Posted in Health

The Operation and After

It has taken alot longer than I expected to write this one, I guess its harder than I thought it would be to write about everything as I’m still so angry,

I want in for my operation that morning Tuesday 14th March.  I was a nervous wreck the idea of being asleep and letting someone cut into me scares me, more than anything. That morning as far as I was concerned I was going in to have a cyst removed from my ovaries that was all but I still gave them clear instructions under no circumstances wore they to remove my ovaries, just in case.

That morning my sister came with me and waited till I was called in for my operation which was a few hours of waiting around, I was so nervous and scared. I have to say the staff wore amazing in the operation theatre they wore very kind as I delayed everything as I have terrible veins and they couldn’t get a drip in. I began to panic and started shaking, I was so cold and scared they attempted everything to calm me they filled up gloves with hot water and placed them on my arms to bring up my veins nothing worked and I was getting more panicked and it was also very sore as the rooted in my arm for a vein, in the end they had to put me asleep with gas to put the drip in.

When I work up I was in recovery I was extremely sore and just wanted to see my family and I even asked to be taken up to the ward the first thing I did when I seen my mam and sister was burst into tears and repeat over and over how horrible it was. I was transferred into a bed and nurse came in and said I will be realised that night but it was already dark out and my operation took a lot longer than expected, it took hours at this stage I did not know this. The ward I was put into was a cancer ward something else I did not know about but my family did. The nurse came in and out and checked my blood pressure I was in extreme pain and I couldn’t sit up each nurse told me I would be out that night and I would be fine by Patricks day which was on Thursday 17th March.

The doctor came into see me and informed me the cyst had been removed and it looked like I had endometriosis, it was said quickly and at the time and I didn’t take it in as I knew nothing about endometriosis. I was still drugged she informed me when I came back in for my results to make sure I had someone with me and that was it.

As I knew I wasn’t staying the night I kept trying to sit up but I couldn’t the pain was horrible I’ve never felt anything like it before.  I couldn’t move my mam and sister kept trying to help me but I was so scared and kept saying something wasn’t right, in the end I felt so silly the pain shouldn’t be this bad. My Mam spoke to a nurse and it was decided that I should be kept in my family stayed with me as long as they could and left about ten that night.

By this stage I was getting no pain relief and was given only paracetamol and I couldn’t move. That night was up there with one of the worst nights of my life, It was like I wasn’t’ a person any more, I felt so vulnerable and scared the worse point was when I needed to go to the bathroom badly but I couldn’t move. I was terrified in the end I had to be given a bed pan which I was so embarrassed the nurse left me and I began to get even more terrified as it was like my muscles wouldn’t work finally I went but I was left lying there till the nurse came back.

 I’m not going to lie I did call her a few times for more pain relief but I was ignored and told I had been given paracetamol and that’s all I was getting. I was dealing with the same nurse all night and at 2am she told me she was going to pull me out of the bed at this stage I got so scared and the pain was so bad. I couldn’t sleep and my phone had fallen on the ground so all I could do was lie there so I started slowly inching myself up as much as I could most of the night.

 When it started getting a bright out of course I needed to use the bathroom and decided I had to face my fear and get up, I called the same nurse who I was dealing with all night and told her I had to go to the bathroom and would she help me out of bed she informed she was too busy and would come back. By the time she came back I was about to wet myself and the pain of needing to use the bathroom and top of the other pain was horrible and again I was terrified I would wet myself. In the end I asked her for the bed pan, I was told no and we did have a fight and again she walked off and left me. When she came back and took it she finally helped me out of the bed the pain was even worse I felt dizzy and sick, I told her I felt dizzy and she informed me to stop saying that as she was too busy to sit with me and left.

I sat at the edge of the bed from around 6 in the morning in extreme pain still in my gown, I was so scared and the pain was getting worse and worse again I was given paracetamol. I was told about 8 that morning I would be discharged  so I contacted my family after I finally asked a nurse to pick my phone up and got my mam to collect me we live about 15mins away from the hospital.

