Mum who was told Endometriosis was ‘in her head’ wants to help others

Mum who was told Endometriosis was 'in her head' wants to help others

Being diagnosed with Endometriosis can be a terrifying thing – as it can mean that you may suffer with infertility.

But Cathryn Northfield is sharing her story to "give hope" to anyone who has been diagnosed with the condition and who is trying to start a family.

Cathryn had always suffered "excruciating pain" whenever she had a period in her teenage years.

At one point, she was even told that the pain might be "psychological" after professionals struggled to find a diagnosis.

It took the now mum-of-two, years to get a diagnosis of what was causing her pain, and she told she had stage four Endometriosis, which is the most severe case.

But she managed to get pregnant.

"My second pregnancy was my little miracle" she said.

Cathryn has now set up a Facebook support group "where sufferers can just chat with others going through the same thing", as well as sharing tips for helping with pain and symptoms.

Tim Hookway, Consultant Obstetrician and Gynaecologist at Derriford Hospital said that "Endometriosis is as common as diabetes" and can affect up to 1 in 10 women, predominantly affecting women between the ages of 18 and 50.

He said: "The signs and symptoms can be very generic and for that reason endometriosis can be difficult to diagnose.

"Women with Endometriosis may suffer from chronic pelvic pain, pain or discomfort during sex, heavy and painful periods or pain on passing stool. Other symptoms can include fatigue, low mood and anxiety.

"Endometriosis can also be diagnosed following difficulty in conceiving a pregnancy."

Cathryn hopes by sharing her experience with the condition that she can encourage someone who has had similar symptoms to go to the doctor and push for a diagnosis.

She said: "I’ve suffered so badly due to how long I went un-diagnosed, I firmly believe that an early diagnosis is crucial in having a better quality of life with this disease.

"If I can help one person reading this recognise the symptoms and get to the doctors then I’ll be happy."

Cathryn said the chronic, "debilitating" disease can take on average, seven years to get a diagnosis, usually because the symptoms can cross over with symptoms for other illnesses.

The only definitive way to diagnose is by having a laparoscopy (keyhole surgery).

Cathryn said: "Endometriosis is determined in stages 1-4 (mild to severe), however this does not determine how one would suffer. A lady with stage one could get just as much pain as a lady with stage four. It depends where the endometriosis is."

Cathryn has suffered from "extremely painful and heavy periods" and said when the pain flares up, it can be similar to "contractions in labour".

She has also experienced; painful bowel movements, constipation, diarrohea, bleeding from the bowel, fatigue, lower back and pelvic pain, lower abdominal pain, bloating, pain during and after intercourse, pain when passing urine, persistent urine infections, nausea and vomiting, as well as ovulation pain.

She said: "As a teenager I always suffered horrendous, heavy, painful irregular periods. I was put on the pill at 15 to control this.

"I still continued to suffer with awful periods, but the pill controlled when I would bleed so I just carried on putting up with the heavy bleeding and pain once a month for years as doctors always told me that it was normal.

"I would often take my pill back to back to avoid a period."

Cathryn fell pregnant in 2008 and gave birth to a little boy in May 2009 by C-section as he was breech. Shortly after she started experiencing "awful lower back and pelvic pain".

She said: "The pain would radiate down my right leg like sciatica and my periods were getting worse to the point I wouldn’t be able to get out of

bed each month. I would just lie curled up in a ball with a hot water bottle. The pain initially was cyclical but over time became the week before, during and after my period and eventually the pain was daily."

Her pain was mistaken for a "bad back" and she was sent to visit Osteopaths, physiotherapists and chiropractors. She had steroid injections in her spine, was put on different types of pain relief "but nothing worked".

She was also diagnosed with IBS and had many tests but there was never a firm diagnosis for the pain she was experiencing – and she was even told her pain might have been "psychological".

