Hundreds with serious vaginal mesh injuries still fighting for ‘basic care’

Two groups will appear before the Oireachtas Committee on Health on Wednesday calling for ‘choice, access and funding’ regarding potential care

Four years after a pause was ordered on the use of vaginal mesh to treat women with stress incontinence and/or pelvic organ prolapse, hundreds with serious mesh injuries say they are still fighting for “basic care”.

Women, many of whom have lost livelihoods and relationships due to complications including chronic pain, relentless infections, incontinence, loss of mobility, bleeding and depression, say they are still not being told whether the mesh is the cause, are still denied appropriate treatments and in some cases are leaving Ireland to access care.

Two groups, representing about 600 mesh-injured women, will appear before the Oireachtas Committee on Health on Wednesday calling for “choice, access and funding” regarding care.

Key for both Mesh Ireland and Mesh Survivors Ireland is the choice to have the meshes fully removed — something they do not believe is available here. They are calling for funding to travel to a world expert in complete mesh removal, Dr Dionysius Veronikis, a specialist in women’s pelvic medicine and reconstructive surgery at the Mercy Hospital in St Louis, Missouri. He has fully removed thousands of meshes, including from eight Irish women since 2019, each paying about €9,500 for the surgery alone.

The groups will tell the committee Irish women continue to be “gaslit” by the medical community and that “trust is very low” between many of them and the Department of Health, the Health Service Executive (HSE) and the Irish medical community.

In July 2018, the HSE paused the use of vaginal mesh — also known as slings or tapes — to treat urinary stress incontinence and pelvic organ prolapse where safe to do so. This followed a similar pause by the British health authorities due to concerns about serious complications in a minority of women.

The meshes, made of synthetic materials, are implanted in the woman’s pelvic area to effectively hoist prolapsing organs or ‘leaky’ bladders back into position. Though intended as permanent implants, many women injured by them say they were not warned of their permanency or potential problems of meshes shrinking, twisting, eroding into organs or protruding into the vagina.

In November 2018 a report by chief medical officer Dr Tony Holohan made 19 recommendations, including that information about mesh complications and services be freely available to injured women; referral pathways be established for women with mesh complications; multidisciplinary services, including specialist diagnostic services, be established; and that treatments for women in urgent need of care, including if necessary abroad, be identified.

While the HSE has established a national mesh complications service, at the National Maternity Hospital (NMH) in Dublin and Cork University Maternity Hospital (CUMH), as well as referral pathways across the six hospital groups, women who have spoken to The Irish Times say they continue to suffer enormously without answers or satisfactory treatment.

These include women in Northern Ireland — among them Patricia Morgan (62) from Co Antrim, who “suffered 12 years of horrendous pain”, becoming housebound and suicidal as a result of mesh she had inserted in 2009.

She was referred variously for physiotherapy, pain management and counselling. She was never told her problems could be the mesh until she asked, having heard about it on the news, in 2017.

Her multidisciplinary team in the Belfast hospital in November 2020 advised it was “not in [her] best interests” to have the mesh removed, and recommended pain management and counselling. Nevertheless, at her own expense, she travelled to St Louis in March and following a seven-hour operation it was fully removed.

“Since I got home I am a new woman. I am back attending Mass daily. I have been to prayer group. I have been shopping with my sister, out to lunch with another sister. I’m getting seven hours sleep at night whereas I used to be in such pain in my legs I couldn’t sleep,” she says.

“My bladder is working perfectly — no dribbling or leaking. The oedema is gone — I have my legs back. I have lost 20 pounds in weight. I am a new person. I have got my faith back. I have my body back. My husband keeps saying he can’t believe the change in me. My family are over the moon.” The Belfast Trust could not comment on her individual case.

Morgan will be attending the Oireachtas committee with Mesh Ireland, which was set up by mesh survivor Mary McLaughlin.

A passionate advocate for Irish women to have access to full mesh removal, she is calling for a scheme to be established, similar to that which ran between October 2018 and February of last year, in Quebec, Canada, which funded women to travel to the United States for full removal.

The Scottish NHS is also finalising a contract with the St Louis hospital to refer women to Dr Veronikis for full removal.

Asked how many women in the State have had mesh implants, the HSE said these figures were not recorded. It says full mesh removal is available where clinically indicated though it would not say how many have been performed or by which surgeons. A spokeswoman for CUMH said seven full removals had been done since 2012. The NMH did not provide figures.

The HSE says funding to travel for full mesh removal, when appropriate, is available through the Treatment Abroad Scheme (TAS), but it would not say how many women have been funded.

McLaughlin, who had her mesh removed by Dr Veronikis in 2019, said the TAS was “being barricaded” from women seeking full mesh removal. They need a referral from an Irish consultant to qualify and that Irish doctors appear reluctant to refer.

Terri Martin, co-ordinator of Mesh Survivors Ireland, agrees: “In this country all they offer is partial removals. They say it’s too dangerous to take out the rest. Partial removal, in the long term, is going to cause more issues. Granted full removal is a risky procedure, any surgery is, but we want choice. If I want to go to US or England that choice should be left to me.”

Prof Declan Keane, who has inserted meshes and treats mesh complications at the NMH, says full mesh removal is extremely complex and rarely appropriate though can be done here. He favours partial removal, where the most problematic section of the woman’s mesh is removed, or pain management and other therapies.

“I don’t discourage any woman from having the full mesh removed if she wants it,” he adds. “I have supported two ladies taking the trip to Dr Veronikis. I don’t think any of us here in Dublin or Cork would discourage any woman seeking a second opinion, but it isn’t always the absolute panacea.”

Asked why he would refer women to Dr Veronikis if full removal was available here, he said: “Most of us who are pelvic surgeons and have done uro-gynae have a fair idea where to go and what to remove because we put in these meshes over the years. But I think people are often keen to go to a surgeon that they feel has more experience.

“About three years ago there was a trend for full mesh removal ... but the mood internationally in the last 18 months is that for the vast majority of patients full mesh removal is not performed and shouldn’t be performed.”

Dr Veronikis, speaking via Zoom from St Louis, told The Irish Times he had been treating women with vaginal mesh complications since 1998. He has removed “thousands of mesh” since then. Among them have been “hundreds” who have experienced ongoing problems after partial removals, he said.

“The best outcomes are with complete removal. I don’t want to be harsh on the Irish doctors or any doctor, but I have been practising for nearly 30 years. I have been a surgeon of last resort for very complicated, pelvic floor issues.

“Women are smart. They do their homework, they listen to the stories of other women who were offered other treatment options. The women who come to me want options, want a voice in what happens to their bodies. They are exercising the best option, best decision for their life, their wellbeing and for the care of their families.

“It is sad the women have to travel. It’s a long journey. They have to prepare, have to find the finances for accommodation, for the surgery, the fees in the hospital. It’s a lot.”

A HSE spokeswoman said: “Since complications for women following surgical mesh treatment first emerged, it has been a priority of the minister for health to ensure that all women experiencing complications receive high quality, multidisciplinary and patient-centred care.

“The CMO’s report, The Use of Uro-Gynaecological Mesh in Surgical Procedures, published in November 2018, contained a number of recommendations. In April 2019, the HSE published a detailed implementation plan to progress the recommendations and the national women and infants health programme continue to lead on this work.

“The HSE has also advised the department of the development of a TAS protocol for mesh removal, for women with certain defined clinical complexities.

“Women’s health is a key priority for the minister, and both the Department of Health and the HSE continue to focus on prioritising the care needs of women affected by mesh-related complications.”

Kitty Holland

Kitty Holland

Kitty Holland is Social Affairs Correspondent of The Irish Times