Hi all, just wanting to get your opinion on if I have PCOS. For years now (im 24, first got my period at 14) I have felt that things were not "normal" despite the doctors repeatedly saying "oh that's just part of being a woman" grrr!!! I was put on BCP at 18 which helped to regulate things, but only helped with acne slightly. I don’t have chronic acne, but still have a few pimples present at most times, and get oily skin on my face. I went off the pill about a year ago, and have not had a regular cycle since. Usually happens anywhere from 4 - 8 weeks, they are heavy, clots and very painful, and can last anywhere from 3 - 7 days. I have had episodes of severe pain on my right ovary that has lasted for days, and I still frequently get sharp stabbing pains mostly on my right ovary. Since puberty I have struggled with my weight even though I eat healthily and exercise regularly. I do have get several thick black hairs on my chin area that need plucking regularly and have darkened hair on my upper lip that I need to wax. I got my bloods done to check hormone levels. I have a total testosterone level of 3.1, the "normal range" saying 0.2-2.0 my "free" levels are at 10%, and anything above 5% is said to be abnormal. My LH/FSH levels were 17/5, which is a ratio greater than 3:1 and it should be 1:1 !! I had an U/S and the report came back as "normal" The most frustrating part is that when I first presented to the new doctor and explained my symptoms she said immediately that she suspected PCOS, so got the relevant bloods done and booked in for a US. Blood results came back and she said that she felt I did have PCOS and suggested for me to look into metformin, while I waited for the US, and even made the comment that I can still have PCOS even of the US doesn't show PCO. Got the US report back, had a follow up appointment to discuss the results and she said "US all fine, no you don’t have PCOS.. just see how things go". I was on the verge of tears to hear those words. I have been hearing them for years, and sick of them!! I told her that last visit she admitted that you don’t have to have visible PCO to have PCOS, and we had even discussed treatment options. I made it clear that I did not agree with her "withdrawing" her diagnosis. But managed to get a referral to a Gyno, and have an appointment in a months time. To me the hormone levels and symptoms clearly show that I do have PCOS.
ETA: We plan to start TTC next year, so I want to get on top of these issues NOW. Any thoughts?
I would wait and see what the GYN says. My doctor diagnosed me based on my symptoms and my hormone levels, I haven't ever had an ultrasound or even an internal exam. She told me that the symptoms and hormone levels are what really matter, the ultrasound doesn't really tell you much because a lot of women with pcos don't show anything on an ultrasound.
Don't give up! I've thought since I started my periods at 14 that something was "off," but was too afraid to say anything. When I finally couldn't stand the symptoms anymore, I was diagnosed within six weeks... You know your body better than any doctor, so don't stop pursuing your options until you get an answer.
To me the hormone levels and symptoms clearly show that I do have PCOS.
In all fairness, no blood tests can 'clearly show' that you have pcos. PCOS is a diagnosis of exclusion.
That said, if your doctor had made the decision that you DON'T have PCOS based on 'no cysts'...that's a problem, and one that I would note in your records IN WRITING if the office cannot provide a reasonable argument for the decision (supported by research.)
Tell the doctor's office that you're concerned about the level of care you received (<-- if you feel that that's an accurate statement)
Tell them that your research suggests that the absence of cysts is not a reason to 'rule out' pcos, and you would like the office to provide information supporting their decision.
Also ask for a concise explanation for the symptoms that you're having.
Be nice about it...but be firm.
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In all fairness, no blood tests can 'clearly show' that you have pcos. PCOS is a diagnosis of exclusion.
You are right, sorry perhaps a poor choice of wording. I feel my blood results are very suggestive of PCOS. From what I have read certain other conditions that may also display similar hormone levels to that of PCOS often have a couple of other hormone levels that are usually beyond "normal" parameters, yet mine do not fit those pattens, suggesting the other conditions are unlikely.
But yes, the doctor did change her diagnosis simply based on the ultrasound result, nothing else changed in that time besides having an ultrasound. I have an appointment with a Gyn/Ob in a couple of weeks, managed to get in sooner as I rang them and they had an earlier cancellation. Will see how that goes.
Personally, I would take the labs to an Endo. My Endo saw my labs showing high LH and agreed to see me. She did bloodwork and also find high testosterone. She prescribed Metformin with these results and will see me again in 4 months. Anyway... point being, maybe it will take an Endo to diagnose you and hopefully work out a treatment plan for you.
Good luck to you. Don't lose hope. I know it can be frustrating.
Do I have PCOS? 
