Natalee

Thank you all agin for your help with my OBGYN/ENDO question.

Here is a toughy:

I have been on BC for about 9 years now. I got off of them the first time about 7 years ago to see if my body could regulate itself naturally. The first month I was off I was admitted to the hospital with a huge ovarian cyst (I was told it was the size of a grapefruit). Luckily the cyst shrunk with the help of IV drugs and I was able to go home 2 days later. The doctor put me right back on the pill. Last December (3 months ago), I decided I wanted to get off the pill again so that my body could regulate itself for about a year before my husband and I started to try for a baby. However, like clockwork, a couple of weeks of being off the pill, I found myself back in the ER with 2 ovarian cysts (these were smaller). I was sent home with pain killers and told to follow up with my PCP in a couple of weeks. A few days later, the pain subsided. (Oddly enough though, I was about a week late starting my period and when I took a pregnance test it came out positive! However, when I went to the doctor the next day, her test (both urine and blood) came out negative. Later that day I started my period. They say there are no such things as false positives (I didnt misread the test either, this was one of those tests that says: PREGNANT or NOT PREGNANT). Odd.) Anyway, once again, it was recommended that I get back on the pill to reduce the risk of another cyst, so I did.
My question: I want to get off the pill and give my body a chance to work naturally. What do you think I should do?
*Note: Since I have been on the pill practically all through adolescence and my early 20's, I am not sure the pill has helped any of my PCOS symptoms except the cysts (I still have ugly acne, oily skin, a few chin hairs, hot flashes, night sweets, low libido, fatigue, mood swings, PMS, etc.

Thank you so much for your advice! You guys are AWESOME!!

AnotherDreamer

That is tough!
I think you should go see a reproductive endocrinologist (RE) to see what they say. Having cysts just appear like that, after only being off the pill for such a short amount of time...

There is such a thing as a false positive on pregnancy tests... they are just very rare. If you had one though, and don't think it was wrong... it may have been a chemical pregnancy. Many woman get pregnant, and lose it before their LP is up... and it just seems like a delayed or heavy AF.

Also, have you been checked for insulin resistance? You could start met. if you do, that may help... don't know how much.
Sorry I couldn't be much help.

I highly recommend checking with a RE, or gyn who has knowledge of PCOS (but a RE would be WAYYYY better, if you can do that).

Good luck.

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deb_e_deb26

maybe you could look into taking alternate remedies ( there is a section here on SC) and maybe try some different herbs etc, they might help you so you dont get the cysts and are able to come off the pill..a Naturopath often have different concoctions (sp?) to help this kind of things out also...

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Eva37

i dont know, sorry but i wanted to say hi and welcome to sc
eva

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PCOS, LOCAH, Lichen Planus, IBS, HS,alopecia - raised bp/ cholesteral. Wheat and dairy intollerance Meds: Spiro, Bendrofluazide, Amlodopine, Simvastatin, Met, Prednisolone, Colpermin multi vits,

Me - 41, hubby 36 son 11. Married 14 years

She is buffeted by the wind, but she does not sink.



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Natalee

You guys are so sweet for responding, thank you. I guess I am jumping the gun a little; my doc appointment insnt until next week. I am scheduled to see an OBGYN but I think I am going to call my insurance company and check if I can see an ENDO without a referral. It seems like most of the advice I have received recommends an ENDO. Again, thank you so much for your responses, it means A LOT!!

advising_lady

Welcome

For a lot of cysters, the pill is not recommended. My ob/gyn said he'd refuse to give it to me again if I asked because of my struggle to conceive DS. He said that it can actually result in additional infertility and mess up my hormones even more than PCOS already has.

Have you talked to your dr about metformin? When you were dxed, what blood tests did you have done? If you are even slightly IR, I'd recommend asking for metformin. It was a miracle drug for me! My cycles were 28-33 days long pre-pregnancy on metformin...when prior to that, I hadn't had a period in over 18 months!

Good luck!!

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Miles Robert born 11/18/07
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etuc

Welcome

I have had quite a few false positives, of course my false ones were ages ago so long ago that they didn't have home test available. I was told that the only really reliable test for me (back in the dark ages) was a blood test.

Hope you find a knowledgeable Dr to treat you.

