Tag / emotion

by ChronicWriter

It’s OK to ask for a 2nd opinion

I have been struggling with extraordinary abdominal pain, fatigue and heavy bloodloss which eventually led to being diagnosed with Endometriosis.

I had my Laparoscopy on my birthday in January 2015. Since then I have still had constant pain. Everyday. It has been an exhausting journey. I have been told to try for babies sooner rather than later, I have been told my illness is chronic and I will have to live with it for the rest of my life.

Now, in my personal circumstances, we always knew it wouldn’t be straight forward for me to conceive, my husband and I had planned to save up and go for a clinic where he would undergo surgery. This would be in a private clinic as it isn’t available on the NHS. My diagnosis then put a time-sensitive pressure on us to conceive, which has not helped my recovery or state of mind at all! How am I going to save £3000? I have left full-time work as I can’t manage my pain during a 40hr work schedule! It’s impossible. Hence, my mood deteriorated.

I have been in constant pain, having to take very strong pain killers; called analgesics. The side effects include: drowsiness, nausea, headaches, itching, insomnia, changes in mood and they are just a few. When on these sorts of tablets, I would lose hours, days at a time, not being able to function, falling asleep, being emotional, it was a nightmare. And what’s more, I got tired of visiting my Dr and being met with a blank expression and the ‘trial & error’ merry-go-round; “try this?”

I ultimately reached rock bottom. I was crying all the time, I was scared I would lose my job, my family were all worried about me getting addicted to these tablets.

THEN… 

A good friend & relative of mine did some investigating and told me to register with a different Doctor’s surgery. At this new surgery, I was to ask for Dr D (confidentiality!!) and that he specialised in symptoms like mine, women’s health etc. What? Why hasn’t my Dr mentioned this before? So I went and registered, filled the forms out, spoke with a lovely receptionist who listened intently to my story and signed me up with Dr D as my named GP. Yes.

In 10 minutes, Dr D was able to give me more reassurance and information that in the 18 months previously. He told me that my endometriosis was not under control. He told me that the next stage would be a chemical menopause like Lupron injections (ermm…No Spank you!) and then it would be surgery; hysterectomy. He said that if I was suffering like this at 25, it wouldn’t be much better at 35, and we would be looking at surgery definitely. He gave me other options about our fertility problem and when I researched this at home, it seemed more practical and much more achievable! He understood my need for pain medication, reassured me that I was using them correctly, and when I asked for slow-release Tramadol (thanks to my Twitter sister @BattleWithEndo!) he didn’t hesitate to sign the prescription.

Dr D has given me a plan, a path to walk and a destination. After so many months of working around lost in my own pain and hating myself and the health system, it feels so good to have some clarification.

By no means am I pain-free but it’s manageable. I am only part way through my journey, but at least now I’ve got a map and things have started to show improvement. My bleeding seems to be settling, I have a little more energy (thanks to vitamins!) and I don’t have as many as the nasty side effects. I’m only taking FOUR tablets a day now.

I feel like me. At last.

There is hope. Don’t feel bad for going to a different Dr. Your health is important and you are entitled to expect and ask for what’s best for you.

A xo

by ChronicWriter

No diagnosis? Misdiagnosis!

Can someone just sling a spanner in the works? Please?!

Below I have drawn a pretty (or not!) picture of what having endometriosis entails and how each things affects the next. It literally effects every aspect of my life. As you can see, it’s a viscious cycle.

image

I’m unsure what can trigger the pain as I can have it through the night, when I open my eyes in the morning, at work, after the gym, anytime. I have read up online and through reference books, I have spoken to hundreds of women in online forums and support groups and don’t seem to be any wiser on how I can help myself!

Before all my symptoms became too much to bear, I had a positive outlook on my life, positive opinions of the healthcare systems and believed I was in good health.

