A Cumbrian woman whose endometriosis pain was so bad it made her feel like she was dying has shared her story.
Lauren Siddle, 36, of Penrith, spent years battling debilitating pain with no answers until she made the decision to use her health insurance to get diagnosed and access treatment privately.
Now, after just a few months of investigations and a three-hour specialist robotic surgery at the HCA Harbone Hospital in Birmingham, Lauren is pain-free.
But it’s an outcome Lauren had to fight for and she isn’t alone in her battle against endometriosis.
At the end of February, over 2,999 women were recorded on gynaecology waiting lists by the North Cumbria Integrated Care NHS Trust, according to data collected by NHS England.
Endometriosis is a condition where cells, similar to the lining of the womb, are found elsewhere in the body. It causes lesions, cysts and scar tissue that result in severe pain and other debilitating symptoms.
Endometriosis manifests itself in a variety of ways and shares symptoms with other conditions, so diagnosis can be difficult and often delayed.
Recent research has found that most women will wait an average of eight years and 10 months between first seeing a doctor and receiving a firm diagnosis.
A recently published ONS study found that between March 2011 and December 2021 around 38,070 women in the North West were diagnosed with endometriosis, with 1,860 of those in Cumbria.
Debilitating pain
Ever since she had her first period, Lauren, a director of Sands & Fagans in Penrith and the Katie Loxton store in Carlisle, said she knew it felt abnormal.
The 36-year-old said that her period pain was so bad she would miss school and often found herself wondering why her friends could deal with their periods, but she couldn’t.
She said: “You can’t describe the pain, but it feels like you’re dying, you do think ‘I’d rather be dead than deal with this pain’.
“Everything in my life including work and holidays had to be scheduled around it, even my wedding day.
“I’ve got a twin sister, and that’s how I knew early on that my periods were way more severe, because she wasn’t suffering like I was.”
Alongside severe pain, endometriosis can cause symptoms including heavy menstrual bleeding, severe bloating, nausea, pelvic pain, fatigue and more.
But it also manifests differently for everyone, making it even harder for doctors to diagnose.
Lauren said: “The most recognised sign of endometriosis is heavy bleeding. However that has never been my issue. It’s purely been the debilitating pain.
“Each month sleeping on my bathroom floor for two nights, throwing up until I eventually fell asleep when the pain medication would sync in my body.
“My husband refilling my hot water bottle every couple of hours throughout the day and night as only scalding heat would burn the pain away.
“A handful of times it’s been so bad that my husband has had no choice but to call an ambulance out to the house so I could have injections to control the vomiting.”
Lauren said she visited the doctors several times over the years and around twice in the last 10 years.
Both times, she said she was given prescriptions for strong painkillers or offered birth control, and told it was ‘very normal’ to have pain during a menstrual cycle.
She added: “You’re made to feel like you just can’t handle pain. They give you Naproxen and I’m sat there trying to explain how bad my periods are, but they’re like ‘periods can be painful’ and ‘everyone’s pain tolerance can be different’.
“I got the courage to go again two years later as I thought surely this isn’t normal and I got given repeat prescriptions again.”
Breaking point
Lauren said during the past three years she hit a breaking point as she started to also experience severe back pain.
She said: “At first, I thought I overdid it at the gym, but after endless massages, acupuncture, pain medication, stopping the gym, the pain just seemed to get worse.
“I really felt I had damaged my back somehow and that I would have to live the rest of my life, not being able to ever know what it felt like to not have pain.
“I feel trying to describe the severity of my back pain it doesn’t give it justice. I lived with a hot water bottle strapped around my waist 24/7.
“I had radiating pain down my right leg and had constant tingling in my toes. Working over Christmas time on my feet every day nearly crippled me.”
It was the back pain that pushed Lauren to look into getting help faster than going through the NHS.
She used her health insurance to access private treatment for her back and suspected endometriosis.
