Elisabeth
Elisabeth has a cystocele (prolapse of the bladder into the vagina) and rectocele (prolapse of the rectum into the vagina). In 2007 she had tension-free obturator tape (TVT-O) surgery and hysterectomy for incontinence and heavy periods. In the last 2-3 years she had developed severe pain which she think is related to her TVT-O surgery and is waiting for a consultation with a specialist to discuss ongoing treatment.
Elisabeth is a retired receptionist and team-leader. She lives with her husband and has two grown up children. She describes herself as White British.
Conditions/symptoms: pelvic organ prolapse, urinary incontinence, mesh complications
More about me...
Elisabeth had two “standard vaginal births” in the 1980s with “no complications”. However, in 2007 she found herself in “quite a pickle” because she was becoming “more and more incontinent”. The only way that she could get through the day without “embarrassing situations” was to wear pads. Her GP referred her for physiotherapy but things did not improve. This incontinence was having a significant effect on her life. She had regular check-ups with a gynaecologist over five years, but “nothing really changed”. Elisabeth felt like she was “in limbo”. During this time, she was also having very heavy periods and found that an intrauterine coil “helped enormously”. However, things got worse when it became impossible to re-fit the coil. Up until this point Elisabeth did not question her doctors: she describes herself as a women from an “era” that “completely trusted the healthcare system”. She felt “quite vulnerable” because words that she did not understand were being “bandied around” by health professionals.
Elisabeth got to the point that she needed to manually support her bowel prolapse to be able to go to the toilet. Her GP referred her to the “bowel department” for a posterior repair which had no lasting effect. Elisabeth felt that she could no longer go on like this. She was given the options of having Botox injections or a mesh “tape”, and in 2007 she had a tension-free obturator tape (TVT-O) surgery and a hysterectomy. After the surgery, Elisabeth found that she could “dance”, “run”, “cough” and “play with the kids”: she felt “absolutely amazing” and that her “life was back on track”. Then, 2-3 years ago Elisabeth felt a pull in her groin whilst playing tennis, and over a short time this developed into “excruciating” groin pain. After an examination by a physiotherapist, Elisabeth felt that the only explanation for the pain was that her mesh tape had “eroded”. She was referred to a urogynaecologist who listened to her with empathy: she describes a welcome “gentleness about this person”. The urogynaecologist referred her to a specialist centre to have an ultrasound scan, and Elisabeth now feels that she is “in their system” to discuss removal of the mesh tape.
Elisabeth is a positive person who usually lets nothing get her down, but now feels that she is like a “100 year old lady”. Elisabeth’s “excruciating” pain is only “manageable” through regular medication. The pain has also had an impact on her sex life and this has been a “real life changer” for her and her husband. She has found a “most wonderful support group” online, who have supported her “in the wilderness”.
Elisabeth has experienced “so many good years” as a result of her surgery, but she does not think that she was fully informed of potential complications of TVT-O surgery. Although Elisabeth has met “some amazing” and “wonderful” health professionals, she would ask them to “listen to that little person on the windy hilltop shouting”, to be “honest”, “accountable”, and to “say we’re sorry” for any unforeseen complications. She recognises that health professionals are “always doing their best at that time” but wonders if they are always “open minded” to the idea that things that were once “gold standard” may no longer be. She worries that healthcare professionals are “running on empty” under “incredibly difficult circumstances”. Her message to other people with incontinence is to “have a voice, don’t be scared to ask, try and do your research”.
A nurse told Elisabeth that having big babies had contributed to her developing a prolapse later in life.
A nurse told Elisabeth that having big babies had contributed to her developing a prolapse later in life.
It just yeah I know, it was very interesting when I was waiting to see the consultant when I was before I had my first operation for the rectocele and there was a lovely staff nurse in talking to me and it was before he came in and she was just chattering away and she was saying “So tell me how many babies do you have?” so I said “Oh I’ve had two” she said “And how big where they?” I said “Oh they were both nine pounder” I said “It was wonderful” I said “Because standard vaginal delivery absolutely no problems, a few stitches with my first” I said, “To be honest” I said “Shelling peas compared to a lot of my friends” and she was laughing and she said “Yes but you’ve got your problem now” and I said “Yes I have and that’s probably” she said “Well the new thinking is” and whether she was saying it I don’t know, she just said “ It’s the big babies that cause the problems, so you’ve had the brilliant birth but now the rectocele” the thinking is caused because the bigger the baby it contributes I’m not saying it causes, but it contributes to problems later in life.
Elisabeth underwent two posterior repairs. The first was “horrendous” and the second was “brilliant for six months” until it stopped working.
Elisabeth underwent two posterior repairs. The first was “horrendous” and the second was “brilliant for six months” until it stopped working.
I also had another rectocele operation to fix my prolapse and went into hospital, everything was absolutely fine, came round and I actually asked them if they’d done the operation because I had no pain I was just like when the nurse came to see me to make sure I was alright I said, “Have they done it?” and she said “Yes, why?” I said “Because I have no pain whatsoever” and I can remember her saying to me “Do you want pain?” and I said “No this is my second operation like this and the first one I was in agony, I was on my hands and knees on the floor” and I said “I was just, they gave me, I think they gave me morphine,” I said, “I was in such a pickle.” And she said “No it’s all been done, you’re absolutely fine”. So that was brilliant and that was brilliant for six months, six months was just wonderful and then it, it stopped working again and back came my rectocele so that was that, but in the meantime, I think I’d decided well I can live with that because also when I had my hysterectomy and I had my tape, life was just wonderful again.