How naive was I? For the past 15 months I have been greeted by blank faces, questioning looks, even expressions of doubt, when seeking help from the healthcare service. I am very much treated on a ‘try this’ trial and error basis, I seem to come out of the Dr’s room feeling more confused than when I went in and have yet another prescription in my hand. I have seen on the news that Doctors are sometimes over-prescribing and overdiagnosing their patients, which is bad. But I must be on the other end of the scale as I have been underdiagnosed. I have recently had a hospital admission where the on-call gynae actually looked surprised at seeing my surgical scars even after I had told her my sad tale. As if I’d lied about it?!

I have reached an all time low in my life and have been crying in Dr’s rooms for months asking for help. I have expressed my desire to have an hysterectomy at 24. I just want it to go away at this point. I have told them I find no joy in my life anymore. Their response? Anti-depressants. More meds.

I don’t like using pain killers so how am I supposed to react to this? It scares me. I am constantly being reminded that ‘these drugs are addictive’ and ‘be careful how many you take’ and so I try to avoid taking them if I can. I can’t always manage it. If I don’t take the pain medication when I need it, I’m literally in the foetal position for hours. I am now at the point post-diagnosis where I have accepted that this is how I am, which is depressing in itself much less without the pain.

Anti-depressants were the last straw. I cannot start that medication. I have decided to try and take control of my life. Hoping to.

I have been to the gym this morning, taking it slowly, I have gotten home and my stomach has inflated to the size of a beach ball, my back hurts, my pelvis feels too wide for my body and I am so tired. All of the time. Tired of my body fighting itself. Pretending to be ok, everyday, is exhausting. I just want to be as normal as I can.

I’m just about done with this shit.

A xo

by ChronicWriter

Dear Mr Prime Minister,

Firstly I’d like to congratulate you on your recent victory in the 2015 General Elections.

I am hoping that the rise in UKIP and Labour votes and how passionate the British citizens are about the National Health Service have caused you to have second thoughts about disbanding it.

I am only writing to voice my concerns about your plans to make the NHS private. Please don’t. Not only is this country proud to have such a great service but the employees within the NHS work hard to make it so. I know it doesn’t always have a good light and I’ve had my fair share of rubbish experiences via the NHS, but it’s a facility we desperately need in the UK.

I am 24 years old. I graduated university at 21 with honours and started working full time in my chosen field within a few weeks of getting my diploma. I had 4 jobs within private facilities and the NHS; working in mental healthcare. I pay national insurance and starting paying back my student loans. I was doing well.

Last year, I visited my GP with complaints of increasing pain every month, coinciding with my menstrual cycle. I was referred to a gynaecologist. He gave me medication and refused to send me for surgery, thinking it would be too invasive. Six months later, in August, I was so overcome with pain I had to drag myself to the bathroom, crawling into the bath to try and find some relief. I contacted NHS Direct (111) and they advised I sought urgent medical attention. My partner drove me to A&E. I was admitted to hospital and given several tests which all proved normal. I was sent home.

I was admitted to hospital twice more last year. Once in September for a week, where the staff in hospital helped me manage the pain before discharging me and referring me to a specialist. The second time was a week before my wedding. The staff, once again helped me manage the pain, which was excruciating- I can’t even describe it. And I only had 3 days on my feet before I got married, but I made it!

In January 2015, on my birthday, I had my first Laparoscopic surgery. My consultant found that my ovaries had fused to my pelvis and I had adhesions all around my reproductive organs and pelvis. These all had to be lasered away. I was diagnosed with severe Endometriosis.

Endometriosis is a chronic illness in which endometrial tissue (normally found in the uterus) is found in other parts of the body. It is commonly found in the reproductive area but can be found in the abdominal cavity, it has even been found in the lungs. Each month, hormonal changes in the body trigger the endometrial tissue to dissolve (a period), which means the tissue in other parts of the body bleeds as well. This can lead to severe pain. 1 in 10 women suffer with Endometriosis. There is no cure.

It is now 5 months since my surgery and I am in pain every single day. I have had to leave my full time job in healthcare as I was unable to do 12 hour shifts. I now work part-time as a receptionist. I can pretend to be alright most days and manage to fool most people. But unfortunately, I am not always able to do so, leading to time off work.