At this stage I had to use the bathroom again I knew I had to stand up and walk so I called a nurse to help me, thankfully the nightshift nurse had left. This nurse who I explained to that I hadn’t walked since my op brought me into the bathroom left me beside the toilet which was what I wanted and shut the door and left but never turned on the light, so I had to struggle back over to the door and turn the light on and pray I wasn’t going to fall in the dark or faint with the pain.

As I was waiting on my Mam to come they kept trying to get me to leave my room as they wanted the bed and I had to fight with them saying I can’t move and at this stage I couldn’t dress myself thankfully my Mam arrived who helped me get dressed got me away from basically what I now refer to as hell.

Again because I was told I should be up and moving in no time, I couldn’t understand why I wasn’t able to. I couldn’t even lift my legs to get into bed without help as it was so sore, for over a week I had to be helped in and out of bed. I also attempted to go on small walks but I was just in pain all the time.

At the end of the two weeks I googled Endometriosis and I was devastated by what I read why wasn’t I told more about it when the doctor informed me. After two weeks I went back to work but was in extreme pain and couldn’t do a lot and was terrified someone would bang into me.

I got my letter from the hospital to get my results of the op for early May, no doctor or nurse checked anything within that time. I did go to my own G.P who also done no check-up, because I was so  up-set about the Endo he ended up getting angry with me and just wanted to put me on antidepressants. I have since changed G.P’s over this.

When I went into get my results I brought my Mam like I was asked the first thing out of the doctors mouth was, I was expecting to tell you that you had cancer everything looked cancerous, thankfully I don’t. They wore also surprised that I had not been complaining about pain before the op and even said she didn’t know how I could walk with all that was wrong with me.  Than I was informed I was covered in Endo and had which they removed but will grow straight back, I am not sure which way they done this as I have since found out there are two ways than I was told my ovaries wore touching this didn’t came up in any scan and they did separated them. I also should have been on complete bedrest for two weeks and at least a month off work none of this was communicated to me after the op, I was told numerous times that I would be fine in two days’ time.

In the appointment I was in complete shock I was not expecting to hear any of this I believed my pain threshold was terrible even in May months after I was still sore, I did mention this and she said of course it would be your body had been through so much. For months I believed I was going mad. At no stage did she examine me but sent me for blood tests and informed me I would be discharged from their care and the results would be sent to my doctor which they never received them.

Now Endo means extreme painful periods that over the counter pain killers will not work and I have since found out I should have been sent to a pain clinic but no I was told I had to listen to my body from now on and if something felt wrong to go to A&E.

So of course I ended up back in A&E in June in pain, after a pregnancy test I was given a pain killer drip and pain killers for home and told to come back the next day for a scan and when I got the scan they found another cyst and I was sent home again this happened on Thursday/ Friday which are bad days to end up in hospital as the gyno only sits on Tuesday. So Tuesday came and I decided to call Beaumont myself and managed to get an appointment for a week later.

I brought my sister to the appointment and the gyno suggested I get an injection to put my body into menopause just to give myself a break and my ovaries a break, he informed me there was two way one was an injection every month for three months and see how it goes or just one injection and get on with it. I decided to go with an injection each month and we both agreed. Now this really surprised me I assumed he would give me the injection, oh no he wrote a cert for my doctor to do it and he also wrote the wrong cert, he gave me the cert for one injection, I had to wait a week to contact him as they only sit on a Tuesday. Now I brought my sister with me to the appointment how she could take everything in as sometimes you don’t hear everything he says and mistakes happen but he denied making a mistake and got annoyed with me and informed me he wanted me to get the one injection for three months. In the end I had no choice but to go with what he said.

The three months will be up on the 20th September but it will take longer to leave my body, it’s been horrible I’m a mess with hot flushes I am dripping wet half of the time. I’m wrecked all the time as I can’t get a good night’s sleep and my bones hurt. I would have never got this done if I knew it would been this bad but no one explained it to me.

