Experiences of Covid-19 and Intensive Care

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.

Surgery is a really complicated discussion, and that’s for a number of reasons. First of all, surgery can have complications, and if you have a complication clearly that can affect your quality of life. And then there are a huge range of surgical options for women with vaginal prolapse. We can go through the vagina, we can go through the tummy. It can involve a hysterectomy, it can involve them keeping their womb. It can use stitches, it can use mesh.

So the surgical options that you’ll be offered will really depend on the type of prolapse you have, what your expectations are, what your surgeon is able to offer you comfortable offer, offer you think is best. And we’ve got some great tools and decision aids that can help guide you into in terms of the type of surgery. The last thing I’ll mention is surgery for bowel problems. So that’s a difficult area, we’ll often involve our colorectal colleagues with that. There are treatments for bowel prolapse what’s called rectal prolapse that are done by colorectal surgeons, but we may also offer you vaginal surgery for vaginal bowel prolapse as well. So those would be the sorts of things that we’d often discuss with patients.

So one of the things that people often talk about if they’ve exhausted conservative management, they’ve tried therapies and their thinking about surgery, is the impact that surgery will have on life. And that’s particularly difficult if you’ve got a caring role for either children or a partner or a relative, it can have impact on work. For most forms of prolapse surgery there is a relatively substantial recovery. And that’s because we’re generally restoring quite a sensitive part of the body, and trying to restore an anatomical deformity, it involves an element of surgery. So for most people recovering from, from surgery you’ll often be in hospital for a day or two, you’ll often be reasonably sore for a couple of weeks and for most forms of prolapse incontinence surgery for about six weeks you’ll be advised not to drive, not to have intercourse, to avoid heavy lifting, and that can be very difficult if that’s part of your day to day or work. And for some people perhaps because they’re older, more frail, they have other medical complexities, having surgery for prolapse incontinence can take months to get better and recover from. So it’s important you think and you ask your clinician how long can you expect to be recovering so that you can help plan your life.

But the consequences, you know, and obviously you’ve got to, you’ve got to, the difficult thing I had was not being able to do anything. You know you have to lie there, you have to rest, you can’t be walking around, you know you have got to allow your body to recover, and you know, and I found that really, really, really hard, actually resting and not doing nothing. And for those people what have, I mean for me, to a degree, I was able to because you know my children are that bit older, but if people are having it and they’ve got young children, you know it would be, and you know not being able to pick them up, not being, you know I couldn’t pick my grandson up.
 
You know it’s, it’s, it’s really hard, and not, you know they say about a kettle and things like that you know, no weight. Because you don’t realise how much you use this core, this core section for, you know what it is, you know just lifting up a kettle, you don’t realise. And you, and you couldn’t even do that in the first week or few weeks. And you know, you know things like that. So, I think from that perspective it’s, it’s really hard, and not being able to drive, no, that, that’s by the by. But no, it’s, it’s not being able to anything really, even the simple things what you take for granted. And it’s, I’d say it took months and months really, now, to fully recover.

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.

So it might be that you’ve had prolapse or incontinence surgery that’s involved mesh, or you think you’ve involved it, it’s involved mesh. Now for the vast majority of patients that have had mesh augmented, so prolapse or incontinence surgery that involves mesh, the vast majority are well. The vast majority don’t have problems, and the vast majority get improvement. But sadly because it was used so commonly and still is often used, there are a significant proportion of women that have had really life altering or devastating problems from the use of mesh.

