Transvaginal mesh implants: Patient stories

I have had the privilege to speak with two women who are now participating in a transvaginal mesh support group through Women’s Health Victoria (WHV). Their stories touched me.
 
Kim
Kim is aged 56 and in 2013 had surgery for severe pelvic organ prolapse, secondary to traumatic forceps deliveries of her three children. Formerly a chef, which involved standing in the kitchen all day, her condition worsened and her pelvic pain worsened as the day progressed.
 
Kim’s surgery included a vaginal hysterectomy and mesh insertion for vaginal wall repair. She thinks her ovaries were left intact, as per her request, but subsequent pelvic ultrasounds cannot locate them.
 
Immediately post-operatively, Kim did not feel well and since that time continued to not feel well. She went back to the surgeon months later regarding vaginal bleeding. He prescribed vaginal oestrogen to help with the erosions in her vaginal wall and she continued to see him every six weeks with ongoing pain and bleeding.
 
On one occasion, Kim experienced a large exposure in her vagina – presumably of mesh – which he trimmed in his rooms without anaesthetic. Kim described the pain as excruciating. She felt sick continuously and described the visits to the surgeon as ‘disheartening’; he was clearly frustrated with her constantly rebounding back with more problems.
 
The surgeon finally retired and referred her to a urogynaecologist. But, upon making the referral, the surgeon actually said, ‘I can’t do anything for you, this is too complicated for me’.
 
Kim lives in outer-metropolitan Melbourne and was a regular visitor to her family GP, who had no knowledge of mesh implications and treated her simply for her recurrent urinary tract infections (UTIs).
 
In all, Kim has had six revision surgeries with the urogynaecologist to remove mesh and restore her function, and more surgeries planned. Although she is grateful to the urogynaecologist, who is listening and working through the problems with her, not one person has been able to deal with her holistically in the years since her initial surgery – her pain, her complications, her anxiety and the way it affected her life are all ongoing.
 
Kim has a Mental Health Plan through her GP, lives on daily Panadol and takes the occasional Endone as a last resort. She has had to stop working and has not been able to have pain-free sex throughout this time.
 
Upon reflection, Kim says she would never have had the surgery had she known the toll it would take on her and her loved ones. Everyone in her family has been affected.
 
The financial burden has meant restrictions to the entire family in a number of other ways. For example, Kim is unable to perform household duties and basic housekeeping, go shopping, undertake camping excursions (previously a popular family pastime), or drives for more than 20 minutes. She needs to limit her intake of fluids and describes her entire life as revolving around the location of a toilet. Formerly a hard-working, house-proud woman, everything in her life has changed. Sex, which was previously enjoyable, has been painful and for extended periods she had been unable to have any sex at all, let alone sex without pain. Sitting, standing, walking all hurt and only lying down would relieve some of the pain.
 
Other women Kim has met through her transvaginal mesh support group directed her to a specific continence clinic. She then requested a referral to a local group through her GP, and this has been enormously helpful. The continence clinic has taught Kim techniques that have given her confidence to go out and, although her pain is at 5/10 daily now, this is a vast improvement on the 9/10 she lived with prior to mesh removal, revision surgeries and the treatment plan she is now on. 
 
I asked Kim what she would want GPs to take from her story. She said GPs need to look beyond what people present with and should know where and to who they can refer patients like herself. She admits that her GP didn’t know about transvaginal mesh and its complications, just as she didn’t, and they learnt about it along the journey of her pain and the disruption to her life.
 
Lisa
Lisa, now 58, had a vaginal hysterectomy and mesh inserted for a fibroid uterus and prolapse in February of 2015. Within three months, she was aware of symptoms that were entirely new to her.
 
Her vulva was swollen and tender all the time and she felt like there was a medicine ball in her pelvis pushing down on her groin, bladder, bowel and pelvis. Lisa felt quite embarrassed about her symptoms because they were atypical and bizarre, and her GP put everything down to menopause.
 
This continued and the pain worsened as time passed. Lisa’s description of the pain was of a star with prongs in her urethra that constantly spread electric shock-like pains through her entire pelvis. When she walked, she felt she would lose control of her bowels. She could not sleep due to the pain.
 
Lisa admits she did not know that she had mesh inserted in her pelvis and her loving partner, an avid ABC watcher, saw a program on transvaginal mesh and asked her if she thought that was what she’d had done. Her response was that she had a sling, not mesh, but the question got her thinking.
 
Lisa sought the expertise of her GP, who cut her off by stating that he didn’t need to know about this sort of surgery. In dismay, Lisa visited another GP, had a referral to another surgeon and has since had the mesh removed.
 
The removal procedure was performed two months ago. Lisa says she is now is feeling 95% better and, although she still has some pain, it is steadily improving.
 
I asked Lisa what she would want GPs to take home from her story. She replied, ‘Respect. Listen to what the patient is telling you, listen to what they are describing and investigate early by actually taking a look. A patient should not be reduced to the point of begging for care’.
 
That is exactly how Lisa felt when she kept returning to both her surgeon and GP.

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