Hi ladies,
I'm dealing with a bunch of health issues and my GP offered PCOS as a possible explanation but the endo seemed hesitant. Here's a rundown of what's going on:
1. I've been on the pill for the last few years as a treatment for benign ovarian cysts i was having. I tricycle (only have a period every three packs).
Prior to this I'm pretty sure I was ovulating normally (ovulation pain, discharge, etc). I only had my period every 6 weeks.
2. I have elevated free testosterone and insulin resistance. Normal glucose, no diabetes.
3. I am unable to lose weight and actually will slowly gain weight over time if I don't fight hard against it. I have been working out with a trainer for over a year and haven't lost weight, except for what I explain in #4 below.
4. Started taking Metformin on 4/30 to try to lose weight. Had some GI issues at first but was losing weight. Lost about 20 pounds in 3-4 weeks. Stopped losing weight and started having severe GI symptoms 2-3 weeks ago. I have written to my Dr. today about stopping the Metformin because I am in so much pain from all of the stomach issues.
5. Endo tested DHEAS and 17 HYDROXYPROGESTERONE. The results seem abnormal in relation to normal measures I saw but I haven't been to see him again so they could be ok.
6. I have high blood pressure and slightly elevated cholesterol. There seems to be some genetic factors going on but I am also obese.
7. I have none of the "outward" signs of PCOS - no excess hair etc. Although, I did have some trouble with acne when I wasn't on the pill, it was by no means excessive.
I'm at a loss here. It makes me sad that I seem to not tolerate Metformin as I have been unable to lose weight any other way. I just want to know what's going on and what I will have to deal with. I can post lab results if that will help.
I know that none of you can tell me what I have or not, but has anyone been here and has some advice?
With PCOS, be mindful that each woman displays different symptoms. Even if you don't have some of the outward appearances of PCOS, like the unwanted hair growth or the male pattern baldness, it doesn't necessarily rule out PCOS.
Second, one of the reasons you may not see any of the outward symptoms of PCOS is because your on BCP. The pill is not an approved method of treatment for women with PCOS. It actually masks the effects of this syndrome. So the reason you may not see anything is because the pill is suppressing those outward expressions, which just makes matters worse because you're not treating the source of the PCOS.
The source being insulin resistance. The #1 go-to drug for insulin resistance and PCOS is Metformin.
If I may ask, what is you current dosage of Metformin?
A lot of women experience the GI side effects when on Metformin. It's highly suggested that you start out with a low dose, like 500mg, and slowly work your way up in dosage. Some women are on 1500mg-2500mg.
If you still cannot tolerate the Metformin, even with starting small and working your way up, you can also take Actos. It's similar to Metformin, but is supposed to be gentler for those women who can't tolerate Metformin.
The benign ovarian cysts are a key signature of PCOS, but BCP is not treatment for it. You may want to find women on here who have PCOS and do not want to get pregnant, so they're on BCP for that reason.I think Yaz is safe for women with PCOS.
Also, the tricycle isn't conducive to the PCOS either. It is essential that you have a period once a month. Never go more than 3 months without a period. If you pass the 3 month mark, then you can take Provera or Prometrium to induce AF.
Even if you don't have the outward expressions of PCOS, you do have the inner workings of it, by the sound of things. The high androgen levels (such as DHEAS and testosterone), high blood pressure, high cholesterol, difficulty losing weight, gaining of weight, ovarian cysts, and insulin resistance.
It's key that you find a dr that can recognize that this is PCOS and knows how to properly treat it.
You also want to test to make sure you don't have hypothyroidism and LOCAH (Late Onset Congenital Adrenal Hyperplasia). These are two simple blood tests, and it's best to rule them out.
Thank you for your long and detailed response! You have definitely given me a lot to think about and a lot of good information.
I take 500mg Metformin twice a day.
I take Levlen and I tri-cycle. I don't understand what is the problem with that because I have never had a problem not having a period in my life. It has never not come.
I have been doing research on LOCAH but my 17 HYDROXYPROGESTERONE result, from what I've read was low for a woman during her period (I took all the tests the second day of my period). Wouldn't that result have been high?
I have had all the different possible thyroid tests as thyroid problems are incredibly common in my mom's family (my uncle, grandmother, and both of my grandmother's parents had thyroid disorders and/or thyroid cancer). Everything came back normal. I was incredibly frustrated at that point because I was looking for something, anything to point to as a reason for all the problems i've been having and thyroid seemed likely considering the family history and my history with depression.
Thank you again for your post. It's hard to deal with all of this right now with being so sick from the Metformin and yet not wanting to abandon that because I did begin to have a small amount of weight loss.
I can understand your frustration. It's aggravating to not have an exact answer as to what's going on. And it's even more so when not every woman displays the same symptoms. With PCOS, every woman is all over the board when it comes to their own outward expression of the syndrome.
Some women display every last symptom, whereas others only display a select few symptoms.
As for me, I only display a few things...
-Overweight, with difficulty losing weight, but have had luck eating more veggies and drink more water.
-Irregular/absent periods.
-Ovarian cysts.
-A couple pesky hairs on chin and upper lip that I pluck every now and again.
-All bloodwork is normal except for slightly elevated DHEAS levels.
-Infertility; no ovulation.
-Normal cholesterol and normal blood pressure.
-Tested negative for hypothyroidism.
-A couple tiny skin tags on armpit and neck.
-Skin is lightly darker around my waist.
It's not uncommon for a woman with PCOS to get her period without the aid of medication, and it's not uncommon for some women to have PCOS without the ovarian cysts.
It's all an aggravating process because there's no definitive diagnostic test for it and treatment is all about trial and error. You really start to feel like a guinea pig.
The only good thing that comes out of it are online forums such as this one. It's helpful to be able to talk to other women with similar health issues and get their feedback as to what they've tried and what's worked for them. Or if you just need an understanding shoulder to cry on. We're all here to help one another.