Writhing on the sofa in agony, clutching her stomach, Michelle Waites realised she had to take desperate measures to stop the pain.
Already on 32 painkillers a day, the 33-year-old’s relationship with her son Bradley was suffering because she was so ill she could not do the basic things other mums could.
On some days the pain was so bad it was close to what I felt during childbirth. Some women just pass out.Michelle Waites
After 18 months of unexplained pain, Michelle, from Milton, was diagnosed with a condition so horrible that she likens it to the pain of childbirth. Some women simply pass out because it becomes so great.
Two years ago Michelle took the decision to have a full hysterectomy in a bid to get her life back.
It was not an easy choice. It would mean she would not be able to have another child.
But, so great was the effect the condition was having on her life, she felt she had no choice.
‘It was tough but I was on 32 pain killers a day’, says Michelle. ‘I had no life with the child I had.
‘It was a matter of having a better quality of life with my son, even if that meant not having any more children.
‘On some days the pain was so bad it was close to what I felt during childbirth. Some women just pass out.’
Endometriosis is a condition where the cells in the lining of the womb break off and, instead of being released with the monthly period, they move elsewhere in the body and bleed.
There is no way for this blood to leave the body and it causes inflammation, pain and scar tissue.
It can form a sticky glue around other organs. Some women with the condition may not experience too much discomfort.
But for many of the 1.5m sufferers in the UK it can be debilitating.
Actresses Susan Sarandon and Whoopi Goldberg admit suffering with it, as well as country star Dolly Parton.
Michelle, a trainer, had always suffered from heavy and irregular periods and gynaecological issues.
But because she had been on contraception since she was a teenager it suppressed the full extent of her problems. It was not until she hit her mid twenties, after her son was born, that the pain and constant cramps became unbearable.
What followed was several admissions to hospital in excruciating, unexplained pain. There were tests for irritable bowel syndrome, appendicitis, bowel and bladder problems.
She was referred to the pain clinic, the gastro clinic and the rheumatology clinic, but couldn’t get any answers.
After 18 months, having spoken to a gynaecologist, she was diagnosed with endometriosis.
Michelle feels fortunate to have been diagnosed so ‘quickly’. It can take up to 10 years.
But enduring the pain day after day became too much and two years ago she had her womb and cervix removed.
She says: ‘I hit my lowest point after I had my womb and my cervix removed two years ago.
‘I knew that there was only a 50/50 chance that it would work, but I went into the operation feeling hopeful.
‘When, two weeks later, the pain returned, I hit a wall. I was gutted.
‘My grandad Ron died around the same time. He’d brought me up. I had that to deal with too and it was a real struggle,’
She adds: I could not go to work, I could hardly walk. There were also implications of taking all those tablets every day. My life was on hold.
‘I couldn’t do anything with my son. It was absolutely horrific.’
The only option left was to remove her ovaries. That operation took place a year ago.
‘I would say now that I am 90 per cent better’ she says. ‘But because my body has been so used to fighting the pain for so long it thinks it is still there. I get phantom pains.’
It is now managed with paracetamol for most of the time. But there are other complications brought on by not having ovaries. She is at a higher risk of having a heart attack and will be on hormone replacement therapy until she is in her fifties.
‘It’s a risk worth taking though’, she says.
Bradley has seen a real change in his mum since she had the last operation.
He says: ‘It was really sad for me to see my mum when she was ill.
‘She couldn’t do as much stuff as she can now. It was horrible to see her in pain.
‘It made me upset because she was upset.
‘She is much happier now. It has made a difference to her life.’
Michelle has now set up a Portsmouth support group of Endometriosis UK at Queen Alexandra Hospital, Cosham.
She works closely with the consultants and nurses who specialise in the condition.
Michelle says: ‘The impact that endometriosis has on people’s lives is huge. I see women who are having fertility issues, women who are still suffering having gone through the menopause and young women who have just been diagnosed.
‘There needs to be more awareness out there about the condition, especially amongst GPs and other medics.’
To see a video of Michelle go to portsmouth.co.uk.
Michelle Waites runs the Endometriosis UK support group at Queen Alexandra Hospital, Cosham.
The group meets every four weeks and is open to anyone who has been diagnosed with endometriosis or believes they may have it.
Members do not need to go along to the meetings to get support, they can join a private Facebook group too.
Michelle works closely with the consultants at QA who visit the group every six months to answer any questions they have on the illness.
‘I realised that there wasn’t any support out there’ says Michelle. ‘The nearest group was held in Southampton. When you are feeling dreadful anyway the last thing you want to do is travel all that way.
‘I contacted Endometriosis UK, and after training I set up my own group within QA.
‘My family have always been fantastic but you do need that support from others going through the same thing.
‘It is a hidden disease, not like breaking a leg or having a large bruise. You look perfectly well and it can be difficult for people to understand just how ill you are.’
It is not unusual for heavy, painful, irregular periods pain after sex and painful bowel movements to be written off as irritable bowel syndrome or other complaints.
Michelle says more research needs to be done and GPs and sexual health practitioners need to be more aware of it.