Bedridden mum whose 'blood flows backwards' faces 14-month NHS wait
A single mum who desperately needs medical help to deal with her daily excruciating pain is being forced to wait 14 months for an NHS appointment with a specialist doctor.
Lolita Vaciete started experiencing agony in her abdomen last summer and a CT scan revealed that she is likely to have pelvic congestion syndrome, which feels like being "cut with a knife".
The long-term condition causes the 33-year-old's veins to become congested and forces her blood to sometimes flow backwards, leaving her dizzy and faint.
The syndrome has "ruined her life" and makes everyday tasks, like taking her eight-year-old son Jakob to school, a nightmare - as she runs the risk of passing out while on her period.
The mum-of-one started suffering severe pain in her abdomen last summer (Collect/PA Real Life)
This March she was forced to take sick leave from her job as as gourmet chef (Collect/PA Real Life)The gourmet chef is living "penny to penny" and fears falling into debt after taking sick leave in March, as she cannot stand up for more than a few hours at a time.
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Lolita, who lives in Milton Keynes, said: "Taking care of my son is what keeps me going and helps me find the strength to continue doing stuff, even though I can't physically.
"I feel like I've been locked in a box and told to just stay and wait. I don't understand how it can take 14 months for a blood specialist and gynaecologist to see me."
The mum-of-one did not think it was "serious" when she started feeling pain around her abdomen in June last year.
But over the next few months she rapidly lost weight and the pain intensified.
"In the past year, I lost two stone without even trying," she said. "Every time I moved, it felt like someone was cutting me with a knife in the right side of my abdomen.
"I was very weak and couldn't stand up for long without feeling dizzy. I was constantly going to the toilet, like every half an hour."
In November, Lolita visited Milton Keynes University Hospital where she was told that it was likely to be caused by pelvic congestion syndrome.
She had rapidly lost a lot of weight and now struggles to stand for long (Collect/PA Real Life)
The single mum feels like someone is 'cutting her with a knife' every day (Collect/PA Real Life)"The scan showed my blood vessels were dilated," she said. "They should not be more than 5mm and one of my veins was already 8mm."
She was told a meeting would be scheduled the following month with a blood specialist and gynaecologist to review the scan and confirm her diagnosis, but that never happened.
"I received a letter saying somebody will call me in a month's time to schedule the appointment," she explained.
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"But I didn't hear anything back, so I called them and received another letter saying my appointment had been delayed."
This went on until last month when Lolita received a letter saying she would not be able to see a gynaecologist until April 2024 and a blood specialist until June 2024.
"I called them in tears and said it was urgent, but they could only move the gynaecologist to February 2024," she said.
"I can't believe that it takes so long to see a gynaecologist."
Her whole world has turned upside down and there is a chance that she will have to have her uterus removed.
"Whenever I get my periods, I have to stay in bed because I can pass out from losing too much blood," she said.
Medics suspect that she has pelvic congestion syndrome but she cannot see a specialist till 2024 (Collect/PA Real Life)"If you look at who I was a year ago and who I am now, it has had a huge impact. Everything I do has to be simplified and my life has become five times slower."
Single mum Lolita does not have a support bubble and finds simple tasks, like the 20-minute walk to school, an ordeal.
"When my blood starts flowing backwards my blood pressure changes quickly, so I can be washing up and then I suddenly need to sit down," she said.
In March, she was forced to take sick leave from her full-time job in a fine dining kitchen, and the pay is now dwindling.
"If it continues I think that I will end up getting into debt this summer," she explained. "I'm literally living penny to penny to pay my bills."
Lolita believes her condition is so severe that it's also impacting her young son, who does not fully grasp the situation.
"I have noticed that he has been feeling a little down recently and I think it's because he is used to seeing his mum as a strong woman," she explained.
While waiting for treatment, Lolita has been prescribed strong painkillers to help ease the agony.
When her blood starts flowing backwards she has to sit down and wait it out (Collect/PA Real Life)
School runs have become difficult on her period as she risks passing out (Collect/PA Real Life)"That's how they want to fix me, 'here, take a tablet and carry on'," she said.
But there is nothing she can do to improve her condition other than avoid certain foods like vegetables which thin the blood.
"It just feels as though my life isn't important enough,” she said.
Lolita says her GP suggested the backlog may be due to the NHS strikes announced in November.
With nowhere else to turn, Lolita has set up a fundraising page and has raised £650 of her £4,000 target to pay for treatment called vein embolisation.
"I looked at going private but the costs are too big, I just can't afford it," she said. "I spoke to my friends and they suggested I start a GoFundMe page.
"This money will help me get treatment this year, and I will be able to make beautiful memories with my son this year.
"My heart is breaking when he doesn't understand why I am not the same. I am suffering alone and losing hope."
A spokesperson for Milton Keynes University Hospital said: "Ms Vaciete came in via our Same Day Emergency Care unit for urgent same-day assessment.
"Following triage by a clinician and a CT scan, Ms Vaciete was booked in for a non-urgent routine outpatient appointment.
"This is currently scheduled for February 2024 as the next available appointment.
"We are constantly reviewing our waiting lists and aim to bring appointments forward where possible, with patients being seen in order of clinical priority.
"If Ms Vaciete's symptoms are getting worse, we would advise that she contact her GP."
If you would like to donate towards Lolita's fundraising, you can visit her GoFundMe page online.
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