Gwen

Age at interview: 72

Brief Outline:

Gwen has had recurrent urinary tract infections (UTIs) since age 17. She has also dealt with endometriosis (a condition where tissue similar to the lining of the uterus grows in other places, such as the ovaries and fallopian tubes), pelvic organ prolapse, and irritable bladder syndrome.

Background:

Gwen is 72 years old. She is married and has two adult children. Gwen is a retired nurse and describes herself as White British.

Conditions: recurrent UTI, pelvic organ prolapse

More about me...

Gwen has been struggling with on and off urinary tract infections (UTIs) since the age of 17, with the infections becoming a “regular feature” in her life. In her early 40s, she began to experience severe pelvic pain, heavy periods, and urinary urgency which got “in the way of day-to-day life”. At this point, Gwen thought that she had cancer and that she “was going to die”. She did not tell anyone in her life to avoid upsetting them. Eventually, her husband convinced her to go see a doctor after a holiday spent bed-bound from discomfort.

Gwen was diagnosed with endometriosis (a condition where tissue similar to the lining of the uterus grows in other places, such as the ovaries and fallopian tubes) and pelvic organ prolapse. She was informed that she would need pelvic floor repair surgery and was sent for a uro-dynamics assessment. Gwen found the assessment to be “scarring” as the nurse told her that “I really ought to accept that I was now incontinent”. An explanation from a doctor was similarly unpleasant, as she was “shocked at the imagery” he used as he described her bladder in terms of fat and gristle.

Gwen was admitted for a pelvic floor repair and hysterectomy (an operation to remove her uterus). Gwen found herself crying a lot after the surgery. Upon speaking to a nurse, she learned that the surgeon had also removed her ovaries. This was done without Gwen’s consent. Gwen said this felt “like I was abused”. After her ovaries were removed, Gwen no longer experienced sexual desire, which was a “devastating blow” and made her feel as though she “wasn’t the woman I wanted to be”. This placed strain on her marriage, although she and her husband have managed to adapt and carry on with a loving relationship.

While recovering from her surgery, Gwen contracted a severe cold. The coughing and sneezing caused damage to her pelvic floor repair surgery, requiring an additional surgery. This time, her physician recommended installing vaginal mesh. Gwen experienced an “awful lot of trouble” following the mesh procedure and found she no longer had control over her bladder. She underwent bladder stretching procedures but did not find these helpful. Gwen managed to retrain her bladder by only allowing herself to use the toilet at increasingly longer intervals.

A few years later, Gwen was facing a stressful period of family issues, which she believes triggered more UTIs. She met with an urologist, who diagnosed her with irritable bladder syndrome and prescribed her amitriptyline. Gwen felt like a “zombie” on the medication and felt unsafe for her job. She stopped taking the tablets but remained grateful that her urologist had been sympathetic and listened to her.

While incapacitated from a UTI on a holiday, Gwen saw a television programme about complications from vaginal mesh. When she was back home, Gwen asked her GP if this could be the source of her problems. Her GP suggested that they “not leave any stone unturned”. Gwen was referred to a renal (relating to kidneys) specialist, then an urogynaecology clinic, then a gynaecologist. Gwen found that these providers consistently thought she was “wasting” their time.

At this point, Gwen felt “fed up” and tried to continue with antibiotics. She found a week’s supply more effective than the standard three-day course. The next time she saw a specialist, it was recommended that she start long-term, low dose antibiotics and undergo bladder instillations. Gwen objected to the instillations based on not being able to find research evidence to suggest these were an effective treatment.

During her recurrent UTIs, Gwen experienced added discomfort and “felt like my insides were dropping out”. Upon seeing the doctor, Gwen was told that she had a rectocele (weakening of the wall between the rectum and the vagina), which is a type of pelvic organ prolapse. When seeking medical care, her rectocele was repeatedly dismissed as “not life threatening” until she met with a more “understanding” doctor. Since then, she has been taking laxatives and finds that her bowel issues have been more manageable.

Gwen continues to struggle with physicians not wanting to keep her on long-term antibiotics because of the risk of antibiotic resistance. This has placed her in a cycle of weaning off antibiotics, being in “agony” from her UTI’s returning, and being put back on antibiotic courses. Her situation has been especially stressful during the Covid-19 pandemic, as it is difficult to access care when they cut off her prescriptions.

Reflecting on her experience, Gwen feels that the constant anxiety of recurrent UTIs “takes all the joy out of living”. She regrets that she has “missed out on such a lot of things” from being unwell. Gwen hopes that physicians will be more understanding towards the seriousness of UTIs and their effects on individuals in the future.

Gwen had a “dreadful” experience of urodynamic testing.

He sent me to another hospital for the uro-dynamics assessment prior to surgery, because he said he didn’t have that facility locally. And I think that the whole experience scarred me to be honest, because I got sent into a little room to change into one of the hospital gowns, you know that don’t fasten up at the back. And then I had to walk from the changing room in that across a busy corridor into this clinic. And there were two very young nurses there, doing this you know drinking this and jumping up and down and measuring how much you were wetting yourself. It was dreadful. And then at the end of it they decided, well what they said to me was that I really ought to accept that I was now incontinent and instead of using sanitary pads to cope with it, I should now go to a supermarket and buy some incontinence pads. I don’t know why they thought I was there; I don’t think they had the whole picture of me but this was part of an assessment. I was 43 years old. And I, I’m choking now thinking about it, and I came, came out of there and I just thought, ‘I don’t believe this.’

 

Gwen’s GP flagged up concerns that she had been on antibiotics for too long.