The types of problems that mesh may cause commonly include pain, it might cause chronic infection, it might cause discharge, the mesh may move or migrate away from where it was placed into surrounding structures like the bladder or the bowel. So, either because of worry about problems or having an overt problem like pain or mesh moving, extruding into another organ you may have a conversation with your GP, gynaecologist or a specialist mesh removal surgery, surgeon, about removing mesh. The decision to remove mesh sometimes is very simple or easy. So if for example mesh is sat in your bladder or your bowels, and is causing them really significant problems that might be quite an easy decision for you to make with your clinician. But often it’s more complicated. So you might not have any symptoms from the mesh being in the wrong place. There might be a worry that your pain is related to other aspects of your health and wellbeing, or it might be that where the mesh is placed there is a worry about mesh removal causing significant other complications. NICE, the National Institute for Health and Care Excellence, does have a decision aid for women thinking about removal of mesh that was used for either prolapse or incontinence. So I would encourage people thinking about mesh removal first of all to use the NICE decision aids and to have a chat with their clinician. I think it’s really important that if patients feel that they’re not getting the answer they want, or they’re not getting their concerns taken seriously that they ask to be referred to a specialist, and if their concerns aren’t being taken seriously by their specialist, they ask to be referred to a mesh centre. So NHS England has commissioned a number of centres in the UK, across the UK, to be available for women who have had a mesh augmented prolapse surgery to discuss the pros and cons of removal. Mostly that would be for patients that are having problems, but for some people it’ll be because of a concern or worry about problems. Hopefully that environment and those clinicians will help form a relationship with you to discuss the problems or concerns you’re having, to discuss the options. They’ll often involve other specialists like pain specialists, physiotherapists, bowel specialists and bladder specialists to come to an agreement as to what your options may be. If they’re talking about removal, there’ll be a number of important discussions that they have with you. The first would be what the potential risks are: is there a risk of damaging things? Is there a risk of needing a stoma or a bag? Is there a risk of injuring your bladder and needing a catheter? And for a lot of the mesh that’s been put in, those were quite significant or real risks. One of the biggest difficulties we have is talking about pain and mesh. So if mesh appears to be in the right location but someone has pain, there’ll be a number of non-surgical options. If you’re talking about mesh removal it’s very difficult, we still don’t really know how likely you are to get benefit, whether that benefit is going to be permanent, and whether it’s actually the mesh that’s causing the pain or the mesh surgery. There’s a huge number of patients that will get pain with mesh, but that pain maybe many different causes, and so really you want to work with your specialist or work out whether we really think that mesh removal is likely to give you benefit. And when you’re having that conversation, they’ll discuss removing a bit of the mesh, all of the mesh, doing another procedure at the same time. So for example if you’ve had an incontinence mesh device like a sling or TVT, there’s a significant proportion that, there’s a significant likelihood that your incontinence will come back so they may discuss doing another incontinence procedure at the same time. And I think really the focus, I think the main message that I want to say to patients considering mesh removal surgery is that this is a really individualised decision. It’s about you and what’s affecting you, and coming together with your clinicians, your family and potentially support groups, there’s lots of online support groups for patients with mesh problems, but coming up with an individualised plan because what you may have read about or heard from someone else may not apply for you or to you.

I mean obviously having the initial surgery, I was absolutely over the moon because I wasn’t, I didn’t have the stress incontinence because, you know, it got to the, the point really where if we were in town together, me and my husband and he’d grab my arm and say, “Come get this, get across the road,” you know, between cars, I couldn’t, you know, I just, just couldn’t do it because I’d wee myself. So I was absolutely elated, you know, once I’ve recovered from the surgery and, and it was like, wow I was back to normal and then as time went by it was getting more uncomfortable to be intimate with my husband and it was getting more uncomfortable for me to sit down and I was thinking, I don’t understand what this is and this, this constant discomfort in the lower abdomen and I, I felt myself internally and could actually feel the, the mesh in several places and as I say, you know, I just felt, I thought ‘What on earth is going on here?’ I just didn’t understand because I’d only just heard about mesh problems at that time and then of course we couldn’t be intimate because it had, it had actually quite substantially injured my husband as well, you know, you can imagine sharp plastic is, is horrible and my mood just started to go down and down really because we, we couldn’t be intimate.

And actually for a couple of years with it, it partially worked, only partially so I would still leak but only to a manageable amount. So I went back after many, after about eight years I think, I went back to the consultant and I said was having a lot of pain in my groin. And the fact that I couldn’t stand for more than five to ten minutes without pain so walking any distance and going anywhere was always fraught with concerns for how I was going to manage should the pain start because I, once it started I needed to sit down and you can’t go and sit down when you’re on a walk or in the, especially in the rain and or in public places it, it can be very difficult to manage. So I went to the consultant and he was very sceptical. I don’t think he even believed me. I think he thought it was all in my head and I said, I feel, I thought it might have been the mesh,” and he said, “Well it can’t possibly be.”

It’s too much, it’s like you’ve got your pain aspect that you’re constantly in pain and that never goes away and you’re, you’re just taking medication all the time. The bladder uh, constantly living around your bladder problem, like going to the toilet, how long you’re on the toilet. It’s just all of it, the hernia. I don’t know it’s all of it. It’s all of it [interruption] just cannot, there’s a whole mess of medical things that your life is around, becomes medical, like instead of you having a life, it becomes a ‘medical life’, a medical problem, you are a ‘medical problem’ instead of having your own life anymore. They’ve just taken it away; it’s gone because of just the one procedure. But I can’t, I just don’t, you know, just I think the mental health, you know, its psychologically having to deal with the fact that you’re going to get worse. It’s scary, you know, as I say it’s frightening. That’s me, I’m frightened for the future, I’m frightened for if they take it out. I’m frightened if they don’t take it out so, you know, you don’t know which way to go and there isn’t any help in it, you know, they don’t, I think they’re trying to cut their lists in the mesh centres by trying to put off patients from having it removed now so they’re saying, you know, you’ll be better off learning to live with pain which is why they’re offering the psychological help in the pain management side because they want patients to learn to mentally live with it but I don’t see that as a long term solution to be honest.

