Friday, 1 November 2019

Hello Endo My Old Friend...

I've come to talk to you again.

Its been a long time since my last blog. In those years I've been lucky enough to marry my best friend, and give birth to my two gorgeous babies who I will forever be grateful for. 

I've also had two further surgeries to remove endometriosis. That's 3 surgeries in 5 years. My last surgery was in November 2017, and I fell pregnant with my baby girl in the December. Fast forward 9 months of pregnancy and 6 months of breast feeding and my period was back with a vengeance.

First it was the pure amount of blood loss. I was going through a pad an hour for the first day of my period and leaking through clothes. I was mortified when I met a friend for a coffee and had to leave covered in blood for everyone to see.
Then the fatigue and dizziness started, making looking after little people quite challenging. 

Then the pain started again. I hadn't curled up on the floor in pain for quite some time. But here I was again, doubled over in tears on the floor. The pain was so bad, one day I considered going to A&E. That's when I knew something needed to be done to help me live with this again.

I arranged a meeting with my consultant Mr. Griffiths who has been nothing but the best during my endometriosis journey. I'm so lucky to have him as my specialist. We discussed everything from contraceptive to chemical hysterectomy to full hysterectomy. The word hysterectomy at 34 still sends shivers down my spine, but I know in reality I am one of the lucky ones. I'm lucky I'm not one of thousands of girls who have had hysterectomies in their 20's. I'm lucky that I have two beautiful babies when so many women plagued with this suffer infertility. I'm lucky my endometriosis hasn't damaged other organs. I'm lucky.

So in December I am having the coil fitted. My consultant has advised me to have this under general anaesthetic because he doesn't t think I'll tolerate the pain. I'll also be on the pill at the same time in an effort to help reduce the pain and blood flow. I just hope I don't turn psycho with all those hormones floating around my body.

If this doesn't help then we move onto the chemical hysterectomy to 'switch things off'. So I'm hoping the coil will help me. 
I'm trying to avoid further surgery whilst Lucy is so young. Jack was two when I had my last surgery and it was so hard for us both. 

There has been so much positive coverage for endometriosis recently in the media and in the house of commons. I really think the more people know about it the better. The more we can share our experiences, the better people will understand. 

This is not just a period. 
This is my life with endometriosis.
I am lucky. 

Tuesday, 9 April 2013

Pants 2 Endo!

March saw Endometriosis awareness month, and saw me, and 14 of my family and best friends hit the streets of Bristol in yellow pants, raising money and awareness for Endometriosis UK

With money still coming in, the balance raised so far stands over £2000!  
Thank you to everyone who took part, and to everyone who donated.

As promised, here are a few pictures taken along the way, courtesy of 

This is us setting off to our Bristol Evening Post photoshoot!I'm so proud we made it into the local press, raising even more awareness for Endometriosis in the local area. 
You can read the release here

It was a little chilly to say the least - we all look like Michelin Men with all the Layers!
This cute little boy had 30p to give to us... he dropped 20p of it down the gaps in the jetty, 
but he was so cute we all let him off.
Lots of people stopped us to ask what we were raising funds for, and what Endometriosis was. This gentleman tried to correct me when I told him Endometriosis affects over 176 million women worldwide. He said that I must mean 176 thousand. Nope... Million I'm afraid.  That's one more person who understands the extent of this common illness.

We all had such a brilliant afternoon!

By the end of the walk, some had given in and bought coffee in an attempt to defrost their insides.

  Look at the relief on those faces - its nearly over!!!

Practicing for my big break in modelling....
it's just around the corner....
I can feel it !!!

Thank You!
(Left to Right)
Trudy, June, Julie, Nicola, Hanna, Sally, Vicky K, Kate, Vicky M, Asha, Mum (Karen), Me, Chantelle, Christine, Hannah 

Sunday, 3 February 2013

2013 So Far....

The end of 2012 was a strange time for me.  After years of symptoms, I finally had my diagnosis, and am now learning to live with the cards that have been dealt to me. I do consider myself as very lucky, because whilst this was not a chosen part of my life, it is now a part of me, and I am able to help spread the word of an invisible disease affecting millions of women.

