I have PCOS. When my symptoms started, I walked every day, and ate a relatively low carb diet. Meaning I ate mostly meat and veggies. Almost always fresh.
I gained and gained and gained, despite my best efforts to stay in shape and to get healthy again. This started when I was 19. I am now 26.
When I was 22, I ended up in the ER because of "sporadic uterine bleeding". The short of it is that I had so little estrogen that the lining of the uterus wasn't building back up and just shed, continuously. I almost died.
A little bit of a back story for a second: reading "SoulCysters.Net" I discovered that the most common factor for women who start to have PCOS symptoms in their early 20s, actually started to have them as early as the start of their puberty. Meaning that they started puberty before they hit double digits, and cycles never regulated, and were sporadic or absent for months at a time. I started puberty at 9. I had my first cycle before I hit age 11. I have NEVER had a regular cycle, unless on birth control. And even then, sometimes I wouldn't have one.
Since my diagnosis I have been on a LONG roller coaster ride of weight gain and loss. I have taken many meds, tried many different forms of birth control, tinkered with my diet, tried exercising (I still do most of these things), and I am still stuck at a high weight.
Through my research, I have found that PCOS is linked to genetics as well. They say that if your mom has it, you most likely will have it. If you have it, your sister(s) most likely will have it. There is also a male form of PCOS.
I also suffer from chronic body pain. This started a couple of years ago, and is getting worse, despite the fact that I am finally losing weight. I also have joint and muscle weakness, despite the fact that I have ZERO damage, and I am way more active than I use to be. I have also been told that though my weight is not helping the joint and muscle problems, it is NOT causing it.
When I found out that my weight isn't directly causing the issues, I went on the search for PCOS possibly linked to autoimmunity. I keep finding questions, but no definitive answers. Many people are stepping up and asking this question. And since I am finally losing and my body pain, muscle and joint weakness isn't getting better, I suspect it has to do with the PCOS.
By the way? There is absolutely nothing wrong with my thyroid.
I hope this helps a little? Even if it just adds my name to the list of folks asking the same darn questions... With my story, maybe someone else can gain some insight.