Leeanne
Leeanne had mesh surgery to treat bladder prolapse and urinary incontinence. Since then, pain has been a constant part of Leeanne’s life. She says that “in a heartbeat” she would “turn the clock back” and not have the surgery.
Leeanne is a full-time carer for her father as well as her 9-year-old son. She is married. Her ethnicity is White British.
Conditions/symptoms: pelvic organ prolapse, urinary incontinence, mesh complications
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Following the traumatic birth of her son and the incorrect removal of a catheter in hospital, Leeanne experienced bladder prolapse and urinary incontinence: “from that point onwards, if I stood up my bladder would empty completely”. She flagged her symptoms at check-in baby clinics, saw her GP, and went on to have women’s physiotherapy and vaginal ring pessaries. When her son was about 4 years old, Leeanne had surgery which she had been told would “cure it”. The surgery involved a number of procedures: a front and back wall repair, implanting TVT, an episiotomy (a cut in the area between the vagina and anus, called the perineum, during childbirth), scar repair, laparoscopy for endometriosis (a condition where tissue similar to the lining of the uterus grows in other places, such as the ovaries and fallopian tubes), and female sterilisation. Afterwards, Leeanne had better bladder control for about 3 months but also experienced “a tremendous amount of pain”, and then her urinary incontinence returned. She went back to see her consultant a number of times, and was “told to go away and heal, for eight months at a time, that this was normal”. When Leeanne thinks back what it was like to have bladder prolapse and urinary incontinence before having surgery, it was “inconvenient” but “with hindsight, I would in a heartbeat turn the clock back to having that and only that”.
Since having mesh surgery five years ago, Leeanne has been in constant pain. She can “literally feel the path of the band …it’s like cheese wire, excruciating pain”. She gets additional waves of “very deep cramping pain” after having a wee or exercising. Leeanne takes pain relief and anti-inflammatory medicines, but these “never actually get to the root of what’s causing the pain” and have had side effects including gastric problems. Leeanne’s urinary incontinence is ongoing and it now also has “a terrible smell …like wet hay”. Because she sometimes struggles to fully empty her bladder, Leeanne needs to go to the toilet frequently and return a short while later to check again. She sometimes self-catheters. In addition, Leeanne has damage to her labia which has become very sensitive to chlorinated water; she often develops urinary tract infections (UTIs) after going to the swimming pool and has had repeated infections. Her GP suggested taking loratadine antihistamines, which has helped reduced the frequency of the UTIs. Leeanne also experiences a buzzing or tingling sensation that started in her pelvis but now affects other parts of her body too; whilst not painful, it is “very irritating”.
Leeanne is on a waiting list for mesh removal. There have been challenges with accessing this in the NHS, and her medical insurance won’t pay. She describes mesh removal as like getting “hair out of chewing gum”, and some surgeries risk further damage. As a full-time carer for her father and her son, Leeanne says she cannot take the risk of becoming “any more disabled myself, I just can’t do that at this time in my life”. She describes herself as “very fortunate” that she can cope with her current pain levels but is aware of the risks of delaying the surgery.
Leeanne has repeatedly been told by health professionals that her pain and other symptoms must be caused by something else: “it was my back, it was my hips, it was nerves in my tummy, … pelvic congestion syndrome, I had all my varicose veins stripped. He told me it was “referred pain from haemorrhoids”. She had a number of operations relating to these other suggested causes, but “still this little sharp line of pain persisted”. Leeanne has a diagnosis of fibromyalgia, though she doesn’t believe this is the case. She also experiences problems with her tendons and joints at particular points in her menstrual cycle, as well as other gynaecological conditions like endometriosis (a condition where tissue similar to the lining of the uterus grows in other places, such as the ovaries and fallopian tubes), fibroids (non-cancerous growths that develop in or around the uterus), and polycystic ovaries.
