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Transcript – Programme 88: What to EXPPECT When You’re in Pelvic Pain

We vis­it the EXPPECT pelvic pain clin­ic, where women share their expe­ri­ences and advice for liv­ing with per­sis­tent blad­der and pelvic pain

To lis­ten to the pro­gramme, please click here.

Inter­sti­tial cys­ti­tis, a.k.a painful blad­der syn­drome, is a poor­ly under­stood blad­der con­di­tion that caus­es long-term pelvic pain and prob­lems with uri­na­tion. The char­i­ty Blad­der Health UK esti­mates that 400,000 peo­ple in UK live with the con­di­tion. Of them, 360,000 are women.

Anne Cameron, retired nurse and now coor­di­na­tor for Blad­der Health UK in Scot­land, explains the var­ied symp­toms and treat­ments avail­able, and how cer­tain fac­tors can make the path to diag­no­sis far from smooth for some women.

Jen stress­es the impor­tance of sup­port groups in alle­vi­at­ing feel­ings of stress and iso­la­tion, and Pat describes how she over­came her ini­tial reser­va­tions to try dif­fer­ent self-man­age­ment tech­niques, includ­ing yoga and mindfulness.

Dr Shona Brown is a Clin­i­cal Psy­chol­o­gist and part of the mul­ti-dis­ci­pli­nary team at the EXPPECT pelvic pain clin­ic in Edinburgh’s Roy­al Infir­mary. She describes the impact of pelvic pain on patients’ emo­tion­al well-being and why it’s impor­tant to include a psy­cho­log­i­cal approach in pain man­age­ment programmes.

Issues cov­ered in this pro­gramme include: Bac­te­r­i­al cys­ti­tis, blad­der pain, EXPPECT clin­ic, fibromyal­gia, IBS: irri­ta­ble bow­el syn­drome, inter­sti­tial cys­ti­tis, irri­ta­ble blad­der syn­drome, migraine, mind­ful­ness, pac­ing, pelvic pain, sup­port groups, uro­gen­i­tal pain and yoga.

Paul Evans: This is Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, the UK char­i­ty pro­vid­ing infor­ma­tion and sup­port for those of us liv­ing with pain and for health care pro­fes­sion­als. I’m Paul Evans, and this edi­tion of Air­ing Pain has been sup­port­ed by a grant from the Women’s Fund for Scotland.

Pat Brown: The symp­toms were as if every step I took, some­one was stab­bing me with a knife up my vagi­na. There’s no oth­er way I can explain it.

Jen­nifer Hayes: All you can real­ly do, because you need to be near a toi­let and it’s so painful and you feel just gen­er­al­ly so unwell, I sit on a hot water bot­tle and just read and watch telly.

Pat Brown: …and then the pain radi­at­ed out from there and I couldn’t sit at all, I was in pain all the time.

Paul Evans: Inter­sti­tial Cys­ti­tis or Painful Blad­der Syn­drome is a poor­ly under­stood blad­der con­di­tion that caus­es long-term pelvic pain and prob­lems with uri­na­tion. The char­i­ty, Blad­der Health UK, esti­mates that 400,000 peo­ple in UK live with the con­di­tion — rough­ly 90% are women and 10% are men. Anne Cameron is a coor­di­na­tor for Blad­der Health UK in Scotland.

Anne Cameron: It’s an abnor­mal­i­ty prob­a­bly in the blad­der lin­ing. At the moment, the cause of it isn’t known it could be autoim­mune or aller­gy relat­ed, in some peo­ple it tends to come along with oth­er dis­or­ders like Fibromyal­gia, bow­el dis­or­ders, migraines. Some peo­ple may have obvi­ous abnor­mal­i­ties in their blad­der under cys­toscopy; oth­er peo­ple, it’s no so obvi­ous. But it gen­er­al­ly caus­es or can cause pelvic pain, which can be real­ly quite sig­nif­i­cant, uri­nary fre­quen­cy, dif­fi­cul­ty void­ing urine, emp­ty­ing your blad­der ful­ly or going for long peri­ods, and quite a lot of oth­er pain issues with, say, pain in your legs, var­i­ous dif­fer­ent areas in your pelvis. It does tend to vary quite a lot, but at the moment the cause isn’t known, and there’s no treat­ment that cures it and there’s no treat­ment that helps everyone.

Paul Evans: Now, you were a nurse?

Anne Cameron: Yes.

Paul Evans: Did you have this?

Anne Cameron: I had it when I was nurs­ing lat­ter­ly, yes, and it grad­u­al­ly wors­ened to the extent that I found work extreme­ly dif­fi­cult, per­sist­ed in work­ing, despite the advice of my con­sul­tant, was told that I shouldn’t have been work­ing, and then I even­tu­al­ly went on to have surgery which restricts me to what kind of job I can do. And I couldn’t go back to nurs­ing because my job was too heavy, so I’m now med­ical­ly retired.

