Sian first experienced urinary incontinence as a child but found that this naturally resolved itself. Following the traumatic delivery of her second child, Sian’s incontinence returned and was “far worse as it occurred both during the day and night”. A urologist told her that she likely had stress, urge, and urological incontinence. After having an unpleasant experience with medication, the urologist advised Sian to undergo surgery. She chose not to undergo the procedure because she felt the success rate of 55-65% was too low.
Sian met with a urogynaecologist who had previously treated her for pelvic inflammatory disease on a separate referral. This physician recommended a transobturator tape (TOT) mesh procedure as it would be 95% successful. Sian “desperately wanted the surgery done” because her incontinence was interfering with daily activities like playing with her children. On the scheduled day of the operation, another healthcare provider abruptly told Sian the surgery would be rescheduled because she had also had pelvic organ prolapse.
Upon later re-admission, Sian underwent surgery. She now considers this the “day my life changed for the worst”. Sian woke up from the surgery screaming in pain. After painkillers were administered, her surgeon came in and told her that the procedure had gone well. He also told Sian that he had done an extra repair that gave her a “designer vagina”. Sian was offended by his phrasing and alarmed to find that her rectum was now in a different position.
During her recovery, Sian’s pain worsened after developing an infection from a catheter being left in too long. Sian continued to experience incontinence but was told that her bladder just needed to “settle”. She went in to see her surgeon after experiencing extreme pain during sex. Her partner had also been injured by what her surgeon said was a stitch that would soon heal. This stitch is a “lump in the urethra still today”.
A GP later confirmed that Sian’s urethra had prolapsed. She was advised to have a suprapubic catheter inserted but worried about infection and jumping on a “quick fix”. Sian was also recommended Botox injections despite being allergic. She was referred to a specialist who believed that the TOT mesh had eroded. By the summer of 2020, Sian was experiencing fungal and bacterial infections and was informed that she needed to go back on the waiting list as her specialist had left. She is currently awaiting an assessment of mesh complications with the potential for full mesh removal.
Sian feels that the mesh has “literally robbed me of my life”. While she has undergone multiple intensive surgeries, the TOT stands out as making her feel “traumatised” and staying “crystal clear” in her memory. As a result of the chronic pain, Sian had to quit her job and requires two care assistants “just to get through the day”. Sian continues to experience chronic pain and urinary incontinence. She hopes that mesh removal will reduce her pain but is under “no illusions” about getting her old life back. Currently, she manages her condition by monitoring her water intake and catheterising. She has also found some relief through acupuncture and quitting caffeine.
Many of Sian’s relationships have also suffered because of her condition. Sian feels she has “lost a daughter through it” as the strain of her ill health contributed substantially to her daughter ceasing contact. Friendships have also become more difficult to upkeep, and Sian feels that people would rather avoid her than address her health problems. While she and her partner still have a loving relationship, complications of mesh repair have been “disastrous” to their sex life.
Sian emphasises the need for physicians to be honest with patients and take seriously their promise to “first do no harm”. She also notes the importance of rebuilding trust. She hopes that Welsh women who underwent mesh procedures are given “recognition, apology, or financial redress” that has been lacking. Sian advises seeking a second opinion and keeping records of procedures and symptoms to women in similar situations.
Sian’s relationship has changed as she’s been unable to have sex and her husband takes on a caring role. She appreciates that he has been kind and supportive.
Sian’s relationship has changed as she’s been unable to have sex and her husband takes on a caring role. She appreciates that he has been kind and supportive.
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The sexual relationship has, well its disastrous [laughs]. It’s been a state. We’ve had to forego a sexual relationship really with the ones you love most. He’s really tired most of the time. He’s coming home, he works full-time, comes home from work and he cooks the food and takes the dog out, washes the dishes sometimes if I’ve had an accident. I’m not allowed in the shower on my own, ‘cos I’ve got epilepsy. I gotta sing. You gotta make sure he’s listening to me sing. ‘Cos obviously, I still want a bit of privacy as well. Do you know what I mean? So, you know, it’s like coping strategies that we put into place in the home. But he’s having to care when he comes home from work. So, it’s difficult for him, but he’s one of the kindest men, a total contrast to my ex-husband.
Sian, who is in a wheelchair following mesh surgery, says her daughter “suffered greatly” because she could not be the mum she wanted to be for her when she was a teenager.
Sian, who is in a wheelchair following mesh surgery, says her daughter “suffered greatly” because she could not be the mum she wanted to be for her when she was a teenager.
