I couldn’t have sex and felt suicidal as doctors medically gaslighted me over chronic illness
A WOMAN has had her life destroyed by a chronic illness but she claims she was “medically gaslighted” by doctors.
Milly Herner, 35, was struck with a urinary tract infection in November 2020, days before her wedding.
But ever since she tied the knot, the pain persisted and antibiotics failed to work.
It took five months for doctors to admit she had a chronic UTI, as Milly claims they brushed off her concerns as merely “women's problems”.
They suggested her urinary problems were caused by poor hygiene, STIs from affairs, or suggested she was imagining the pain.
Treatments have failed to work on the newlywed, who is now largely bed bound due to the agonising pain she constantly suffers with, describing it like “carrying a bowling ball of acid” in the genital area.
She says she thought about taking her life every day and is unable to have sex with her husband, work, or even drive.
Milly, from Ross-on-Wye, Herefordshire, said: "It's robbed me of everything. It's the most enormous burden - both the physical pain but also the mental toll.
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"Being in such significant pain wires your brain to be in a constant state of fight or flight, I'm just terrified all the time of getting another infection.
"The pain is like carrying a bowling ball of acid in your entire abdomen, vagina and anus - the whole genital area.
"The impact of being in this amount of pain means I'm bed bound most of the time, I can't walk my dog, I can't work and I can't have a sexual relationship with my husband.”
"I feel enormous amounts of guilt that my husband is dealing with this too.
"Wanting to escape the pain every single day is awful, since the condition came on I've thought about taking my own life every single day."
Wed and bed-bound
Milly, who worked as a music therapist with vulnerable and terminally ill patients, first came down with a UTI at the end of November 2020.
It was five days before her wedding to 38-year-old Alexis Wreathall.
Milly said: "It came on this enormous wave of pain. I've had recurring UTIs before so I really got straight on it - drinking lots of water and reaching for my natural supplements.
"I called my GP and explained to them that I had all the symptoms of a UTI.
"Without testing my urine, an out-of-hours GP prescribed a three-day course of antibiotics but they did nothing.
"The pain very rapidly increased to the point where it's where it is now.
“It's pressing on my pudendal nerve so the pain is from my belly button all the way down to my bladder, urethra, vagina, anus and down the back of my legs.
"It's an all-encompassing pain that's linked to the pain you get at stage-five renal cancer.
"The adrenaline of the wedding kept me going but after that I was bed bound."
Gaslit by medics
In January 2021, a month after getting hitched, Milly was struck down with a severe kidney infection and was admitted to hospital.
Milly was given the highest dose of morphine to tackle the excruciating pain before being referred to specialists.
Milly said: "It was at this point large prescriptions of morphine were handed out and I was then referred to a pain specialist and a psychology team on the NHS by my GP.
"I had appointments at different hospitals over Zoom and unfortunately those were very traumatic experiences.
"The psychology department at one [hospital] went down the route of asking 'is the pain in your head?'
"I was asked if I had anxiety or depression and whether I'd had trauma in my life. I remember thinking 'I've got a UTI, what's this got to do with anything? It was like medical gaslighting.
"The pain consultant was worse. He asked me whether it was a 'cleanliness' issue, if I knew how to wipe myself after a poo or whether it was 'women's' pain - period pain.
"When I finally saw a urologist I was asked if I was 'promiscuous' and asked both me and my husband separately if we'd had affairs behind each other's backs.
"We were asked if we had contracted an STI but we're both clear STI-wise - you can see this from our medical histories - and we're both faithful and love each other.
"The whole experience was so disturbing because there are people in positions of power and trust.
"We hang onto their words. I was, and still am, in agony and vulnerable and they were like bullies."
Desperate for a diagnosis, the couple spent more than £10,000 of their savings on private consultations.
After speaking to a specialist in April 2021, Milly was finally diagnosed with a chronic UTI.
UTIs are usually caused by bacteria entering the urinary tract through the urethra - the tube that carries urine out of the body.
Chronic UTIs develop when acute infections are left untreated or fail to get better with standard treatments, such as antibiotics.
Over time the bacteria that cause UTIs move from the urine and into the cells of the bladder wall where they are harder to kill.
Campaigners say testing for UTIs is outdated and often fails, leading to misdiagnoses and time for the infection to progress.
And antibiotic courses - such as that given to Milly (three days) - may be too short to effectively kill the bactera.
Up to 1.7 million women in the UK suffer from chronic lower urinary tract symptoms, according to the .
Milly’s agonising infection spread to her kidneys multiple times, resulting in her being hospitalised with renal impairment and life-threatening sepsis.
The only available treatment for chronic UTI in the UK is long-term high-dose antibiotics therapy, which Milly started in August 2021.
But sadly, Milly reacted badly to the medication and was hospitalised just six weeks after she began the therapy.
Milly said: "We felt at that point 'we're saved, I'm going to get better' but unfortunately I had a very rare neurotoxic reaction to the antibiotics I was given.
"This included tendon pain in my achilles and severe pain in my hands where they clawed like lobster claws.
"Over the next two days I lost 70 per cent of my vision, developed a heart arrhythmia and was vomiting and had diarrhoea constantly.
"Paramedics recommended I go to hospital and be checked over, there I went into a hypoglycemic coma and was slipping in and out of consciousness all the time and didn't know who I was.
"I was showing what doctors thought were early signs of dementia but it was just a neurological response to this drug.
"My brain and central nervous system thought the antibiotics were a toxin. I had brain inflammation and that affected every organ in the body except my liver."
After a week on a hospital's acute ward, Milly then was admitted to another hospital where she had antibiotics administered to her bladder through a catheter.
She says the neurological side effects she experienced have been long-lasting.
Milly said: "I can't drive anymore because of the neurological damage.
“The most devastating thing is because of the nerve damage in my hands I can't play instruments anymore.
"I'm a music therapist but now I can't play my instruments, I've been playing the piano since I was six.”
As Milly has reached the end of the road using antibiotics to tackle infections, she is now looking to an alternative treatment called Phage Therapy.
It uses viruses called “bacteriophage” that go into the body and eat bacteria that are causing infection.
Although not approved in the US or Europe, and more research is needed to see if it works, Milly says her neurologist is fully behind her.
Milly said: "Thankfully my neurologist was incredibly helpful and supportive and told me about this treatment.
"I was so grateful for him pointing us in the right direction.
"The therapy for a chronic bladder infection is a minimum of one year because the bacteria has invaded every cell of the bladder wall and the bladder wall takes a whole year to shed.”
The couple are now to cover treatment costs, travel and their stay in Georgia, Europe, where Milly hopes to be treated.
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She said: "The hope of having this treatment just keeps me going."
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