Jamie
Jamie experienced issues with urinary continence after childbirth, which were addressed through a mesh operation. She experienced severe pain from the mesh, and underwent additional surgeries to fix the complications.
Jamie enjoys spending time with her husband and crafting. She has four adult children. She is not in paid employment because of disability. Her ethnicity is White British.
Conditions/symptoms: urinary incontinence, mesh complications
More about me...
Jamie began experiencing problems with incontinence and pelvic floor strength after the birth of her third child. She continued to struggle with urinary incontinence after her fourth child was born. Because Jamie has a history of sexual abuse, pelvic floor physiotherapy was often unpleasant and upsetting. She saw various healthcare providers, including a gynaecologist, a urologist, and an incontinence nurse.
The gynaecologist recommended that Jamie undergo a mesh procedure. She was assured by the physician that “there’s nothing to worry about” and that the mesh complication rate was low. Undergoing surgery was “very traumatic,” as Jamie was awake during the procedure. She couldn’t walk for weeks after the surgery and experienced severe pain. The surgeon disregarded her pain at the post-op appointment and instead advised her to “go home and have sex and double void”. This dismissal left Jamie “in shock” and without help for her discomfort. Looking back, Jamie feels that she was “actually butchered” during the mesh operation.
Jamie spent a year with pain in her back. After seeing her GP, she was referred to a private consultant. At first, the consultant was a “bit dubious” about the mesh causing pain, but after urodynamic tests and cystoscopy, the consultant agreed to mesh removal surgery. Jamie was strongly encouraged to undergo a full mesh removal. Since her pain was in one spot and she wasn’t having autoimmune issues, she chose only to have a partial removal. The surgeons discovered an abscess behind the mesh, which made Jamie feel “vindicated” on her choice for the partial removal.
After the partial mesh removal, Jamie’s incontinence returned. She underwent an autologous sling procedure to help with this but found that “my problems started again” post-surgery. Jamie continued to have “excruciating pain” and problems with urine retention. She had a suprapubic catheter installed, but her healthcare providers did not provide information about leaving the hospital with a catheter. Jamie joined an online bowel and bladder support group and received “more help from them than anywhere”. Jamie struggles with pain from the catheter and is scheduled to discuss this with her consultant.
Throughout her journey with urinary incontinence, Jamie has experienced issues with having care that meets her needs as a person living with disability and a survivor of sexual abuse. She has been asked to self-catheterise despite this being nearly physically impossible. Jamie has also had problems receiving care at home, which she prefers instead of attending in person. Jamie regularly informs healthcare providers of her history of sexual abuse and has found that many don’t know how to react to this disclosure. She advises providers to ask patients what they are most comfortable with to “accommodate the individual person”.
Jamie’s lifestyle has been significantly impacted by incontinence and surgical complications. She currently lives with chronic pain and finds that this keeps her from participating in activities she enjoys, like crafting. Jamie advises women in similar situations to seek out a second opinion and to make sure you have a GP who listens. She also recommends asking many questions and strategically using social media groups. Jamie hopes that physicians will believe women about their struggles with incontinence and mesh moving forward. She hopes that physicians will listen to patients more and treat them as an “individual, not a number”.
Jamie was sexually abused as a child, and this history has an impact on her when having pelvic examinations. She thinks it’s important to let healthcare professionals know, and for healthcare professionals to listen to patient preferences.
Jamie was sexually abused as a child, and this history has an impact on her when having pelvic examinations. She thinks it’s important to let healthcare professionals know, and for healthcare professionals to listen to patient preferences.
I think the first thing is, I think it’s important for the patient to tell the healthcare person but I think like before a nurse does a smear, I think that they should ask the patient what they’re comfortable with. You see for a lot think ‘oh you need to go slow, explain every step and talk really calmly to them’ but for some people like me, I’d prefer them to get on with, get it done, just do it the quickest speed you can safely but just get it done. Some people would probably prefer it to be slow like that, but I think there needs to be a conversation before anything’s done to sort of try what is best for you kind of thing and that isn’t asked. I’ve never been asked what is best for me, I’ve had to tell them.
Mostly they [healthcare professionals], they respect what I’ve said and they just get on with it. Some of them talk to me because they realise that talking out, I tell them I talk, so if it’s possible for them to talk while they’re doing what they’re doing then do that and like when I was having the ultrasound, the internal ultrasound there was a female care assistant with him and she was brilliant and she just talked to me, asked questions about my kids that sort of thing. So which is a distract-, for me that works but like I said the con-, there needs to be a conversation before anything is done to accommodate the individual person because we’re all different. Everyone who’s been abused deals with it differently.
Jamie wants patients to know they can ask for a second opinion. She recognises that healthcare professionals sometimes make mistakes but being honest about it is important.
Jamie wants patients to know they can ask for a second opinion. She recognises that healthcare professionals sometimes make mistakes but being honest about it is important.
Yeah, I think it could be helpful because I’m willing to fight for stuff and other people aren’t and they need to be aware of what their rights are. It’s like people don’t realise that the patient’s charter said you can get a second opinion, you don’t have to accept the first thing, the first surgeon says to you or the first doctor or nurse says to you, you can ask for someone else and a lot of people don’t realise that, you know and they have to realise also that they’re still people, they can make mistakes but it’s when that mistake is knowingly made that it becomes an issue.
Right.
But they’re still human, they’re not perfect, they’re not always all gonna get it right. This is why my surgery has not gone right because of the mesh because it wasn’t done right.