I am one of the lucky ones, yes I get bad days, when all I can do is cry and curl up with hot water bottles, but I also get the good days, and I am thankful for those days of normality, which a lot of people take for granted.  I know it is always there, I can feel it every day, some days its just nicer to me than others.

I'm now back to working full time, and have moved locations.  Going back to work wasn't easy for me, getting back into the routine of early mornings following sleepless nights,  and actually attempting to engage my brain during the day. It's been difficult too having conversations around absence management, and trying to fit in hospital and doctor appointments outside of working hours. There's not been a week this year where I've not had an appointment or test yet.

We're a month into the new year, and I've already had 2 doctor appointments, 2 sets of bloods, and one hospital trip for another scan.  I'm also waiting another hospital appointment involving general anesthetic, a consultation in March, and more intrusive tests on Tuesday (yes, its on my lieu day - fun times for me). They are currently investigating other issues now - which obviously plays on my mind.

I try so hard not to let it get me down, but the constant appointments are like mini reminders that this is me now.  I am on the whole a lot less focused on it all than I was last year, being back at work definitely helps to keep my mind off of it all.

I've also joined slimming world, and two weeks in, I am 4 and a half pound lighter. This has definitely helped me to focus on other things in my life too. I want to get back to the way I was, be happy in my own body again. Something I've not been for a long time.

So while my body seems to be tearing me apart inside, I refuse to let it win. I take more tablets than I'd ever have imagined as a 27 year old girl, and I do struggle, but this is me, its not going anywhere, and its not going to change. I am doing the very best I can to play the cards I've been dealt, and am so thankful for the support of family, friends, endo girls, and of course, Jim, who has to put up with me every single day - Thank you.

This blog is not intended to be me moaning, this blog is intended to spread the word of Endometriosis. It is intended to help other people understand what this is and how it affects millions of women in the world.  If I can educate one person on this invisible illness, I am happy.

Thank you for taking the time to read this blog.


Tuesday, 18 December 2012

Adapting to Endometriosis - The Diet

I love food. Love it. Cake, pasta, chocolate, chips, coleslaw, the list is endless - all the healthy stuff! So when I was diagnosed with Endometriosis, and was told that changing my diet could help, I wasn't exactly jumping for joy.

So here's the deal, cut out or reduce -

  • Wheat - this includes cakes, bread, pasta (all the good stuff)
  • Gluten
  • Red meat
  • Caffeine - (I probably drink an average of 8 cups of tea per day, which I know is a little excessive)
  • Chocolate (Chocolate?! who doesn't eat chocolate?!)
  • Dairy (including milk, cheese, and butter)
  • Eggs
  • Fried foods
  • Alcohol

I've certainly cut down my alcohol intake over the past few months having hardly left the house, which in turn has cut down fried food at the end of a good night out!
In reality, it is not as hard as it seems, Chicken, fish, salads and vegetables are all good (although apparently organic is better for me due to the toxins in non organic food), and if imagination is used could actually be quite tasty. But I do think I will struggle to cut out caffeine, chocolate and dairy. In fact, I think its safe to say that's just not going to happen, unless things get a lot worse.

So today I went out to lunch with my friend Dave (@atypicaldave - give him a follow). I had the best intentions, but looking down the menu, I was extremely limited. Pasta was a no no, pizza was a no no, burger was a no no, so I opted for a chicken wrap (which is a no no but I figured it was probably the lesser of the evils staring back at me from the menu). Once that was down, it came to dessert. I ordered cinnamon waffle and icecream (ooops - dairy, eggs, wheat and goodness knows what else)
All in all, going out with the best intentions I must say, it was a massive fail, but it was yummy!

I will definitely try to adapt my lifestyle and eating habits to try and help the symptoms of Endometriosis, but I guess it's not just going to happen over night.  I'm eating a pot of coleslaw whilst sat here typing this (ooops again).