Paul Evans: Anne Cameron, coor­di­na­tor for Blad­der Health UK in Scot­land. Jen­nifer Hayes has had inter­sti­tial cys­ti­tis for 2 years.

Jen­nifer Hayes: Well mine actu­al­ly start­ed with a bout of tra­di­tion­al, bac­te­r­i­al cys­ti­tis, and I’ve had that on and off all my life since I was 17. And it’s always cleared up by antibi­otics. And then just less than 2 years ago the antibi­otics didn’t seem to clear it up, and I repeat­ed­ly went back to the doc­tor and said ‘It’s not gone away’ and they would do their tests and they would say ‘But it has gone away’. Then we kind of got into a loop, and I was even­tu­al­ly referred to see a spe­cial­ist but that took 9 months and by then it start­ed to improve a bit. Of course, since then it’s recurred so it’s just a vis­cous loop really.

Paul Evans: I sup­pose, blad­der prob­lems, it’s not some­thing that you shout about or that you real­ly want to make known to people?

Anne Cameron: No it’s not, but I found lat­ter­ly, when I was par­tic­u­lar­ly try­ing to work, that I had to – I didn’t have any option. Although you could say to your work­mates ‘I’m not feel­ing very well, I’ve got a headache’ because of where I worked — I was in a ward — and there were no toi­let facil­i­ties in the ward, and it start­ed to become obvi­ous to some staff. And at times you do have to tell peo­ple because when your diet get restric­tive, when your flu­id intake starts to get restric­tive at times, or you’re toi­let map­ping all the time, you kind of find maybe a lot of peo­ple that you’ve been in con­tact with a lot of the time, fam­i­ly, friends, all that, becomes very difficult.

Paul Evans: Anne men­tioned the term ‘toi­let map­ping’- what does she mean, Jen?

Jen­nifer Hayes: It’s sort of keep­ing a record of how often you go to the toi­let, how much, you might mea­sure what you’ve void­ed, because some­times the blad­der doesn’t emp­ty prop­er­ly so you have to keep a record of how much flu­id is going in, how much flu­id is going out, how often, how you feel, what pains are involved in that.

Anne Cameron: I had quite a lot of intrav­es­i­cal treat­ments and at that point you have to chart-

Paul Evans: Inter- what treatments?

Anne Cameron: Basi­cal­ly treat­ments passed by catheter into your blad­der to try and coat your blad­der. And at that point they need to know how often you’re going to the toi­let, what prob­lems you’re hav­ing, what pain you’re hav­ing. But the toi­let map­ping is also this thing in the back of your head if you’re going out you need to know where all the toi­lets are in case you have to rush. And you can get to the point where you can be quite obsessed about it at times. Travel’s very dif­fi­cult: being on a motor­way is an absolute night­mare, if there’s a lot of traf­fic and you can’t get off to toi­let that you know is a mile up the road.

Paul Evans: What sort of issues do peo­ple who come to your sup­port group bring with them?

Anne Cameron: The younger ones a lot of the time it’s man­ag­ing work, man­ag­ing a kind of nor­mal life. I’d obvi­ous­ly been mar­ried for a long while and I’m quite lucky my husband’s quite easy-osy, but it does put an awful lot of strain on your rela­tion­ship at times. I cer­tain­ly felt an awful lot of guilt and I know that there’s maybe younger mem­bers in the group that per­haps would like to have fam­i­lies and all this kind of puts that up in the air. So that must be even more dif­fi­cult for younger peo­ple y’ know, rela­tion­ships and things like that.

Paul Evans: Explain why it puts it up in the air.

Anne Cameron: If you were to decide to go ahead and have a fam­i­ly, you don’t know how that’s going to affect the inter­sti­tial cys­ti­tis, if it’s going to make things worse. But it’s very dis­rup­tive to your life: I worked night shift for years but I quite often couldn’t sleep when I came home dur­ing the day – it was quite com­mon for me maybe to only get a few hours’ sleep one night a week, type thing –  which is very dis­rup­tive if you’ve got some­body, a part­ner, a fam­i­ly at home who are going out to work the next day. You know that you’ve kept them awake because you’ve been back and for­ward to the toi­let all night. Cer­tain­ly in my case, and I think it must be quite com­mon a lot of the time, I use a sep­a­rate bed­room to avoid dis­turb­ing my hus­band. I think quite often feel that they find that a bit hurtful.

Paul Evans: So what do you tell the young girls who come along to the sup­port group with inter­sti­tial cys­ti­tis who are think­ing about start­ing a relationship?

