‘I suffered decades of pain before endometriosis diagnosis

Women have spoken of two-decade-long struggles with “excruciating” periods before being properly diagnosed with conditions such as fibroids and endometriosis.

“For 22 years I was dismissed by countless healthcare professionals,” Jen Moore, 35, who was diagnosed with endometriosis and adenomyosis, and now campaigns for others, told The i Paper.

“I struggled with excruciating periods, blood loss to the point of passing out, daily nausea, fatigue, back pain, hip pain, leg pain, chest pain, bladder issues, bowel issues, painful sex.”

From her first period at 11 until the age of 32, Ms Moore experienced extreme pain but said every time she went to the GP she was told it was normal.

After being told she was just unlucky and that her symptoms would settle down, Ms Moore began to question herself.

“I started to think, ‘maybe I just have a low pain threshold. Why is everybody else able to deal with this so much better than I am?’

“Then, as I got older, the interactions became slightly more negative and it became more like ‘why are you so special? What are you expecting us to do?’”

It comes as a new report from charity Wellbeing of Women suggests that over half of women say period symptoms negatively affect their life, but due to embarrassment and/or being ignored, they wait 22 months before seeking medical help.

Half of the women surveyed for the report said their period symptoms have been brushed aside, with 23 per cent of these women feeling dismissed by healthcare professionals and 26 per cent by their partner.

Wellbeing of Women has launched a Period Symptom Checker to help women understand when they should go to their healthcare professional. A woman can enter her symptoms and receive a personalised letter to give to her GP.

Ms Moore said that “gaslighting” affected her mental health. She added: “It was over such a long time that I think the effects of those interactions will last me the rest of my life. I will wait until I am so sick before I will go to my doctor, because in my head it’s just like ‘what’s the point?’”

Ms Moore said that her periods “ruled my life”. For years she was on the pill to control them, so her symptoms were confined to the withdrawal bleed, but during that week she would stay in bed the whole time.

She added: “When I came off the pill the symptoms were just every single day; I was just bleeding constantly. It was awful.

“It wasn’t until I started tracking my symptoms fully that I noticed patterns and just how much endometriosis and adenomyosis were impacting my whole body. It was only then that I was finally believed; before that, my word was never enough.”

She said that when she was diagnosed in 2022, it was “such a complicated mix of emotions. There was relief that someone was believing me, and there was hope that maybe something was going to get better, and there was anger that it took this long. Then there was fear because this thing is not easy to deal with.”

Ms Moore has since had two surgeries, including a hysterectomy for her adenomyosis.

She said: “I still have a [menstrual] cycle because I have my ovaries, but to not be bleeding 24/7 has changed my life. But I do still get pain from the endometriosis.”

A year after her hysterectomy she went to A&E with severe endometriosis pain, and said she waited 25 hours before being told a gynaecologist couldn’t see her because she no longer had gynaecological organs. When she eventually got an appointment it was for 14 months’ time.

“The understanding and education about these conditions isn’t there,” she said, calling for a “complete overhaul” of the way the healthcare professionals are taught about them. “We can speak up about our symptoms as much as we want. If the doctors don’t know what to then do, nothing will change.”

What are the symptoms of endometriosis and adenomyosis?

Endometriosis is a condition where tissue similar to the lining of the uterus grows outside of the uterus. It can cause:

• Chronic pelvic pain lasting for six months or more
• Pain in the lower back
• Very painful periods, and heavy or prolonged bleeding
• Spotting or bleeding in between periods
• Irregular periods
• Painful bowel movements and diarrhoea or constipation during a menstrual period
• Fatigue
• Painful urination

Adenomyosis is a a condition where the lining of the uterus grows into the muscle of the uterus, and can result in symptoms such as:

• Heavy menstrual bleeding
• Painful sex
• Pelvic pain
• Prolonged bloating
• Pressure in the lower abdomen
• Bleeding in between periods or after sex.

Ms Moore also said she would like to see medical professionals “have a bit more humanity and empathy for the people in front of you whose lives are being destroyed by this disease”, as she felt that her treatment had at times been “inhuman and degrading”.

The Wellbeing of Women survey also found that only 1 in 10 women can identify all the signs of heavy menstrual bleeding, which could lead to fewer presenting to the GP with their symptoms.