If any endo girls are reading this and have any tips for meals or recipes - your comments would be hugely appreciated. I haven't worked out how to respond to any comments on this thing yet, I promise I am reading them though! Follow me on Twitter @kirstyfiskk it really has been a great help talking to girls going through this, and I hope hearing my story has helped spread awareness too.

Sunday, 9 December 2012

Welcome Endometriosis

Last Wednesay I had my laparoscopy. Last Wednesday I faced my fear of anasthestic. Last Wednesday I welcomed something into my life that I am forced to live with for many years to come.

Welcome Endometriosis.

One of the hardest things I have to face is the question - are you feeling better now? Because as stupid as the answer sounds, no I am not. This is a chronic illness that cannot be cured. I will always be ill, I just have to learn to manage and adapt to it. I will work with it so that it shall be a part of me but never define me.

The good thing about this is it is known as the 'invisible disease' so when you see me I won't look ill. I will smile, I will laugh and I will be happy. That's who I am, no matter what is growing inside of me. 

This is a not so glam picture from after my surgery - Drugged up but still smiling! 

I am finding this blog really difficult to write, I have wanted to blog for a couple of days but in all honesty I haven't quite got my head around this yet, so to talk about it is really odd.

For now I will make this short, and I'll try to write more in the week.

Thank you to all my friends, family, and endo girls for your support.

Tuesday, 4 December 2012

The day before surgery...

I have been trying to keep myself busy the past few days so that I don't get caught up with the thoughts of hospital and surgery, which just so happens to be tomorrow.  I cannot believe how quick it seems to have come around.

I've really struggled with sleep the past few days, and each night I go to bed so tired and lethargic, but just don't seem to be able to sleep. Its a mixture of pain, discomfort and worry.  To be honest, as much as I am dreading the anesthetic, at least I'll get a good couple of hours sleep.

I have tidied and cleaned the house over and over again, because it feels like the only thing I'm in control of . It stops me thinking about Wednesday. In fact, I don't think our house has looked this tidy since the day we moved in 2 and a half years ago and it was empty!

I'm worrying about loads of things about Wednesday -

First off the anesthetic. I hope they give me enough so I can't feel anything, but then again, I hope they don't give me too much. Its hardly natural having the power to knock someone out with one tiny needle. 

Secondly I worry about the diagnosis. Is it or isn't it?  This has been going around and around in my head for so long now and I just need an answer, but at the same time I'm scared to hear the answer. If this is Endometriosis, then this is a chronic illness that could affect me for many years to come, and if it's not, then what on earth is it?  I'm trying to work out which is the lesser of two evils.

Thirdly, I worry about the recovery.  My pain threshold isn't exactly high, and speaking to others who have been through this surgery, the first couple of days after surgery are not nice at all.  I have bought in loads of cans of fizzy - thanks to people's advice!

However, all that said and done, I am really looking forward to returning to reality. I have let so many people down these past few months, having to pull out of things last minute. I am truly blessed to have such wonderful, understanding friends and family.  I am also really grateful to the community of girls I have met through Twitter. I never really understood the whole fascination with it, until now. I have been able to talk to other girls in my position, and have been able to get advice and support from them too. So a massive thank you to my friends, family, and endo girls -  I love you all tons!

Tonight a few of my friends are taking me to the cinema - that should definitely keep my mind off of everything. Then its an early night for me, and hopefully a good night sleep. I am due on the ward tomorrow at 7.30am and even typing that made my stomach turn. ARGH!

Thanks again for taking the time to read this, I will post an update later on this week.

Monday, 26 November 2012

The Past Three Months

Anyone who knows me could tell you that I'm always the first to catch someones cold, I'm always in line for the next sickness bug, and to be frank, generally quite lame at remaining in full health. My boyfriend Jim has even said that if I was a dog they would have put me down by now! Haha

In August this year, my body decided that my long run of good health was to come to an end (in fact I don't even remember catching a cold this year) and decided to tell me by bleeding when I went for a pee wee herman. Having spoken to NHS Direct, they advised me to go to the out of hours surgery at the hospital in 15 minutes time. After running around the hospital thinking I was going to bump into Bowie in this Labrynth, I finally found the correct department, and was greeted by a male doctor.  I lay on the examination table, whilst he prodded and poked at me, and having tested the urine sample he came to the conclusions it was 'Kidney Stones' in a European accent.

