Jackie
Jackie had surgery for incontinence in 2010 which worked well. However, after several years, the mesh tape migrated through her vagina. She has now developed pain and has been diagnosed with fibromyalgia. She is waiting to hear about mesh removal.
Jackie is a retired nurse who now works as a counsellor. She lives with her husband and has two grown up children. She describes herself as White British.
Conditions/symptoms: urinary incontinence, mesh complications
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In 2010, Jackie decided to take up jogging to “get a little bit fitter” and found this difficult because she leaked urine. She consulted her GP and was referred to a gynaecologist who recommended “a tape” to “resolve the problem”. Jackie described her surgery as “absolutely amazing” and was “thrilled” that she no longer leaked. However, several years later Jackie started to experience pain like “barbed wire” during intercourse. For a while, Jackie put this down to “normal women’s things”, but it came to the point where she was “injuring” her husband during intercourse because the mesh “tape” had “migrated” through her vagina. This was confirmed by her GP, and Jackie was admitted to hospital for day surgery to cut away, and over sew, the protruding mesh.
From this point, Jackie began to experience “flitting pains” around her body which she feels were caused by an immune reaction to her mesh. She has been diagnosed with Fibromyalgia (a chronic pain condition) and has reached a point where her pain is “absolutely horrendous at times”. The pain keeps her awake at night and she can no longer do the things that she loves: “I don’t want to go out”, “I don’t want to have to dress up”; “We’ve got our dogs and love walking and can’t walk”. She has also had to reduce her work, and this has had a financial impact. Emotionally, this has taken its toll. Jackie feels like she is “just surviving”: “I’m not the person that I used to be”. Jackie feels guilty that she cannot fulfil her usual roles, and extremely sad that “the intimate side” of her relationship “has gone”.
Jackie has been attending online pain management sessions during Covid-19 pandemic and found this very supportive. She feels that the pain management team “understand” and “listen” to her. She also found it a “relief” to meet people with pain who understood what she is going through: this reassured her that she was “not going mad”. Jackie has experienced health professionals who are “absolutely brilliant” and those who are “rubbish”. She described a particularly upsetting encounter with a health professional who had a “blasé attitude” towards her, and who compared her to other patients. In contrast, Jackie has seen professionals who listen to her and who are “not the type [are] that have a prescription ready when you walk in”. She would like health professionals not to “treat everybody as one lump”: “we’re not just a Fibromyalgia; we’re not just a mesh”. At times, Jackie feels that she has been treated differently in healthcare because of her age and gender. She is concerned that women’s health problems are attributed to “hysteria in women” and that “if you’re a woman it must be something to do with your mental health”. She feels that urogynaecological problems are “marginalised” because they are seen as a “natural” result of childbirth. She also thinks that older people are “pushed to one side” in healthcare because their symptoms are seen as just a “legacy” of old age.
Jackie wishes that she had known about non-surgical treatments for incontinence and feels that a slower and more stepwise approach would be better. She is worried that her symptoms will get worse, and doesn’t want the mesh “invading” other organs, or to “end up with a colostomy”. She has been waiting to hear about surgery to remove the mesh and feels like she is living her life “in limbo”. Her advice to other women is to “do your research” and “to persevere”. She has found support in an online support group and would like other women to know that “they’re not on their own”.
Jackie was initially “thrilled to bits” with her mesh surgery because she was no longer incontinent. However, over time, the mesh broke through into her vagina making sex painful for her and her husband.
Jackie was initially “thrilled to bits” with her mesh surgery because she was no longer incontinent. However, over time, the mesh broke through into her vagina making sex painful for her and her husband.
I mean obviously having the initial surgery, I was absolutely over the moon because I wasn’t, I didn’t have the stress incontinence because, you know, it got to the, the point really where if we were in town together, me and my husband and he’d grab my arm and say, “Come get this, get across the road,” you know, between cars, I couldn’t, you know, I just, just couldn’t do it because I’d wee myself. So I was absolutely elated, you know, once I’ve recovered from the surgery and, and it was like, wow I was back to normal and then as time went by it was getting more uncomfortable to be intimate with my husband and it was getting more uncomfortable for me to sit down and I was thinking, I don’t understand what this is and this, this constant discomfort in the lower abdomen and I, I felt myself internally and could actually feel the, the mesh in several places and as I say, you know, I just felt, I thought ‘What on earth is going on here?’ I just didn’t understand because I’d only just heard about mesh problems at that time and then of course we couldn’t be intimate because it had, it had actually quite substantially injured my husband as well, you know, you can imagine sharp plastic is, is horrible and my mood just started to go down and down really because we, we couldn’t be intimate.
Jackie’s GP surgery asks patients to call first thing in the morning for an appointment. This is tricky for her because pain from both her mesh injury and fibromyalgia means she sleeps poorly and is exhausted in the mornings.
Jackie’s GP surgery asks patients to call first thing in the morning for an appointment. This is tricky for her because pain from both her mesh injury and fibromyalgia means she sleeps poorly and is exhausted in the mornings.
I mean it’s very much, you know, I mean if I rang up and asked for a, I mean you’ve got to ring up at eight o’clock of a morning to get an appointment. Well, I’m sorry but I’ve been awake half the night in pain sweating, you know, I’m not, I’m not up at 8 o’clock in the morning, the mornings are my worst, absolute worst so invariably I don’t get an appointment. You know, I have had the odd appointment where I’ve broke down on the phone and she’s put me in with one of the nurse practitioners which I’m happy about and they’re very supportive but it’s almost like they, they don’t have a, a lot of understanding of the, of the fibromyalgia or, or the mesh problems. I don’t, I genuinely don’t think they have enough knowledge and that’s not being critical, I don’t think they have that knowledge. They don’t know what to do, they don’t know where to send you.