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Thread: PCOS and the pill

  1. #1

    Unhappy PCOS and the pill

    I'm new to the site, so excuse me if I'm in the wrong forum.

    I've been on the pill almost continuously since I was 18, or the last 9 years. At one point, when I was 21, I decided to try going off the pill (I was worried it was affecting me emotionally). I got horrible facial and body acne, and my periods became very irregular. I was living in Germany at the time, and the gynecologist I saw (an American) did an ultrasound and diagnosed me with PCOS. She said it was nothing to worry about, but that I should go back on the pill as a way of treating it.

    Now, all these years later, I really want to go off the pill (for pretty much the same reasons, but including an ever-decreasing sex-drive now), but I'm worried about the PCOS and the side effects. Does anyone have any light to shed on this? Any advice?

    Thanks
    Julia in NY

  2. #2
    Registered User locagirl will become famous soon enough locagirl will become famous soon enough locagirl's Avatar
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    Hey Julia

    I'm 22 at the moment and the pill is the only medication my GP and endocrinologist have me on at the moment. I'm not really in the same situation cos I never had any period irregularities or probs with acne, though I have a hormone imbalance and excess hair probs (which is what the pill is supposed to correct and I don't seem to see much difference when I go off it). Have you thought about going to a doctor to find out if there is an alternative medicine you can take?

    I guess you could try going off it for a while to see what happens. My friend has had acne probs with PCOS and found that a doctor could prescribe some sort of cream for it (she has since been put on the pill as well to regulate her irregular /heavy periods, but the cream fixed the acne problem before she started taking the pill). Have you had any blood tests done to determine whether the acne is a result of a hormonal imbalance?
    Age: 23
    DX: 2004
    Medication: Estelle (BCP), Vit. B, Spiro
    Symptoms: High cholesterol, Hirsutism, Cysts, Weight probs
    Height: 167 cm
    Exercise: 40-60 mins a day 4-6 days a week



    Start Weight (March 06): 187 pounds/85 kgs
    Current Weight: 165 pounds/75 kgs
    Weight Goal: 154 pounds/70kg
    (143 pounds/65kg if I'm lucky :p )

  3. #3
    Registered User Kikibee is just really nice Kikibee is just really nice Kikibee is just really nice Kikibee is just really nice Kikibee is just really nice Kikibee's Avatar
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    Hi Julia,
    I was diagnosed with PCOS many years ago, when I was around 18 years old. The solution at the time was to go on birth control to control the symptoms, which I did. Several times over the years I asked if anything needed to be done to recheck the PCOS, etc and was told that if I wasn't having any additional problems and as long as I didn't want to try to get pregnant, the best solution was to stay on the BCP.

    It wasn't until just over a year ago ( 15 or so years since I went on the BCP) when my DH and I decided we wanted to try to have a baby that I even attempted to come off the BCP. Within a few months the signs of PCOS started to come back, and as you might have figured out from my signature, we are still struggling with infertility.

    While I still feel that to a certain extent BCP were a good treatment for me, in retrospect there are a few things that I would have done differently.
    I would have learned about PCOS in the way that I started doing a year ago. When I was first diagnosed I was told I had a "testosterone imbalance" and at 18 years old I don't think I every fully understand what this whole thing was about. When I asked the doctors over the years, they didn't seem worried, so I didn't worry. I wish I understood the implication on fertility most of all, but also about the whole insulin connection and alternatives for treating the disease.

    There is SO much more known about PCOS now as compared to then. I definitely would say educate yourself about everything related to the disease and then discuss treatment options with your doctors based on your individual situation.

    Hope that's the kind of insight you were looking for.
    Liz

    2 clomid cycles, 3 stim/IUI cycles, 5 fresh IVF cycles, 5 FETs
    3 chemical pregnancies and 2 miscarriages

    1 Beautiful Baby Boy




  4. #4

    Question insulin?

