A mum used to have the agonising pain of childbirth every month because her body was trying to ‘birth her womb’.
For most women, there are a few weeks of respite before their period arrives, when you can expect some pain and grievance.
But for Kerry, her life was the other way around – she would experience several weeks of agony before just two or three days of relief.
You may have heard of endometriosis, a condition where tissue similar to the lining of the womb starts to grow in the ovaries and fallopian tubes, and causes extreme pain for people with uteruses.
While Kerry has endo, she also has adenomyosis, where the tissue that lines the uterus grows into the muscular wall. The displaced tissue then continues to break down and bleed like it would during a period and can cause severe pain and cramping.
For Kerry from Essex, the pain of adenomyosis was like being in the “throws of labour”.
“My son used to say mum is mooing upstairs because it was like I was in labour, on all fours in bed and taking morphine for the pain,” she said.
“If there was a back street surgeon, I would have gone.”
The pain from the adenomyosis coincided with Kerry’s menstrual cycle, meaning for 21 days, she would be crippled by pain, before having two or three days of relief.
“It was the terror of knowing you will be tortured,” she said.
“It was like labour, so the pain creeps up, you get a handle on it and then it gets worse. Then you can’t be comfortable and you can’t sleep.
“It is like being in the throws of labour. When I said that to my consultant, he said it made sense because you are actually trying to birth your uterus.”
The difference with labour, Kerry said, is that someone will intervene at some point, but with this, Kerry didn’t know when it would end.
“I couldn’t cope with the pain”
Kerry didn’t start experiencing any issues with her periods until a few years ago in her 40s.
“Initially, I was bleeding a bit of dark, old blood and it was like that for three years,”
“During that time, I didn’t experience so much of the pain because of other health issues and I often feel very embarrassed to go back to the doctor for yet something else.
“Unless it’s really causing me discomfort, then I ignore it for a bit.”
For a few people – being able to ignore something like this may seem incomprehensible, but given everything else Kerry has going on, it makes a lot of sense.
Kerry also has fibromyalgia which causes chronic pain and fatigue as well as a degenerative spine, spinal stenosis and anxiety and depression. She is also a full-time carer for her son, who has non-verbal autism and requires constant supervision.
When Kerry’s periods suddenly became more painful, she went to the doctors and a gynaecologist, where she was diagnosed with the two conditions, endo and adeno.
While it is a big operation to have, Kerry desperately wanted a hysterectomy to alleviate some of the pain.
“You have to try loads of things before you can have it,” she explained. “You have to try a pill, you have to try a coil.
“I was forced to have an ablation which stops the bleeding but makes the pain so much worse and that’s when it was totally unbearable.
“The endo pain is like this dragging, heavy feeling as if it is the most awful period that you feel aching in your back legs and groin.
“But the adenomyosis was crippling.”
The invisible illnesses series
An invisible illness is simply a condition or illness which we cannot physically see.
Every day, whether it is at work, school or just walking down the street, some of the individuals you pass will be living with life-changing, chronic or debilitating conditions which affect every aspect of their daily life.
In the UK, one in five people have a disability. Of those, 80 per cent have a ‘hidden disability’.
We have spoken to several individuals living with a variety of the conditions in the hope that it will shine a light on their experience, spread awareness and stimulate conversation.
From a teenager whose body is ‘like glass’, to a woman with an ‘invisible’ brain tumour – to conditions like chronic fatigue, bowel issues and incontinence – a number of individuals have stepped forward to share their stories.
“I couldn’t cope with that pain”
Kerry paid to have a consultation privately where she was so desperate for help. She couldn’t afford the surgery however and had to be put on a waiting list for the operation with the NHS.
“You have to go through the procedure to be able to have a hysterectomy which is frustrating at my age,” she added.
“I understand for women who are worried about their fertility but I have had my family.
“I wanted to have a hysterectomy, I couldn’t cope with that pain.
“It’s almost like you can’t reach hysterectomy unless you have this procedure first. I am so incredibly grateful to the NHS but it is so frustrating.”
In total, it took around six years to finally have the hysterectomy of the womb and ovaries this March.
