Penny
Penny developed urinary incontinence after a hysterectomy. She had TVT mesh surgery in 2011 and quickly developed severe complications. In 2020, Penny had a stage 1 removal procedure. She is looking forward to her stage 2 removal in a few months.
Penny enjoys spending time with her husband. She used to work as a computer programmer but is now retired. Her ethnicity is White-British.
Conditions/symptoms: urinary incontinence, mesh complications
More about me...
Penny remembered experiencing heavy bleeding from her periods in her late 30’s. She had just recently married her husband. A gynaecologist thought that the bleeding was possibly due to a large fibroid the “size of an orange” and recommended she have a hysterectomy to stop the bleeding. Penny discussed how the gynaecologist “made the assumption that we wouldn’t have children” and that she “got carried along with his recommendation”. Then, “within about three weeks,” Penny said her “womb was gone”.
Penny developed stress urinary incontinence (SUI) after her hysterectomy, which bothered her enough to seek help. Her doctor recommended suspension surgery to help treat the SUI, but Penny did not want to go through another surgery since she was still healing from her hysterectomy. She used pads to manage her SUI.
After a while, Penny decided she could not keep dealing with her SUI. She remembers being “really leaky” and not being able to “do very much at all”. Penny met with a female gynaecologist who suggested Penny have TVT mesh surgery. The gynaecologist called it “this wonderful new technique” to “clear up stress incontinence”. Penny “took her word” and had the procedure in January 2011. Looking back, Penny calls this the “worst decision she had ever made”.
Penny recalled bleeding in the hours after her surgery and being sent “home with two wounds, exit wounds of the mesh” and “huge bruising”. She felt that she was not prepared for the post-operation pain or recovery. The worst part was that “within about two to three weeks of the TVT going in, [she] developed urgency”. Penny was devastated that the procedure designed to help manage her SUI did nothing to help it.
From 2011 until 2016, Penny went on “a whole series of visits to GPs” because her SUI continued and “never went away”. Penny discussed having “so many scans” and being “poked and prodded”, but her symptoms persisted, including having shooting pain down her legs while sitting or standing. Nobody could find the source of her pain and suffering. As a result, healthcare providers did not listen to her and said it was “in her head”.
Eventually, Penny got a referral to a male gynaecologist who found that the mesh had degraded and was cutting into her vagina. He recommended a trim procedure. Penny had a trim procedure in November 2016, nearly six years post-TVT surgery. The procedure gave her pain relief, but her incontinence continued.
Penny wanted to have the mesh entirely removed but the waiting list for the NHS was full. Her only option was to wait years or see a private provider. In 2020, Penny was able to have the first of two mesh removal surgeries by going private; it cost her approximately £12,000. Penny had to borrow money so that she could have this treatment. She is still paying it back but says that her care was a “great experience” and she was well looked after.
Penny is looking forward to having her second stage removal procedure in the upcoming months. She has to see a private provider for this procedure and borrow about £15,000 to cover the expenses. Penny believes borrowing the money is worth it because it will mean she can move forward from this “horrendous journey”. The doctor will remove the last bits of the mesh and do a colposuspension procedure simultaneously. Penny hopes that this will mean her pain and her SUI finally go away.
Penny credits her husband for being “very understanding” and supportive about her journey. She also values the information she has found online from support groups. Penny is “passionate about getting the message out to clinicians not to dismiss us when we come to them with random symptoms”. Penny shared that she is “angry” and she would “like to shout to the whole world what they’ve done to us”. She hopes that the use of mesh will be banned and encourages everyone to say no to having it inserted.
Penny is sympathetic to GPs but says that it’s essential that patients get the help they need and feel supported.
Penny is sympathetic to GPs but says that it’s essential that patients get the help they need and feel supported.
It’s a hard, hard job. And they are just general practitioners. And they can’t have the knowledge for everything. I don’t envy them. We’ve had friends who have been GPs. The abuse they put up with from some people. And I think if they’ve had a couple of bad patients and then you walk in, they’re still carrying that with them, which doesn’t help you. But they are human. I think they’ve got a really tough time. They’re sat in that room on their own and nobody to talk to really. It’s not a job I think I would fancy. I admire them for doing it, but nonetheless we do all need to be looked at individually and treated as individuals and really listened to and referred on, if that’s what we think we need. I guess they’re great at giving you tests but then when the test doesn’t prove anything it tends to be dropped, unless you push for the next stage, which I don’t always do either. You just don’t get that.
Penny received conflicting information on mesh removal from two consultants, which prompted her to do her own research.
Penny received conflicting information on mesh removal from two consultants, which prompted her to do her own research.
The NHS option was controversial because the lead person in the department was known to be pro-mesh, she’s very much an advocate of the mesh and she doesn’t buy into any of the papers that have been written over quite a number of years, about degradation of the mesh due to bacteria and infections within the body. So we had a long discussion about what they could offer and yes she confirmed that there was mesh that had eroded in the lower part of the vagina, it should come out, but she offered me an incision, and she also asked me if I had sex life still, and I said well no, not really, and I asked why she asked the question. And she said that depending on my answer as to how they would do the surgery, which I don’t understand, but I assume they would just excise or trim and then just sew up but, it didn’t seem like they were [coughs] but they were not, they were not a mesh removal centre. She said they never removed the mesh, they said it was too high risk there were no known benefits, and if I had the whole mesh removed I would have stress incontinence again.
And then I went and saw privately the other consultant who was doing a lot of work into the mesh and it’s complications and was very experienced in removal, and listened to everything that she had to say, and I put that in with what I’d already been reading clinical papers, and I had to constantly look up the long words to see what they actually meant, and I really quizzed her about how the proceedings go and I wanted a step by step account of how she did it. I wanted to know how many she had done, I wanted to know how many times she had severed a urethra or a bladder, how many times she had caused nerve damage and effectively caused issues walking and with quality of life and increased the pain.