‘I AM BENT OVER IN PAIN. I SCREAM IN PAIN’
Teen says she can’t do anything because of the agony caused by endometriosis
GROWING up, Sandra Distel knew to expect mild cramps, mood swings and bleeding when her periods started. She did not anticipate that her menstrual cycle would ruin all aspects of her life, leaving her clinically depressed and in chronic, excruciating pain every single day.
The 18-year-old from Merthyr Tydfil lives with stage four endometriosis, also known as severe endometriosis. It is one of the most painful conditions a person can have, earmarked by deep tissue growths in the reproductive tract and other nearby organs.
Although some treatments may help, often these are unsuccessful. There is currently no cure.
The condition sees Sandra regularly bed-bound and has resulted in her being unable to complete her education or pursue her dreams.
She said despite her symptoms she felt healthcare professionals rarely took her seriously. She claimed one expert even told her she was “too young” to have endometriosis before a scan revealed she had the worst form.
She hopes by speaking out she can help debunk the myth that endometriosis is “just a heavy period” and help others feel less alone.
Describing life before her diagnosis, Sandra said: “I’ve always struggled with very heavy periods. I was in college two years ago and I had to leave college some days because of how heavy they were, but I didn’t know why.
“I went to the sexual health clinic and told them I’m really struggling. They tried me on a contraceptive but that didn’t help so I went back and they said we could try a coil. I was quite sceptical about it but they booked me an appointment. Because I was only 16 at the time I just wanted help and I wanted to get rid of my heavy periods and live a normal life. They made me think it would help. A month or two later I was in way more pain. My periods were way heavier. If I stood up I would leak everywhere.”
Sandra said she got one step closer to her diagnosis at the age of 17 during a trip to Poland, where her family is from.
“We went to Poland on holiday and my mum said she would take me to the gynaecologist. We went in and I told her I had a coil fitted. She did an internal scan and she was in shock. She asked for my mum to come in.
“I thought maybe my coil had moved to the side and was causing me pain. She said ‘you have a 10cm cyst that has probably twisted’. I was rushed into hospital and they did a scan and said I needed emergency surgery now. Once it was removed they said it didn’t look like a normal cyst so they sent it off to the lab. The results came back and said it was an endometriosis internal bleed.”
When she returned to Wales, Sandra said she felt hopeful she would get a formal diagnosis and be put on a treatment plan to ease her symptoms. However, she said this didn’t come easily.
“I came back here and went to the GP and explained what I had. They said, ‘OK, we’ll get you a gynaecologist appointment.’ It came to the day at Prince Charles Hospital and I was told I am too young to have endometriosis. I said, ‘Can you at least do a scan?’ He did an ultrasound scan, but I know these can’t always determine if you have endometriosis. I asked for an MRI or CT scan and at first they said no because I’m too young.
“I begged and said, ‘No I’m not too young to have it, my biopsy results already showed there is something wrong.’ They did an MRI scan and then I had a letter confirming I had endometriosis and it was deep. I was diagnosed with stage four endometriosis, which is one of the worst types.”
Following her scan, Sandra claimed she saw an expert at Prince Charles Hospital and was told all they could do was offer her a hysterectomy. Still just 17 at the time, Sandra said she left the appointment crying and scared.
“He made out like it couldn’t be that bad and said the only thing we can do is remove everything – that I would need a hysterectomy. I left the room crying in panic. I was so scared. I asked for a new gynaecologist but still feel like I’m not being taken seriously.
“They tried me on medication called Dimetrum, but that didn’t work. I’m currently on painkillers morphine and fentanyl and none of those are helping me, and they are very strong.”
Describing her life now, Sandra said she only has a three-day gap between her periods. She said she is regularly doubled over in pain, vomiting and crying. She has even experienced seizures because of the stress and pain, which has resulted in her mum calling for an ambulance on more than one occasion.
She said: “’I’m in pain every day. There are days when my mum has to help me get up. I have anaemia because I bleed so much and my bloods show that I have inflammation. A day in the life for me looks like being constantly in bed. I can’t get up to do anything, even just cleaning or folding clothes because I am bent over in pain. I scream in pain.
