So not my normal kind of post, but a couple of people have suggested I write about it, so I’m going to share my experience of PCOS. Some of this is medical so you may want to finish eating before you read it.
What is PCOS?
PCOS stands for PolyCystic Ovarian Syndrome and it has a number of possible symptoms and may affect fertility, so it’s kind of hard to define…basically it’s a hormone imbalance that can have all kinds of ‘fun’ with you.
Possible symptoms can include some or all of the following:
- excess, darker or coarser hair, often on the face (nice huh?)
- a decrease in breast size, or perhaps lack of development in the first place
- deeper voice
- hair loss
- weight gain
- pelvic pain
- heavy or absent menstruation
- infertility (due to little or no ovulation)
- Actual cysts on the ovaries (hence the name)
While not symptoms themselves, PCOS can be medically linked to male-pattern hair loss, Diabetes, hypertension and other ‘exciting’ things.
Sounds fun doesn’t it? There is currently a discussion going on in the medical world about whether they should reclassify it as 2 different conditions; this is because a patient may or may not have the physical cysts but still have the hormonal effects.
My history with it:
I’ve always had a somewhat random cycle and because of family history as well, they tested me for PCOS and hormone imbalances at 16; they told me I was fine then but not to rule it out and that I may have fertility issues in the future…like I took that in at 16!?
Fast-forwarding to being a newly married couple, I went for a health check and we decided we were ready for a baby. Expecting issues, we were totally blown away to discover I was pregnant like 2 months later…may have found out sooner but whole irregular cycle thing; takes a while to miss it!
I went for my 12-week scan and was 16 weeks and 3 days…I did say my cycle was a bit random!! No noticeable problems and our baby girl was born the following winter.
When she was about 4, we wanted another and thought similar would happen. After 6 months I checked online and because I was under 30, it said to wait for 12 months before going to the doctor.
When I actually went to the doctor, I felt pretty rough. My cycle was horrible, when it bothered showing up, and my face had more acne than it’s teenaged self… and as for the facial hair thing, I couldn’t even bring myself to talk about. The doctor covering my doc’s maternity leave didn’t seem very bothered and did the bare minimum blood tests. Told me the results were a little high but within normal range then told me to go away for another 6 months!
I was cross, so I went away and did my own research, I made some dietary improvements, but generally carried on with the same symptoms. Fast-forward 3 years (so 4 years trying for baby no.2).
I felt run-down and fed up. I went to my regular doctor and asked for full blood tests (as I also have a history of anaemia). She was quite shocked at how high my androgen (male hormones) levels were. There it was, a PCOS diagnosis.
They gave me metformin and suggested vitamins and diet suggestions, then an appointment with the hospital for more scans, tests, etc.
Not long after my diagnosis, I had a really bad bleed, a suspected burst cyst, but no lasting damage….. Slight embarrassment ensued when a few days later my daughter’s male head teacher asked what happened…my little munchkin had gone to school saying things like “Nana took Mummy to A&E, there was lots of blood” I think the poor guy believed one of us had lost a limb! Having to explain it then, kinda got me over the desire to keep quiet about it.
Since then I’ve improved my symptoms with diet and lifestyle management. My head is in a better place and we haven’t ruled out more children, even if they come from adoption or fostering (something we wanted to do long before my diagnosis).
How to deal with it:
How I dealt with it, to begin with, is probably not the best way forward. My first piece of advice is to go to the doctor if you think there’s a problem….and pester them if you’re not happy with the results.
I’d check your diet. The sad fact is that a lot of girls with PCOS are overweight, but there are lots of artificial sweeteners in diet foods that don’t help. Despite my desire for weight loss, I gave up Aspartame 3 years ago, that was hard because I drank a lot of Diet Coke, but the acne improved (now only get it the second half of cycle) and I went from 7+ weeks per cycle down to 5ish! Result!
Weight loss is good for it though and is essential if you want fertility treatment on the NHS (They won’t give certain meds to people with a BMI over 30.)
I’ve been on and off the Metformin as high doses make me feel sick. Really it’s a blood-sugar regulating medicine but is often used to regulate PCOS symptoms (something to do with insulin resistance, as I said above). Not having high blood sugar, it made me a bit light-headed to start with. Then I had a doctor who didn’t support the use of it, then the specialist said they wanted me to have it or they wouldn’t treat me further! It does keep my cycles between 4 and 5 weeks, so can’t be that bad.
There are also various supplements, herbs and vitamins that can help individual symptoms (such as to deal with acne or cramps) and anyone trying to conceive is recommended 400mg Folic Acid. Do your research and ask reputable professional.
In fact, when I went to my last blood test, my doctor said I was bang on average for someone with PCOS. I never remember which way round it is, but instead of the hormones LH and FSH going up and down together, one is usually double the other. Mine were 17 and 35, almost exactly double…I’m normal, who knew!? LOL!
Lastly, get your head in order. Some days it’s hard to deal with the emotions, especially when the PMS kicks in! Sometimes it’s hard to see loads of pregnant women and new babies, but I refuse to go down the self-pity path now. I know some people find community boards on baby websites that help them, but be careful that the negative people on there don’t bring you down. PMA is an active choice. If you feel down, talk to someone. Never give up hope.
Thanks for reading this looooooooooooooong blog, I hope it helps those out there with PCOS and feel free to contact me if you need some more info.