Lynn - Interview 28

Age at interview: 28

Brief Outline: Lynn has lived with chronic pain for the last fourteen years. She experienced the pain before and during her periods. At first health professionals thought that she had endomietrosis. She had several exploratory tests and treatments, but she still does not have a clear diagnosis. She describes her condition as 'a chronic pelvic pain sufferer; or as a chronic lower pain sufferer with a black hole'.

Background: Lynn lives with her long term partner and is expecting their second child. University graduate. Ethnic background/nationality' White British.

More about me...

Lynn has lived with chronic pain since she was aged 14. She experienced the pain before and during her periods. At first the health professionals thought that she had endometriosis. She had several exploratory tests and treatments, including a laparoscopy and a drug induced menopause but she still does not have a clear diagnosis. She describes her condition as “a chronic pelvic pain sufferer; or as a chronic lower pain sufferer with a black hole” She says that this limbo situation as far as diagnosis is concerned is frustrating for both patient and medical professional. She is current being treated with' co-codamol (Tylex), sodium diclofenac (Voltarol), amitriptyline and morphine for flare-ups.

As a teenager she found communicating with health professionals, particularly GP's and specialists difficult. In her experience, she says, they can be divided into the 'patronising' and 'authoritarian' types.

For the last 14 years, pain has determined what she can and can't do in all aspects of her life but despite this she still has a positive outlook. She did a pain management course and it taught her techniques that have made her feel more in control of her pain and how she copes with it. A particularly valuable technique has been the 'breathing' technique. Moreover, she commented that the psychologist who taught her was a very good communicator and related to her as a friend.

She and her partner have been together for ten years and despite her doctors predictions she has become pregnant twice. Pregnancy is a particularly difficult period for her because she has to be taken off medication for the first three months each pregnancy which basically means that she is in a lot of pain during that period of time.

Her advice to other people suffering with chronic pain is that they are the only ones that really know what it is like to live with their own pain and that they have to live according to their own priorities and expectations, not those of other people such as friends and medical people.

It has been very difficult to live with physical symptoms and not really know what it is causing...

I think about 1990, no when I was about fourteen, I began my periods when I was about eleven and, and I think it, pain sort of was progressive from there forward, more noticeably when I became sort of fourteen, fifteen when the pain seemed to be, I used to get a lot of abdominal pain around the time of my period. I just didn't seem to be coping well around the times of the month, sort of mid my period time and I was having, it was just awful abdominal pain and I went to see my, my parents took me to see my GP  at that time and I think and I think a great deal, at that point, at the time, the GP sort of put it down to psychological problems, that it was more psychological than it was physiological. That it was just normal growing pains, period pains maybe, normal but interpreted differently and it was just something that I would grow out of and it would be something that I'd come to terms with. But it continued to get progressively worse and I became more and more distressed by it and it was affecting my daily life.

I always, whenever I have tests, I always expect nothing. Early on when, early on, when I first began to have all the tests, I think I was expecting, you know, especially because my symptoms, out of short I was so symptomatic of endometriosis, I the know the cystitis type symptoms around my periods and the pain when I opened my bowels, the blood, the mucus, the blood, the change in my bowel habits, the pain, you know, all the things that can quite often be associated with endometriosis. I think whenever I did have exploratory tests, treatments whatever, I just automatically thought that they're going to find endometriosis and of course they didn't. So I was gutted because nobody wants endometriosis, don't get me wrong, it's an awful disease to have and, you know, but it was an answer. Having chronic pelvic pain it's you're not getting any answers and being told that they can't find anything operable, or they say in terminology there's nothing operable or nothing specifically we can identify that may or may not be causing your pain. You know it, it's gutting, it won't, that's probably the wrong terminology, it's very upsetting, it's very despondent, you know, you feel despondent, even though it's good. Obviously it's fantastic when they don't find anything because that means that there's nothing, you know, there's obviously there could be a lot of things that could be a lot worse than finding nothing. So as time went on, as time goes on by going and expecting nothing, I suppose it makes it easier to cope. So it's quite a sad thing to think about really. If I analyse that to think that you're going thinking that they're going to find nothing, you think tomorrow's going to be exactly the same as today, so why are you going through the test in the first place, is in the hope that something's going to improve from having that test in the first, I don't know. But I don't know. Though my GP has now said, 'Just give up on the tests'.

How do you feel about that?