Nobody seems to explain anything there is no communication what’s so ever and woman’s health is being ignored one in ten woman suffer with Endo yet there is no specialist in Ireland. In gyno clinics they don’t have the correct equipment nor do they examine you. If you are not from Ireland you may not know in Ireland it is illegal to have an abortion, I am not going to go into if I’m for or against this but I do believe that money is not put into woman’s health care because of this, as when people hear about woman’s health care they think of abortion straight away and that should be something completely separate.

I really hope writing about this helps people to understand more about Endometriosis, I’m still learning myself so any mistakes on here please let me know because I will take any guidance.

Lots of love

Carol

xxx

Posted in Health

Being an outpatient

I hope you don’t mind me breaking the story up like this as if I didn’t it would be a very long and boring post.

My first appointment with the gyno team went well in October 2015, they didn’t examine me or anything but they don’t seem to do that in clinic at all. It was decided they would take the wait and see approach and I had read online that with cysts that’s what they do so I was happy enough. I did ask about the pill to help but was asked if it was for contraception reasons and I’m not seeing anyone so I said no, so they decided there was no point and I went on my way with another appointment in three months.

Now I  didn’t complain about sore periods as I assumed it was normal also I was given out to about not getting a smear test done they did not offer to do one either, I know it’s important but I am a chicken.

My next appointment in December 2015 I went to with the gyno team they couldn’t do anything as I was meant to have an ultrasound beforehand, they do not have their own ultrasound machine and they do not do it on the day, madness I know also the wait for an ultrasound can be months so I was sent privately.

Another appointment was made for a scan and an appointment with the gyno team was made a month later again the cyst was still growing.

While this was all going on cysts wore bursting inside me instead of going to the hospital I was dealing with it at home, as I felt it was better than having to stay in hospital and nothing being done.

This meant night outs wore ruined as I had to leave as a cyst burst inside me. After your period the danger zone is the next two weeks that’s when a cyst is most likely to burst, again this is what I have been told so my life was constantly on hold and then my period pain always starts the week before my period so I felt like I had no escape from it.

These appointments went on and on till April 2017 and I was also told to go on the pill as it might help even though I suggested it instead of just going to the doctor myself I listened to them, at no time did any doctor examine me during these appointments.

In between all this in 2017, I finally got sense and went for a smear test and it hurt so much there was blood and tears, no one told me this could happen. I done it at lunch time and I was in pain all day, also a sign of endo something you are not told.

In April this year when it was decided I urgently needed to be operated on and I was given a note to go to the bed management, I think that’s what you call them and I went straight down to them. I was told it wasn’t urgent by them and I would have to wait a year. I just started crying then and there the lady dealing with me said the doctor had not wrote urgent on my file and unless you have cancer it won’t happen and suggested I start going to A&E in pain which is something I didn’t want to do.

Now the Beaumont gyno team are only there on a Tuesday, so I had to spend a week waiting to call them regarding the wait and it was very stressful, thankfully it was decided it was urgent and I was told I would be operated on in the next three months.

I got given another appointment to see a nurse for bloods and blood pressure and told I would be sore but I’ll only be a day in the hospital and someone will need to collect me and I was to rest.

On Monday 13th March I got a phone call from Beaumont and was informed the operation will be tomorrow the 14th thankfully I have an understanding boss.

 

Posted in Health

First A&E visit

As I said in my case cysts began to grow and also explode, now I just believed I had cysts on my ovaries at this stage. I knew I had them as they had exploded a few times in the middle of the night and I never went to the hospital till it happened in the middle of the day. Of course it was my Mam that forced me to go to the doctors and they sent me on to the hospital on Thursday 15th October 2015.

