Being able to eat and drink is a daily thing the majority of people take for granted. But for one Kiwi woman, they're tasks that up until a recent operation caused her excruciating pain.
Sarah Wills, 20, spent nearly a decade trying to get a diagnosis and help for her misunderstood condition.
Along with Ehlers-Danlos syndrome, Wills has median arcuate ligament syndrome (MALS), a disorder that puts pressure on the celiac artery that delivers blood from the heart to the stomach, liver, and other organs. MALS restricts blood flow in the artery and causes excruciating pain after eating or drinking because the surrounding nerves are being damaged.
Wills told Newshub in March her condition was "heavily misunderstood" and she had doctors in New Zealand continually dismiss her. She said it felt like doctors would rather "let [her] die" than give her the treatment she desperately needed.
Fed up with getting no help, the Palmerston North resident decided to fundraise to go overseas to get treatment.
The money raised helped pay for travel to Germany, where the specialist was, as well as accommodation, scans, ultrasounds, and her all-important operation.
Despite the long and frustrating journey, Wills said surgery was the best decision she's made. Just eight weeks after the operation, she can eat and drink without pain or vomiting - an incredible experience after years of agony. She told Newshub she still has some pain from surgery but that will fade over time.
"It's been a little bit bad but that's normal after surgery, you're going to have ups and downs. I'm still waiting to get my energy completely back because I'm still exhausted and all of that."
Before she had her operation, Wills spent most of her time in bed dehydrated and feeling very weak. She was confused and "spaced out" due to malnutrition and would start moving and talking in slow motion.
She was in constant pain, which got worse whenever she ate or drank, and felt like she was having a heart attack.
"I [would] pass out from my heart rate being too high but also from just being malnourished…I started having really bad insomnia, which is very hard because I'm so physically exhausted but I just can't sleep. Sometimes I only get three to four hours of sleep," she told Newshub in March.
"The feeling of being malnourished is something I can't explain, it's terrifying. Sometimes I close my eyes and I don't know if I'll wake up because I truly feel like I'm dying.
"I can't even have a sip of water without projectile vomiting and excruciating pain. Usually people are very shocked to hear water makes me so sick."
A long process to get help
Before her operation, Wills met with Dr Thomas Scholbach in Leipzig and had a Doppler ultrasound, which is used to estimate the blood flow through blood vessels. During this, Wills was shown exactly how her conditions were affecting her, something that was not available in New Zealand.
She saw where her compressions were and where blood should be flowing but wasn't. Wills also watched her stomach try to push food into her small intestine, but each time it would bounce back into her stomach. This, she said, explains why she would vomit every time after eating since her food was trying to go in a different direction.
"It was really cool to see because I've never seen anything like that in New Zealand, we don't have that type of imaging," Wills told Newshub.
"Nowhere else in the world besides Germany has that technology to be able to see all the stuff you could see."
After she received her scan results, she booked into Clinic Bel Etage in Düsseldorf and had her surgery on June 9.
During the seven-hour operation at the hands of vascular surgeon Dr Wilhelm Sandmann, Wills' compressions were fixed, including:
- severe MALS
- nutcracker syndrome
- superior mesenteric artery syndrome (SMAS)
- severe pelvic congestion
- massive May-Thurner syndrome
- intermittent compression of the vena cava
- nephroptosis, or floating kidney.
Despite the fantastic results, Wills said recovering from her surgery was the "worst experience" of her life.
"I did definitely have a few days where I was saying, 'I regret this, I'm in more pain than I was before surgery, why did I do this', and mum had to keep being like, 'It will get better'.
"It was really hard to deal with the pain. At the start, I had an epidural which blocked the pain quite well, so it wasn't as horrible. But then they start weaning you off it so that when you leave the hospital, you're used to just having the painkillers.
"The closer we got to being off it, the worse my pain was getting. The day that they pulled it, I did not sleep for about 24 hours. It was bad, it was really bad."
Wills was given about six different medications but still couldn't get her pain under control. She was mentally drained trying to cope with it and said the pain was indescribable.
It was still difficult after she left the hospital. When she was eating while in hospital, it wouldn't hurt since the epidural was blocking the intestinal pain.
Once she left, Wills started having horrible chest pains whenever she ate something but this was because her body wasn't used to food going through it and her nerves were starting to work again.
"I knew I had to keep trying to eat so I don't lose more weight or anything like that and become more malnourished but it's a mental challenge having to eat the food and know that you're going to be in excruciating pain," Wills said.
"But I just had to do it. There was no turning back once the surgery was done."
'Crazy similar' stories of doctors' constant dismissals exist globally
Wills told Newshub in March that doctors in New Zealand constantly dismissed her, with one even suggesting she do yoga to help with her pain. Another said because Wills "hadn't fallen off the cliff yet" and wasn't supposedly at her lowest or in incredibly desperate need of help, she didn't need IV fluids during a hospital visit.
Even after having surgery, she isn't hopeful local doctors will take her and her conditions seriously.
"I'm going to send them my notes and the scans and everything so they can read it. But I can just see them being like, 'We don't care', or not taking it on board and learning from it," Wills said.
"My gastro in Wellington is really interested - he wants to get the notes and read about it. He's a bit younger, and the doctors that are younger are more interested in learning than the doctors who are older and have been taught a certain way."
Wills said after she widely spoke out about her conditions earlier this year, she's received countless messages from people who think they have compressions and are struggling.
"You just see it everywhere. It's not as rare as people think it is, it's just we're being ignored and people are being left to die or to suffer for a long time," she said.
While in Germany, Wills met others who had surgery for compressions. They exchanged "crazy similar" stories of being dismissed by doctors in their home countries and feeling misunderstood by family and friends.
The group are now very close friends, Wills said, and they all spent time together hanging out in hospital after their operations in what her mum Barbara dubbed "the party room".
"The doctors they'd dealt with, the neglect, what they'd say to us, all of that, it's just so similar it's scary. It just shows you that ignorance is around everywhere all around the world with doctors," Wills said.
"Just being able to have friends who understood what I was going through because unless you're going through it, it's really hard to get it."
What the future holds
Wills is still in recovery from surgery but is starting to do more things around the house as she regains strength.
But she's got to be very careful what she does in recovery since she has stents - if she gets knocked in the stomach, it could displace them.
Luckily, she doesn't need any further surgeries at this stage. For the moment, she's visiting a physiotherapist and knows she needs to start regaining muscle and adding more food to her diet.
Wills' Givealittle page, which she used to fundraise for her surgery, is still open to help pay for leftover debt from the operation.
It will also help pay for additional costs she and her mum incurred while overseas, including having to fork out for an extra week at a hotel and paying for tests after Wills caught bornavirus.
"[The Givealittle page is] open and it would obviously be very helpful if we can get any more donations towards all of that."
Wills' mum Barbara said she's relieved her daughter finally got help and urged anyone who thinks they might have compressions to utilise social media.
"If it wasn't for social media, Sarah wouldn't have found out about Dr Sandmann and would've just struggled away here. So I'm really grateful for that and for her diligence in searching for things," Barbara said.
"Doctors will say, 'Don't go on the internet to look for your diagnosis'. Well if she hadn't done that, she wouldn't have found out what was wrong with her."