So that’s how I was going on until maybe two or three years ago I got called into the surgery by another GP, and he said he had grave concerns about me being on these antibiotics and wanted to stop prescribing them. And I think I went into shock because I’d been, all the time I was having those low dose antibiotics I was having no UTI’s and I thought they’re taking away the only thing that’s helped me. And he, you know he explained about becoming resistant to antibiotics and I kept saying, actually if it shortens my life I’m not bothered, it’s quality of life really that I’m interested in. Well he said “I can’t really let you carry on, so you’re gonna have to wean off them.” He said, “But I promise you I won’t leave you ever in pain.” So I thought, “Well I’ll just see how this works.”

 

Following a hysterectomy and pelvic floor repair, Gwen did not realise that her ovaries had been removed during a hysterectomy and pelvic floor repair. She felt “robbed” when her sex drive lowered significantly.

So I was admitted then for a hysterectomy and a pelvic floor repair. And after the surgery I was, there was a lot of packing inside, and a catheter. And I was sent home with that in. Oh no, let me get back before that. Whilst I was in there I got an infection, and I was on intravenous antibiotics for a while, yeah, so I was on these intravenous antibiotics, so I started feeling better from, that but I was crying, I was just crying, and I didn’t know why, and I felt so stupid. There were tears just [motions to face and made wiping gesture] and one nurse came in and said, “What’s the matter?” And I said, “I don’t know. I really don’t know. I’m just, I just don’t know.” And she said, “Well, mm, it might be to do you know with your hormones being all upset, you know with having your ovaries taken away.” And I said, “I haven’t had my ovaries taken away.” She said, “Are you sure?” I said, “Well I haven’t signed to have my ovaries taken away, and nobody has discussed that with me, it was a hysterectomy and a pelvic floor repair, nobody mentioned anything about ovaries.” She said, “Well you must’ve signed for that.” And I said, “I don’t think I have.” She said, “I’ll go and check.” And she came back and she said, “You didn’t sign for it, but they’ve been taken”. Well, if, if the doctor had said to me, “I think it’s a bit, we might as well take your ovaries,” I’d have probably said, “Yeah, fine no problem.” But because it had been taken and not even been informed of it, it was just no, there was no informed consent there, let me tell you, so that really floored me. The doctor did come and his response, he never actually discussed with me the fact that he’d taken them, he just patted my hand and said, “A little bit of HRT will put all this right.”
 
Now the consequences of all this hysterectomy and everything else, which was another devastating blow, for a woman in her mid-forties was that my sex drive went. I had no interest in sex whatsoever. It’s not that I didn’t like it just never entered in my head. And I did discuss that with my GP, and he gave me some male hormone implants, testosterone implants, made not one bit of difference. So I mean this put a bit of a strain on the relationship with my husband, I felt, I felt like they’d robbed me of a life, when they wanted to do the hysterectomy they promised me that I would be like a new woman. Well I was a new woman, but it wasn’t the woman I wanted to be and I felt like I’d been robbed.
 

 

Gwen worries about her incontinence getting worse and being unable to communicate her discomfort as she gets older.

And it’s impacted on my life since I was 17 years old and I’m hoping that it don’t get much worse, but I am approaching, or, not, older age cos I know I’m old now but older age, and it’s a big worry for me, incontinence, and urinary and faecal incontinence. And I think to myself well I don’t, I’m not looking forward to having to go in a home, how do I explain to somebody that I’m having a urinary tract infection if I’m going a bit gaga? The thought of being faecally incontinent and having to be cleaned up and, and wear pads and everything else, it’s a horrible thought. Horrible thought. I’m hoping they’ve brought euthanasia in by then. Yeah, don’t want that. So yeah, yeah, urine has been in my mind a long time.

 

Gwen’s GP was supportive and made referrals for her. However, Gwen had disappointing experiences with specialists and was “getting weary of it”.

So when I came back I went to see my GP and I said, “Do you think this could possibly be the route of my problems?” And she said, “I think you’ve had this long enough; I think we have to try and sort out what’s going on. And we’ll , we’ll not leave any stone unturned until we find it.” And she said, “, perhaps we ought to just go back to the renal issues let’s start there and then we’ll take it from there and we’ll try every department until we find out who’s best suited to it.”
 
So she referred me back to the renal department who refused to see me until she kicked up a fuss and then they finally saw me and they were so angry with me, so angry, you can’t, I could feel the anger. And that doctor decided that I was wasting his time and there was nothing wrong with me other than- it was constipation, and I should take Fybogel. Huh, so I got sent off with that. So fair enough, then my good GP said, “Well that’s okay, you know, don’t get upset about it. He might have had a bad day, and it is only the, you know the first port of call. I’m going to refer you to a nurse led uro-gynaecologic clinic.” So that’s what she did, and I went there and I was scanned and seen by this nurse who felt that I should be seen next by a gynaecologist.
 
No, I had to go, I had to go into hospital for another one of those exploratory things, done by this gynaecologist, yes. So I went there. Well he was angry with me as well, he thought I was wasting his time, he said that my pain was the result, was deferred pain from a road traffic accident that I’d been involved in, in 1979. In which I’d fractured my spine. And you know he understood that, because he’d hurt his foot on the golf course, but he experienced the pain in his neck. And I just, sat there, and I thought you’re crazy. And after that, you know they have this group of people like that come with them, trainee doctors, and after, one of them came back and said, “Are you alright?” I said, “I don’t think so.” He said, “I think you should go back to your GP and discuss with her,” I said, “Well I think that I will.” So that’s what I did. So from there I was getting a bit fed up. I just thought I’ve had enough of this, I was getting weary of it to be honest.