Frustrated but I understand why. If there was a point, you know, if, you know, what's the point of going through intrusive tests and having, you know, having every area of your body seen to whatever, to be told that they can't find anything. You know is it more despondent to go through that or is it harder to go through that than it is to accept that tomorrow is going to be the same as today and unfortunately, not unfortunately, you know that sounds negative, but, you know, you know what you coped with today, if it does get worse tomorrow, you can get through it, because you got through yesterday. Does that make sense?

It can be very reassuring to hear that others have had similar experiences - whether they are...

But having information available that of all sorts hits of everything of positive and negative I think reaches a person at the, you know, at the right time, can make a huge difference to them. If they are looking on the Internet, you know and they feel particularly positive about something and they read it, and somebody else felt positive about that thing it could be profound. And the same thing about feeling negative about something to be reassured because somebody else felt negative is as equally profound because it is reassuring that you are not going completely bizarre or potty. I think all of it is really important. Really, really important. You know and I'm rubbish at using support groups and support mechanisms but I think it works for people, everybody's different and having all these things available means that it meets somebody's needs if those needs are being met it's so important.

Is the Internet something that you've used? 

Yeah, I've dabbled. I've looked around on the Internet. And read different articles and in fact my GP's emailed things off the GP Internet or with the GP whatever. I think it's really important when you need, what something happens and you can just dab into the Internet and just read somebody's else or read whatever it's instant reassurance. And again it's profound when you're in a world of grey or you know or perceived black, sometimes it can be you know at really, really enlightening. It makes a huge difference.
 

Has not wanted to attend a support group. Really appreciated the care given by a trainee at the...

Do you have any other sources of support, for example support groups.

I'm terrible, I'm not very good at, I've had I've been a member of the endometriosis society for a long time and I've had numbers and people, they've phoned me up before and stuff like that, but I don't do support groups. Maybe I should, but I don't because, I think, if I was honest and true, I think it would make it an awful lot more real than, I don't, I suppose it already is very real but by talking to, talking about it with people who are experiencing it as well, makes me feel like, makes me feel vulnerable, not vulnerable, makes me feel'ill. So I don't, but the, one of the two main supports over the last fourteen years, one was a consultant at the hospital, a trainee who had a huge affect on me coping. She unfortunately, she did her training and actually left and her leaving had a huge affect on me. And the other vital support, other than obviously my family, is my GP who, even though I'm far away from now, I can still phone up whenever I need to. I think that's huge. But I shun quite a lot of support that I probably could have. My GP's put support groups numbers and flyers and things in my hand but I read it and I don't do anything 'cos they make it too real I think, I think that's why, I don't know, I don't know.
 

The psychologist helped her to understand the relationship between pain and emotions and how...

I was referred to a pain psychologist as a part I think probably support side of coping with the pain. I think, my GP, I think actually it was a consultant under the pelvic pain, but I went, I see a pain psycho, pain psychologist and it really, I think it really helped me. We did, we went through different things that we had to, we did a diary, when I was at uni and a different environment, where we had to, I kept a diary on a daily basis. Everything that I did had a scale of say one to ten or one to five and what those things, what those things, you know, let's say walking down the street and I put five or whatever and what I did and what things made me worse, in what ways they made me worse and then I'd go back to my meeting, which was once a week, with the pain psychologist and we'd go through the diary and she'd say 'How, when you did get to that level, how did you get through to cope?' So, if it was on a scale of one to five. How did you cope when it was level five? What did you do? And then she would suggest such things that may enhance what you did, like breathing through breathing techniques. One thing that she did actually was explained how pain is interpreted by the brain, so they use a, one thing that sticks in my mind, they used the simple terminology of a pain gate in the lower back that opens and closes according to your psychological interpretation of pain I think. And what opens that pain gate so if you're feeling more emotional, you're feeling less able to cope on a certain day then, for example, that may open the pain gate so the pain may seem worse. Which I don't want to sound like it's kind of all psychological 'cos some people might interpret it that way. But sometimes pain can be interpreted worse because you feel bad and some people, you know, and that can be intimidating for some people I think, because if you feel that your pain's made worse by your emotions and things, sometimes you worry that people think you're dolally rather than there being something actually wrong. And but there is the terminol' that this is what the pain psychologist explained and how, you know, these sort of things may affect it and what you can do to counteract those' You know, for example, if you're walking down the street if you feel that you're at level five, and you're feeling particularly emotional, you're feeling down, then your pain gate is going to make it a level five, whereas it may be, if you breathe a little deeper, rather than short breaths because you're feeling anxious. So, if you breathe deeper, you know, enabling oxygen to move round your body better, letting your body relax further, then maybe the pain level might be a level three. So, you know, it's not necessarily just the psychological interpretation but it's how that psychology affects how your body works and breathing's probably the best example of that, 'cos it does obviously affect how your muscles work, not obviously, but it does affect how your muscles relax.

