"Endometriosis"

About: John Coupland Hospital / Gynaecology Lincoln County Hospital / Gynaecology Royal Hallamshire Hospital / Gynaecology

(as the patient),

Three years ago I suffered severe pains down below and around my lower back. I was having very strong periods  they would last for weeks and weeks. I would faint and cripple over in pain.  I had a seven year old and a three year old. It got to the point that I wouldn’t go anywhere. I was taken into hospital for pain via an ambulance one evening.  I was taken to gynaecology ward, I was told I wouldn’t be seen. I had to be an outpatient. 

I was put into a list. After 8 weeks I was told I had an appointment at Gainsborough with a gynaecologist. This experience was dreadful. Their attitude was awful. They told me that they wouldn’t do anything for me because of my weight. They said it’s just bad periods and I can take pain relief. Come back when I have lost weight. I am a size 16. I’m not exactly a large large women. 

Yet again four months later I was taken into a and e again. I had passed out in pain. 

The gynaecologist on ward round said that there were basically worse people than me and I probably had the onstart of endometriosis. No investigations were done and I was given no support for pain or growth. I was again told I was over weight. During this visit to me a junior Dr seemed rather confused that the gynae wasn't doing anything, and questioned why they would leave me from looking at my notes. 

The gynae said I would have to wait to come back in to see them. I was sent out of ward with nothing. 

I waited and waited for around 6 months. 

Finally a Dr saw me and wanted to do a laparoscopy to see what was going on. 

In June last year they did just that. They found that the endometriosis cysts were 8cm in diameter and that it was wrapped around my bowel and growing up my urethra. He transferred me to a Dr at Sheffield. 

As they didn’t know how I had been coping  

Now a year On. I am on a hormone treatment. Living on morphine and still awaiting treatment. 

My cyst is 16cm in diameter now and my bowel is getting worse every day. I could end up with a colostomy bag. And lose a kidney. As I need stents. 

All of this could have been prevented if someone listened and took me seriously. 

I am currently off work. It has affected every aspect of my life. My children don’t have a mummy every day. It depends how my body is. I am chronically fatigued. And in pain. I live on morphine. And that is no way to live. 

I feel let down. I have come across some very unhelpful people. If it wasn’t for the one doctor at Lincoln actually investigating I don’t know what would have happened  

More needs to be done. 

Lincoln have never seemed interested. I thought the staff acted inconsiderately. Every time I have been on a ward at night. They are loud and un thoughtful. On numerous occasions I have been left with an I v drip in for hours and hours. In a ward of only three other women. 

Asking for pain relief while they sit around talking. 

I feel I have been mistreated and left.Why would you treat a person like this? A women with a professional job? A family? 

Responses

Response from Lisa Marshall, Interim Sister, Gynaecology, United Lincolnshire Hospitals NHS Trust 2 weeks ago
Lisa Marshall
Interim Sister, Gynaecology,
United Lincolnshire Hospitals NHS Trust
Submitted on 24/06/2020 at 11:48
Published on Care Opinion at 11:49


Dear KAG28

I am sincerely sorry for your experience whilst within our care. This is below our expected standards. It is extremely important to us that patients feel listened to and supported at all times throughout their journey. I am really disappointed to hear that this was not the case for yourself.

Thank you for sharing your experience, I would like to investigate further to ensure that improvements are made. Please contact me Matron Lisa Marshall at lisa.marshall2@ulh.nhs.uk to discuss further and understand what else we can do to help and support you at this difficult time.

Kindest regards

Lisa

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Response from Deborah Hopkinson, Patient Experience Co-ordinator, Sheffield Teaching Hospitals NHS Foundation Trust last week
Deborah Hopkinson
Patient Experience Co-ordinator,
Sheffield Teaching Hospitals NHS Foundation Trust
Submitted on 03/07/2020 at 16:30
Published on Care Opinion at 16:35


I was very sorry to hear of your experiences and wondered if you would like to speak to someone about the current situation and Sheffield's involvement of your care? If this is the case please could you contact our Patient Services and Liaison Team on telephone number 0114 271 2400 or e-mail them at pst@sth.nhs.net who will be happy to assist you.

Kind regards and best wishes

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