Mary Y
Mary Y started experiencing urinary incontinence years after her second child was born. She has undergone unsuccessful surgical procedures, including a hysterectomy and surgical mesh. Mary Y manages pain and nerve issues from surgical complications.
Mary Y is married and has two adult children. She is retired but used to work in healthcare and education. Mary Y’s ethnicity is White-British.
Conditions/symptoms: urinary incontinence, mesh complications
More about me...
Mary Y began to experience urinary incontinence after the birth of her second child. She lived with severe and “mortifying” incontinence during her children’s teenage years. Mary Y had frequent accidents, making it challenging to go about her daily life.
After looking online for solutions, Mary Y experimented with ways to tone her pelvic floor. She tried pelvic floor exercises and weights, but they “didn’t seem to make any difference whatsoever”. Mary Y’s GP referred her to a pelvic floor specialist, who told Mary Y she did not have a weak pelvic floor. Mary Y saw a urogynaecologist who conducted urodynamic testing. Although the staff were kind, Mary Y found the testing to be “dehumanising” as it made her privacy feel violated.
Mary Y was diagnosed with a collapsed bladder and underwent a Burch colposuspension. She had a suprapubic catheter installed. Mary Y tried her best to live with the catheter but found that it didn’t work well. She underwent a total hysterectomy a year later, which also failed to help with Mary Y’s incontinence. The hysterectomy caused Mary Y to enter menopause prematurely, which was “hard to deal with”.
Through her procedures, Mary Y’s doctors discovered that she was “riddled with endometriosis” (a condition where tissue similar to the lining of the uterus grows in other places, such as the ovaries and fallopian tubes). Mary Y was disappointed that this had not been discovered earlier. Knowing about her endometriosis could have “saved years and years of pain”. When her incontinence continued after the hysterectomy, Mary Y underwent collagen injections and had another suprapubic catheter installed. These treatments were similarly unsuccessful and resulted in a MRSA infection.
Shortly after, Mary Y underwent a transobturator tape procedure. In the first few years after having mesh inserted, her leakage decreased to a “manageable amount”. Eight years after the procedure, she developed pain in her groin and difficulty walking. Mary Y’s consultant was “very sceptical” and insisted that the mesh was not causing issues. He gave Mary Y a steroid injection that “only vaguely worked”.
As Mary Y’s symptoms continued, she looked into options for mesh removal. Mary Y met with a private surgeon, who told her that her case was too complicated based on past procedures and health conditions. This caused Mary Y to feel very upset. When the mesh began to poke out of her vagina, Mary Y returned to her consultant. After delays due to the Covid-19 pandemic and poor communication between hospitals, Mary Y received a mesh removal operation. Mary Y was unable to move her legs for the first few days and continues to have problems with leg mobility.
Mary Y’s illness has impacted her relationships with family and friends. She has noticed that chronic illness “gets boring for people” and that one gets “dropped out of the social list”. Now, Mary Y’s friendships “tend to be online” with other members of health support groups she has joined. Mary Y’s children have avoided discussing her health problems. She feels sad about not being able to see her grandchildren as much. Mary Y sometimes feels unsupported in her marriage, but she notes that her husband has issues on his mind.
In her spare time, Mary Y takes part in online courses and sews. Mary Y tries her best to focus on what her body can do rather than what it can’t. Making sure that she paces herself and is mindful of her body has helped her live more fully. She struggles with knowing that she needs more surgeries and worries it may all be a “downhill story”. Mary Y thinks that care could be improved if physicians used a “holistic manner” and became informed on the risks of surgical mesh. Mary Y says mesh “destroyed my life” and finds it “absolutely mad” that the technique was approved.
Mary Y explains how her teenage sons reacted to her urinary incontinence and subsequent surgery.
Mary Y explains how her teenage sons reacted to her urinary incontinence and subsequent surgery.
Well one issue is, you know, if one is incontinent and has got a very obviously wet backside, all down the legs as well and your children see it it’s learning how to deal with this. You know, they are mortified too, they don’t want to discuss it and, and I didn’t feel like it, at the time I didn’t want to discuss it either. Once I started to use pads that meant that I had to hide them because I, you know, we have a shared bathroom and you know, boys, teenage boys do not want to, to accept that their mother is totally incontinent because that’s what old people do. You know, it’s something that, incontinence it’s something that people make quite a lot of jokes about, I don’t find it funny at all as you can imagine but, you know, you can always hear those people saying, “I wet myself laughing,” or words to that effect. Well, you know, I bet they didn’t, and they wouldn’t like it if they did. So that sort of thing gets me annoyed actually but I can accept that people want to laugh about it but it’s no laughing matter when it’s your own problem.
Absolutely.
So my boys, well eventually, you know, they, the eldest went off to university and that was that and then and then the youngest one went to uni too so I didn’t have to deal with that anymore but once I started having surgery, I think the youngest one had returned home and he just didn’t wanna know, you know. You know, I was sitting there, you know, with a catheter bag or a suprapubic catheter, you know, for months on end and he didn’t want to have anything to do with it [upset] so he, that had to be dealt with.
Mary Y’s catheter caused her emotional and physical discomfort, which was improved by finding a style of device that worked better for her.
Mary Y’s catheter caused her emotional and physical discomfort, which was improved by finding a style of device that worked better for her.
There’s the problems you have dealing with having catheters whether it’s suprapubic or urinary and how to cope with the bags and me being me, I just went on the internet and I knew the different sort of bag manufacturers having been, worked in theatres and I looked at all their, their websites and I got samples so I could test them all out but normally patients wouldn’t get that, you know, they wouldn’t do that. So I, so, you know, having, you can get these leg bags which you strap to your leg and you get different lengths of catheter, you can have leg bags at the top of your leg or you can get a leg bag which is further down your leg and for men you can get ones for that you wrap down your tummy but no good for me because I’ve got a fat tummy anyway.
The issues were that when a bag gets full if it’s at the top of your leg it tends to pull and it tends to pull so it falls down your leg and then it can pull on your catheter which is a horrible feeling. You’ve got to deal with the fact that you’ve got a visible lump underneath your trousers because you can’t wear, you could wear skirts but I couldn’t, I can’t wear skirts so you have to deal with people seeing you and we know, you’re very conscious of the fact you’ve got this big lump of plastic with your wee inside it underneath your trousers so that’s quite hard to cope with. So this is why I spend so much time looking to see the different sorts of catheter that were out there to see if I could experiment and get one that was going to be right for me because at that point, I didn’t know whether I was going to be catheterised for life.
Although Mary Y had severe groin pain, her consultant had seemed sceptical and said that it couldn’t be due to the mesh.
Although Mary Y had severe groin pain, her consultant had seemed sceptical and said that it couldn’t be due to the mesh.
And actually for a couple of years with it, it partially worked, only partially so I would still leak but only to a manageable amount. So I went back after many, after about eight years I think, I went back to the consultant and I said was having a lot of pain in my groin. And the fact that I couldn’t stand for more than five to ten minutes without pain so walking any distance and going anywhere was always fraught with concerns for how I was going to manage should the pain start because I, once it started I needed to sit down and you can’t go and sit down when you’re on a walk or in the, especially in the rain and or in public places it, it can be very difficult to manage. So I went to the consultant and he was very sceptical. I don’t think he even believed me. I think he thought it was all in my head and I said, I feel, I thought it might have been the mesh,” and he said, “Well it can’t possibly be.”