirmation of ovulation but have fairly regular cycles.  Have you temped to try to pinpoint ovulation or no?  My AMH level was through the roof (I was told that 3 is around normal; my level was 46.2) so my doctors are thinking I may have never ovulated before.  Keep in mind that the AMH does give an indication of you ovarian reserve, but it is only an indication (i.e. not a hard count of your eggs).

    Me: 28  MH:35

    Married September 2012. TTC since September 2013

    June 2014 - Dx w/ significant PCOS and referred to RE.

    July/August 2014 - Testing complete: Testosterone & AMH very high, FSH slightly high, Vitamin D low, tubes and lining all lovely. DH SA: A+

    Cycle 1 (Nov 2014): 2.5 mg Letrozole/Ovidrel/TI = BFN

    Cycle 2 (Dec 2014): 5 mg Letrozole/Ovidrel/TI - BFN

    Cycle 3 (Jan 2015): 5mg Letrozole/Ovidrel/TI - BFN

    WTF consult scheduled for 1/29

  • Based on the hair on head thinning and body hair darkening, it sounds like you have hirsutism which is caused by high androgen levels.  The acne also points to high androgen levels.  The second indication could be anovulation.  I know you said you have no confirmation of ovulation but have fairly regular cycles.  Have you temped to try to pinpoint ovulation or no?  My AMH level was through the roof (I was told that 3 is around normal; my level was 46.2) so my doctors are thinking I may have never ovulated before.  Keep in mind that the AMH does give an indication of you ovarian reserve, but it is only an indication (i.e. not a hard count of your eggs).
    I have temp'd before but halfheartedly and this time around i am only in the beginning of my second cycle charting. my last one did not show a clear bi-phasic pattern, but I've also heard that you can show 'accurate temps' and still not ovulate. 

    can someone put some general info about AMH in layman's terms for me? 
    I am going to ask them to add that to this last b/w order.

    Thanks so much for all the wonderful advice & help so far! Y'all are the best!
    image
    Me:26 DH:27
    Married Oct 2011
    NTNP for about a year before actively 
    TTC since April 2013
    Currently testing for infertility cause and hormone imbalance.
    Infertility & ovarian cyst diagnosis: May '14
    B/W: 'good', more ordered to check antibodies & progesterone
    SA: Normal :)
    U/Ss for cyst: who the f knows
    DH's cat scan: showed encapsulated fatty growth; u/s: didn't really show much more
    Breast Specialist: Most likely a large fibroid, but keeping an eye on it, repeat u/s every 6mos 
    HSG: clear tubes, uterus is A-ok
    WHAT'S NEXT: DH's consult with surgeon to discuss next step for growth, either biopsy or surgery~Big discussion with Dr. before any possibility of starting Clomid, since I'll want another u/s before and to be monitored and he doesn't seem into that. I had to force his hand just to order the AMH test so may be looking for another OB
    ~All welcome :) ~
    Cycle 3 of OPK; Cycle 2 (this time around) of Temping

  • LindseyM2012LindseyM2012 member
    edited July 2014

    Here is a pretty good explanation of the AMH test and levels.  I hope this is helpful! 

    https://www.advancedfertility.com/amh-fertility-test.htm


    I have also had a difficult time temping because I often don't get several hours of uninterrupted sleep.  I have also read that your temps can be misleading if there is a hormone imbalance, but I am not confident enough to speak on that.  I wonder if temps can look like a "normal" cycle but the person not ovulate simply because of elevated androgen levels......????  A good question for the RE.

    Me: 28  MH:35

    Married September 2012. TTC since September 2013

    June 2014 - Dx w/ significant PCOS and referred to RE.

    July/August 2014 - Testing complete: Testosterone & AMH very high, FSH slightly high, Vitamin D low, tubes and lining all lovely. DH SA: A+

    Cycle 1 (Nov 2014): 2.5 mg Letrozole/Ovidrel/TI = BFN

    Cycle 2 (Dec 2014): 5 mg Letrozole/Ovidrel/TI - BFN

    Cycle 3 (Jan 2015): 5mg Letrozole/Ovidrel/TI - BFN

    WTF consult scheduled for 1/29

  • So sorry about your poo-poo insurance and doctors who subscribe to myths about fertility. :(

    It sounds like an RE is just what you need. I'm sure they will do the testing that you're hoping for, and won't need to rely on you to come up with possible ideas! And I couldn't imagine an RE blaming stress, unless a woman is underweight and such an extreme exerciser that the physical stress could be reducing her hormones and preventing ovulation. :)

    Your RE can look at all the factors to diagnose PCOS. But realistically, the treatment may be the same either way, as they like to give fertility meds to women who ovulate anyways but are infertile. 