A&E in Ireland is not a nice place and the ques are always long, I went into see a nurse first was given pain relief but by this time the pain had gone it just felt like someone had kicked me in the stomach. I was looked at by nurse who informed me
not to eat or drink anything and she also put a line for a drip in my arm and took blood to make things worse I have terrible veins so I hate getting bloods and sent back out to the waiting room. A few hours later, I’m finally seen by a doctor well three doctors who said it was my appendix even though I told them it wasn’t and at this stage the pain would of gotten worse instead it felt like I had just gotten a kick in the stomach. I was admitted into the hospital and given a chair, this is normal in an Irish Hospital. After about hour I was sent for an x-ray on my lungs as I had a cold but not sent for an ultrasound. I was lucky enough to get a bed on a ward that as they wore planning on operating on me in the morning which was not happening without a scan first.

The next morning the first three doctors came around read my chart and told me I should be able to go home than another three doctors came around and informed me my operation went well, they had not even read my chart and got me mixed up with someone else and also said I should be able to go home at no time did they examine me. Than all the doctors came around in a group with a lady doctor who was in charge who read my chart and fianlly examined me and informed them my pulse was ratty and my bloods wore all over the place and I needed more tests.

It was then decided I should be sent for an ultra sound which took a few hours and I also had to get an internal scan which was not nice at all but the nurse was lovely.
While I was waiting for a scan a junior doctor kept popping her head into see if I had my scan done as things have a habit of going missing in hospitals.
When the scan was finally done I was sent back up to the ward and I was told I could finally have some food by a nurse and that I was being kept in again another night and as it was a Friday there was no doctor around to speak to me or give me a reason why of course I was scared to death and very upset.
At this stage all I wanted to do was go home and have a shower, the shower in the hospital was disgustingly dirty so you could not use it so of course I was checking myself out till I ran into the junior doctor at the lift who informed me in the hall way in front of everyone that I had loads of choclote cysts leaking blood, which is a sign of endo now I did not know this at the time.

I decided it would be smart to stay in the hospital as the gyno team would be around tomorrow, well that’s what I was told but it’s the weekend and of course Saturday came and no doctor arrived so it was decided that they would realise me and make an outpatient appointment for me for Tuesday and at this stage I just wanted to go home and shower and get a good night’s sleep.

Posted in Health

My Health 

Anyone who reads my blog knows I applogised for lack of posts as I was sick, I didn’t go into detail and I really thought long and hard if I wanted to write about what was wrong with me and I decided maybe it can help someone.

I have endometriosis.

First off I’m not a medical professional or even an expert on this,this is my story.

Let’s start with what endometriosis is, I had never heard of it either.

 So tissue that is meant to stay in the uterus grows outside of it. Mostly on your ovaries, bowel, bladder, and elsewhere throughout the pelvic cavity. So that sounds shite but it gets worse because it’s uterine tissue it bleeds once a month and your body cannot clear it. This than leads to swelling, inflammation, and continued growth of the tissue which may lead to cysts growing and in my case it did.

As you may have guessed this leads to very painful periods and bleeding heavily.

The pain would wake me up at night my back my stomach and my legs. At times I would just sit in work praying the pain would end no pain killer’s seemed to work. If you wore to look up my google search the main question I asked does period pain get worse as you get older, I never seemed to be able to find the answer.

 The heavy bleeding, I’m going to be as honest as I can  even if it is embarrassing. No matter what I used towels tampons, I had to run for the bathroom in the morning as the blood would just run out of me and I would destroy everything .

Also ovulation is a killer you can feel it happening it stops you in, in your tracks.

Than the mood swings with me it was like I had a voice in my head telling me no one liked me. I would sit there and look at my wrists thinking about cutting them and dreaming of the blood running down my arms but I just put this down to having your period and everyone has PMS.

Than the worse thing is lack of energy,  I am exhausted all the time it even hurts to just think of doing things.

How to find out if you have endometriosis, well the only way to do this is by having a laparoscope.

So over the next few days or even weeks I’m going to tell you my story. I’ll start at the beginning my first A&E visit and what’s going on now.

Lots of love

Carol

Xxx