By 2013, things had hit an all-time low and she was taken to A&E twice in a 24-hour period whilst she was menstruating, as well as taking many days off from work and struggling to "walk to the end of the road".

Cathryn said: "It was effecting my whole life and my husband, son, family and friends had to watch me suffer. At this point I had also been passed from physio to pain management. No pain relief had helped me so I was told my pain maybe psychological!"

It wasn’t until Cathryn’s sister, who is a midwife, mentioned that her pain could be down to Endometriosis that she had even considered she had the condition.

"I googled it and realised that this was more than likely what was wrong with me" she said.

In September 2013, she was referred to Derriford Hospital’s gynaecology department.

She said: "Somebody finally thought they knew what was wrong with me. She said straight away it sounds like Endometriosis and that I would need a laparoscopy to check.

Cathryn had surgery in November 2013 and was "nervous" that they wouldn’t find anything, but was told that she had a "severe stage four" Endometriosis.

The scan showed that her womb, ovaries, tubes, bowel and bladder were "stuck together" and her nerves and ligaments were covered in adhesions – which meant she might have needed to have a hysterectomy.

As Cathryn was desperate to have another baby, she was referred to an Edometriosis specialist.

She said: "I left hospital feeling very sad but relieved the pain hadn’t all been in my head. Luckily I saw the Endometriosis specialist a few weeks later. He was amazing and although he said I would never get pregnant with how things were he said he could operate with a bowel surgeon to remove the Endometriosis and improve my chances of conceiving."In May 2014, the Endometriosis was cut away from her bowel, but due to complications she was unable to urinate after the surgery and had to have a catheter for a couple of weeks.She said: "The recovery was very hard but 10 weeks later I went back to work and my pain had pretty much gone! The surgery was life changing. I was off the pain relief and enjoyed a family holiday in the Carribean."My surgeon gave me a year to try for a baby naturally before needing to look at IVF.""Amazingly" she conceived and gave birth to a healthy baby boy in August 2015. But not long after giving birth her symptoms returned.She said: "I have a really lovely supportive GP who agreed I needed to see an Endometriosis specialist again and luckily there had recently been a new one start at Derriford. So I’m now under Mr Hookway who is a fantastic consultant and really wants to help sufferers have a better quality of life."She has now undergone five surgeries and hopes she will find a way to make the pain "more managable".Cathryn said: "I am determined to use my experience and knowledge of Endometriosis to help and support other sufferers."You can join Cathryn’s Facebook support group here. What the expert says Tim Hookway, Consultant Obstetrician and Gynaecologist at Derriford Hospital said: "The signs and symptoms can be very generic and for that reason Endometriosis can be difficult to diagnose."Women with Endometriosis may suffer from chronic pelvic pain, pain or discomfort during sex, heavy and painful periods or pain on passing stool. Other symptoms can include fatigue, low mood and anxiety."Endometriosis can also be diagnosed following difficulty in conceiving a pregnancy."Endometriosis can significantly affect quality of life. It can cause problems with employment, relationships and family life. Having the condition may result in not wanting to join in with sport or social activities and can result in lots of time off work or away from education."There are a number of treatments available. Broadly speaking, treatment falls into 3 categories: pain management, hormonal treatment and surgery. A healthy lifestyle and balanced diet are also helpful as well as stopping smoking."Treatment should be based on both symptoms and desire for fertility and can be tailored to individual need. Simple painkillers can certainly help make symptoms more manageable, and hormonal treatments such as a contraceptive pill or hormone containing coil are often beneficial and are effective relatively quickly."Endometriosis can also be treated surgically – usually by laparoscopic (‘keyhole’) surgery. The appropriate surgical treatment will depend on the extent of disease, severity of symptoms and desire for fertility."In some cases removal of ovaries and/or the womb may be required. Endometriosis can also affect the bowel, bladder and other organs so women may need to be treated by doctors from different specialties." The man behind the name – what it’s … At home with the Plymouth […]

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