Sophie

Age at interview: 52

Brief Outline:

Sophie has experienced stress urinary incontinence, pelvic organ prolapse, and complications from TVT mesh surgery to fix these conditions. She was also diagnosed with endometrial cancer in 2020.

Background:

Sophie is 52 years old. She is in a relationship and does not have children. She is currently on long-term sick leave from work due to her health concerns.

Conditions/symptoms: stress urinary incontinence, pelvic organ prolapse, mesh complications

More about me...

Sophie noticed that she was having difficulty with controlling her bladder and emptying her bowels in her mid-30s. This made it difficult to maintain a work schedule and leave the house, as she would need to spend up to an hour on the toilet. Later, she found that there was a bulge towards the back of her vagina that appeared when her bowels were full.

Sophie’s gynaecologist told her she had a rectocele (prolapse of the rectum into the vagina) that was likely caused by congenital weakness of her pelvic tissues. Sophie was sent to a colorectal surgeon, who diagnosed her with irritable bowel syndrome without any examination. She was prescribed an anal irrigation kit but found it took too much time and effort. Instead, she continued splinting (applying pressure to the back to the vagina) and found she was generally able to “learn to live my life with it and around it”. Sophie didn’t go to the GP because of “feeling embarrassed and ashamed” over the “taboo subject” of bowel and bladder issues.

Nearly ten years after her problems started, Sophie went to her GP about her stress incontinence. After several referrals, Sophie saw a urogynaecologist, who presented the singular option of tension-free vaginal tape (TVT) surgery. Sophie knew that there were “some concerns” around mesh but was reassured by the surgeon that he was highly skilled at the procedure. The surgeon made no mention of potential lifestyle changes, medication, or alternative surgical options. Sophie was assured that the procedure was the “gold standard” and “95% successful”. She was “so desperate” because the stress incontinence was “ruining” her life.

The initial outcome of Sophie’s TVT procedure was “really successful” and she felt like she was “95% cured”. She “went along quite happily” for around three years until the rectocele was causing significant problems. Sophie had more tests done and agreed to another surgery with the urogynaecologist who had done her TVT procedure. Closer to the date, she “chickened out of it and cancelled the surgery”. After this, she saw a private surgeon who told her that she’d likely made the right choice as rectocele mesh repair can have complications and require removal surgeries. Sophie found that she could manage her bowels through diet and glycerine suppositories.

In 2020, Sophie was diagnosed with endometrial cancer and had a hysterectomy to remove the cancerous tissue. The surgeon assured Sophie that the operation wouldn’t “go anywhere near” her TVT mesh. Weeks after her surgery, Sophie felt something that felt like stitches at the back of her vagina. She went to her GP who confirmed her suspicion that the mesh had eroded. Her surgeon was “very apologetic” and “couldn’t understand how it could have happened”. Sophie was sent to another urogynaecologist, who told her that she would need surgery to repair or remove the mesh. She was “absolutely devastated” by the added toll of TVT complications so soon after a cancer diagnosis.

Sophie is weighing her options for partial or full removal of the mesh. She is hesitant about getting a partial removal because of the potential need for a full removal later on. The mesh erosion means she is unable to have sexual intercourse, though she feels fortunate that her current pain level is fairly low. Sophie would like to have the surgery with an expert private surgeon, but the procedure would cost at least ten thousand pounds. She is currently awaiting further advice from the NHS.

Sophie believes that physicians need to be more transparent and honest, and that the “mesh scandal” has cost urogynaecologists a “lot of trust and respect”. The complications have left Sophie “cross and angry” at the surgeon who installed the mesh. She feels that “in hindsight he didn’t give me any choice” and that she likely wouldn’t have had the surgery if she had been fully informed. Sophie has been able to cope better through researching her conditions and “trying to take control where I can”. She is also trying to be pro-active by exercising and losing weight to “improve the outcomes from the factors that I’m in control of”.

Sophie had bowel symptoms which were originally diagnosed as irritable bowel syndrome, but she later discovered were related to having a rectocele (rectum prolapse into the vagina).

Because yeah, I would go to the loo, I’d have to strain and then wipe and never just felt like I’d emptied my bowels, and when I went to see the colorectal surgeon, he didn’t even examine me. He listened to me saying that I never felt I could empty my bowels and was, you know I’d have to go to the loo like multiple times in the morning to try and empty, and he diagnosed me, me with irritable bowel syndrome. 
 
Now in hindsight, I, it was, it never was, and it was never irritable bowel, it was, I’d had an obstructed you know what is called obstructed defecation because of the rectocele and it was because there was, you know the stool was trapped in the rectum and then just it was really hard to just physically eliminate it, so it was just always there. It wasn’t that I had this, you know sort of irritable bowel that was, you know just going to the loo multiple times a day. It was, you know I know now that it was definitely this sort of combination of sort of chronic constipation and obstructive defecation that I had.

 

Sophie had six years of better quality of life after mesh surgery, but now that the mesh had eroded, she faces further surgery to remove all or some of the mesh, with the chance that her incontinence will also come back.

But I’m definitely facing some kind of surgery and there’s also a 50% chance that any stress incontinence will return after that. So then there’s potential for another further surgery after that to fix that. So, it’s a horrific and devastating diagnosis really. And if I’d have known of all this before I had it done I would never have had the surgery, the TVT surgery in the first place, which is I think why I feel so angry about it because I was never offered any other choice. I didn’t know about the other options, surgical options, I was just told this is the solution, it’s fantastic, and away you go.
 
So, from going from that, like having my quality of life back for six years after what was probably up to ten years of losing my quality of life, because of stress incontinence, I’m now, I’m now facing major surgery. Much more major surgery than having a hysterectomy, to have a, to have a full removal, or even a partial removal like- the risks of that are not inconsequential, you know you can, you can go into the surgery. I, and I, again I feel a bit lucky because I’ve got this mesh erosion so basically, I’ve got prickly plastic sharp mesh sticking into my vagina, and if I go out for a walk it gets to a point where I can feel it, and it’s uncomfortable and things, but I haven’t got chronic pain. I haven’t got any, to my knowledge, any auto-immune conditions or any other physical, if you like, symptoms.

 

Sophie is deciding between a partial or full mesh removal, which come with accompanying sets of risks.

So, and the more extensive the surgery obviously the greater risks of I suppose nerve damage and chronic pain and yeah nerve damage which means then possibly affecting mobility and things. But then having a partial removal sometimes from what I understand a) it can come back and then you can end up with more erosion, you can end up with more pain, and so I’ve just at the moment feel like having a partial removal is probably just delaying the inevitable full removal. And once the mesh is cut, which in a way, mine is already because it’s eroded through the skin, so it must be already breaking up in some way. Then you know the plastic that it’s made from it seems to then sort of trigger this foreign body reaction in some people, and so I’m afraid that if I went down the route of having a partial removal that I might just, that might in itself might trigger a sort of auto-immune foreign body reaction and I might be worse off.