Not exactly a newbie, but sort of...

Scatterbunny · 10-06-2006, 11:32 PM

Hi everyone, I'm Jenny (27). I posted here a couple of times almost 3 years ago, just after I was diagnosed. I'm a stay-at-home mom to one, a kindergartner named Hayley. Together with her dad we live on the north Oregon coast.

I was diagnosed 3 years ago with PCOS after basically forcing the doctor to do it. I have no insurance so I see whoever is available through the local health department. They charge on a sliding fee scale and will not refuse service even if your bill is unpaid. I did not expect them to know much about PCOS so I went in armed with the paperwork detailing the tests I needed and the best course of treatments.

Because of the ultrasound results the radiologist determined I did NOT have PCOS, and the doctor was in agreement until I insisted she look at the literature that said one could suffer from PCOS without having obviously affected ovaries (but interestingly enough the radiologist's report said there WERE a few tiny cysts and that my right ovary was twice the size of my left ovary).

The doctor agreed to put me on a trial of Metformin and also birth control pills (Ovcon 35). I did not fully understand why treating my hormone problem with more hormones (the birth control) was the answer and was also discouraged with the intestinal upset of the Met so I discontinued treatment.

Of course this means all of my symptoms have not gotten better, and in fact many have gotten worse. I am losing more hair, so much so that it is noticeably thin above my temples and on the crown. My ponytail is about half as thick as it was 10 years ago. As a teenager I always had a slight moustache, something I was teased about, and I began shaving it in high school. At about 18 I began developing a few stray black hairs on my chin, but now at 27 it is uncontrollable. I have to pluck every single day, for about 20 minutes, before I feel my chin looks even acceptable. My neck now, too. I shave my upper lip every day, and now I'm noticing the hair under my bottom lip is darkening. That scares me. The hair on my navel doesn't bother me much, but if I were not in a committed, long-term relationship it probably would. I also have odd skin, very oily in some spots and very dry and flaky in others. Very uneven skin tone, lots of redness. My testosterone level was high (can't find the paperwork at the moment, but if I remember correctly it was over 80). My insulin level was 12 (from what I've read, anything over 8-10 is considered insulin resistance). I weigh 215 pounds and am not quite 5'5".

I've been reading the book The Hormonally Vulnerable Woman by Dr. Geoffrey Redmond of the Hormone Center of New York and getting an idea of my best course of treatment. I want to get back on meds, I now understand how treatment with hormones can actually help me, but I'm worried about doing all of this without a doctor who is familiar with these treatments. I want to get back on birth control pills, preferably Yasmin or Ortho Cyclen because they are nonandrogenic, get back on Metformin and go on spiro.

Is it reasonable to think that I can basically manage my own healthcare? Can I see a doctor who is not trained in this particular issue and make sure I receive the correct tests and care? Is it really imperative that I see an expert, an endocrinologist, or even a doctor who has treated PCOS before?

MiracleMom · 10-06-2006, 11:43 PM

I would suggest that whatever it takes....see somebody and get treated.
Given your family history and symptoms I think you would be better off getting care in any way that you have to go about it.
Welcome back to SC and I wish you all the best.

LookingForHope16 · 10-07-2006, 02:04 AM

I would to whatever it takes!!

Fight and get out there and get yourself treated!

Good Luck and Welcome Back!!

ajhyer · 10-07-2006, 01:54 PM

I would say that it might help to see someone who has treated PCOS before, but not an absolute you must have. I see my regular doctor who has some knowledge of PCOS and also has resources to find out more as needed.

Anyway Welcome!

haeneleh · 10-07-2006, 04:32 PM

I would think it totally doable to manage your own healthcare. I think we all need to do this. You'll need to find a doctor willing to listen to you and understand what this issues are. That may be the most difficult part....

Scatterbunny · 10-07-2006, 10:40 PM

Thanks, everyone. I guess I just needed that reassurance because I keep being told I should see a specialist, and that's discouraging with no insurance. I do wholeheartedly believe that with the research I do, I am generally more informed about PCOS than the doctors I will encounter (having no insurance).

I went off the Met after only being on it for about a month because of the GI disturbances, but now I think it's my best chance.

Does the rest sound right? A nonandrogenic bcp (the progesterone does not mimic testosterone), spiro and Met?

~Soapy~ · 10-08-2006, 04:50 PM

Welcome back. It sounds like you've got a good idea of what you need to try to get your symptoms under control. Good luck!

Eva37 · 10-08-2006, 09:06 PM

welcome to sc
eva

belle84 · 10-09-2006, 03:06 PM

i went on the metformin for a while and it did make me sick but now i wanna start taking it again x x x i know what u mean about it though xx

MommyJenny74 · 10-09-2006, 08:00 PM

Hi cyster! I'm impressed with how informed you are! Sounds to me like you are pursuing the right treatment.

I see my primary doc for my PCOS. He was the one who diagnosed my PCOS (after the gyn and endo failed) and he is just a very kind person, so I feel comfortable just seeing him. I know this setup isn't right for every cyster, but it works well for me.

About the met: I really hope it works wonders for you next time around cyster! I know you've probably heard this before, but taking the met in the middle of the meal and watching my carb intake really helped cut down on the side effects for me. Also starting out at a lower dose (500 mg) and working up helped me a lot. Best wishes for that cyster!

Welcome back, cyster. We are here for you

Hugs
Jenny

heyyy · 10-25-2009, 12:25 AM

I started taking the glucophouge vs the metformin it is more expensive but is much softer on the GI tract.