Why this Portsmouth woman had a hysterectomy at 25
About 1.5m women in the UK are living with endometriosis – similar to the number of women affected by diabetes.
It is also the second most common gynaecological condition in the UK. Despite its prevalence, a research void has stalled improvements in diagnosis and treatments. In 2021, the cause for the condition remains unknown and there is no known cure.
Sadly, the symptoms of endometriosis are too often dismissed as a bad period. However it is a real battle many women fight everyday, as explained by Rosie Mihell, from Portsmouth.
Having been diagnosed with stage three endometriosis in 2019, Rosie, 25, had a hysterectomy a few weeks ago. She says: ‘I think when people hear hysterectomy, they immediately think cancer. But that isn't always the case.’
Rosie, now a student nurse, has suffered crippling pain and heavy bleeding since her first period when she was eight. ‘I thought I was dying. I was bleeding quite heavily and became anaemic, eventually blacking out and ending up in hospital,’ she explains. ‘I’d tell people at school it was my appendix because I was too embarrassed to speak the truth.’
Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes.
Rosie’s endometriosis worsened throughout her teenage years. She says: ‘The pain would cripple me and go into my thighs. I bled for weeks and the longest was a whole year. I had cysts seven-10cm on my ovaries.’
Now a proud mum to three children, Rosie decided to act upon her ‘debilitating’ condition in the hope of living a normal life.
‘In 2019, I went to a gynaecologist. I said how I had three children now and now I was working, I couldn’t keep having these black outs,’ explains Rosie.
‘I went for laparoscopic surgery which found I had stage three endometriosis. I thought I had it but it was never confirmed. It was still quite a shock.’
Stage three endometriosis is where there are many deep implants and small cysts on one or both ovaries.
Rosie had two options: to carry on until it got even worse, have repeated minor surgeries or start early menopause synthetically. She decided on the latter.
‘It was in the form of the zoladex injection. I was self-injecting once a month and I was experiencing hot flushes and hair thinning. I also had to have bone scans and hormone replacement therapy.’
At 24, Rosie decided she wanted a hysterectomy. However she says she really thought about the operation. ‘I thought this is hopefully going to help and I can have a normal life. I wasn’t upset because I wouldn’t have any more children because I already have my family,’ she says.
‘I have been in crippling pain for years in my back or pelvis. I wanted to feel more me.’
Because she’s so young, the hysterectomy had to be signed off by two doctors. ‘I had a great doctor at Queen Alexandra Hospital who was an endometriosis specialist. She was so helpful and supportive.’
Rosie is now three weeks post-op. She knows the hysterectomy is not a cure but it will hopefully stop the heavy bleeding, black-outs and severe anaemia.
She says: ‘A lot of people think endometriosis is just a bad period and all women go through period pain. But I want people to know this is different. It can be crippling and it’s exhausting, bleeding heavily and being in pain all the time.
‘A lot of people don’t understand, especially employers. I haven’t taken the day off because of my period, but because I can’t stand up from the pain.
‘Why should women continue to suffer when this is something very real they continue to go through? People think you should just get on with it, but that isn’t always the case.
‘Endometriosis is not something that is widely spoken about but it should be.’
Although she has no regrets, Rosie says she is grieving. ‘Since knowing my hysterectomy was scheduled and now post-operatively, I grieved and still am. I grieved for the loss but most importantly I grieved for everything I have been through since I was eight.
‘Endometriosis, I surrender. But it doesn’t mean you’ve won. This is the beginning of a new-found freedom.’
‘Endometriosis (pronounced en-doh- mee-tree-oh-sis) is the name given to the condition where cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body.
‘Every month a woman’s body goes through hormonal changes. Hormones are naturally released which cause the lining of the womb to increase in preparation for a fertilised egg. If pregnancy does not occur, this lining will break down and bleed – this is then released from the body as a period.
‘In endometriosis, cells similar to the ones in the lining of the womb grow elsewhere in the body. These cells react to the menstrual cycle each month and also bleed. However, there is no way for this blood to leave the body. This can cause inflammation, pain and the formation of scar tissue.
‘It is a chronic and often debilitating condition that can cause painful or heavy periods. It may also lead to infertility, fatigue and bowel and bladder problems.
‘It can affect all women of a childbearing age.’
It’s important to remember endometriosis is not an infection, it’s not contagious and it is not cancer.