‘It maks ye feel helpless’: patients and doctors cast doot on standard treatment for endometriosis

It is richt frustratin to be trapped in this cycle o continuous surgery. It maks ye feel helpless, says Natalie Greenwood, o a condition that affects her sae badly she is non-functionin maist o the time because o the constant fatigue.

Greenwood, 36, needs to hae an operation every few years to limit the impact o the endometriosis that gies her chronic pelvic pain, as weel as extreme tiredness and brain fog.

She says the trouble wi dependin on surgery is no just haein an invasive procedure and then haein to recover afterwards. It is mair that the benefit gained – the relief frae persistent pain – is brief.

She is no alane in her lack o belief in surgery and hormonal medication bein effective for chronic pelvic pain. A study has fund that this dual approach, which is the NHS’s usual way o treatin the condition, does no improve quality o life for female patients.

Greenwood was diagnosit wi endometriosis 13 years syne, after leavin university. It is a condition in which tissue similar to the linin o the uterus – the endometrium – is fund ootside the uterus, maist commonly in the pelvic cavity, and can cause inflammation and pain.

Greenwood, who is a languages teacher in West Yorkshire, has already had surgery three times: when she was 23, 28 and 32. In the first twa operations she underwent ablation, in which the endometriosis is removed usin heat or cauld. The last procedure involved excision, in which the surgeon cuts oot the endometriosis.

The surgery is effective in that it can keep the pain at bay for a few mair years. But I hae never come oot o it feelin better, she said. And in between surgeries I hae still had to hae hormone treatments, like a hormonal coil, or been put into chemical menopause. That keeps the endometriosis at bay by shuttin doon the hormones that cause it. But the endometriosis keeps growin. Sae ye micht feel better for a while but it is aye there in the backgrund.

Even after surgery, Greenwood has still needed what she calls her pain management toolkit – Tens machines, peppermint teabags, coolin patches, hot-watter bottles and CBD oil.

Endometriosis is one o the main causes o chronic pelvic pain, a condition that affects between 6% and 27% o women warldwide. Others include vulvodynia and bladder pain syndrome.

The surgery has never been a magic fix for me, said Greenwood. I dinna think it is a magic fix for mony folk. Ye dinna just suddenly feel completely better. A life o surgery every five years is just no somethin ye want to do. It is no sustainable. It is like a constant rut.

Greenwood has a laddie o five and is keen to hae another bairn. But endometriosis has affected her fertility sae much that she will soon start a course o IVF.

Whatever the ootcome o that treatment, she is sure o one thing: I winna hae surgery again. It is no manageable to keep haein surgery every five years. Whatever happens wi the IVF, after it I am gaun to hae a hysterectomy and my ovaries removed because that micht gie me some relief frae endometriosis.

Dr Jasmine Hearn, a reader in health psychology at Manchester Metropolitan University who co-led the research in the new study, said: Sadly patients are aften left strugglin due to current pain management strategies no sufficiently alleviatin pain.

Chronic pelvic pain is aften invisible but its impact can be profound. Oor findins highlight that women wi pelvic pain report poorer quality o life when they hae had surgery and hormonal medication for pelvic pain and better quality o life when psychological support is part o treatment.

The 147 women in the study, who were aged 18 to 66, all reportit that their pelvic pain had a major impact on baith their physical and psychological quality o life and ability to function normally.

Surgery was fund to be associatit wi lower physical quality o life while painkillers were associatit wi women haein poorer physical, psychological and environmental quality o life.

In contrast, women who receivit psychological help as part o their treatment to help them manage their pain said their quality o life was better. The evidence for its effectiveness was sae great that all those who suffer pelvic pain shud be offerit it, Hearn addit.

Dr Lucy Whitaker, a researcher wi the charity Wellbeing o Women and a clinical lecturer in obstetrics and gynaecology at the University o Edinburgh, agreed. She said the same suggestion was made in 2020 by Westminster’s all-party parliamentary group on endometriosis and by a confidential national inquiry into the condition in 2024.

Whitaker addit: Chronic pelvic pain conditions like endometriosis carry a weel-documentit psychological burden and integratin psychological support alangside medical management reflects a mair holistic approach to a condition that has lang been under-resourced.

A spokesperson for NHS England said: Chronic pelvic pain can hae a significant impact on women’s lives and mental health. That is why psychological professionals provide specialist pain-management support as part o wider physical health services – includin for chronic pelvic pain – while women can also self-refer to NHS talkin therapies for support wi lang-term physical health conditions.