The operation was a success but took seven and a half hours as Kerry’s uterus and bladder had stuck together.
Kerry added: “There is a lot of misunderstanding that people think you have the hysterectomy and the endo stops but it doesn’t stop.
“But for me, the worst part of the debilitating pain with endo is gone and that’s such a relief.
“The hysterectomy put me straight into menopause, but it’s really good women are starting to talk more about that.”
“It hurts to move”
Fibromyalgia can also cause increased sensitivity to pain, fatigue, muscle stiffness, problems with memory and concentration, headaches and IBS.
With the fibromyalgia in particular, Kerry knows that she can’t manage too much without crashing.
“If I’m going to do a supermarket shop, I know that the next two days I will be flared up,” she said.
“It’s a bit like waking up with the worst hangover you have ever had, or you have got a really awful cold and you just ache everywhere.
“Everything is an effort, it hurts to move. If you get up to go to the toilet, that’s all you can do. Some days my husband physically has to help me get to the toilet.
“It is relentless and tiring, you feel rotten all of the time, like living with it all the time and sometimes the worst part is the mental health and the anxiety.
“The person my head is still the same person but trapped in a body that doesn’t want to do it.
“I used to tap dance, swim, climb, bike and walk around lakeside for 12 hours and now I pick one shop and I have to go just there because I know I will suffer.”
What is endometriosis?
Despite affecting one in ten women, endometriosis is still widely unknown by many.
The charity Endometriosis UK explains the condition as where cells, like the ones in the lining of the womb (uterus), are found outside the womb in the pelvis, and occasionally in more remote sites of the body.
They explain: “Every month a woman’s body goes through hormonal changes.
“Hormones are naturally released which cause the lining of the womb to increase in preparation for a fertilized egg. If pregnancy does not occur this lining will break down and bleed. This is then released from the body as a period.
“Endometriosis cells react in a similar way – except that they are located outside the womb. During the monthly cycle hormones stimulate the endometriosis, causing it to grow, then break down and bleed.
“This internal bleeding can lead to irritation, inflammation, pain, and the formation of scar tissue (adhesions).”
Endometriosis is actually the second most common gynaecological condition in the UK and affects 1.5 million women.
However it takes an average of 7.5 years from onset of symptoms to get a diagnosis.
Trying to make things work
Kerry’s husband also has fibromyalgia, as well as diabetes and a number of other conditions, which makes things a little more complicated.
“There’s days when I was in bed and my husband would have to care for our son because I couldn’t do anything,” she said.
“I’m my son’s carer and his needs are not so much physical, but he needs help doing certain things.
“There’s a team going on, if my husband wasn’t here caring for me then I couldn’t care for my son.
“The only thing that keeps us afloat is my husband is better in the morning and by 4pm is absolutely exhausted and I can function better in the evening.”
Kerry was also diagnosed with spinal stenosis this year, which is the narrowing of the bone in the spine that presses on her nerves and spinal cord. Her entire spine is degenerating.
“It is this tightening like someone is getting their hands around the base of my spine and squeezing really hard,” she said.
Kerry has started to use a wheelchair often to help with the fatigue and the pain and enable her to go on walks with her son and more.
“It’s the little things I am grateful for”
Living with numerous conditions is often difficult, and Kerry has struggled with anxiety and depression for a number of years.
The impact on her mental health is one of the hardest parts, and yet is also another ‘invisible illness’ which so many people avoid.
She said: “The biggest factor is the impact on my mental health. That is the hardest bit, the anxiety when your blood runs cold and guts drop.”
When it comes to what others think, that isn’t always easy either, which is why she is so keen to spread awareness about some of her ‘invisible illnesses’.
“People just think you are making it up,” she said. “You say I’m tired and it’s ‘yeah I’m tired too’, or my back’s aching and people say ‘me too’. I don’t know if its human nature to comment on that like that?
“My life could be so much worse though and it’s a lottery isn’t it. I feel grateful that I don’t have some life-threatening illness.
“It’s the little things I am grateful for.”
For more information and support around endometriosis click here.
Or to find out more about fibromyalgia, please click here.