By ITV News Digital Producer Katherine Clementine
Debilitating cramps and pain, heavy prolonged periods, a swollen stomach and fertility issues are just some of the symptoms of adenomyosis, a condition so rarely documented, it is yet to have own page on the NHS website.
Often described as the 'sister' of endometriosis, this lesser-known condition often leaves women 'suffering in silence', dismissed by GPs as 'just period pain' and without a diagnosis until later in life.
It affects around one in 10 women, according to Guy's and St Thomas' NHS Foundation Trust.
Yet women so often don't find out about this condition until they have problems conceiving - by which time, for some women, it can be too late for them to have children of their own.
Adenomyosis is defined as the "presence of endometrial glandsthat appear within the tissues in the muscle of the uterus" - causing swelling and intense pain.
During April's Adenomyosis Awareness Month, ITV News spoke to a range of women with the condition, which has affected their lives in various ways.
‘It’s the same pain as being in labour - as painful as having a contraction’
Working full time, in her mid-twenties, Nishma Patel hadn’t thought about starting a family yet - but at 28 she was bluntly told to start family planning immediately after her adenomyosis diagnosis.
Now with a toddler in tow, she can compare the pain suffered by adenomyosis every month - and says it’s as bad as labour.
“At 25/26 I started getting severe pain. I’d never had any period pain in my life so I had nothing to compare it to - now I know it’s the same pain as being an labour, like contractions.”
Before she was officially diagnosed, Nishma spoke to GPs but was told: ‘All women go through this pain’. One day her pain left her unable to get up, so she called for an ambulance but was told to take painkillers.
“I suffered in silence. You end up thinking you’re paranoid, or maybe I’m a weak person and I just need to be stronger. I wouldn’t talk about it.”
Nishma’s work - in an IT department - was affected by her pain. It was an occupational health nurse who finally listened and urged the mum-of-one to get a scan.
After multiple scans and trying various hormonal treatments, Nishma was diagnosed and told to think about family planning straight away.
"Luckily, I didn’t have trouble conceiving. But I feel like I was forced into family planning," she said.
Now in her mid-thirties and married with a son, Nishma is “counting down until the menopause”.
She added: “It does have an effect on day to day life, I’m really tired all the time, especially with an active toddler. I spend two weeks of every month really not feeling very well and in pain, it’s not just the period, it’s ovulation pain and pain the week before the period.
“That’s half the month I’m in pain - how do I explain this to people? If you haven’t suffered it you don’t understand.”
‘In hindsight, I'd have had children earlier. I'd give anything to have children’
Jessica Blogg, 36, had an ectopic pregnancy in 2014, resulting in one of her fallopian tubes being removed. A year later she had laparoscopic surgery and had endometriosis removed, but her pain came back - more intensely.
The primary school teacher from Oxfordshire tried for IVF on the NHS - but was referred for an urgent appointment with gynaecology and diagnosed with adenomyosis.
She told ITV News: “I didn't manage to do the IVF on the NHS as I was 35 and that was the cut off, you needed to have done the treatment by 35. It's really frustrating and it's literally just a postcode lottery.”
Jessica needs another laparoscopy before she can go ahead with IVF privately. But this procedure has been delayed due to the coronavirus.
“I don't blame anyone for that, it can't be helped and I completely understand - but equally it's so frustrating, I'd been holding on to that date for so long, thinking ‘that's my light at the end of the tunnel, that's the day my pain will hopefully ease a bit’.
"It feels like life is on hold. We don't want to sound negative all the time but you see everybody else moving on with their lives and you're constantly on hold. But we're lucky in other ways and my husband is amazing.”
She added: “I think if I’d have known this was going to happen, I'd have tried for children a lot earlier. I'd give anything to have children.”
Jessica manages her pain with Naproxen, Paracetamol, Codeine and carries heat pads to work in her handbag.
“I have days where even those don't work and I've been sent home throwing up and I just can't cope with the pain anymore. I genuinely can't remember the last time I had a day without pain.”
The primary school teacher says she’s “lucky” to have colleagues she can speak openly with about the condition - they even fetch her hot water bottles when they see she’s in pain.
“Realistically, I lose a week spread out throughout the month where the pain is horrendous. I still have pain every other day, but it's bearable.
“Evenings are bad, after having been on my feet during the day and my stomach gets really painful, and that's hard to explain to people because they'll have seen you all day - they don't see me in the evening when I can't get off the sofa because I'm literally in agony.
“I don't like going out particularly because the pain can come on so suddenly, you just don't know what it's going to do that evening. It impacts on everything.”
