OK….. I was told in about 2004 that I had multiple cycts on both ovaries and had PSCO.
I then fought to be put on Metformin and has to go to the RI in Edinburgh to see a specialist before my doctor would prescribe them. I was told I could not have Birth Control Pills because of my weight (which is part of the problem!!).
In November 08 I saw a new female doctor at my surgery who noticed that the hospital should have seen me 6 months after my first visit and hadn’t. She thought it a good idea that I go and see them again as she thought my symptoms were all still to do with the PCOS and I had come off the metformin but she thought I should go back on it.
Anyway, I went to the hospital a few weeks ago where the male doctor didn’t give me any eye contact and when I tried to go through my symptoms the one he latched on to was that my periods are very heavy. They did an internal ultra sound and apparently my multiple cysts have disappeared and I only have about 6 on one ovary which is not enough to be diagnosed with PCOS!!
When I asked him what was causing all my other symptoms he brushed me off with “perhaps you are just sensative to hormone changes” and told me I needed to lose weight and would I like to see their dietician!! I told him that I knew exactly what I should be eating and that of course I knew I needed to lose weight but that this was part of my problem. He just ignored me and told me another 3 times that I need to lose weight!
I came out of there in tears and just don’t know what to do now. Is it all in my mind? Do I hve a hormone problem that they haven’t checked? He says that I am not pre or peri hormonal but that was from tests taken over 4 years ago.
I am still really angry and upset and feel like just giving up trying to find out what is wrong with me.
Want to connect with me? My name is Tigger1965 on the SoulCysters Message Board.
Agh sounds like me. Now getting tested for endo 🙁
Sounds like PCOS to me. You don’t always have to have 12 cysts to be diagnosed. It is a symptom. There are many other symptoms. Get a blood test on your glucose or insulin levels.
Doctors need to go back to school and get like really informed on this… i only had one cyst on one of my ovaries and was diagnosed with pcos because of my symptoms…. now im curious to know more abt this is there really an exact amount of cysts you need to have in order to be diagnosed with pcos
It took me 3 years, 4 doctors and a huge load of confusion to get diagnosed. I had the cysts, the hormone imbalances and insulin resistance plus the issues with my hair, weight and depression BUT had regular periods so they kept telling me it couldn’t be PCOS. My advice to anyone with a stubborn or ignorant dr like mine were is to just go find someone good. Or better yet, pay the money to go see a specialist
Get a new endocrinologist! You can have PCOS with zero cysts.
The criteria is any 2 of 3 things.
Pcos symptoms.
Bloodwork showing high hormones or insulin.
Multiple cysts in ovaries.
You need to see a reproductive endocrinologist and not someone who slept through his endocrinology course. PCOS is for life and doesn’t go away.
PCOS is a metabolic/endocrine disorder. The name is a misnomer. I have no cysts. I have severe insulin resistance. I have PCOS. You have seen a long line of incompetent doctors. I have no doubt that you have it. Don’t be discouraged but do find a better doctor even if you have to travel to see him or her.
Before the medical field went the wrong way with its naming, PCOS was originally called Stein – Leventhal after the doctors who recognized it. 40 years ago that is what my mom was diagnosed with.
I was diagnosed in 2004 with pcos being insulin resistant but I stopped taking the meds because they didn’t work. I lost weight with diet and exercise. Now I’ve gained it all back, still have all the symptoms. I recently went to the diabetes and endocrinology center and the doctor acted like nothing was wrong with me. Pcos doesn’t just disappear. Doctors are very stupid on this subject.
PCOS is an endocrine system disorder. Its hormonal, so yu can still have it while not having a single cyst, regular periods and NO problems with fertility.
It took me many years to find the best doctor for me. I am currently being treated for PCOS, low vitamin D, and hashimotos. Keep searching until you find a doctor that will listen and give you the respect you deserve
My daughter has suffered with PCOS for over a year. Doctors misdiagnosed with her being bipolar, schizophrenic, due to her depression. Finally diagnosed four months ago. She is 16 and she cries so much. She has been on over 20 different medications in the last 18 months and has gained 80 pounds from swelling. Please help us find an endocrinologist who specializes in treating teens. I will travel the world to help my little girl.
🙁 I only recently found a doctor who understands and I’m 24. Diagnosed age 15.