There has been a huge impact on Leeanne’s life, including her mental health; she says that without her family and friends, “I would just say, “No, this isn’t worth it,” and clock out”. Leeanne is part of a support group for those affected by mesh. She describes both the collective sense of validation the group gives for women who have been “fobbed off”, but also their anger that this has happened to so many people. At first, Leeanne “gave the benefit of the doubt to the implanting surgeons”, but she has since found out that she has no legal claim against the mesh manufacturer, as her surgery took place at a time when “the surgeons were in possession of all of the risks” but did not inform the manufacturers or patients.
Leeanne says “trust and honesty” from healthcare professionals is vital. She’s had some good experiences with nurses who have been kind and helped advocate for her. Leeanne says nurses are often an important source of information and support for patients, and that nurse-led forums can be a good way of “tapping into their knowledge”.
Compared to the problems Leeanne has had since mesh surgery in 2016, she wishes she could “turn the clock back to having that and having only that” in terms of her stress urinary incontinence and prolapse symptoms.
Compared to the problems Leeanne has had since mesh surgery in 2016, she wishes she could “turn the clock back to having that and having only that” in terms of her stress urinary incontinence and prolapse symptoms.
So, initially the impact is it’s inconvenient. But if you cough or sneeze you have to have a big, ugly granny pad [laughs]. It’s not very pleasant. But, with hindsight I would in a heartbeat turn the clock back to having that and having only that, because at least when I was incontinent then it didn’t smell, it didn’t-, you know, whereas now, just this awful smell all the time. It smells like, I don't know you’d describe it like wet hay. It’s a terrible smell. But you just can’t do anything to get rid of.
But sometimes if it, if it flares up, if I’ve drunk coffee or something like that then obviously it can get a lot worse. Or if I’ve been gardening or exercising but it, it’s a very deep cramping pain. The bladder just roars after it’s been emptied and they can find no explanation for that. But it’s something that’s existed since I had the TVT put in.
Leeanne now finds self-catheterising very convenient and appreciates the flexibility it gives her when she leaves the house.
Leeanne now finds self-catheterising very convenient and appreciates the flexibility it gives her when she leaves the house.
When I consulted privately with the urogynaecologist and they said I had interstitial cystitis and my bladder’s not fully emptying. And that I needed to use the self-catheterisation to prevent infection. Now I’ve actually found a balance that I don’t need to do it all the time. But that’s through trial and error and self-management. If I’m at home and I can go to the loo every half an hour and, and just make sure my bladder’s empty or if I’ve been to the loo, I go back again 20 minutes afterwards to make sure it’s empty. But if I’m out and about, then I’ll take them with me and then I need to because you don’t have the opportunity to go to the loo as much as you do at home and you’re not drinking as much as you do at home, so it’s self-management. But again, smashing little device, goes in your handbag, not really any longer than your hand. All in its self-contained packet, works really, really well. It’s a great thing. If you need it it’s fab. They’re very discreet and very effective.
Leeanne is on a waiting list to have her mesh removed. She worries that removal surgery won’t help much as “the damage is done”, and attempts to remove the mesh may cause more damage.
Leeanne is on a waiting list to have her mesh removed. She worries that removal surgery won’t help much as “the damage is done”, and attempts to remove the mesh may cause more damage.
I’m on a wait list for removal. I have, however, decided to postpone my removal because the surgeons who are removing are competent and I’m very fortunate to be on the list of one of those people who are trying so hard to help, however, the government promised that there would’ve been mesh centres set up nationwide to assist us. But unfortunately, the hospitals don’t have the resources to provide suitable aftercare. So, horrific stories coming out from the ladies who’ve had it removal, but then don’t get their catheters or their packs taken out or have their three month follow up appointment, etc. And the operation is such Russian roulette, the mesh is never designed to come out, it embeds with your own tissue. It’s described as taking fish bones out of chewing gum or hair out of chewing gum, that sort of level. One of the so-called mesh centre specialists said to me, “Look, the damage is done. To be quite frank, the damage is done. All we can do by going in is maybe, maybe it halts that damage at the level that you have now. It won’t resolve the pain. But we run the risk of doing far more damage,” and that is the case, it’s Russian roulette. Some ladies come away successfully and others come away with is it called a stoma bag, for the bowel and for the bladder because of what damage that’s been done.