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