Henrietta, from London, told The i Paper she spent nearly two decades with very heavy periods, “battling extreme fatigue and relying on iron infusions”.

“Despite my symptoms worsening – dizzy spells, shortness of breath, weak limbs, and blurred vision – my anaemia was always attributed to my vegetarian diet,” she said.

The 35-year-old said that when her anaemia was identified at the age of 13, her GP did ask how her periods were and she said that they were heavy, but she added that at the time she felt “awkward” about the question and perhaps did not make clear that she was wearing nighttime pads and “would have to change two to three times an hour”.

“I thought that was normal so didn’t even think to mention it,” she said.

The issue was not investigated further. However, as time passed, Henrietta went from using one nighttime pad at a time to doubling up, and then later using incontinence pants.

“I wouldn’t last 10 minutes. I would put them on and it would be like a crime scene.”

Over the years, her pain levels also worsened, becoming “excruciating” at their worst. “It was really affecting the quality of my life. I would have to schedule things around it. I would throw up, I would be crying out in pain. It always felt like I was being ripped from one end to the other.

“It got to a point where it was affecting my breathing. I was hearing ringing in my ears and I couldn’t carry heavy things,” she said.

It was not until 2018 when Henrietta went into hospital because of her iron levels and a “lovely nurse” suggested tranexamic acid to reduce the flow of her periods, and gave her her first iron infusion. “The room was clearer; I could see in colour. I hadn’t realised that the anaemia had been making my vision hazy,” she said.

However, she continued to struggle with everyday tasks such as carrying shopping, and ended up in hospital again during the Covid lockdown, where staff noticed a protruding lump “like a pregnant uterus” and it was finally suggested that she had fibroids.

“I didn’t even know what that was. I saw a list of the symptoms and all of a sudden it made sense,” she said.

“I was really upset about all these years of suffering and pain, and building my entire career around it.” Henrietta said that she knew at university that she would have to be freelance to work round her periods as she believed there was “no way” anyone would employ her if at times she could not leave her bedroom floor.

Henrietta is not alone. Wellbeing of Women’s report found that over half of women surveyed said they would feel uncomfortable discussing their periods with their boss or manager and a similar number said they worry that if they took time off for period symptoms it would negatively impact their career.

Since her diagnosis, Henrietta has had a uterine artery embolisation to shrink the fibroids by blocking their blood supply, and a transcervical resection of fibroids, an operation to remove some of the benign tumours. Her periods are now lighter, lasting four to five days rather than 10 to 14.

But she has been left feeling forgotten by the NHS after not having any follow up appointments in over a year.

“I have reached out several times, so I hope I hear back from them soon and that the open myomectomy [surgery to remove fibroids] will be the key to finally being able to live my best life.”

What are the symptoms of fibroids?

Fibroids are non-cancerous growths in the uterus that can vary in size. They can cause:

• Heavy and/or painful periods that may last longer than normal
• Pelvic pressure or pain
• Frequent urination and trouble urinating
• Constipation
• Pain in the stomach area or lower back
• Pain during sex

Dame Lesley Regan, a professor of obstetrics and gynaecology at Imperial College and the chair of Wellbeing of Women, told The i Paper: “It is not normal to not be able to get out of bed because of pain, or to be unable to go out of the door because you’re frightened you’re going to flood everywhere.

“It’s also a terrible loss to the economy and society.”

She said there is help out there – from painkillers to tranexamic acid to reduce flow to contraceptives like the Mirena coil, which also reduces severe symptoms – and women and girls must go to their GP if they are concerned.

Dr Michael Mulholland, Royal College of GPs, said: “It’s never easy to hear when any patient reports not feeling as though they have been listened to.

“We want all women to feel confident about turning to their GP for timely and appropriate care. Women’s health is a key part of the RCGP curriculum that all GPs in training must demonstrate competence of before they are able to practise independently as a GP.”

An NHS spokesperson said: “The experiences of many women affected by heavy periods when they seek healthcare often aren’t good enough, with many not getting the, often quite simple, treatments they need.  

“We want to be sure this does not happen, so raising awareness of heavy menstrual bleeding is really important so we can diagnose and treat patients quicker. This is why we have rolled out women’s health hubs, which are in place in over nine in ten local areas in England.”