Apologies in advance for how "all over the place" this post is!
After a conversation with my doctor, I've just been left feeling unheard, brushed to the side and confused.
I first went to this particular GP back in June to talk about my pill and the fact I was ALWAYS spotting for 6 months and i wanted to change contraception. The thing is, I've already tried everything and NOTHING works, the best one was the combined pill, but with a family history of breast cancer and DVT (blood clots) and getting constant migraines, the doctor litterally leapt out of their chairs to get me off of it. I didn't start my period until I was 16 and started using contraception at 18, it's been 7 years and I still have the same issues. After removing the coil, it took me 5 months to get a period. Last year I was looking at ttc, but my ovulation tests never came back positive, the doctor at the time said that I must ovulate because I have periods, but research tells me I can have annovulatory cycles, but how many of them can you have in a row and still get a period each time? My cycle is anything between 20 and 36 days - one doctor says this equates to regular periods, another says it doesn't? I then broke up with my partner and went bavk on the mini pill, which takes us to the constant bleeding. I came off the mini pill on 6th August and haven't yet had a period, though, I know it hasn't been long enough to necessarily mean anything.
I had a scan of my ovaries in July and results came back as I have polycystic ovaries, but I know this doesn't mean I have PCOS. I then had a vlood test and everything is normal, but my FSH level is "satisfactory" but I know that because I was on the pill, the results aren't necessarily accurate. My doctor then said that she doesn't believe a blood test is needed because it wouldn't tell us anything, because PCOS is already a high possibility, but I've also been told by another doctor that I'd have to wait 2 months off of the pill to have another blood test to confirm hormone levels and PCOS?
My doctor has referred me to a Gynea to talk about contraception, but I thoyght an Endocrinologist was better suited for hormones etc. I'm also more concerned about a formal diagnosis of PCOS or not? I can stick to condoms, but I want to know if my fertility could possibly be affected?
I'm just so confused and feel that I need a doctor to listen to everything and tell me if I have PCOS or not. Feeling incredibly tearful for the first time since knowing this is possibility, I just want to know what's going on.
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Amy_McP
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I'm not entirely sure that you're asking in the right place because I don't think any of us here are doctors. What I can do is make suggestions based on my own experience.
>the doctor at the time said that I must ovulate because I have periods,
...I wouldn't see that doctor again. That's basic med classes right there that annovulation can happen.
That doctor is a bit hilarious because they did exactly what this article complains doctors keep doing;
>>> Lastly, there is an inappropriate tendency to assign ovulatory status solely on the basis of menstrual cycle history or poorly timed endocrine measurements. <<<
And yeah with PCOS, periods can happen without an ovulation for a long time. The changes in the uterus to cause a period are by hormone levels and PCOS has a tendency for the ripened follicle to not pop and release the egg, becoming the "polycysts" but you get a period regardless.
If you have PCOS, you'll probably have to take your health into your own hands.
Considering you've mentioned two out of the three-- cystic ovaries and menstrual dysfunction, I'm wondering why the doctors haven't taken that into consideration and given a diagnosis. "Blood tests wouldn't tell us anything" is nonsense and you can ask for androgen tests to confirm.
To be honest, I'd go to see an endocrinologist at this point- privately. They would be better able to figure out your hormone situation and see if you have high androgens. Gynes don't handle PCOS well in my experience. Once diagnosed you can get treatment through the NHS normally. A lot of us have to do exactly this because of the nonsense surrounding PCOS. You'd think one of the most common disorders in women would get more attention, sympathy, and proper diagnostic procedures not to mention treatment, but seems like every doctor has their own take on it.
Ask for copies of your blood tests and do some research on what the numbers mean. A FSH that is "satisfactory" gives me suspicions, though FSH shouldn't even be a factor in diagnosing PCOS unless you are actively trying to get pregnant. Use American or Japanese standards because NICE is horribly relaxed about a lot of metabolic related issues compared to other major countries . (I was given the same fob off about my recent blood tests-- "Everything is fine!"-- that I had to get a copy and right there on the print out was a note on the ridiculously low B12 level that came back: "B12 deficiency unlikely unless symptoms present e.g. neuropathy" I guess it didn't get into the computer that my hands and toes had been tingling for months.)
Just keep at it, because your story sounds like a lot of other women's and sometimes it can be difficult getting an official diagnosis. But, that said, it shouldn't be that difficult testing for heightened testosterone and estrogen and the doctors are being ridiculous.
Thank you so much for this. I wasn't askig for a diagnosis, just more trying to get all og my confusions out in a place where people would understand. I'll look into a private endocrinologist and ask for print outs of my various blood tests. Funny thing is - if I hadn't rang for result before mt doctors appt. I wouldn't know about the "satisfactory" FSH, it was the receptionist that told me. The doctors have always said "everyhing is fine!"
Well no, but you did mention you needed a doctor to listen and that was why I said as much. Getting a doctor to listen is like trying to pull crocodile teeth! Just get as much information as you can and look at actual research articles and so on. I wish you the best on your journey.
It's quite expensive. I think about £150 per appoinment but I don't need to see him often. I've been twice so far and have another booked but after that I shouldn't need to see him unless something changes. I saw about 7 doctors and eventually got a Chronic Fatigue Syndrome diagnosis but went to the endocrinologist for a second opinion and the PCOS treatment he implemented is now starting to work.
I wouldn't rely on ovulation predictor kits as they don't work for pcos ladies so look at the fertilityfriends website as there are more accurate ways of telling.
I had relatively regular periods but rarely ovulated. I would ask to be referred to an endocrinologist as your GP is not knowledgeable enough about the condition to really make sweeping statements like that.
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