Friday, 25 September 2015

Living with Prolactinoma

So if you haven’t heard of this (and chances are you probably won’t have unless you have one) it’s basically a benign tumour in your pituitary gland, which messes up your hormones and can also make you produce milk even if you’re not pregnant and you also get excessive hair growth, weight gain, infertility and it can also affect your eyesight as the tumour can push against the nerve endings. Now no one knows exactly how long I've had it or how long it’s been growing for, but potentially it could have been growing since I started my period at age 9.

Now I’d always had crippling periods where I’d be in so much pain I pretty much couldn't function for the 1st few days and my periods were always irregular and could last anything from a few days to a couple months. Sometimes I would have a period then stop for a few days then come back on heavy again, it was such a nightmare. The doctors were no help and would just palm me off with painkillers.
Then as I got older (into my teens) and the pain and periods were getting worse the doctors then tried to imply that I had an STD, but then as I wasn’t even sexually active they would then palm me off with more painkillers again and don’t think they were prescribing me any special super strength pain killers they were telling me to go buy paracetamol from the shops.

Then as I got to around 16/17 and was sexually active then that gave the doctor more reason to convince me I had an STD (again) and sent me to the GUM clinic. Now I remember this visit clearly because although I didn’t have an STD (shock horror..) the doctor did say I had a hormonal imbalance and gave me some tablets for it. Now as they never really explained what the tablets were I was scared to take the tablets because I was young and thought if I took them to replace certain hormones that I might start turning into a man.

So all these false diagnoses continued, I remember at one point being told I was having an ectopic pregnancy when there was absolutely no way I could’ve even been pregnant. I was then told it’s probably an STD (yet again) then after that it was simply bad period pains and I should take more paracetamol.

So this continued way into my uni years when I happened to read an article in a gossip magazine about a celebrity (I’m sure it was one of the Spice girls) saying they had either Polycystic Ovaries or Endometriosis and had a lot of the same symptoms as me. So I went to the doctors, but my normal doctor wasn’t there and it was a female stand in doctor and told her I had Polycystic ovaries and needed to be referred (I didn’t have a clue who I needed to be referred to, but I wanted to be referred somewhere lol) as I was having excessive facial hair growth and the milk was leaking a lot more from my boobs. So coincidently this particular doctor had another doctor friend who might know more about my condition.

So I saw an endocrine doctor who knew exactly what was wrong with me, they sent me for an MRI scan (which is the worst thing ever when you are super claustrophobic) and found I had a Macroprolactinoma that was swollen and bleeding internally. Now Macroprolactinoma is the biggest of the tumours that you can get as most people who get this tend to have the smaller Microprolactinoma so lucky me got stuck with a big tumour that’s kinda near my eyes and brain. Also if it was left untreated any longer it could've led to blindness or even worse case scenario emergency brain surgery.

OK so now I’m rambling, but to cut a long story short I’m now on medication (that I have to take forever) to help shrink the tumour. But annoyingly stress and weight gain (amongst other things) can affect the tumour and because I've piled on so much weight the endocrine doctors are now concerned, so I have to get regular blood tests and MRI scans to check that my weight is not making the tumour grow back to its original size. 

Also I still have problems with the hair growth but have been prescribed a cream and tablets and those coupled with regular Electrolysis, waxing and tea tree oil seem to really be helping, finally. But sadly this is something I’m gonna have to deal with for the rest of my life and it makes me mad the it went undetected for so long this could’ve been sorted years ago because if the doctors would’ve taken me seriously when I started complaining then potentially I might not have a Prolactinoma today.



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