THIS WEEKS FEATURE: Is Actually Not a Feature (sorry!); It’s an Update.

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Guys.  You guys are amazing.  In my week-long period of absence I have received so many messages of love and support, and it has been very much appreciated.  It has kept me going and made me feel less alone.

So where have I been?

Well, as you may know from reading earlier posts and following my Instragram page (@endobunny), I have been experiencing an almost 4 week long period of severe, acute and excruciating pain that started when I was awoken in the early hours of the morning to a sensation of something bursting on my left side.

Now, I spoke to numerous GPs and visited them on a few occasions.  Unfortunately, they were never my normal GP (they were away) and that led to them being dismissive and telling me it was simply my Endometriosis and there was no known cause – my nerve endings were signalling for no reasons and there was nothing they could do.  I knew something was wrong and I knew a cyst had ruptured, but no one believed me.

I actually had the sensation of a cyst rupturing 4 times in that period, and no one believed me.  I had explained on more than one occasion that my husband and I had contemplated taking me up to A&E and that I was missing more and more days off work.  The only thing they did for me was either advise me on my pain relief or tell me to arrange an appointment with my gynaecologist.

My saving grace was a lucky appointment with my usual GP when they came back. Upon seeing them and describing what had happened, they instantly became worried and starting doing all sorts of tests – I had blood tests there and then, I had examinations, but the GP concluded the same thing I had known all along – I had experienced multiple cyst ruptures and it was likely that I had a lot of fluid in my peritoneum that was causing prolonged irritation.  An urgent ultrasound scan was arranged for me (which I had today) and advised that if my symptoms worsened or changed, I was to contact the practice or 111 immediately so they could send me to A&E with a referral, rather than my just hanging around there.

Thankfully, I had arranged an appointment with my gynaecologist quickly and I had that appointment yesterday and there were two things to come from it;

  1. my ultrasound revealed a massive (like, seriously massive) blood-filled cyst that had ruptured, and there was a large pool of blood just sitting there just chilling
  2. there was talk about me having a separate gynaecological condition – Polycystic Ovaries Syndrome (PCOS).

Now, the result of my ultrasound was great because not only did it prove I was right and knew my body, but I had something to go back to those that didn’t believe me.  They are hoping that it will reabsorb itself and sort itself out.

However, talking about PCOS was not only a bit of a surprise, but it meant that I had another thing to deal with.  The reason it came about was because my consultant was talking to me about the length of my period, length of my cycle and associated symptoms I was having (acne, body hair etc).

PCOS is a spectrum disorder, meaning that you can have all the physical symptoms (e.g. acne, body hair, polycystic ovaries) but no real problems with periods or fertility, whereas you could have a mixture of symptoms or very few.

My ovaries are borderline polycystic (typically you need at 12 plus folicles, and I have 12), but due to the acne, body hair and period symptoms I am being treated to see if it makes any difference.

So, my treatment currently consists of ovulation testing, to see if I am ovulating late or actually ovulating at all, and having a low GI diet (low glycaemic diet, basically low sugar).  If the diet proves beneficial, then I will be placed on metformin unless I am not ovulating at all, in which case I will be placed on Clomid (I believe this is an IVF drug but please don’t quote me on that – I am not entirely sure and have not done my research yet).

My appointment also identified that my left ovary is super SUPER painful and at the moment, my gynaecologist is not sure why.  It is the only ovary that has been covered in Endometrial growths, had very large cysts and a lot of my pain comes from that area.  At the moment, they want to see what happens after this ruptured cyst resolves.

My overall worry is that if my pain does not resolve, then what if they missed something during my most recent laparoscopy?

Worries aside, I also had my other ultrasound scan today, the one that my GP referred me for as a urgent case.  Now, I was under the impression that it would be a scan of my liver, gall bladder and appendix, as well as my gynaecology anatomy, as that is what my GP seemed to suggest.  However, it was simply one of my bladder and gynaecology anatomy.  Basically a painful repeat of yesterday (which was painful enough) that revealed new things of me being close to having a period and a small cyst on my right ovary.

Great.  Just more pain for not a lot of gain.

My current situation?  I’m still in pain and I am still trying to work.  All my blood tests came back as normal (which is a good thing) and the results of my ultrasound were positive in the sense that I now have physical proof and should always trust my body.  I always think we know our bodies best, do you agree?  I almost feel like writing to my GP practice and telling them how important it is to believe your patients and not be so judgmental with regards chronic illness – the pain is not just in our heads.

I felt it important to update you all as I know I have been missing for the last few days, but I hope you can understand why.  I’ve been in a blur of agony, strong painkillers and my new addition – morphine.  But the love you have shown me has kept me going, so thank you!

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