    The one thing only you can do that can make a big difference toward getting an accurate diagnosis and treatment plan faster is to temp really faithfully for a cycle or two or three. My clearly PCOS ovaries somehow have O'ed every cycle I temped (a lot of them) for the past 6 years, so that was helpful info to the RE! :)

    January 3T Siggy Challenge - New Year's Resolutions
    image
    imageimage

    Me (29), DH (30) TTC actively 54 55+ cycles | All BFNs
    MFI (low everything) | Endo Stage 1 & Stenotic Cervix (treated) | PCO
    Married - July 2008 | Started TTC - Jan 2009RE Visit #1 - Mar 2014 
    IUI #1 ICI #1 - June | IUI #1.1 Laparoscopy - Aug
    IUIs #1.2, 2, 3 - Sept, Oct, Nov (Letrozole) - BFNs 
    IUI #4 - Dec (Bravelle) | IUI #5 - Dec/Jan (Bravelle) - 5 follies + TI - BFNs
    IUI #5.1 - Jan (Bravelle) Cancelled 
    Planning to start IVF in March!
    ***All Welcome***
  • Thanks LindseyM2012, that was very helpful! I just called the RE's office to ask if they could add AMH to the b/w order. fingers crossed.


    image
    Me:26 DH:27
    Married Oct 2011
    NTNP for about a year before actively 
    TTC since April 2013
    Currently testing for infertility cause and hormone imbalance.
    Infertility & ovarian cyst diagnosis: May '14
    B/W: 'good', more ordered to check antibodies & progesterone
    SA: Normal :)
    U/Ss for cyst: who the f knows
    DH's cat scan: showed encapsulated fatty growth; u/s: didn't really show much more
    Breast Specialist: Most likely a large fibroid, but keeping an eye on it, repeat u/s every 6mos 
    HSG: clear tubes, uterus is A-ok
    WHAT'S NEXT: DH's consult with surgeon to discuss next step for growth, either biopsy or surgery~Big discussion with Dr. before any possibility of starting Clomid, since I'll want another u/s before and to be monitored and he doesn't seem into that. I had to force his hand just to order the AMH test so may be looking for another OB
    ~All welcome :) ~
    Cycle 3 of OPK; Cycle 2 (this time around) of Temping

  • I'm frustrated for you.  You have PCOS without the cysts, I have never had a cyst, but have the syndrome symptoms: acne, excess hair in unwanted places, overweight, no periods without medical intervention.  I do not have the insulin resistance (I almost wish I did as it would at least give a better answer of why my body does what it does).  My testosterone was elevated, that's the only abnormal lab I've had so far.  Good luck as you go through your testing!!

    image
    Me: 30, PCOS-non IR, Annovulatory; DH: 31, SA normal :)
    Testing Completed! HSG Clear, Ovarian Reserve score 17, Elevated Testosterone, everything else normal so far
     Clomid 150mg + HCG + IUI #1 May/June 2014 (BFN)
    Clomid 150 mg + HCG + IUI #2 July 2014 (BFN)
    Femara 2.5mg + Estrace + HCG + IUI #3 Cancelled d/t no response
    Moving on to IVF with ICSI after break to lose weight.
    image

    My Ovulation Chart
  • Katherine0Katherine0 member
    edited July 2014
    I think it is possible to have PCOS and not have cysts. My first ob told me I had it without even doing an ultrasound, which she was worthless so I switched, but then I went to the one I have now, and she told me she didn't see any cysts. BUT everything I've seen says that there are a bunch of "symptoms" of PCOS and I basically have everyone. If it was my guess, Like everyone else, I would say ya it's totally possible. I wish it was that easy to talk to everyone about IF. Everyone says "relax" bla bla bla. Doctors should know better.
  • Sorry to bring this post back, but to echo what others have said, you do not need ovarian cysts to be diagnosed with PCOS. You just need elevated male hormones (testosterone/DHEAS), ovulation issues, and you need to rule out other potential hormonal issues. My endocrinologist recommended hormone.org for info (she said it's run by the Endocrine Society).

    I'm sorry you're going through all this stuff. I just got officially diagnosed with PCOS 2 weeks ago. It sucks.

    And @BananaPancakes02, your post here sounds like I could have wrote it. It makes me feel a bit better to know there's someone in the exact same scenario.

    Me: 27, PCOS. DH: 28, TBD.

    Married since August 8, 2009

    2009-2011: TTC 12+mo. Irregular periods, normal blood work.
    2012 - 07/2013: Baby plans on hold. Back on BCP.
    07/2013 - 06/2014: Off BCP to try again. Completely absent periods. High testosterone. Referred to Endocrinologist.
    07/24/2014: PCOS diagnosis. Lifestyle changes before determining next steps...
    08/16/2014; CD1!! (Provera)
    08/26/2014: RE Consultation. Plan is to continue weight loss, prescribed levothyroxine (50mcg) for slightly high TSH.

    image

  • Ashlee8809- thanks for the added advice & support, definitely gives me more motivation to pursue this further!
    image
    Me:26 DH:27
    Married Oct 2011
    NTNP for about a year before actively 
    TTC since April 2013
    Currently testing for infertility cause and hormone imbalance.
    Infertility & ovarian cyst diagnosis: May '14
    B/W: 'good', more ordered to check antibodies & progesterone
    SA: Normal :)
    U/Ss for cyst: who the f knows
    DH's cat scan: showed encapsulated fatty growth; u/s: didn't really show much more
    Breast Specialist: Most likely a large fibroid, but keeping an eye on it, repeat u/s every 6mos 
    HSG: clear tubes, uterus is A-ok
    WHAT'S NEXT: DH's consult with surgeon to discuss next step for growth, either biopsy or surgery~Big discussion with Dr. before any possibility of starting Clomid, since I'll want another u/s before and to be monitored and he doesn't seem into that. I had to force his hand just to order the AMH test so may be looking for another OB
    ~All welcome :) ~
    Cycle 3 of OPK; Cycle 2 (this time around) of Temping

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