Stephanie’s Hysterectomy Story

Type of Hysterectomy: Laparoscopy assisted vaginal removal hysterectomy.
Age at surgery: 56
Location: Raigmore Hospital, Inverness, Scotland

I had barely ever had a bad days health in my life. I had 5 children within 7 years when younger, 3 daughters and then twin boys. I had not had any signs of menopause; was still regular and normal and had not had any other signs that anything might be amiss. I did not suffer at all. I was on no medication for anything, everything was fine. One day out of the blue I was standing in my kitchen and had enormous blood loss, followed by tingling sensation of my tongue. I actually though I might have had a stroke or something. I immediately rang our 999 here in UK and within 4 minutes an ambulance arrived. My temperature had shot up to silly high, my blood pressure was 220/110 and pulse 110. Paramedics rushed me straight into hospital. They put me on intravenous antibiotic, and did all kinds of blood tests, everything normal. They kept me in. Had cervical smear and biopsy, then lung X ray, followed by ultrasound of womb and liver/kidneys scan. Everything seemed fine.

A couple of days later the blood pressure had dropped back to my normal of around 120/80. Consultant said he would like to do hysteroscopy under GA a couple of days later and fit a Merena coil at same time to stop heavy bleeding in future. Had that done. 5 days later they said I could go home, and just as I was about to leave hospital, the consultant called me in. He looked ashen faced and was gobsmacked. The biopsy done when I had the hysteroscopy had shown endometrial cancer stage 1, and I would need hysterectomy. He told me to write down all the questions I would have, so I would remember to ask them when I went back. I went home and was then called in for MRi scan about a week later, and the day after the scan the main consultant called me in to chat about those results. He was so kind, so calm, explained so well, took time with me and confirmed, there was no visible spread, it was stage 1a and a hysterectomy was booked for 6 weeks later. He wanted to attempt it by laparoscopy because he said I would heal better and be less traumatised. He said because of my age and to be sure they got everything and prevent anything in future, he wanted to “offer to take” take ovaries, cervix and tubes as well as womb.

I did not explore any other treatments because I trusted what he said and his detailed analysis of the situation. He allowed me to ask as many questions as I had. That is also why I did not seek a second or third opinion. I had also spent a week in hospital already and so was very familiar with these consultants and the gentle and careful way they worked with everyone they treated. I decided to go ahead as I have a husband who I love, 5 children and 10 grandchildren and I wanted to live.

My consultant had booked me in as the only person in theatre for the whole afternoon, for two reasons. He wanted the team to have as long as they needed to make sure if they possibly could they could do it by laparoscopy and not have to cut. Also I am notoriously hard to get anything line wise or even blood in or out of! They had discovered this the week I was in and they were trying to get bloods! [If they get in, that vein just shuts off!]. So he also organised the best anaesthetist they have to do it and the team were ready. I was to have general anaesthetic. So, they had arranged to have the theatre for “as long as it took”. It took 4 and a half hours, the anaesthetist had to move the lines 17 times during the op, but they managed it and worked with my body. I was over the moon when I woke up and so were they as they said it was a serious challenge!! I had no pain whosoever afterwards and stopped Paracetamol the day after discharge from hospital. I was discharged the following day from surgery. Here in UK they are eager to get you out in case of infection issues! A week later I had the pathology results back, all were clear, and I would need no further treatment.

I felt wonderful to start with, I think just to know I was alive! I recovered well physically but found I was very tired, and no one had warned me of that. I still do really, and I found the emotional roller coaster much harder than the physical one. I have lost huge amounts of confidence, I feel unsure of myself, and dont seem to know myself anymore. I get scared sometimes, my diagnosis came out of the blue, I had no warning signs of this cancer, nothing to suffer with beforehand, it just showed itself out of the blue. That makes me nervous. My greatest challenge is learning how to live a new normal. Sometimes I just wish I could go back to the “beforetimes” before all of this happened. But I cant. My Gp allowed me to drive and swim after 4 weeks. I am self employed so did not have to worry about going back to work, I work as a writer and artist as and when I feel like it anyway.

Well the cancer has gone. I did not need chemo or any after treatment. But my perception of my health? Well cholesterol levels shot through roof, so had to have statins to reduce them. Blood pressures kicked off and were up and down like a roller coaster but they too have now settled without any meds. I feel tired, nervy, unsure, emotionally shot, slightly pessimistic [I was always an optimist], like I dont know myself anymore at this time…but think all that will get better. My health was perfect until this so I have no comparison as to whether the hysterectomy improved anything healthwise experientially- but I know it saved my life. Yes I am pleased I had it done. Because it gave me life. Because it means I can spend more time with my children and grandchildren as they grow up. Because I am still here with my husband.

Make sure you know everything you feel you need to know. Ask questions.. Stop thinking about everyone else and work out what is most important to you. Look after yourself first.

Be prepared to be very tired afterwards even months afterwards. They dont tell you about that bit! The most important thing? Don’t try and rush your recovery.