Jessica’s advice to women recently diagnosed with the condition is to “find a GP who understands”.
She added: “Find the one who knows the most about the condition and will fight your corner, because some will just brush it off as 'just period pains' - it's your life and you've got to fight for it.”
‘I’d force myself into school because no one else took the day off on their period’
Stella’s symptoms began along with her first period at just 13 - so she believed her pain was ‘normal’ for a teenage girl going through puberty - and doctors fobbed her off with the contraceptive pill for years.
“I had really bad pain, I’d be bed bound and I’d miss school. On the first couple of days of my period I’d be sick, have back pain and heavy periods,” she told ITV News.
Now aged 18, Stella has had some help after pleading with a doctor. “I fully went in depth and said, ‘I need someone to do something about this, it’s not normal. This isn’t right’ and he referred me for an ultrasound.”
She has since been diagnosed and prescribed the contraceptive pill by a gynaecologist.
“It’s nice that I can skip my periods but it’s not the best thing, it messes with my hormones - they’re always up and down.
“At the start I used to force myself to go into (school) because no one else would have the day off because they’re on their period. But I’d always come home early because it was just too much.
“More recently, I’ve said to myself I need to stay at home. I shouldn’t be putting myself through that - it’s not fair.”
A hysterectomy at 33 after a ‘terribly timed trip to A&E’
Aged 33, Katie Burrows’ mind is made up - after years of pain and taking hormone-suppressing medication, the mum-of-one has opted for hysterectomy. For many women, the procedure is the only way to end the pain associated with adenomyosis.
She told ITV News: “I see my daughter as such a lucky, lovely thing in my life. She doesn’t need a mum that’s in bed, that’s got a tummy ache. She says ‘Mummy do you want your hot water bottle?’ And that’s a three-year-old.
“I want to be the best mum I can be, if that means sacrificing my reproductive organs to make sure I’m as well as I possibly can be with this - then I will. I want it all out.”
Katie was diagnosed with endometriosis back in 2016 and was told to try for a child straight away. She conceived a month later and daughter Lorna was born. But four months after her caesarean, new symptoms appeared.
“I had this dragging, shooting pain down my leg and abdomen felt even more swollen than I had felt with endometriosis. I felt like I was carrying a watermelon!”
A laparoscopy, her second, revealed the severity of her endometriosis and she was also diagnosed with adenomyosis. She was put on Decapeptyl, a hormone-suppressing injection which is also used for prostate cancer.
“It was great to start with but I started to struggle (after a few months) with depression, low mood and dark thoughts. I would have explosive rages. It was like a surge of hormones fighting to get out of me. I had my last one in November because my GP and I thought it best to give my body a rest.”
But coming off the treatment saw her symptoms come back - ending in her being “doubled over” in pain.
“With coronavirus, I didn’t want to call 111 but I had to. My husband drove me down to A&E, I was sick on the way and when I got there I collapsed at the door. It was all very dramatic.
“They shuffled me in, gave me some morphine and didn’t really know what to do with me to be honest. I told the doctor I have adenomyosis and endometriosis and I’m having such a bad flare up and she didn’t even know what it was. It absolutely astounded me.”
Now awaiting her hysterectomy, Katie hopes her story will raise awareness and help other women. Having both endometriosis and adenomyosis, she’s seen how one condition is far more known than the other.
“When my gynae said I had adenomyosis, it was almost like music to my ears because I felt like I’d struggled for so long, when I finally got an answer just that alone made me smile - to know it’s not just in my head."
Clinicians are 'seemingly still unaware of the condition and symptoms'
With no advice, support or information available after her hysterectomy from adenomyosis, Danielle Russell founded the Adenomyosis Advice Association (AAA) in 2011 during her recovery.
She said: “Clinicians are seemingly still unaware either of the condition or symptoms. Sufferers report needless hormone treatments, inconclusive tests and being offering IVF treatments that never work following miscarriage etc which are costly and waste precious time.
Ms Russell, who created Adenomyosis Awareness Month to highlight the condition, says more women need to be able to make a decision to have a family sooner rather than later - as targeted MRgFUS treatment or hysterectomy are the only treatments that will permanently end the symptoms.
She added: “It can take many weeks or months between identifying the symptoms and being referred for a transvaginal MRI scan. Life with the condition can be both debilitating and distressing and impacts upon a woman's quality of life.”
The AAA is working with the NHS and NICE (The National Institute for Health and Care Excellence), looking at better pathways of treatment for women, and is working towards becoming a registered UK charity.