Northamptonshire woman living with Endometriosis and Adenomyosis often left ‘rocking back and forth, crying in agony’

April marks the start of Adenomyosis Awareness Month, following Endometriosis Awareness Month in March.

Caroline Carpenter, 32, from Finedon, suffers with both conditions and has been fighting for her diagnoses since the age of 15 when she started her period.

Daily life for Caroline is excruciating as she endures stabbing chest pains, heavy prolonged periods, knifelike cramps and painful bowel movements - all whilst caring for her two-year-old son, Elliott.

Caroline said: “Month after month, my period arrived with pain and fear. I would often drop to the floor in absolute agony, crying and rocking back and forth.”

She is currently signed off from her job at the Billing Brook special school in Northampton due to issues with her bowel as she awaits surgery to have half of it removed and her latest period has left her bed-bound.

Caroline often requires the assistance of her partner, Darren, or her mum to complete simple tasks such as showering and getting dressed. She relies on heat pads and hot water bottles wrapped around her chest and stomach to fall asleep.

A regular period, for Caroline, would be going through an entire pack of pads in a single day and she cannot go to the supermarket without worrying about going to the toilet.

Caroline’s battle to get diagnosed trundled on for 15 years. She was subjected to numerous scans and tests for various other conditions, which came back negative.

She eventually had a laparoscopy at Kettering General Hospital in February 2019 because her bowel was stuck to her left abdominal wall (abdominal adhesion).

Despite this being the procedure to officially diagnose endometriosis and adenomyosis, this still was not detected.

Caroline said: “Once again, I was fobbed off. The lady was a gynaecologist and not qualified in endometriosis.”

Caroline and her partner, Darren, had - at this point - been trying to conceive for four years. She always knew she wanted a family and spent all of her career in childcare and working at nurseries and schools.

Not being able to get pregnant was really difficult for Caroline.

She said: “My brother’s wife could just conceive so easily and I would get a call saying you’re going to be an auntie again and I would see a pregnant woman in the street and feel nothing but jealousy.”

Much to Caroline and Darren’s delight, she fell pregnant in 2019. Caroline’s pregnancy helped to relieve her of most of her symptoms as a result of her periods stopping, which was a temporary relief for her.

Caroline was so accustomed to the pain brought on by her conditions that, when doctors told her she was having contractions in February 2020, she told them “don’t be silly” and did not believe them.

She did not feel her contractions until they were two minutes apart lasting for 40 seconds. She was nine centimetres dilated by the time she got to hospital, took some paracetamol tablets and gave birth to her “little miracle”, Elliott.

Caroline said she had been telling doctors for years that her symptoms were similar to the pain of labour but she was made to feel like a “drama queen.”

When Elliott was around six months old, the temporary relief of pregnancy was no more and Caroline’s symptoms returned with a vengeance

She returned to her GP, who agreed that she should be referred to Nene Park Outpatients Clinic so that she could be examined with a fresh pair of eyes.

According to Caroline, a doctor at that clinic took one look at her laparoscopy notes from 2019 and confirmed she definitely had endometriosis and adenomyosis.

Endometriosis is a condition where cells similar to the lining of the womb are found in other parts of the body. These cells react in the same way to those in the womb, building up then breaking down and then bleeding once a month.

The blood from the cells in the womb leaves the body in the form of a period. The bleeding from cells found in other areas of the body, however, has nowhere to go. This causes inflammation, pain and the formation of scar tissue.

Adenomyosis occurs when the tissue that normally lines the uterus grows into the muscular walls of the uterus. The tissue continues to act normally - thickening, breaking down and bleeding -during every menstrual cycle, leading to an enlarged uterus and heavy, painful periods.

Caroline was referred to the Cambridge Endometriosis Endoscopy Surgery Unit, where she said she was listened to, understood and supported.

Following MRI scans in January 2022, Caroline received a letter from a doctor telling her that she has “no quality of life.”

Reflecting on the journey to her diagnoses, Caroline said: “It is so frustrating, you go through it for years and years and you know your own body and you have to fight for yourself.

“I know they are professionals but they don’t know this condition.”

Caroline is currently awaiting follow-up appointments in addition to major surgery that will remove half of her bowel.

She has additionally applied to receive Personal Independence Payment (PIP) so that she can pay for a carer to assist her with daily tasks she struggles with.

This, however, remains a worry for her because she said that PIP does not recognise endometriosis and adenomyosis as qualifying conditions for the payment.

She added: “I think it would just be nice for people to know that a period is not just a period with these conditions. To be laying on a supermarket floor is not normal.”