For several years, Elisabeth, who had mesh surgery for incontinence, was really pleased to have her life “back on track”.
For several years, Elisabeth, who had mesh surgery for incontinence, was really pleased to have her life “back on track”.
And then the next thing I remember of course is waking up and somebody talking to me saying we’ve done it, we’ve done the tape we’ve also done the hysterectomy, we’ve left your ovaries and that was that. I think you sort of, they come and see you and you’re still groggy under anaesthetic and things but that was brilliant, so I came round and it was like alright okay here we go start my life, fantastic. I was discharged from hospital and then I had an awful urinary infection or infection where I had to go to the GP and go on antibiotics but that all soon sorted itself out and then that was wonderful. I felt absolutely amazing within, I mean there was the weeks of recovery and everything else but just felt amazing and suddenly my life was back on track, no awful periods, no incontinence it was great, I could dance, I could run, I could cough, I could play with the kids it was just unbelievable and to all intents and purposes an absolutely brilliant success.
Elisabeth had surgeries previously for prolapse and urinary incontinence, including mesh, but isn’t interested in having any more.
Elisabeth had surgeries previously for prolapse and urinary incontinence, including mesh, but isn’t interested in having any more.
I know I could feel inside that there was like stitches that had been there once and then again it was the same thing the second time and the, it was the registrar who did it the second time when I didn’t have any pain and he, he just said to me “If this doesn’t work we have other options.” Well it didn’t work after six months and I decided I would live with it because I just manage it, I manage my symptoms now and I manage them very well. And I don’t feel inclined to go and have another repair or anything at this stage in my life.
Elisabeth hopes that the damages from pelvic mesh will be acknowledged and that patients will be better supported to live well.
Elisabeth hopes that the damages from pelvic mesh will be acknowledged and that patients will be better supported to live well.
You know, you don’t want a huge, I mean I don’t, I don’t want someone to come along and say oh you can huge pay-outs or this that and the other, that’s not what it, I just want someone to try and put it right understand what I’m going through and for the people who want that, saying it’s not happening and it’s not, you know, it’s okay and it’s safe and it isn’t safe and I know some people will think it’s about £billion lawsuits or pay-outs or whatever, it’s not for me, all I want is someone to say there is a problem with it and we accept there’s a problem with it, but I suppose for them to do that it opens up the can of worms. I just want someone to be honest at the end of the day and say we’re sorry and help us live the rest of our lives to the best that we can. You know, I’d like to think that in five years’ time I’m still playing bowls and that, in fact five years’ time I’m not in a wheelchair because I can’t move because some people are, you know ow, some people have lost their jobs, some people are living in such agony they can’t get out of bed each day the depression, the, all the sides like that. That’s the last thing I want to do I want to still be able to live my life and I will do my best but we’re coming up against too many brick walls along the way.
Elisabeth is concerned that the NHS is “running on empty” and that healthcare professionals are doing their best under difficult circumstances.
Elisabeth is concerned that the NHS is “running on empty” and that healthcare professionals are doing their best under difficult circumstances.
Sometimes consultants seem too busy, they’ve got, they’ve, I mean you can understand it, maybe they’re running late, they’ve running an hour late because they’ve been operating in the morning, it’s over run, they’ve had to do this, they’ve had to do that and they’re running late. And wouldn’t it be wonderful if time was just there, whatever but it’s not and I don’t know how you can change a system that at the moment is, well I think it’s running on empty, I think that people are always doing their best at that time and you are, and if they’re not they shouldn’t be there. But I think they’re doing their best under incredibly difficult circumstances and the health service has become a pawn in the political game and I think it’s really, really sad, really sad because it is full of a lot of incredible people and I’m sure the majority start out and they want to change the world, they want everything to be wonderful, they want to mend people and that doesn’t always work. And I think the mental side of that for so many healthcare people must be horrendous. I think if I had a limitless pot of money, healthcare would come very high up in my place of wanting to divert it.
Elisabeth’s friends didn’t realise how much pain she was in until they saw her take half an hour to get out of a chair.
Elisabeth’s friends didn’t realise how much pain she was in until they saw her take half an hour to get out of a chair.
I think I started telling this story that I met some friends and I was sat last June and we were too busy talking and I didn’t stand up to, I didn’t finish the story off, it took me half an hour to get myself out of the chair, I could not stand up and it got to the point where we thought we were going to have to get, ring for an ambulance. And I just gently moved forwards and backwards on the chair and moved my legs, moved my knees and went side to side gently, gently moved and moved over a half hour period and then I managed to put the flat of my hands on the table and push myself up and once I was upright I could then move and get the pain to ease slowly but surely. And that was, my friends were just, they were mortified to see what I was going through because to all intents and purposes everybody just sees me as normal.
Yeah.
My family and my husband see me in my moments of agony and my friends didn’t understand and then my two good friends saw me like that and they went “Oh my goodness.” And it’s a funny old thing because people see you being normal, they see you go out for a walk, they see you play bowls my friends saw me play tennis and there can’t be anything wrong because look at you but underneath they don’t actually see the horrible side where you’re really struggling to keep that life going, it’s your husband and your family, they see all of that and they understand.