An initial MRI on her back revealed an abnormal cyst on her ovary, then the endometriosis specialist sent her for an MRI of her uterus using dye.
That revealed severe endometriosis, numerous cysts in her ovaries, a benign tumour on her cervix and a cyst in her liver.
She added: “The MRI couldn’t show the severity to how it had impacted my organs, especially my bowel and bladder until surgery.”
While scans, blood tests and internal examinations are typically not able to diagnose endometriosis, the condition can be picked up through specialist scans or when large amounts of cysts or scar tissue are present.
Many women may have normal scans, blood tests and internal exams for years while living with endometriosis as it can be difficult to detect.
The only definitive way to diagnose endometriosis and how far it has spread is through an operation – from there it can then be treated by either being burnt or cut away.
She said: “Just getting that diagnosis and being told what I had was really emotional. I kept thinking I actually do have a problem, this pain isn’t just all made up in my head.
“You just feel relief, it’s really weird, I cried on the call when I was told.”
While Lauren’s health insurance covered the cost of investigations and surgery she said she felt it was important to make people aware of the cost of private treatment options.
She said: “The consultations I think were around £200 and I think an MRI with dye to locate endometriosis is around £500 and the surgery I had was around £10,000.
“So if you can go private and self-fund it, it will at least give you some answers to work with. But I think just having that idea of the prices gives you the chance to make the decisions for yourself.”
Getting treatment
Once Lauren started pursuing treatment for her endometriosis, things moved very quickly.
As Lauren’s endometriosis was so severe, she was put forward for robotic surgery, which allows doctors to perform complex surgery with more precision and control.
She said: “The difference between robotic and the normal surgery is they actually cut the endometriosis out, but the normal laparoscopy surgery will burn it away.
“It can grow back if it’s burnt away, but with robotic surgery it’s less likely to grow back because they’re cutting it out.”
Lauren’s surgery took place on Tuesday April 29 at the HCA Harbone Hospital in Birmingham – one of only two locations she was able to access the surgery – and lasted three hours.
While the consultant told Lauren he hoped her surgery would be straightforward, it only revealed the true extent of her endometriosis.
Lauren said: “He said the endometriosis was far more severe than the MRI had showed us. My ovaries were actually stuck to my spine and that was causing all of my back pain.
“He released my ovaries and my womb and then cut out all of the endometriosis and he also found it in the cavity leading to my bowel.
“It had got so severe that I didn’t have time to go through the NHS. It would have taken years to go through the waiting and appointments.”
Lauren’s surgery was a success and she was able to leave without losing any of her organs to endometriosis.
But Lauren said if it wasn’t for her severe back pain, she may have never sought treatment in the first place.
She said: “The back pain was like a blessing, I know I would have left my period pain if it hadn’t have been for that. Then the chances it would have gone into my bowel may have been much higher.”
Helping others fight
Lauren said she wanted to share her story to help other women feel less alone in their battle against endometriosis.
While Lauren is still in recovery, she said the surgery has already made a massive difference.
She said: “My surgeon said to me you need to tell everybody that if they are suffering from period pain that is affecting their life and they’re unable to go to school or to work, there is definitely something wrong. That is not normal period pain.
“One of the consultants told me it breaks her heart because she gets girls calling her at all times of the night that are literally suicidal on the phone because they can’t deal with the pain.
“Know your body. Listen to what it’s telling you. Fight for somebody to listen.
“Yes, I went private and things moved very quickly. But, I am in no pain at all. All medication I stopped two days after surgery. This recovery pain is nothing in comparison to living with the pain my body had been accustomed to for so many years.
“If you are going through the NHS be persistent, or if you are in a position that you could take a loan out to buy a car or go on holiday, you could possibly take a loan out to get your life back.
“I would recommend my surgeon any day. Your health comes first.”
Lauren received her treatment from Staffordshire Gynaecology from Mr Zeiad El-Gizawy.
