All posts tagged PCOS

Cabin fever and the loss of shyness

Published September 10, 2012 by crazyinpink

(I feel inclined to inform potential readers that the post below is quite graphic. And brutally honest)

T minus one week until I submit my Masters dissertation. One week.  Seven days.

I’m surprisingly calm at the mo.  Although, considering I already had a near-breakdown over my academic future last week maybe I just don’t have any energy to work myself up.

When I handed in my undergrad dissertation, a lovely little 12, 000 word walk in the park compared to this beast, I immediately had to sit a two hour exam.  Then I went home, ate some Chinese food and cried tears of relief that it was all over.  I do believe I then slept for a few days but I don’t remember.

I’ve been confined to my desk since Thursday when I had to go to work.  My boss is being just as annoyingly absent-minded as usual so I have literally no idea when I am next there.  But I had to drag myself out of my room this morning for a doctor’s appointment. Even when the mind is willing, the body still needs regular check-ups.

My operation was about two months ago so I had to go in and get my strings checked.  This is an entirely pointless process whereby they make sure that the Mirena device they implanted in my womb is still there. I had my first Mirena put in when I had my first lap back in 2008.  I duly went for the six week check (my fist ever experience of any kind of internal exam).  Not only could the doctor not feel it and I felt unbelievable discomfort and pain, I also got into my first (and only) crash in the car park as I tried to leave the doctor’s.  Shockingly, it wasn’t even my fault.  You are meant to get the strings checked once a year after that.  I went the first two years.  Both times they still couldn’t feel them or see them and trying to find them made me cry so much that the doctors just left it.

Earlier this year when I started experiencing quite a bit of pain ‘down there’ I thought maybe it had moved or something.  Since there was absolutely no proof that it stayed where it was meant to, the doctor agreed.  I had another exam and still nothing.  Anyway, weeks and a lot of exams later, it turned out it was an abscess.  Were it not for the fact that I hadn’t had a period since January 2008, I would’ve thought they had lied about the whole Mirena thing.

So, having got it replaced during my recent surgery, I had to go in for the string check today.  It made me think of how much has changed since the last time. How much I’ve changed.  While it’s still not my favourite thing in the world and massively uncomfortable, I’ve got so used to internal examinations that I didn’t even feel nervous.  I don’t cry anymore (unless there are scary looking instruments involved) and there is zero shyness now.  So many medical professionals have had to look there that I don’t have a boundary anymore.  I whipped off my leggings and knickers before the doctor had even drawn the wispy little curtain the whole way around the bed.  Why do they even have that curtain? They are going to see you anyway, why let you undress in private one minute then insert things in you the next?

The most remarkable thing was how quickly she found the strings.  She had asked if my last one could be felt by hand and I informed her that it’s existence had never actually been verified. Uh-oh. She readied some unpleasant things just in case her ‘manual’ inspection didn’t work.  Then, to both of our surprises, it was all over! She felt it straight away and everything was grand.

I went over a few other health questions with her.  When you’ve got an appointment with a doctor, you need to really take advantage.  Especially since it takes about 3 weeks to get an appointment over here.  So she inspected a strange lump I’ve had for a few months.  I would be the person who grows cysts on the surface *eyeroll* then we discussed ways to build up my quads.  I dislocated my kneecap in a laundry-related incident about three years ago and was told I’d always have a weakness in that knee but lately it just seems to be getting worse.

Anyway, that was my exciting escape. Oh, I also tried to lodge a cheque in my bank only to be told that it would take six weeks because the amount is in Euros.  The teller informed me of this and added that there’s a small charge for this service.  He asked if I wanted to go ahead.  There’s not much I can really do about it since it is a cheque for me from some Irish association.  I will officially be living off crumbs from now till the end of the month when my measly wages come in.

At least sitting at my desk for the next week won’t cost too much.

A little bit of twitter-inspired philosophical wonderings…

Published August 21, 2012 by crazyinpink

A new endo twitter account appeared a few days ago.  The general point of the account is to provide support and some kind of comic relief for endo fighters (I dislike calling us ‘sufferers’ because it kind of implies that the disease controls us, at times it does feel that way but I much prefer the term ‘fighters’).  I noticed the account quite early on (being somewhat addicted to twitter) and as I tweet about my life with endo quite a bit, I have been retweeted by the account. 