“Everyone with endo has different symptoms. Mine include ovulation pain, heavy bleeding, blood clots, nausea, vomiting, constipation or diarrhoea and painful bowel movements. I have severe bloating and abdominal pain, shoulder pain and severe back pain. Sometimes if I have a flare-up in the day I can’t feel my legs. I am constantly tired because I’m bleeding so much and even when I’m on medication it doesn’t help me.
“I don’t go out. I see my friends going out for a meal and having fun... It does get to you. I’m on antidepressants because of it but I still struggle.”
Describing her level of pain, she added: “It’s a 15 out of 10. It gets so bad that it’s uncontrollable even when I take morphine. Sometimes I wish I could give my pain to people for just two minutes for them to feel
it. Then maybe they would understand.”
Sandra had been attending college to study travel and tourism with the dream of being part of a cabin crew team. She also took courses to do waxing and lashes, but had to give it all up because of her condition.
She said: “I want to work and I want to go back to college to finish my courses. But because of how ill I got and how many lessons I missed, the college said they could no longer keep me on because I had missed so much and had exams coming up.
“If I didn’t have this I would definitely still be in college, pursuing my dreams of being in an air cabin crew. I would have my own business doing lashes and waxing. My life would look completely different. I would be living a normal teenager’s life: going out, having fun and not having to worry about anything.”
Although a hysterectomy has the potential to treat Sandra’s symptoms, she said she hopes it will not come to this. The procedure involves removing the womb and sometimes other reproductive organs. It is a major operation and means you cannot get pregnant. It is usually prescribed as a last resort. Sandra said she is hesitant because her endometriosis also affects her bowels and kidney, meaning that it may not completely stop her symptoms.
She also wants every chance to get pregnant at least once in the future.
She said: “You do have fertility problems with endo, but I’m trying my best to save what I can to be able to have a chance of having that one child. I love children and I want one in the future. Doctors often say the best option to improve symptoms is to have a hysterectomy, but even after that symptoms can eventually come back.”
Sandra said she is currently pursuing treatment in Poland, after visiting last month and speaking to a gynaecologist. As her only option is expensive surgery, Sandra said she is now raising money to help improve her quality of life.
She said: “I went to Poland a month ago. I saw a doctor and asked him to please help me. He tried me on medication for three weeks but unfortunately that didn’t help. I also have Crohn’s disease so my body can reject tablets. Following that, he said the only option is a surgery that will remove the endo and put me on menopause to slow the endo from growing for a time so I can live a normal life for maybe a year or longer. I would then have regular check-ups to see how it’s going. The doctor will try his best to keep what he can so I am able to have children in the future, but it all depends how bad it is – and from what he’s seen it is bad.”
Since setting up her fundraiser, Sandra said she has had many messages from women saying they have had similar experiences.
Hoping to debunk common misconceptions about the condition, she said: “The main misconception is that it’s just a period. It’s not just a period, endo affects the whole body. It is often listed as one of the top 10 most painful conditions alongside giving birth and having a heart attack. Doctors don’t take into consideration the symptoms women experience and women’s pain isn’t believed. On average it takes 10 to 12 years for a woman to have a diagnosis. At first they will go in and be told there’s nothing wrong with them, that it’s just a heavy period.
“Then over the years things get worse until they come back again and have a scan – then they are told something is wrong with them after all. I want the NHS to be better at dealing with endo. And for the doctors to listen to women and girls when they say their periods hurt.”
A spokesperson for Cwm Taf Morgannwg University Health Board said: “We are unable to comment on care received by individuals. However, we are in contact with Sandra’s family and will be addressing any concerns with them directly.
“Supporting and caring for women with a diagnosis of endometriosis is fundamental to the work of our specialist women’s health hub, based within our health board.”
Sometimes I wish I could give my pain to people for just two minutes for them to feel it. Then maybe they would understand
SANDRA DISTEL