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But my relationship with my eldest daughter, it was just broken beyond repair. I think it just suffered greatly. We’re no longer in contact. I think it was because you know like when children have their friends over, ‘cos I mean she was a teenager then. When they have friends over for food, you know, and there’s normally the mother that’s making the food or you know, you’re taking them to a concert or they go for a picnic in the park, you know, and you do, you’re shopping for clothes with them; she couldn't do that with me. And I’ll always remember she used to get on the school bus and pretend to live in my friend’s house opposite because she didn't want-, no, I’ll say it, she was having, she was ashamed of having a disabled mam like me. And I think it just grew into resentment on her part, you know. What can you do? You know, there was a lot of times I was in bed because of the pain, you know, I can’t blame her. And she went down a route of acting out. I can’t blame her for that either because I wasn’t really present. I tried to be as much as I possibly could, but my health wouldn't allow because it’d deteriorated.
Well, I have to have CBT counselling for about three years I was, when people use the term heart-broken I think they use it too casually. And because for the first time in my life, even though I had gone through a divorce, but for the first time in my life I knew what the word meant.
Sian found that she got more infections when she got dehydrated.
Sian found that she got more infections when she got dehydrated.
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I tried the treatment, I tried to do myself and I tried not drinking much which was a big mistake. I got dehydrated and had more infections. I tried using wet wipes after wetting myself and got chaffed or chafe or how you comment it. I tried showering every time I wet myself, which was near enough impossible because I’d done on a 24 hour takeover. I tried wearing two pads, but the stickiness caught the inside of my leg. I had to use cream because it became red raw. Now I think at least three pints of fluids and I’ve no caffeine at all which does help a little. I was actually told to do this although it’s not so much, I was actually told by the uro- urologist to do this because I was not drinking enough and actually creating a breeding ground for the bacteria for more infections that I needed to flush them out. And to be honest with you, it does help.
Sian had a “wonderful life” before her mesh surgery but feels she has now lost her independence and her dream of becoming a social worker.
Sian had a “wonderful life” before her mesh surgery but feels she has now lost her independence and her dream of becoming a social worker.
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I just sort of drew back on what, touched upon really, basically, yeah about being promised 90-95% success rate on urinary incontinence. But instead I got 90-95% of my independence taken away. I rely on personal assistance for social and personal care and a primary and secondary carer just to get through the day. I had a dream of being a social worker and I had a place awarded to do my MA in social work at [university]. And now I have a social worker for my disabilities. You know, It’s quite sad.
I will say that, I had, I don’t know whether it will become under the last thing we were talking about, the participation in everyday life. I think it would. There was one thing I missed out and that was the loss of friends. Before mesh, I was a very outgoing person. I had lots of friends. And I, when I was married to my ex-husband, I had a lot of sister-in-laws who obviously had a lot of sister-in-laws because they were one of seven. There was always big groups of us. We all done things together. So had a really excellent social life and travelled abroad, you know, I had a wonderful life.
Sian is “optimistic” that mesh removal surgery will help her symptoms but doubts that it will fix everything.
Sian is “optimistic” that mesh removal surgery will help her symptoms but doubts that it will fix everything.
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I am optimistic, but I’m also realistic on my chances of having a full recovery. And I’m under no illusions that I will get my life back to how it once was because I don’t really much want that to happen. I’m looking forward to the outcome where I’m in less pain. I have been made aware that my incontinence could be a lot worse. And I have replied to that as, “I personally don’t care if the incontinence is a lot worse. I can live with that. But I can’t live with the level of pain I’m in now.” I am feeling optimistic that because this long arduous journey is about to come to an end. That’s how I feel. And have closure as to why over these many years I’ve been so unwell with fatigue, allergies, great pain, and so much more. There’s been a lot of unexplained symptoms I’ve had. Although some can be attributed to things such as osteoarthritis and other conditions that I’ve got, some cannot be.
Once I’ve completed the next phase of finding out this, getting this hopefully sorted. I can put it down, put to rest, live with what I gotta live with and get on with the next chapter and that’s how I sort of compartmentalise it. So, it’s healthy for me. I might not work for anybody else, but it works for me.
Sian wants healthcare professionals to be honest and give patients all the information about potential problems from mesh surgery. She adds, “above all else, first do no harm”.
Sian wants healthcare professionals to be honest and give patients all the information about potential problems from mesh surgery. She adds, “above all else, first do no harm”.
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A message to the healthcare providers, oh, I could cringe at this. Actually for many years you have been underfunded and overworked and treated poorly. I know the system is at breaking point and in parts broken, but I implore you show all patients the pattern. Give them as much information on diagnosis as possible. If you don’t already, send out a copy of treatment plans discussed or alternatives if your time is limited. Follow up, do your research on medical devices because there are thousands of us suffering greatly today because of vaginal mesh. It’s a big ask because your jobs can often feel thankless and relentless. It will help patients tremendously. When an error occurs, note it and own it. Apologising goes a long way in building bridges and the patient will feel that you are honest. Trust maybe only five letters long, but it’s the biggest word in a patient’s voca-, in a patient’s dictionary. It resides on the letterhead of the building you work in and should be up there with the excellent care you are known to provide. And remember, above all else, first do no harm.