I like the account.  I think it is witty and honest and relatable.  I don’t agree with every tweet but I think it is a good thing and certainly helps bring endo sisters together because it is so active.

However, I noticed the other day that not everyone is supportive of this new account.  I saw a tweet which piqued my curiosity and so I read the conversation surrounding it.

One endo fighter took an aggressive tone when she asked the girl who owns the account to leave her alone.  She claimed the account was stupid, there was nothing at all humorous about endo and it was flippantly making light of her pain.  The conversation continued with more and more bitter comments from her side.  To her credit, the girl who runs the account responded very maturely and diplomatically to what was essentially, verbal assault.

This little, seemingly insignificant, exchange made me think about how people can react to something as life-changing as a chronic illness.

There are always going to be people who are naturally optimistic and upbeat, who keep going no matter what and as Eric Idle would say ‘always look on the bright side of life’. (do do do do do do do do)  Likewise, there are going to be people who think their world has ended and fail to even look for the light at the end of the tunnel.  Most of us will oscillate between the two extremes during our own individual journeys.   The thing is, to keep travelling.

Since I got really ill three and a half years ago I have experienced my fair share of ways to cope with it.  When I first collapsed and in the weeks following, sheer panic occupied my every waking minute.  My body was being attacked from the inside and I didn’t understand why.  I wasn’t having periods yet I was experiencing the worst kind of period pain x 100.  I knew I had endo and it had been removed a year earlier, why was the pain back?

Slowly, I adjusted to my new kind of life.  I had to wear skirts instead of jeans (something which was entirely alien to me), tasks I could have done in a day all of a sudden took me at least three or four and my gorgeous, bass playing boyfriend broke up with the new me.  I resigned myself to waiting.  I was waiting to see someone, waiting for them to tell me it was the endo again and waiting for them to take it away like they had before. After months of waiting, I was told it wasn’t endo.

I felt lost and confused.  It felt exactly the same as it had done before, only worse. My GP, convinced I had Irritable Bowel Syndrome, put me on stupid treatments to make me go to the toilet more. This I remember as the Embarrassing Stage. Documenting everything I ate, every time I went to the loo, describing everything that happened there. I was only 20 and I had a colonoscopy. Shockingly to the doctors, but not to me, there was nothing wrong with the inside of my bowel.

Frustration set in as time and time again I was put on stupid treatments that never made any impact on my level of pain.  Eventually, I talked one consultant (after he insulted me and suggested I lose weight) into giving me a MRI. The scan showed a multitude of cysts covering my ovaries.  The right one was practically hidden under the sheer volume, 13 that they could count.  This led to a referral to gynae for poly-cystic ovarian syndrome. They then decided to put me through an artificial menopause. This was the Nothing-Can-Be-Worse-Than-This-Hell stage when I hated everything and everyone, especially me. This was a low period as my body rejected the treatment and I ended up spending the Easter holidays in a hospital bed.

What emerged though was the new me. I began to accept that the magical solution I’d been holding on for might never come.  Instead of wasting this period of my life waiting for things to get better, I should make things better for myself now. I began to fight. I fought the doctors and insisted on recognition.  I stopped being embarrassed by my body and learned to love all of me, right down to the burns left by my ever-present hot water bottle. I realised that being ill and living with chronic pain has actually made me into a better person than I once was.  I have more patience, more sensitivity and found a strength I never knew I had. 

Things haven’t been easy. In November last year when my consultant changed his mind about my condition, I hit a really low point again but I bounced back. And I will keep bouncing back. However many times it takes.

Sometimes, we need a bit of humour and a bit of encouragement.  I understand why it can be hard to see the silver lining at times but if you don’t look for it, you’ll never find it. 

Twas the night before hospital

Published July 16, 2012 by crazyinpink

The long wait is nearly over.  Tomorrow morning I go into hospital for my laparoscopy.

