Cumbrian women speak out on the painful reality of endometriosis

Endometriosis is the name given to the condition where cells similar to those in the uterine lining are found elsewhere in the body, and can cause substantial damage to the reproductive system and other organs.

Taking figures from gov.uk, about 11,697,000 women in Britain were of reproductive age in 2013 – meaning approximately 1,169,700 people across the nation were experiencing the crippling pain and side effects of endometriosis.

As the overall UK population has increased from about 64 million in 2013 to a predicted 67 million in 2021, this number will have almost certainly increased.

And yet the condition is still widely unknown, with many women feeling ignored, uncared for and misunderstood by various people, including medical professionals and partners.

As outlined by consultant gynaecologist and fertility services lead for North Cumbria Integrated Care NHS Foundation Trust (NCIC), Dr Haissam Moukarram, treatment for endometriosis can be medical or surgical, depending on the extremity of the woman’s condition, and the impact of either option on her life and goals.

Melanie Musgrave

And Glassonby woman Melanie Musgrave has experienced this dilemma first-hand, after endometriosis began to “stop her life”.

For years, she was forced to put her day-to-day life and plans to have a family on hold due to the severity of her symptoms – but remained undiagnosed for years.

“It was hard work – I couldn’t do much because I was in so much pain,” she said.

“It affected my lifestyle, love life, working life, everything. I love horse riding, but I couldn’t do that anymore because it was just so horrendously painful – it’s all in your pelvis and core muscles.”

Endometriosis does not appear on ultrasound scans or average MRI scans, and so a diagnostic laparoscopy is required – a form of keyhole surgery where a camera is inserted through the bellybutton for an internal examination of the womb, ovaries and other organs.

On average, it takes seven-and-a-half years for women to be diagnosed with the condition, according to the UK’s leading charity for the condition, Endometriosis UK.

Melanie herself found the process to be long and difficult, feeling she had to “demand” and “push” for years before she was heard by doctors.

“It took me a long time to get the help I wanted, and I ended up in hospital so many times because I was in such crippling pain.

“I think I finally got diagnosed because they got sick of seeing me in hospital!”

In addition to extreme pelvic pain experienced throughout the month, irregular periods, fatigue and other side effects, the condition is largely linked to infertility.

Outlining the impact of endometriosis on a woman's ability to have a child, Dr Moukarram said about 50 per cent of couples struggling to conceive are affected by endometriosis.

Melanie also experienced this struggle, and was ecstatic to become pregnant with her daughter, Poppy, who was born in 2016.

During her pregnancy, Melanie got her “life back”, and even began horse riding again and enjoying her old hobbies.

But after nine months of freedom, the 32-year-old was devastated to see the pain “come back with a vengeance”, which she feels played a key part in the breakdown of her relationship.

“I couldn’t have sex for a year, and my ex-husband just didn’t understand,” she said.

“Now I’ve got a new partner, Scott, and I sat him down and explained the situation – I couldn’t give him a biological child, but there are other options, I’m going to be in pain sometimes, and if you can’t handle that then you know where the door is.

“But he stayed, and he’s been amazing and really supportive from the start, which I’m really grateful for.”

The misery caused by the constant battle against her own body proved too great for Melanie, and despite being only 28 at the time, she “begged” medical professionals to give her a hysterectomy.

And four years on, her life has improved dramatically thanks to her decision.

She said: “I just couldn’t bear the pain anymore. I kept getting told, ‘no you’re too young, you won’t be able to have any more kids and you’ll regret it’, but I knew I had to.

“I’ve been pain free for four years now, and it’s been amazing.”

She continued: “A hysterectomy isn’t everybody’s choice – I am sad I can’t have more kids, but I would rather have my Poppy and be pain free than have more but go through that pain every day of my life.

“If you feel like something is wrong, you know your own body, so keep pushing and pushing and pushing, because nothing will happen until say enough is enough and demand help.

“I’m trying to help get friends through it, because it’s not a nice disease, and it’s scary, but it needs diagnosing and treated.”

While Melanie was grateful to have her daughter, Carlisle woman Karen Hodgson suffered a traumatic miscarriage at 12 weeks – after which she was never able to conceive again.

In her struggle to have a baby, the 45-year-old – who has experienced pains associated with endometriosis since she was just 10 years old – underwent IVF treatment.

But her pain increased even more when her bowel was pierced during the process, and she was terrified she would need a colostomy bag.

After years of struggling with the chronic condition and the effects of various hormonal and surgical treatments, Karen, like Melanie, asked for a hysterectomy.

“I still have some bowel discomfort, but it is nothing compared to the years of agony previously,” she said.