She divides consultants between the authoritarian and the dismissive types. She prefers her GP...

You know, I was 14 years old when, when it all started and I was, you know, going through pain, I was like, you know, I needed reassurance, I needed, you know, and I was talked down to and told that, you know, that I needed psychological help and you know things like that. So it makes a huge difference, I mean, how that is communicated to a person. And I'm not saying that you need to be handled with kid gloves or treated as a labour of love, but there's a level and I think so many professionals, that I've come across, don't know how to find that level. They're so caught up with the, you know, the terminologies and physiologies and the psychologies of everything that they actually forget that they're talking to a person with feelings who actually go home and actually struggle to live on a daily basis and putting it in the simplest terms. Who cannot live a normal life and yet you go in there and you're told, you know, 'Well that's the way it is, you know, and you're doing really well and pat yourself on your back and I appreciate it must be really hard for you but, you know, do you want to come back next month and we'll talk again then' sort of thing. You know, that's one way of putting it, it's kind of dismissive and then there's the authoritarian who, sort of, you know, talks down to you and sort of says, you know 'You could be doing this, you could be doing that' and you're sort of there thinking 'Well I've come to see you to find out what I need to be doing or what could make it better in terms of you explaining it to me in simplistic terms so that I understand it' and they can't seem to break it down some of the long terminologies and you know everything else that comes from the text books. And there's the fact that you're in that black hole. So many people are so frustrated by it they take, you feel, it, it's so, for example, you're laying, it's so hard to put into words because it's so upsetting, it's so emotionally upsetting and you go into, you're in agony, you're vulnerable, you're emotionally on the edge, if you burst out crying or you get emotional, you feel, or you're made, I feel, it's probably unfair placing how I feel on somebody else because at the end of the day I'm responsible for those feeling, but, you're made, I feel, that I'm made to feel that, if I cry or, you know, I lose control a tiny bit, then, you know, it goes, comes right back I suppose to the psychology thing. That they think that, that, that you're losing, you're depressed rather than ill, rather than in pain. If you're in pain you get upset because you're in pain and you're frustrated and you're angry because you're in pain and you can't do anything about it and nobody knows what to do about it. So, of course, it's natural that sometimes you're going to cry. But, if you do cry, they treat you, some, quite often they treat you like there's some kind of hormonal person who can't deal with things, you know, that can't deal with life and you're going over the edge and you're going to need more anti-depressants otherwise, you know, you got to get the Prozac down your neck otherwise you're not coping sort of thing. And so they loose you feel that they lose sight on what you're actually trying to tell them, what you're actually trying to communicate to them, what you're actually trying to say to them, that 'I'm upset because I'm in pain every day and because I can't get out of bed every day and because I'm crawling on my hands and knees to be able to get out of bed every day, to get things down my neck' and you get so angry, frustrated by trying to explain that so many times, to so many different professionals, each of which have their own agenda, have their own specialist subject, have their own specialist area of your body that they want to analyse, that they don't look at the bigger picture in the first place, they look at the different little sections and don't put it all together, then it just tires you out and you end

Was devastated when she was told that she would not be able to have children 'naturally' and...

But then I had the absolute shock of my life. I, my pain changed, the pain that I was getting was different,  I was emotional, there was something going on and I was in, my pain in my pelvis was just really, really different, but really painful and I don't know why, whatever possessed me to do it, but I did a pregnancy test and I was pregnant which, you know, there's no, nothing that can ever, you know, no words that can ever, ever put a point on how, how I react, how I felt, everything that went with it and how my family and my partner, everybody that knew me, how they felt and reacted and everything. Which was fantastic, I was so pleased to be pregnant and then especially as a lot of the time over the time that I'd been ill, I'd been told, if you have a baby, if you do fall pregnant, you're going to get better, because the endometriosis gets better with pregnancy, and so on. And that was by the people that were speculating that there was anything else other than the endometriosis going on. So it was great. I was pregnant, so the fact that I couldn't have children, I was having a baby. The fact that I'd been told by so many people that I was going to get better when I had a baby all of a sudden all my prayers were, you know, the things that were important had come true and it was just amazing. I didn't really believe I was pregnant for a long time, I don't, we never went out and bought anything until I was 33 weeks [laughs] but I was ill from the offset. 