    Locagirl and Kikibee,

    Thanks so much for your replies. Locagirl, I have not had any blood tests done recently. Kikibee, that sounds disturbingly familiar. One other strange thing - recently, although I am still on the pill, my weird acne has started coming back, although a bit milder than that last horrible time. At the same time, for the last several months, my urine is frequently cloudy. It doesn't seem to correspond to when I am dehydrated. I looked it up online, and one of the things I found was that this can sometimes be experienced by diabetics. You mention insulin being related to PCOS, so now I'm wondering if there isn't some connection there. (I'm also currently being tested for various parasites, since I spent the last several years living in West Africa).

    Have you (or anyone else) experienced this? Any insights? I'm concerned as well because in less than three weeks I will be leaving to work overseas for 3 months, and will have limited access to medical care.

    worried
    julia

    and PS, sorry to be so self-focused - Kikibee, I am sending you fertile thoughts and a big hug, and Locagirl, I'm sending you "of-course-I'd-rather-have-a-banana-than-ice-cream" thoughts! ;-)

  5. #5
    Registered User locagirl will become famous soon enough locagirl will become famous soon enough locagirl's Avatar
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    Sorry - no experience with what you've described, but thanks for those thoughts - *drools* ice cream....no! bad! bananas good!

    Don't apologise for being 'self-focused'!! These are things you want to ask about and that's what this site is for! Good luck with finding more answers
    Age: 23
    DX: 2004
    Medication: Estelle (BCP), Vit. B, Spiro
    Symptoms: High cholesterol, Hirsutism, Cysts, Weight probs
    Height: 167 cm
    Exercise: 40-60 mins a day 4-6 days a week



    Start Weight (March 06): 187 pounds/85 kgs
    Current Weight: 165 pounds/75 kgs
    Weight Goal: 154 pounds/70kg
    (143 pounds/65kg if I'm lucky :p )

  6. #6
    Thin Australian Cyster nicole123 is on a distinguished road nicole123's Avatar
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    Hi Julia in NY,

    I think it might be worth going to see an endocrinologist. Gynocologists like to hand out birth control pills because it's often a simple solution.....but it's not always the best solution for everyone.

    You might talk to the endocrinologist about trying Metformin, which is an insulin-sensitizer that has been shown to help restore a normal hormonal balance for women with PCOS -- even for women who don't seem to have an insulin imbalance (used particularly when fertility is desired.) Depending on your PCOS symptoms, that might be something to try.

    You might also try a different brand of birth control pill -- the amount of estrogen and progestin in these things can vary enormously from brand to brand....and there are also a whole bunch of different progestins that have different effects....

    A good endocrinologist is probably the right person to discuss all the pros and cons with. I'd say that the typical GP/primary care doctor/obgyn/etc would not be sufficiently knowledgeable to provide you with any real help.

    Good luck!
    Me (33) DH(48) DS(2)
    Jan 2005: M/C #1 (conceived naturally)
    Oct 2005: M/C #2
    (conceived on Clomid)
    Oct 2005: 1st cycle after M/C (on Metformin) O on CD28, BFP at 13dpo.
    Heatbeat detected at 6w6d
    2008: TTC #2 on Metformin




  7. #7
    Registered User Kikibee is just really nice Kikibee is just really nice Kikibee is just really nice Kikibee is just really nice Kikibee is just really nice Kikibee's Avatar
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    Julia, I totally agree with what Nicole wrote - a good endocrinologist is key.

    With regard to you leaving for 3 months, I think I would postpone any changes to your medications / treatments until you return. It would probably be a good idea to start searching out the doctor you would like to see now and maybe even meet to come up with a plan of action for when you return.

    Best of luck to you.

    (BTW...yes, as PCOSers my understanding is that we are more prone to diabetes)
    Liz

    2 clomid cycles, 3 stim/IUI cycles, 5 fresh IVF cycles, 5 FETs
    3 chemical pregnancies and 2 miscarriages

    1 Beautiful Baby Boy




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