Natalee

Dr Birnbaum,

Thank you so much for your willingness to chat with me. I just tried to call but your office is closed (I should have known that). Should I just leave a voice mail with my cell number?

Thank you again for your kindness.

Natalee

Natalee

Thank you again for your advice. I havent been tested for IR yet. As noted, my first doc appt is next week. I dont know if you can tell by taking your own blood sugar (my grandmother has type 2 diabetes and I use her machine sometimes just out of curiosity) but mine is usually around 80 about 2 hours after I eat. My grandmother thinks that is low but I am not sure what that means. I do know that I seem to get hungry pretty quick again after I eat. Do you think this is something I should mention to my doc at my appt?

Thanks!

JoyJoyJoy

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Natalee

Kim (Peyton's Momma),

I can't send PM's yet but I wanted to thank you for the PM you sent me yesterday. It is nice to know someone is looking out for us Newbies!
*If anyone knows Kim, please let her know this response is here. Thank you!

Also, thank you to all of you that had my back!!

Natalee

Neena

We were TTC last year and I developed cysts after 6 cycles off of BCP. I gained 20 lbs and developed a 3 cm cyst during this time; a blood test showed HCG close to 8 (checked only 5 days after ovulation), my primary care provider congratulated us and told us to go see a OBGYN (we were so excited for the 6 days I was "pregnant") but my GYNO's nurse (I went in to see her for a regular appointment and started bleeding heavily that day-CD 23) said it was a false positive, the HCG was caused by the cyst. Their standards were you're pregnant if you're HCG is > 10. She went so far as to say that with PCOS I never ovulate. Obviously, I did ovulate this yr (I started taking cinnamon, flax oil, fish oil, (in Jan 08, massaged castor oil on my ovaries from the day after my period to ovulation) and changed my diet and exercise regime, as no doctor would give me anything else (my cycles were 35-40 days) and got pregnant without meds. I wish I would have gotten Met to help shed a few pounds and help me ovulate and get pregnant earlier. My Endo (Andrea Dunaif in Chicago) said that if the Ovulation sticks went from no line-to light-to dark in the results area, then I do ovulate. As for different standards, my Primary care provider and OBGYN's failed to diagnose my HYPOTHYROID condition for at least a year because I was borderline (symptoms-inability to lose weight, cold hands and/or feet, fatigue)

Overall, I would say, save yourself the runaround with OBGYNs and go to an Endo, if you're not already (I assume thats who you are seeing next week). Insurance will cover it if they code it as PCOS treatment (not fertility treatment). They will do a detailed checkup. Hopefully you can get Met and those cysts don't come back.

I hope you get the proper treatment and do not have to suffer through this any longer. Best wishes.

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TTC #1 Jan 07; Chem. preg Jun 07
1/14/08: BFP-no meds (diet, cinnamon, flax oil+castor oil from CD 6)
1/18/08: Beta: 1157 (18dpo) Brown spotting; DX with Sub. Hypothyroid at 1st Endo visit
1/22/08: Beta: 6000 no HB no fetal pole
1/25/08: Beta: 13900 Red Blood-ER visit; US: no HB
1/28/08: Beta 14100 feared miscarriage
2/05/08: US: HB 128
2/19/08: US: HB 160
3/18/08: Nuchal test-ok; US: HB 170
5/20/08: Level 2 U/S ok; It's a Girl!! EDD now Sept, 15; baby 4 days behind.
orig. EDD: Sept. 25, 08

Neena

Also wanted to add if your OBGYN does not recommend you, push your primary care (although my Primary care doc did not recommend the ENDO when I saw her in Jan 07 and informed her that we're TTC, and I got DX with PCOS in 2003) to recommend treatment for PCOS. OBGYNs usually recommend REs and so they don't usually do it until its been a year of trying to conceive, whether or not you're already diagnosed. It is appalling how doctors are ignoring this disease and its long-term effects. I had to argue my case, and thats what it took for me to get a referral. When I spoke with my insurance I didn't even mention fertility.

Natalee

Neena,

Great advice! Thank you for taking the time to share your story with me and your suggestions to see an Endo. I think I am going to call and cancel my OB appt tomorrow and schedule with an Endo I found in my area.

Thank you again!!!

Natalee

Natalee

Neena,

I forgot....Congratulations!!!!

Nat