PCOS/Insulin Resistance SupportSupport for us with any of the following: Insulin Resistance, Syndrome X, Polycystic Ovarian Syndrome, or other endocrine disorders.
My name is Soncera Teboe. I am a student at Berea College studying Psychology, and for one of my classes, I've been assigned to pick a chronic disability on which to do a research project. Part of this project is to ask permission to join a support group and to ask questions of the members, to try and get an inside feel of what it is like to live with said disability.
I chose Metabolic Syndrome because my mother was diagnosed with it, and I myself am currently having tests run to be diagnosed.
Please know that any and all responses will be kept confidential, and that I greatly appreciate any and all responses given by those willing.
Also, I realize that this is not a forum for Metabolic Syndrome specifically, but my mother pointed me in the direction of this group, and I know that X syndrome is often connected with insulin resistance.
Please feel free to post and let me know if it is alright that I remain a member of the forum, and if I am permitted to use your stories to further my study!
1.) What problems have you faced getting diagnosed? Doctors diagnosing each symptom buy itself rather than putting it all together. I suffered for many years not knowing what was wrong with me.
2.) What life style changes have you had to make since your diagnosis? Eating more protein with carbs, and exercising ALOT. Exercise must be a priority. It's more important than nutrition in my case.
3.) What other related diseases/syndromes have you been diagnosed with? None.
4.) Do you have any family members who have also been diagnosed? Yes.
5.) Has your diagnosis caused any family issues for you? No.
6.) How long have you been diagnosed? 10 years
7.) Have you noticed an increase or a decrease in social support since you were diagnosed? Increase
8.) How long did the diagnosis take? 6 years
9.) Have you developed any other disorders or problems because of your diagnosis? Yes.
10.) Has your mental health been affected in any way since your diagnosis, in such ways as depression or anxiety? Yes, depression, fits of anger, and anxiety.
11.) What physical symptoms do you deal with in day to day life of your disorder? Excess fat that is difficult to get off, excess hair, mood swings, acne, and fatigue.
1.) What problems have you faced getting diagnosed?none, I was diagnosed quickly and easily; my problem has been getting decent treatment since then
2.) What life style changes have you had to make since your diagnosis? Less eating out, more planning meaks. I discovered dairy and gluten make me sick and my symptoms worse.
3.) What other related diseases/syndromes have you been diagnosed with?high blood pressure, obeisity, insulin resistance
4.) Do you have any family members who have also been diagnosed?yes, my 2 cousins on my fathers side, though I was diagnosed 17 and didnt know this until 2 years ago (im 24)
5.) Has your diagnosis caused any family issues for you? Mostly the fear of infertility and the frustration of not many others understanding "you can always adopt", "I think its imagined/I think its not really that serious" and "well it wasnt that hard for me" are common phrases from my family so I dont confide in them anymore
6.) How long have you been diagnosed?7 years, I was diagnosed at 17
7.) Have you noticed an increase or a decrease in social support since you were diagnosed?ive seen an increase of "support groups" for pcos but no additional support from family and friends
8.) How long did the diagnosis take?about a month
9.) Have you developed any other disorders or problems because of your diagnosis?high blood pressure, insulin resistance
10.) Has your mental health been affected in any way since your diagnosis, in such ways as depression or anxiety?yes both, I have depression from feeling alone in this battle and anxiety im not "enough" for my boyfriend because of my weight and "defeminization"
11.) What physical symptoms do you deal with in day to day life of your disorder? Hirsutism, carb cravings, excess weight, acne, headaches, lathargy, amenorrhea
Thanks for the responses so far, gals! I really appreciate them. They are super helpful, and I find hearing your stories interesting, as I myself and currently struggling through the grueling diagnosis process.
1.) What problems have you faced getting diagnosed? Doctors and my family not realizing my weight was really an issue when I'd talk to them about it. Always being told I couldn't lose weight because I was stressed. My symptoms were brushed off for years before finding new doctors when I relocated for work.
2.) What life style changes have you had to make since your diagnosis? I've had to learn to accept I can't live like everyone else around me, I can't eat what I want and just burn it off at the gym. I have to exercise twice as much and twice as hard as I used to. Biggest thing is food, it's more about what I'm eating rather than how much. I was never a big portion eater, always ate 1200 or less calories a day but still overweight. re-vamped the fridge.
3.) What other related diseases/syndromes have you been diagnosed with? Diagnosed with PCOS first, then my doctors realized later that I was becoming insulin resistant and high cholesterol.
4.) Do you have any family members who have also been diagnosed? NO
5.) Has your diagnosis caused any family issues for you? The only family issues are the ones I create because of insecurities. My family doesn't fully understand what I'm going through because none of them have this problem. They diet and exercise and look great. I get treated as though I'm hiding how much I eat, like I lie about my diet and exercise. Constantly told by some family members I need to lose weight.
6.) How long have you been diagnosed? Since April 2013, starting being tested since November 2012.
7.) Have you noticed an increase or a decrease in social support since you were diagnosed? Only slight support from family. More support from friends. More support from my new boyfriend, he works in healthcare so he's more educated on the facts
8.) How long did the diagnosis take? Took four years for a doctor to really look at my symptoms and start testing me. After that eight months for actual diagnosis
9.) Have you developed any other disorders or problems because of your diagnosis? Body acne, facial hair , inability to ovulate, weight instability, increased cholesterol, increase in blood pressure.
10.) Has your mental health been affected in any way since your diagnosis, in such ways as depression or anxiety? I thought finally being diagnosed with something would make me feel better. I actually feel worse. Knowing I will always live with this challenge of having to work harder, make greater sacrifices in a constant effort of chasing a dream image of myself. I have anxiety about my appearance constantly. Anxiety about infertility. Didn't want kids till my thirties, now realizing I'll have to start earlier in case I struggle. Questioning my own strength and how hard I want to push myself mentally and physically. The wost is the constant insecurities of not being good enough. I found someone recently perfect for me but I fear his family will not accept me because culturally they are thin and think highly of physical appearance. The pressure of them asking him when he'll finally have kids.
11.) What physical symptoms do you deal with in day to day life of your disorder I get severe to mild hot flashes from the hormone imbalances, constant cramping in my pelvis, and exhaustion
1.) What problems have you faced getting diagnosed?
I was not diagnosed until after age 30. Various doctors had pointed out several of my symptoms from age 17 to 30 but no one put it together until I had an OB who specialized in PCOS and she figured it out pretty quickly.
2.) What life style changes have you had to make since your diagnosis?
More exercise, fewer carbs, taking Metformin.
3.) What other related diseases/syndromes have you been diagnosed with?
I have PCOS, insulin resistance, very high cholesterol, high blood pressure, irregular periods from cysts, acne.
4.) Do you have any family members who have also been diagnosed?
Not that I know of.
5.) Has your diagnosis caused any family issues for you?
I have not told my family.
6.) How long have you been diagnosed?
3 years.
7.) Have you noticed an increase or a decrease in social support since you were diagnosed?
N/A - I haven't discussed it with people.
8.) How long did the diagnosis take?
Once I found the right doctor, 2 appointments.
9.) Have you developed any other disorders or problems because of your diagnosis?
Problems with my weight. It is extremely hard for me to lose weight.
10.) Has your mental health been affected in any way since your diagnosis, in such ways as depression or anxiety?
I am glad there is a reason behind all of my problems but I also feel like it's almost futile to fight them.
11.) What physical symptoms do you deal with in day to day life of your disorder?
Issues with unstable blood sugar.
Research on Living With Metabolic Syndrome
, inability to ovulate, weight instability, increased cholesterol, increase in blood pressure. 