The psychological issues that, that come with anything, any health and, and we all know that when you go in for surgery there’s always risks, right. But most of those risks are told to you, none of the risks were ever mentioned to us. But yet they knew what the risks were, it’s on the packaging, I mean it even says, “May cause death.” You know I mean, I don’t know in the future if this is, if they don’t get it out what harm it’s going to do to me, is it going to cause me to have sepsis, is it going to, to cause me the, the, I mean, I know and my family know and they can see it on a daily basis how I’ve gone downhill. How I can’t stand and cook a meal. How I can’t, take a pot of boiling water of potatoes off the stove and go and drain it. How I can’t get into a shower. How my husband has to help me. I mean I’m only 55 years of age, you know, so they, I mean there’s, they the Hippocratic oath you know first do no harm, don’t do any harm.

I’m on a wait list for removal. I have, however, decided to postpone my removal because the surgeons who are removing are competent and I’m very fortunate to be on the list of one of those people who are trying so hard to help, however, the government promised that there would’ve been mesh centres set up nationwide to assist us. But unfortunately, the hospitals don’t have the resources to provide suitable aftercare. So, horrific stories coming out from the ladies who’ve had it removal, but then don’t get their catheters or their packs taken out or have their three month follow up appointment, etc. And the operation is such Russian roulette, the mesh is never designed to come out, it embeds with your own tissue. It’s described as taking fish bones out of chewing gum or hair out of chewing gum, that sort of level. One of the so-called mesh centre specialists said to me, “Look, the damage is done. To be quite frank, the damage is done. All we can do by going in is maybe, maybe it halts that damage at the level that you have now. It won’t resolve the pain. But we run the risk of doing far more damage,” and that is the case, it’s Russian roulette. Some ladies come away successfully and others come away with is it called a stoma bag, for the bowel and for the bladder because of what damage that’s been done.

Looking back now, if I had you know, the information I’d needed I’d have never had my ovaries taken away. So, yeah, had the hysterectomy, ovaries went. I was never given any information about what it meant for my body or myself after hysterectomy. Had the hysterectomy, got an infection afterwards and so I ended up back in hospital with IV intravenous drip antibiotics. And then that was it, really. In all, I think it was six weeks or six months check when I saw her again and then that was when she referred me to urogynae and the ball rolled, really for me to have the TVT taken out. So, you know, yeah. Yeah, but I’m always shocked at how little information we get when, you know, something so massive as a hyst—makes you want to cry, actually. Something so massive as a hysterectomy and no information, nothing. My mum’s not had a hysterectomy and so I had nobody around me who’d had a hysterectomy to even ask and it was, to me it was just an operation. Didn't really think of the consequences of it. You know, it was going to stop the pain. That was all that was in my head. If they stopped the pain and, and got rid of the bits that you know, were causing the pain then that was all good. But no, it’s the worst thing I’ve ever done, I think, bar from the TVT. It’s the second worst thing I’ve ever done.

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.
 

Finally, in my early thirties, at some point, 32, 33, something like that I saw a female GP who and talked about it and she was very helpful actually and then I saw her a lot after that but she said, ‘Oh you need to go and see a urologist,” and so she booked me into see a consultant and I was tested and discovered to have a a sensitive urethra I think the word, words were and that they could resolve that with a dilatation and so I said, ‘Oh yeah, fine, let’s go ahead with that.”
 
And so just booked in for a day case and had the, had the procedure under general anaesthetic and was in agony afterwards and it didn’t really solve the problem. So my, I was referred once again and saw a different consultant or group of people anyway and they re-, they said they would do the procedure again but this, but it transpired that the first procedure was done with it was a single stretch with a pair of forceps but they would use in the second time a sort of gradual dilation with cones under general anaesthetic again and actually that that that sorted it actually. That completely resolved the issue I hardly ever, I hardly ever had cystitis since and if I have it’s often been, it’s been well bacterial infection I’m pretty sure and I’m just so horrified that it took 12 or more years to resolve that.
 

A bladder instillation is where they put a catheter into your urethra, wee hole, that’s me being medical knowledgeable and they basically put hyaluronic acid into your bladder so I’ve got a VIP bladder and vagina I thought, it’s getting so much attention [laughs]. So they’re putting that in and that’s weekly for about eight weeks and then I think they space it out to, to a month and then one more month and they see if it’s worked. So apparently what it does is this hyaluronic acid which is what women put on their face just to plump it up I believe, the hyaluronic acid thickens the bladder, and she says, “It’s almost like if you stretch a bag, you see sort of little parts where it’s thinned out,” she said, “That’s what we think your bladder’s doing.” She said, “So if we give it the hyalauron-,“ I’m struggling with it, “—the hyaluronic acid that will thicken it, make it healthier, make it more robust.” So it’s almost like they’re, you know, kind of giving me a more useful bladder.