A newlywed unable to have sex with her husband because of an UTI said she was "medically gas-lighted" by "sexist doctors".
Milly Herner contracted long Covid while working as a music therapist with vulnerable and terminally ill patients, leading her to suffer from a severely-compromised immune system.
The 35-year-old then became susceptible to other infections and since November 2020, just five days before her wedding, has suffered with a chronic Urinary Tract Infection (UTI), Hull Daily Mail reports.
Soon the infection spread to her kidneys, leaving her hospitalised with life-threatening sepsis.
Milly said she encountered several "sexist and bullying" doctors at different hospitals across the country who "medically gaslighted her".
She said that they dismissed her concerns as "women's problems" and suggested her symptoms were caused by poor hygiene, STIs from affairs or that she was imagining it.
The only available treatment in the UK for a chronic UTI is long-term high-dose antibiotics therapy, which she started in August 2021.
But sadly Milly had several adverse neurological reactions to the medication, that were so severe doctors initially feared it was early signs of dementia.
The newlywed is now largely bed-bound due to the agonising pain she is constantly in, which is so bad that she has thought about taking her life on many occasions.
Now Milly says she's left with no alternative but to seek vital life-saving treatment in Europe that costs thousands - leaving her fundraising for the pioneering therapy.
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.
"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 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.
"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."
Milly's UTI symptoms struck at the end of November, just five days before her wedding to music therapist Alexis Wreathalon on December 7th.
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.
"I managed to just about get through my wedding - adrenaline carried me through and obviously the love of my husband who wanted to make sure we got married.
"He was lovely and said 'you can do it in your pjs, we don't have to do anything fancy'. The adrenaline of the wedding kept me going but after that I was bed-bound."
In January 2021, just 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 she was experiencing - something usually reserved for a palliative care patients - 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 Urinary Tract infection.
But in August, just six weeks after she began antibiotic therapy, she started to experience severe adverse reactions that caused her to be hospitalised again.
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% 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.
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, which uses viruses to infect and kill bacteria.
The couple are now fundraising £30,000 to cover treatment costs, travel and their stay in Georgia, Europe.
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.
"We're fundraising for £30,000 to cover all the treatment, including consultations and scans, the Airbnb stays and flights back and forth.
"The hope of having this treatment just keeps me going."
