A single mum whose blood sometimes flows “backwards” has been left in excruciating pain and living “penny to penny” – but the next available appointment for her suspected condition is not until 2024.
Lolita Vaciete, 33, called the NHS in tears and begged them to expedite her treatment but was told she would have to wait a year before she could see a blood specialist about her condition. A CT scan revealed she is likely to have pelvic congestion syndrome which makes everyday tasks like taking her eight-year-old son Jakob to school a logistical nightmare and means she runs the risk of passing out while on her period.
While waiting for her appointment, Lolita, who has worked as a gourmet chef for 15 years, has been prescribed “strong painkillers” to help cope with the agony, which she describes as like being “cut with a knife”. She was forced to take sick leave in March as she cannot stand up for more than a few hours at a time, and says the decision to postpone her treatment has “ruined her life” and that if her income continues to dwindle, she will be plunged into debt.
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Faced with no other option, Lolita is looking to raise money to afford private medical treatment as she fears Jakob is also suffering because of her condition. Pelvic congestion syndrome, while not life-threatening, is a long-term condition where veins in the lower abdomen stop working properly, allowing blood to back up, causing the veins to become congested.
Lolita 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.”
Lolita 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, who lives in Milton Keynes, visited Milton Keynes University Hospital after the pain became unbearable and returned for a CT scan a month later which revealed she was likely to be suffering from pelvic congestion syndrome. “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. She said: “I received a letter saying somebody will call me in a month’s time to schedule the appointment.
“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.”
While Lolita’s condition is not life-threatening, her world has been turned upside down and there is a chance 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.
“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.”
Even simple tasks like taking Jakob to school, a 20-minute walk down the road, have become an ordeal. “I am a single mum and I don’t have any support around me,” she said.
“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.” You can donate here.
Lolita was working as a fine dining chef until March but was forced to take sick leave as her condition got worse. “I was working full time but I’ve had to stop because I can’t be in a hot environment or standing for long hours,” she said.
“I’m on sick leave but I’m getting paid less and less money. If it continues I think that I will end up getting into debt this summer.
“I’m literally living penny to penny to pay my bills.”
Lolita says her condition is extremely severe and is also impacting her son who is not accustomed to seeing her so weak and does not fully grasp the situation. “I’m asking because I’m desperate for me and for my son,” she said.
“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.”
While waiting for treatment, Lolita has been prescribed strong painkillers to help ease the agony. “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 GoFundMe page and has raised more than £500 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.”
To find out more about Lolita’s fundraising, visit www.gofundme.com/f/help-end-lolitas-pain.
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.”
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