‘The pain is inhumane’: how NHS gynaecology delays affect women’s health

Gynaecology waiting lists have grown by 60% since before the pandemic – a bigger proportion than any other area of medicine, according to the Royal College of Obstetrics and Gynaecology.

It means that many women with conditions such as endometriosis, prolapse and heavy bleeding can wait more than a year for NHS care in England.

A fragmented approach to gynaecology in the UK also means many women are being shuttled between GP surgeries, sexual health clinics and hospitals while advocating for their own treatment.

Though such conditions are defined as medically benign, those experiencing the debilitating health issues tell of being left in agony for months on end, worsening symptoms and sexism from healthcare professionals.

Here, women explain how delays have affected their lives.

I went to see a GP in November 2021 and was referred for a pelvic scan which happened two months later. I was diagnosed with fibroids and a gynaecologist rang me to say I needed to have a coil fitted to help shrink them and stop the heavy bleeding.

The procedure was horrific. I didn’t know quite how painful it was going to be. I haven’t had children and I’m a survivor of sexual assault, but I didn’t feel like I could speak up for myself at the time.

It didn’t stop the bleeding and I was in a lot of pain, so a couple of months later, my GP referred me to the hospital believing I had an infection. But while there, I was told I needed to have the coil removed because it wasn’t suiting me.

Though the pain I’m in is now inhumane, the wait for the procedure – which my GP will carry out – is two months. I did try a sexual health clinic but they also didn’t have any appointments.

Because my job is physical, I’m constantly bending over which I think makes the symptoms worse and I’ve had to take some time off. I used to go to the gym three times a week and play squash twice a week, and I haven’t been able to do any of it.

My mental health has been deteriorating, but I’m worried if I even tried to access support through the NHS they would dismiss my gynaecological issues even more. I’ll tell you who has been brilliant, the Samaritans. If I didn’t have them it would be a different story because my mood has been so low and I feel like I’ve been getting nowhere.

I haven’t been told about alternative treatments for the fibroids and I’ve now made an appointment to go private. The initial consultation costs something like £180, but the tests cost a lot more. It’s not ideal to be honest as a self-employed person.
Hannah*, 42, Isle of Wight

I was diagnosed with endometriosis in 2018 and around two years later the pain started increasing again. A scan showed I had large endometriomas all over my ovaries and as I was struggling to conceive, I was told I would need to have the cysts drained before I could start fertility treatment.

During that appointment, I also had an ultrasound which caused a cyst to leak, leaving me in agony for months. My husband would come home and find me lying on the floor in pain waiting for it to pass. We both felt so helpless.

The NHS waiting list for the procedure I needed was 18 to 24 months, but I was in so much pain I paid to go private. After an investigative laparoscopy, the consultant felt he didn’t have the skills to operate as it was so severe, so I was back to square one. It cost just over £3,000 and I was under for 20 minutes.

I finally had NHS surgery on 30 March this year, after an 18-month wait. In the process of draining the cysts, the surgeon perforated my bowel. I nearly lost my life, which was really scary. I had an ileostomy and now have a stoma bag and I suffered a blood clot in my lung a few weeks after, so now I’m on blood thinning treatment.

If everything goes well, I’ll have surgery to reverse the ileostomy at the end of the year. But it’s turned the whole thing into an even longer journey, and the whole point was to start IVF straight after.

You blame yourself; there are lots of what ifs. I had the opportunity to have a laparoscopy when I was 19 but there were no beds available that day and I was so scared I just left. I didn’t have it until four, five years later. But at no point did any healthcare professional say how beneficial it would be if I did have endometriosis.

My husband wants to submit a complaint to the hospital where the surgery was performed but I don’t have the mental strength to do it.

I’ve gone through all of the emotions over the past few years, but I’m very much a “it is what it is” person so I just have to take it one step at a time.
Sameerah, in her 20s, south-west England

I started going to the doctors about excessive bleeding and irregular periods four years ago. I was always told it was probably stress, even when I insisted it wasn’t.

I even requested my doctors’ notes and found that I had been described as a “weeping woman”, while one nurse had written “should have a scan” but never referred me.

I begged for a pelvic scan in the end and had to wait six months for the appointment. I went on my own in December last year because I had been told so many times nothing was wrong, and was expecting it all to be fine, and then in an abrupt and sudden manner was told I have an 8cm fibroid and polycystic ovary syndrome (PCOS).

Last month, I had a miscarriage at eight weeks after being told to try for a baby as soon as possible because it’s unlikely I’ll be able to get pregnant. Doctors are still unsure if it was connected to my fibroid, but it made the physical pain excruciating.

If I’d have been diagnosed with this earlier, I could have had a simple treatment. Now I live with excessive pain during 20-day periods. For a couple of days a month I have to take time out of work as a primary school teacher because it bleeds through everything I wear and I feel really faint and confused.

It’s really dehumanising because I can’t think logically and be myself. I’ve been really shocked by how much healthcare professionals don’t seem to care about that, it’s all been about whether I can produce a child.

I’ve moved to a different hospital for regular appointments after a lack of care at my original hospital. I need a myomectomy to take the fibroid out, but the waiting list is 18 months. They want me to have a hysteroscopy to examine my womb, but I’ve paid for a private appointment where I was told I didn’t need this.

I get two good weeks a month when I’m chasing the hospital to book me in for the surgery. It’s like a full-time job – ringing them while I’m on my lunch break or when I get home.

I’m having a week off this week, but I’ll need to get back to it after. Mary*, in her 30s, London

I’ve suffered with urinary incontinence since having my first child in 2016. About a year later, my GP referred me to gynaecological physiotherapy, where I was told I had a prolapse.

The response was that I should continue with pelvic floor exercises, but it wasn’t working. I went back to the GP and was told I couldn’t see a specialist because I needed to have six lots of physio first. I think they were just box ticking, but it was wasting time – there’s around two months between each appointment.

After my son was born in 2020, I asked to be referred to a specialist but was again passed on to to a physiotherapist. Last year, the physiotherapist asked if I knew all the options available, and I said I knew about pelvic mesh and the issues around it. Then they told me about vaginal pessaries. I cried when they told me there was an alternative. I felt like it had been kept secret.

In January this year, I had an appointment for measurements and waited two months for the procedure. I’ve since had two pessaries that didn’t fit, and now that specialist nurse has left the trust and they are waiting to recruit someone.

Before she left, she referred me to yet another specialist for surgery to repair my bladder wall but warned me that the waiting list is two years.

My initial consultation is in June. In the meantime, while I’m also waiting for the pessary as a temporary fix, I’m unable to do high-impact exercise. I’ve wet myself in the gym, while attempting to run and even while sneezing at work. It’s embarrassing and I don’t feel I’ve got the freedom I want.

It feels like there’s this attitude in healthcare that if you’ve chosen to have a baby, you just have to suck up the health implications that go along with that.
Madeleine, 41, Bristol

*Names have been changed

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