Maraj2005,
How was your visit with Dr. Dunaif? I am scheduled to see her in January and wanted to see what you thought of Dr. Dunaif.
I am very new to this board and pcos, recently diagnosed as lean pcos.
I for one am very unhappy with Dr. Dunaif. I had an appointment with her in August (after having waited nearly four months to get one). She was running two hours late and she spent all of 10 minutes with me. Her resident was very good and spent quite a bit of time with me, but mostly it was to take an intensely detailed history for Dr. Dunaif's research. I will be grateful if her research does something to help women with PCOS, but she has no bedside manner at all.
And to top off this negative experience, two days ago I had trouble related to one of the medications she prescribed me. I left a voicemail and it took a full day for one of the nurses to call me back. She promised to get an answer from Dr. Dunaif to my problem....this was over 36 hours ago and I'm still waiting. I'm left to conclude that Dr. Dunaif has no interest in us as people or even as patients, only as research subjects.
__________________ Dx PCOS 8/08
TTC since 2/09
2000mg Metformin
I am new here and just a smidge confused. I am not TTC, so should I be seeing an OB or an RE? I am looking for a new doctor because I feel like my doctor is sort of down playing the whole PCOS thing. When she diagnosed me her advice was "Take BC and stop eating cake and you will be fine". After I went home I did some research and found out it is a little more serious than "not eating cake" I need help! I need a Doctor that will help me lose weight and get healthy. Who am I looking for?
My daughter is the one who was just diagnosed with PCOS after going through a 4 day research study on pcos. We are currently looking for new doctors. They only care about their study. After almost 5 months we are still waiting for her lab results. Has anyone participated in a pcos research study and given their lab results?
Momtomo, where was the study at? How old is your daughter? What kind of treatment are you looking for? Does the consent form say anything about getting the results of the research? If you feel you arent being treated right, you can contact the IRB at the institution, its an ethics board that approved the research study and protects study participants. Their # should be listed in the consent form. Hope that helps!
__________________ Jill (30), DH (28), married 1/04, TTC #1 since 9/07
3 Clomid cycles-all bust Follistim w/ IUI on 1/20/09-BFP
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My daughter is now 18. She used to have trouble loosing weight but after months of weight watchers and really watching what she ate she has lost over 40 pounds. She has very heavy and painful periods that cause her to vomit. Her Dr. at her college gave her medication for the pain and nausea. She is also very frustrated with the facial and body hair. I have spent over 1500.00 in laser hair removal that really doesn't work. Her Endocrinologist feels that she has PCOS. I need to go back and read the paper work from the study. I thought that this study was not only to help them but to also help us in hopefully finding a diagnosis and treatment plan. Right now she is not thinking about having children she just wants to get rid of the body and facial hair, lighter and painful periods. I would like her to be able to get her hormones balanced without all these very heavy drugs. She has tried the yasmin but she became extremely depressed and her face swelled. That is the only treatment plan the endo. has for her and now wants her to try the yasmin nongenric form to see if that helps her??? what elso can they do to lower androgen levels and testosterone levels?
Last edited by momtomo; 11-09-2009 at 12:56 AM.
Reason: didn't think the other post went through
zra - thank you for your feedback on dr. dunaif. This is very helpful, I have read a few reviews regarding dr. dunaif that state the same thing, she is very focused on her research and has little time for patients.
I personally am looking for a good endo that can guide me through PCOS - my current ob/gyn seems very clueless about pcos and when she diagnosed me her attitude was very passive, she advised me to "not worry since I'm not TTC and just take some bc", well, I don't want to have my body on bc anymore, I would love to regulate my cycle naturally since I had regular cycles before bc.
I am scheduled to see dr. dunaif in mid January - I think I will keep the appointment until I find another doctor that can see me on a regular basis and is knowleageable and interested in pcos. In the mean time I am trying to eat healthy, lose a little weight, eventhought I'm considered lean pcos.
I am so thankfull for this site - the majority of my pcos knowledge has come from this forums. Thanks ladies, please keep up the good work.
Megstar, you should look for an endocrinologist if you arent TTC. Not one who says stop eating cake, how silly! Look for someone who will at least evaluate you for Metformin which can help regulate your insulin levels and help you lose weight. This site is also very helpful to educate you about PCOS. Hope that helps!
Momtomo, since your daughter is not TTC, spironolactone is a good option for her to lower androgen levels. This should help with the excess hair. It also really helped me with acne problems. Research studies dont typically help create treatment plans for patients, but they should at least refer you to a clinician. As for the bc, I would suggest trying different brands. I know they had me on one brand which did make me really depressed, but yasmin worked for me without depression. I think you just have to keep trying to see what will work for her. Good luck!
onVacation, if you had regular cycles before bc, how did they diagnose pcos?
__________________ Jill (30), DH (28), married 1/04, TTC #1 since 9/07
3 Clomid cycles-all bust Follistim w/ IUI on 1/20/09-BFP
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onVacation, if you had regular cycles before bc, how did they diagnose pcos?
Jill7755, I got off BC in January 09 and had abnormal and very delayed cycles, I was not diagnosed until July 09 after seeing numerous doctors. pcos came up as a possible diagnoses in the initial visits but since I'm lean they dismissed the pcos possibility. In July the last doctor I saw made the diagnosis based on my lh vs fsh ratio and the higher than normal testosterone level.
