Living With PCOS

Something that I haven’t talked about very much on my blog, is that I have Polycystic Ovary Syndrome, PCOS for short.  I was diagnosed with this when I was eighteen but it’s really only in the last couple of years that I have learned anything about it.  PCOS is where women have an elevated male hormone and comes with a number of symptoms, which differ from woman to woman.  These include irregular or no periods, mood swings and depression, acne, excess facial and body hair, pelvic pain, difficulty conceiving and difficulty losing weight.  Diabetes type 2 can also be associated with PCOS, as can Endometrial cancer and heart disease.

When I was first diagnosed, I had gone for seven months without my period.  At first I didn’t mind, I’m sure all women can relate to the inconvenience that is our monthly visitor, so I didn’t do anything about it.  After a while though, I thought it was a bit strange, so I decided it was time to find out what was going on.

My doctor told me that it could be PCOS and sent me for an ultrasound and blood tests to investigate further and it wasn’t long before she told me that I did in fact, have PCOS.  Cool, so what I had wrong with me had a name!  She told me that I had too much testosterone and that polycystic meant ‘many cysts.’  I was instantly ashamed, testosterone!  Did that mean I wasn’t really a woman?  Up until that point I didn’t even know that women had testosterone!  She gave me a small leaflet to flick through, put me on a specific contraceptive pill called Estelle, which was apparently designed for women with PCOS and told me to lose weight and quit smoking.  She also told me I would be unlikely to ever fall pregnant and then told me in the next breath that a cure for PCOS was to fall pregnant.  Um…?

I don’t remember a lot about the leaflet, except that it didn’t tell me much other than to tell me that PCOS was the reason I had recently started sprouting random dark hairs on my upper chest, neck and face.  I didn’t have a moustache or anything embarrassing like that, just stray hairs that I regularly plucked to avoid embarrassment.  It was also well before the days of having Google on my phone on the go, so I didn’t really do any research.  It was back when I thought that doctors knew everything and I assumed that the leaflet was all the information that I needed.  I went on the pill, my period came back due to the sugar pills, the excess hair disappeared and after a few months a follow up blood test showed that my testosterone levels were normal.  Cured!

Or so I thought.  It turns out, PCOS has no cure and as soon as I took a break from the pill, the excess hair came back and my testosterone levels soared again.  The cause of PCOS is uncertain, although there is evidence to suggest that it is a genetic condition.  For me, it is likely that PCOS has played a part in my mental illness, although being on The Pill did nothing to alleviate my depression symptoms, so maybe it is not related. Obviously I will never know if depression and anxiety would have been a part of my life without PCOS, but there are strong links associated.  My diagnosis for depression and PCOS were within quick succession of each other, although looking back I feel like I always had a struggle with mental illness, even as a child.

Irregular periods are the norm for me. They are heavy and painful and can happen as often as a week apart and as spaced out as six to seven weeks apart. I don’t calculate them, because I just never know. They are somewhat painful, but as I’ve gotten older the pain has decreased, which I’ve heard is unusual. The downside is as I’ve gotten older, the bad moods that come with my period have gotten worse, especially on the first day. It is not uncommon for the smallest thing to make me instantly ropable on the first day of my period these days.

PCOS is a factor in my struggle to lose weight.  A common symptom of it is insulin resistance and while I don’t have that, like many women with PCOS, I do struggle to lose weight and I gain it back very quickly.  For me, a diet of unprocessed food was the only successful weight loss method, but for other women with PCOS, a low carb diet is the way to go to combat the insulin resistance.  Even then, some women have little success.  Obesity and being overweight is a very common symptom for women with PCOS. It’s an unfortunate catch 22 as there is evidence to suggest that weight loss can help diminish PCOS symptoms, but of course often a lot harder to lose weight when you have it.

I also used to experience a lot of pelvic pain.  It didn’t matter what time of the month it was, I felt period pain all year round, sometimes so extreme that I would have to stop what I was doing and wait it out.  Interestingly enough the pain seemed to be worse when I didn’t have my period.  Since completing my elimination diet, I have only had small amounts of pelvic pain, usually after excessive gluten consumption, and it hasn’t been crippling like it used to be, so again, like with my mental health, I am unsure if this was a PCOS symptom, or coincidence.

The stray hairs are now a part of my daily life, with or without the contraceptive pill.  I have been lucky enough to not experience much acne, even in my teenage years, but I have taken to carrying a pair of tweezers with me wherever I go, in case I notice a dark unwanted hair.  They tend to pop up anywhere on my neck, near my ears on my jawline, between my breasts and anywhere on my chest.  It’s not uncommon for me to spend a few minutes a day, straining the skin on my jawline to make sure I haven’t missed any.  These hairs are darker than my natural hair and also coarser.  They used to be a source of embarrassment for me, but I’ve actually only ever had one comment about one that was on my neck, because it was before I knew that I had them.  I’m pretty sure that until this blog post it was a source of private embarrassment for me.

In the past couple of years I have done a lot more research about PCOS and while I’m in no way an expert, I do feel lucky to have discovered that my suffering of this is mild compared to what a lot of women have to deal with.  Sure, I struggle with weight, irregular periods, have the annoying excess hair and used to have to deal with the pain, but a lot of women have it worse.  For some, it causes extreme heavy and uncomfortable periods, others have to deal with the insulin resistance and others unfortunately do have infertility as a result.

Infertility is not an issue for me.  I am pregnant now for the second time in my life.  The first time, I was on the pill, which obviously failed.  This pregnancy turned out to be ectopic, which also has links to PCOS, but I felt lucky knowing that at least I could get pregnant if I wanted to.  I was on the pill and while that isn’t foolproof, it sure makes it harder to get pregnant, which in my mind meant that fertility, while coming with the risk of another ectopic pregnancy, wasn’t going to be impossible for me.  This time round, my pregnancy was planned amd so far is going well, which is all I can ask for, although I expected it to take a longer period of trying before we had success.  The other thing that surprised me is that I expected the excess hair to go away while pregnant, which it hasn’t.  I now realise that this is something that I will always have to deal with.

For anyone who has been diagnosed with PCOS, I urge you to do your research.  Ask questions, go and see a specialist, don’t just accept it like I did.  There is a lot of misinformation out there, so ask your friends as well.  In the last year I have discovered that a surprisingly large number of the women I know also suffer from PCOS, all to varying degrees and with varying issues of their own.  Some women find ways to cope through diet and exercise and others need more specialised help, but it’s all about not being ashamed and not letting it take over your life.

Smiles and Sunshine
Katie