If you decide to make us pay for medical treatment or healthcare, I will not be able to afford to manage the awful pain I am in. I am already on several different types of pain relief and anti-depressants. I benefit so much from the NHS and they have helped me a lot. I would go out of my mind if I didn’t find some relief from my chronic pain.

So, I am pleading with you Mr Cameron, please please do not do away with the NHS. I know I am only one of thousand’s who wouldn’t survive without it.

Yours faithfully.

by ChronicWriter

Reaching the limit

I can do this?

Over the past few months a lot has happened that has impacted my life in a huge way. I am learning to live with the restrictions my body puts on me, learning what my limits are all over again. Training myself to work through pains and emotions that would have broken me 8 months ago. Slowly, I am realising that my mind must acclimate to these changes as well and acknowledge them if I want to be sane.

You see, my mind is all for hitting the gym for an hour, more than willing to stuff myself at meal times, happy to stay up all night watching Netflix. But the fact is, my body is no longer capable of doing any of those things. (have you read the Spoon Theory? This might help you understand my predicament)

8 months ago I was able to do 13 hour shifts and overtime in a high-stress role. Sadly, I just can’t do that anymore. I’ve missed it and been sad, resenting my body for fighting itself every month, tearing itself to bits, hating it. But my husband just said; “you can’t and it’s that way it is, being sad about it isn’t going to change it and you just have to adapt” – to be the best I can be.. now.

Getting back up..

When your body and/or emotions take a hammering, you’ll find ways of coping. Little tricks that help me to deal with the shitty situation I sometimes find myself in. This past week, I spent another few days in hospital, my little home away from home, with divine cuisine and luxury facilities. Between waking from my pain-killer induced dozes and trying to manage a pain storm, I read. If I ever find a few moments when I can concentrate enough to see the words, I can disappear, be absorbed into the pages and live through the characters in the story – just for a while. It’s my great escape. I have read a lot in since we said goodbye to 2014. Life can be difficult, but it’s the little things that can make it a little easier; a good book, a long bath, pudding… everybody loves pudding.

A xo

Books I have read recently & can recommend:

Please see my book reviews as some are included!

by ChronicWriter

An Apology.

Being the partner of someone who suffers with Endometriosis is hard. It’s hard to see the person you love go through so much, seeing them in pain constantly and feeling helpless. It’s difficult to watch her lose a part of herself each month as pain wracks her body or hormones warp her spirit, turning her into someone she’s not.

I can only guess how hard it is, I can’t imagine what my husband has thought or felt during this last year; pre-diagnosis and post. I’m just thankful he’s been with me.

Over the past several months, I have not been myself. I have not been the woman he fell in love with. You might say ‘it can’t be helped, you’ve been through a lot’ which is true in a lot of ways. But why should he have to suffer someone he no longer knows?

Pain turns people into a shadow of the person they were without it. Pain takes hold and destroys the spirit like a cancer destroys the body. A person can only take so much before they give up to despair. Luckily my husband has stood by me through it all.

I have had the Depo Provera injection. This will be the third week after my first dose. My doctor told me it would help with the pain. It has a little. But it’s something else that’s worrying me. The Depo Provera injection says ‘Mood Changes’ on the side effects list. Understatement. They say hormones are a big part of distinguishing who you are. Hormones have a strong relationship with emotions. And being someone who is madly driven by emotion- this has had a huge effect. I’m not making excuses, I’m just trying to understand.

My thoughts are darker, I’m moodier and I have mood swings so bad I feel like I might have whiplash. I have just started a new job which is causing me to concentrate and has taken its toll on my brain which has been on sick leave since December. I’m tired, my husband is tired. I don’t find his jokes as much fun as I used to. The little patience I did have has all but expired. This has started to affect my marriage. I’m pretty sure my husband, family and friends have noticed.

I’m trying my best to be me, it’s hard. But I’m just asking for time and patience and a little understanding. Like people say ‘anything worth having is never easy.’ I thank you for your patience.

But in the meantime, I apologise wholeheartedly for being a bitch.

Sorry.

A xo