Now this may not mean something to everyone, but I couldn't help but laugh. All I could think of was the relief that it was nothing more sinister, and  Joey in Friends when he had Kidney Stones!

Still, how bad could it be? He gave me some tablets and said to give it a week.

So I gave it a week and no luck, still pink herman, and still in pain. So I visited my own GP for further advice. He took another urine sample and booked me in for an ultrasound scan. I carried on taking the tablets for a further week whilst I waited for the scan. The scan was very straight forward and quick, with the results to be with my GP in another weeks time.

Again I played the waiting game, and went back to my GP. He greeted me with the information that I did not have Kidney Stones, however, he had noticed a growth on my ovary which he wanted to investigate. This did worry me to say the least. I left the office, having given another urine sample, to ensure there was no sign of infection that had been missed on the previous two tests, and another date for another scan.

My urine sample apparently leaked (unlucky the person who had to clean that up) on the way to the hospital to be screened, so I had to do another. This one was lost. So I did another.  By this time I thought they were just taking the piss (budum dum)

I was getting good at the waiting game by then, and went for my internal scan. This time, I was met by a lady and a work experience girl who was going to 'have a go after'. Now I'm not being crass, but I decide who gets to have a go, and I decided she wasn't going to have one. Not because I don't want her to learn the job, but it was a fairly traumatic and long winded process, and to go through it twice in one afternoon was definitely not going to happen.

So the results are in - 4cm Cyst on left ovary. What should I do? Carry on taking the painkillers and sitting with a hot water bottle all day. Joy. I did however get an appointment to see a specialist in December...3 months later.

So the days turned into weeks, and weeks into months. I missed a friends wedding, my European travels, and my friends hen night that I had planned and arranged. I missed work, friends and real life. Whatever this was inside me, was changing my life, and I couldn't deal with it. The agonising pain saw me curl up in a ball on the floor in tears more that once, and made me so down and fed up.

I decided to pay for a private consultation, which sped up the process from a 3 month wait to a 2 day wait. It set me back a pretty penny, but was worth it. After enduring another internal examination and scan, my consultant confirmed that the cyst had gone from my left ovary, but he could now see a couple of small ones on my right ovary. He said that this didn't concern him, however, he thought the diagnosis was Endometriosis.

Endometriosis is a disease whereby the cells from the uterus somehow detach and become attached to other organs within the body. Put simply, they continue the monthly cycle and bleed, however, there is no where for the blood to go, which in turn can cause scar tissue and pressure on organs. It is extremely common, but at the same time, not well known about. There is no known cause, and no cure.

The thing with this illness is that it can only be diagnosed through invasive surgery. So I am now waiting for my op, to determine whether or not I am one of the millons of women who suffer this disease.

I am worried for two reasons -
1- If I have it I will need surgery to have the tissue removed, and it can affect fertility.
2 - If I don't have it, what do I have? Why am I in so much pain? and When will this end?

Through the past 3 months, Jim has been my rock. He has put up with everything I've thrown at him, taking me to numerous hospital appointments, and always being there when I need him. I am so thankful for his kindness, generosity and love.

I returned to work after 3 months signed off, on a part time basis, working 3 hours per day. 863 emails awaited me, along with wonderfully supportive friends whom I had missed.  On the Tuesday night, my body decided to send me another message, by making the room wobble, passing out, and when coming round, feeling as though my limbs were 100lbs each. Again, Jim was there for me, rushing home and missing out on a night up the pub. I'm not only thankful to Jim, but to the lady paramedic who came to the house (I'm not so thankful for the blue flashing lights, I just hope the neighbours didn't see)!

After returning to work for 9 hours, I was signed off again, with my GP saying that my blood pressure was low even for me. So here I am again, hot water bottle in tow.

Now its December this weekend, and I have 9 sleeps to go until the surgery. I am worried, for those two reasons, but am also hopeful that a true diagnosis may be on the cards. 

Thank you for reading my story so far....