Took no painkillers for the first 12 weeks of her pregnancy. Worried that her medication might...

The first twelve weeks I had sickness and all the things that go with it, which was fantastic, but pelvic pain, lower back pain, I'd had to come off of all my medication. So there I was back to, you know, agony basically. In the sense that I'm in pain every day, but it was different control of pain, taking medication to help pain, but didn't actually take the pain away but made you able to live. So I was in pain, so I was bedridden. From twelve weeks I was able to start taking Co-codomol and Amitriptyline again, which was absolutely scary as anything because all I was worried about was this baby I was having. And  then I was in and out of hospital from seventeen and a half weeks right through to the birth for weeks at a time and the rest of the time I was bedridden at my parents' house on the basis that I was bedridden at my parents house otherwise I was in hospital, that was the compromise. And then I gave birth to my daughter, happened naturally, great, epidural though, I was a poofed I had my daughter, which was fantastic.

She describes what it was like having to give up the well paid job she loved and rely on benefits.

So, yeah, I lost, from leaving my job, 'cos I was there for two well I suppose, I worked for two years, I was there for three years and I progressed in my job. I started off as a county administrator, basically an office administrator, and I progressed and I was, I did organise all the competitions and tournaments for all the tennis players in the county, all the under eighteen tennis players, I oversee all competitive environments for all tennis in the county, all age groups. I attended, you know, I was, basically I, my salary reflected in two years, I sort of doubled my salary almost in the time that I was there. So it wasn't like a little job that I just happened to fall into, it was something that I worked really hard at and even harder because it was me, not because it was me, but even because of what I went through in order to keep the job and going to work every day. But that's, that's, just a personal thing. But so, leaving it was hard. And of course it financially it had a huge effect, huge, I mean losing over twenty grand a year, when you lived in, you know, one of the most expensive places to live in the country. Just starting off after uni with huge, well not huge, but average debts that you accumulate while at uni, through student loans, especially when you wasn't able to work through uni 'cos you were too ill. So, you know, so it was huge implications with not being able to work. So I had no, I didn't want to, I hate it, deplore it, but I have to, I have incapacity benefit now because it's a necessity, I need '174 every two weeks, some of that I, you know, I rely on heavily. I don't qualify disabled, because for some reason or another, something or another, because it's non pelvic pain, or chronic pelvic pain, or lower back pain or the terminology, or something along it, means that I can't be termed disabled for some reason or whatever. So I'm limited to what benefits I can claim. I can't have, I can't claim some of the other benefits because my partner earns more than what the minimum wage is needed for that. So I claim incapacity benefit, I think on long-term incapacity benefit at the moment, which you know, it's a simple enough system to go through, it's not simple, it's quite difficult, but it's simple in terms of it's not intimidating or frightening or the forms are easy enough to fill in, the medicals are not intimidating, the people are quite nice and approachable and, you know, quite helpful really, you sort of think that they're trying to prove that you're not ill [laughs], sort of intimidated by the system, but you know. I think, it's quite, you know, it's been, not been too bad, not too bad. It's just the fact that you have to do it that's hard I think, being termed as incapacitated. So I don't no. But yeah, '174 every two weeks is helpful. 

Physical pain can place a lot of strain on a relationship. She felt guilty about affecting the...

I think the most, obviously the most significant thing that I've missed out on is my partner, is my relationship with my partner. We've been together ten years. 'Yeah, we've been together ten years and I finished, well, we finished, we split up because of the effects after four or five years, I say the effects I didn't want my health to affect him, he was young, he wasn't, you know I wasn't able to have sex regularly with him, I was moody, I was in pain, I was on lots of medication. He was young, healthy, he didn't need it, so, you know, we just, we needed, I, for me personally, I needed for him to go and get a life for me to be able to cope, for me to not feel guilty about how I was affecting his life. But we got back together, two year, a year, two years later. We got, we were engaged, been engaged for four and half years, and we are now having our second child. So we are still together, but it's been hard and it is hard for him, very hard. Every, so much relies on what he does, he's in a job that he absolutely hates but he can't afford to work anywhere else, because he's got to support me because I can't work. But we love each other and get through it I suppose. We don't have sex regularly, we're don't, not intimate, or we're not lovey dovey physically as much as we'd like to be, we can't have play fights for our children or even tickle each other to death because it hurts me too much and we can't go for long walks and we can't go for meals and sit and talk for hours, 'cos I can't sit in a chair and I can't eat very well, but we get by. So that's it really.