“People say I look different, and my face is free of pain. I only wish I had been referred to a specialist sooner, and had this operation earlier in life, because endometriosis and everything that comes with it really is horrific.”

All women who spoke about the condition stressed how difficult it is to live a “normal” life, and the struggle of even getting diagnosed with the condition.

Emma Hearth, who has been put through the same rigorous regime of scans, blood tests, and eventually laparoscopy as so many others, stressed the importance of others being aware of the condition – and of getting help when you need it.

“The ladies that go through this ordeal have to literally fight a battle each day just to be ‘normal’,” she said.

“We look like we are okay on the outside, when it’s the opposite on the inside.

“To anyone, young or old, please ask for help – constant, intense pelvic pain is not normal. We know our bodies, we know when something is wrong, so fight for a diagnosis.

“It’s only when we do this that it can be officially recognised as a disability, and more research can hopefully be carried out for this disease.”

Dr Moukarram explained that while the physical impact of endometriosis is “extremely difficult”, the effect on a woman and her partner’s mental health is also of major concern.

Dr Haissam Moukarram

He added that Covid-19 is a worry, as the pandemic has put a halt to non-emergency surgeries, such as diagnostic laparoscopies and surgical treatments.

This is highlighted when looking at figures of Cumbrian diagnoses throughout the past 10 years. In 2011, a total of 24 women in north and west Cumbria were diagnosed with endometriosis – nine in Allerdale, 10 in Carlisle and five in Copeland.

These numbers gradually increased over the years, peaking at 68 diagnoses in 2014.

But the pandemic slashed these figures, bringing the total number of women diagnosed in Allerdale, Carlisle and Copeland down to just 27 in 2020, compared to 50 the previous year.

This drop has caused many – including Dr Moukarram – to become more concerned for the welfare of women who fear they have the condition.

He said: “It is definitely a concern that Covid is impacting diagnoses and operations. Like every aspect of the health service, it has been affected by Covid.

“However, there are steps that are being done to help alleviate some problems.”

These steps include telephone consultations, which are currently being held at specialist endometriosis clinics, including Middlesbrough, where many Cumbrian women are referred.

Rhianne Pearson

Currently experiencing the difficulty of receiving help during the pandemic is 25-year-old Rhianne Pearson, who regularly feels as though the pain is “ripping [her] insides up”.

“I couldn’t deal with it any longer, it was effecting me physically, sexually and mentally – I just couldn’t do it anymore,” the Carlisle woman said.

After learning more about the condition through social media and news articles, Rhianne called her GP and said she believes she has endometriosis – and was referred “instantly” to a specialist.

“It’s quite emotional [talking] about this, because if it’s been this hard for me – and I am by no means the worst case I have heard of – I know that it must be horrendous for others,” she said.

“For a long time I couldn’t find anyone going through the same kind of thing – I had my friends and family, but they will never fully understand, so I felt very isolated.

“But after getting somewhat of a diagnosis, I found people on Instagram that had shared their experiences and would talk to me about it, and that’s been so helpful.”

While Rhianne is relieved her pain and other symptoms are finally being taken seriously, after more than eight years, she feels – along with all other women who shared their story – that she was “fobbed off” too many times, asking: “why did it take me telling the doctor that I had endometriosis before they decided to look into it?”

Dr Moukarram acknowledged this issue, saying: “I would encourage both women and GPs to be aware of the prevalence of endometriosis, and get help. With appropriate treatment, there will be significant improvement in the quality of the woman’s life.

“It is a lifelong, chronic disease, so getting help as soon as possible is important so it is less complex to treat. We are here to help in management and support, and getting help is the best way forward.”

He continued: “What’s also important for women to be aware of is the support networks. There is the Cumbrian support group, which women and partners can attend together, which can be very helpful and useful.”

Led by endometriosis and adenomyosis sufferer, Elaine Remy, Endometriosis UK Cumbria welcomes women and their partners from across the county, providing key support and advice on how both can cope with the effects of the condition.

“It brings people together with very similar stories,” she said.

“Sometimes we find that in our environments, we aren’t understood, and can feel quite lonely and isolated at times, but when we get together, we are all on the same wavelength, and this sort of support network is so important.

“Both women and their partners are welcome, because while it obviously affects the person experiencing it more, those who love them are impacted as well.”

But it’s not just partners, family and friends who can provide help and support to sufferers – each and every company can contact Endometriosis UK to find out how they can become an Endometriosis-friendly employer.

Windermere woman, Elaine, added: “You can have a good quality of life even with endometriosis, if you get the help you need.

“There is hope – just don’t try and tackle your challenges alone.”

To find out more about the condition, including the treatment and support available, visit the Endometriosis UK website, or contact Elaine via the Endometriosis UK Cumbria Facebook page.