I’m now quite nervous.  I fought so hard to get to this point.  Even my consultant thinks its a waste of time.  I finally convinced him by pointing out that I have to get my Mirena implant changed before January and because I’m a virgin, they have to knock me out to do it.  So, I said, if you’re already going to have to knock me out for that, why not have a wee look around while you’re in there?  He laughed and said he admired my guts.

I don’t know how to prepare myself.  Everything could change.  My ovary could be really damaged.  There might be endo. There might not be endo.  It could just be scar tissue from when they lasered the endo off four and a half years ago. It could be adhesions. There might not be anything.

And the Mirena.  I know it doesn’t work the same for everyone but for me, its meant four and a half years with no periods.  And when you spent your teenage years dreading that time of the month which in my case lasted 15 days filled with pain and severe bleeding…not having that has been a miracle.  I don’t know how I would cope if this one didn’t work as well and if I start having periods again.

I know I will though.  Whatever tomorrow brings, I’ll handle it.  It might take a while but I’ve dealt with so much up to this point and I really feel like this could provide some answers. Today is just so nerve-wracking.


See you on the other side.

An unusually deep conversation

Published June 20, 2012 by crazyinpink

As seems to be the way of it lately, I had a lot of boy news for my workmate (and Fairy Godmother) after the weekend.

I had gone to the barn dance at church on Saturday night. My first dance partner was a five year old boy, then a man in his 40s and his girlfriend dragged me up for a trio dance. Although a group of us were there, the rest mysteriously disappeared when the dancing started, leaving me and Dan, an extremely quiet guy around my  age.  There were high hopes for me and Dan to get together when the young adults group started about two years ago, but I was just starting my romance with Mickey at the time.  Anyway, after both of us being pulled up by random people, we decided to be dance partners.

The first time we went to awkwardly hold hands, there was a tiny electric shock. We pulled back and I laughed nervously, suddenly struck by how brown his eyes were. We learned the dance and as we waited for the next instructions we kept holding hands, even though no other couples seemed to be. The two of us swung around, held hands, promenaded and all the rest for the next few songs before taking a break, walking back to our seats still (yup, you guessed it) holding hands. Dan is a nice guy, the quietest guy I’ve ever known.  I used to think he just didn’t like me as he never really spoke to me then I caught him smiling to himself at all the stupid things I say and realised that he had a wee twinkle in his eye and seemed to be the only one with my sense of humour.

We spent the rest of the evening either sitting talking or dancing together. When the others eventually returned they were all winking and grinning at us. I’m not entirely sure of what was happening.

But wait. I like Jam, don’t I?

This was essentially what prompted the discussion with my Fairy Godmother. I know that I like Jam (butterflies don’t lie) but then there are all these other guys that keep coming in and out of focus. On Monday evening we continued talking about all the men and how I felt.

In an uncharacteristic move, I found myself saying that I think I’m ready for a serious relationship. I’ve always been a bit Chandler-esque about committment in the past, loving the chase but not the couply phase.  Now I think I’d quite like to see what a long-term relationship would be like. It’s just finding someone to have that with.

I worry sometimes about finding someone who can handle me.  I’ve never been ‘normal’ and I don’t know how to be the perfect girlfriend.  I don’t necessarily need a boyfriend, there are too many girls like that, I’m happy enough being single. I know who I am and I know what I want from life, if I get married then great but it’s not the only goal I want to achieve.  I would love to have kids but I know that with two diseases festering in my woman parts, that might be difficult if not impossible.  How do you go into a relationship with that knowledge? Holding a bomb and deciding when to detonate it. Too soon and you could scare the guy off.  Too late and you might be too invested in the relationship.  Even besides the whole baby business, my condition, my treatments, my lifestyle.  It’s taken me three years to come to terms with it.  I found out that some friends just couldn’t. I’ve yet to find a guy who could.  Someone who would understand and take care of me when I need taken care of.

I spilled my guts to my Fairy G and she said she hopes I get that relationship and how great would it be if I found it with Jam. Then she said that if I find it with Butter (Jam’s friend and housemate upon whom she has a bit of a crush) then I have her blessing. I found this strange but she said she had a feeling that something might develop there.  As if I wasn’t already confused enough.