I am 28, and had been on bc for about 6 years, prior to that I had regular monthly cycles. Never had problem with acne in my life, and now it's all over my face and back. My ob/gyn prescribed more bc to stop my symtoms and fix my acne, but I really do not want go to back on bc - I am hoping to get this under control in a natural way. I'm exercising more, even though I don't need to loose weight and am trying to eat less carbs. I have an apt with dr dunaif at northwestern in january so I am hoping she can look at my tests and give me a better understanding of what I can do to take my body back to normal.
I am kind of confused...if my daughter is not TTC why does she need to be on birth control? The dr. wanted her on BC for 6 months and then add the spironolactone if needed for the facial and body hair. She gets a period every month but it is very heavy and clotty. Is that enough to say her periods are irregular? Can she be on the spironolactone without being on a BC? She is very sensitive to medication and she is trying to stay in college....experimenting with drugs is very hard on her as she is trying to be a student. She also has anxiety and panic attacks and has to take xanax xr everyday...which I would like her not to have to take...she also has very low cholesterol around 127. I was reading that low cholesterol can make you very anxious. If you are PCOS isn't your cholesterol usually high? I am so confused!!!
I for one am very unhappy with Dr. Dunaif. I had an appointment with her in August (after having waited nearly four months to get one). She was running two hours late and she spent all of 10 minutes with me. Her resident was very good and spent quite a bit of time with me, but mostly it was to take an intensely detailed history for Dr. Dunaif's research. I will be grateful if her research does something to help women with PCOS, but she has no bedside manner at all.
I also was less than impressed. Total waste of my time. The fellow spent about 20 minutes taking my history. Then it is presented to Dr. Dunaif like you are not even there because "that's the way she likes to run things" (that's what the fellow told me). All my labs were normal, so I wanted to know why I was having problems and she said she couldn't really tell because I was on met when the tests were done, so she couldn't say if any levels were really off. BTW, I was told to stop met 4 days before the GTT - seems like she didn't really know/realize that. In the end, she referred me to an RE and for laser hair removal. She also said Vitamin D deficiency is not related to PCOS, but in the Alt. Remedies thread, someone linked to info on how it can be.
onVacation: Basically, she told me she does not follow patients and that I should continue to get my met prescriptions from my GP. I guess she could possibly be helpful if you have a particularly difficult case. She did not talk to me about any lifestyle modifications AT ALL. Maybe because my labs were in the normal range? The most useful thing that she told me was that met could be working for me by just bringing down my blood sugars a little bit below normal.
onVacation: Basically, she told me she does not follow patients and that I should continue to get my met prescriptions from my GP. I guess she could possibly be helpful if you have a particularly difficult case. She did not talk to me about any lifestyle modifications AT ALL. Maybe because my labs were in the normal range? The most useful thing that she told me was that met could be working for me by just bringing down my blood sugars a little bit below normal.
MaraJ - thank you very much for you feedback. I'm sorry you did not have a positive experience with Dr. Dunaif. I was looking forward to my appointment.
I guess I'm very unsure on how to continue, I have been off BC since January 1, 09, did not have a cycle until Mid March (the only natural, non induced cycle this year), this is when I went to my doctor and after few visits I was diagnosed in July. The obgyn prescribed Prometrium to induce my cycle, which I got in August and told me to take BC since I'm not TTC. I told her I do not want to just forget about this and go on BC, she told me that there is no other alternative besides birth control for having regular cycles and there is nothing she could do for me. I refused BC and had another Prometrium induced cycle in late October and my plan was to wait and see what a good specialist on pcos like dr. dunaif would suggest. Right now I'm searching for a good specialist that has seen and worked with lean pcos cases and that can be my pcos go to doctor. Besides no cycles, the other side effects from pcos for me have been a lot of acne on face and back (I never in my life had acne, even as a teenager), a small tummy pouch on lower abdomen, even though I'm healthy and the rest of my body is in good shape.
So please forward any recomandations for a good endo even RE, I will be eventually ttc in few years - why not get my body to work properly now. I work in the loop but live in Bucktown, so any doctors in Chicago I can get too pretty easily. I would appreciate any other advice for lifestyle change or alternative remedies on regulating AF. I am trying to eat less carb and exercise more than usual. I just recently started taking Dchiro, I know mostly obese woman have been taking it - but I thought what the heck might as well try. Thanks
Sorry! I did not mean to make you feel bad about your appointment. She may have better advice for you, since your situation is different. Are you on metformin? It worked wonders for me to regulate my cycles. I just made an appt for an RE at FCI-Highland Park but I am TTC. Maybe someone else can recommend a PCOS specialist downtown or you can do a search on here.
Thanks MaraJ - Good luck to you with the new doctor.
I am not on Metformin, my OBgyn did not even try to prescribe anything besides BC - which I refused. So I am not taking any prescribtion right now, just Dchiro on the natural supplement side. I don't even know if any doctors will prescribe metformin to me since I'm not TTC?
Thanks MaraJ - I will do some research on met and ask the doc to prescribe it. at this point i would do anything to regulate my cycle well anything besides bc