Anne Cameron: We only real­ly have one younger mem­ber in the Glas­gow group at the moment. There’s anoth­er cou­ple of mem­bers who are already in rela­tion­ships and I think quite a lot of them have read up quite a bit beforehand.

Obvi­ous­ly things have been dis­cussed, not so much about pre­vent­ing pain in the first place, and not pure­ly through rela­tion­ships, but per­haps things that oth­er mem­bers have found would ease their pain. Every­thing isn’t the same for every­one. Some things suit some peo­ple and wouldn’t be at all help­ful to oth­ers. A lot of it’s a very per­son­al type thing, and a lot of its kind of a tri­al and error to see if there’s any­thing that you would pos­si­bly find helps you.

We had a talk from Pain Con­cern and pac­ing was men­tioned; that’s some­thing I’ve tried to do for quite a long peri­od of time, and some­times that’s some­thing that I feel you have to try and fit into a rela­tion­ship as well.

Paul Evans: Explain that.

Anne Cameron: Well, obvi­ous­ly I’ve been mar­ried for years I’m not in a new rela­tion­ship or any­thing like that, but if I thought I was going to be inti­mate I wouldn’t the 2 or 3 days before do any­thing that was too active that I think would per­haps exac­er­bate things. I would have watched when I was work­ing, I would have mon­i­tored how tired I was or how I was feel­ing at the time, and I cer­tain­ly wouldn’t have planned to have gone and done any­thing very adven­tur­ous the next day.

It’s not just with inti­mate things; if I’d want­ed to do, say, any­thing out­side or a hob­by that I liked, you tend to find that you have to work out what you want to do and then rearrange things either side of it to enable you to do that. [to Jen] You’ve prob­a­bly found that at times?

Jen­nifer Hayes: Yes, you want to do some plan­ning but your plans can often very eas­i­ly go awry. But you do need to sort of pro­tect your­self and slow down.

Paul Evans: Pac­ing is very dif­fi­cult isn’t it?

Jen­nifer Hayes: Very! And it’s almost like need­ing a crys­tal ball as well. And when you feel that you can do some­thing the temp­ta­tion is of course to just go ahead and do it.

Paul Evans: But you say sort of ‘Plan 2 days ahead’, or ‘Maybe you could plan 2 days ahead’ if you want to be inti­mate with your part­ner – that is very dif­fi­cult for a young relationship.

Anne Cameron: Yes, I think it is. And I think that’s why so many peo­ple prob­a­bly end up feel­ing very guilty and being hard on them­selves, much hard­er than they real­ly should be. But there’s always this feel­ing that you’re let­ting some­one down. I would imag­ine par­tic­u­lar­ly in an ear­ly rela­tion­ship with younger peo­ple it must be very difficult.

Paul Evans: What are the treat­ments? If there are treatments.

Anne Cameron: There are var­i­ous recog­nised treat­ments: none of them are cures, they don’t all work for every­one, [in] some peo­ple they may wors­en their pain. Quite often ini­tial­ly, if you have a cys­toscopy to attempt to diag­nose inter­sti­tial cys­ti­tis you may also have a hydrodis­ten­tion, which basi­cal­ly stretch­es your blad­der with flu­id under pres­sure. It’s not 100% sure why that works or how that works, but it’s prob­a­bly to do with dam­ag­ing nerve end­ings so you’re not feel­ing so much pain. That’s cer­tain­ly a treat­ment I had and I wasn’t per­haps very keen on the idea, and the log­ic behind it didn’t seem quite right to me, but unfor­tu­nate­ly some­times you don’t real­ly feel like you’ve got any option.

There’s also a var­i­ous range of blad­der instal­la­tions which I have. They’re usu­al­ly week­ly treat­ments that run for 6 weeks and may be repeat­ed every few weeks depend­ing on your response to them. Most of them are based on hyaluron­ic acid, which didn’t con­cern me, but the sort of old­er treat­ment is DMSO and it’s based on a bi-prod­uct from the wood indus­try –  like, paper and wood – and it’s a glue-type sub­stance, which I wasn’t keen on, but that’s one of the main treatments.

There’s only real­ly one oral drug which is pre­scribed for this, but that’s on a named patient only basis and your con­sul­tant has to pre­scribe that for you. That can be quite dif­fi­cult to get depend­ing on your con­sul­tant and which [NHS] trust you’re in. You usu­al­ly have to take that for about 6 months before you start to notice any difference.

In Amer­i­ca I think for sev­er­al years they’ve been doing what they call res­cue reme­dies, which has bicar­bon­ate of soda and var­i­ous things, an instal­la­tion that they put into the blad­der. As far as I’m aware that wasn’t avail­able in Britain until quite recent­ly, I don’t know how wide­ly it’s being used in Scot­land, although I know there are some areas in Eng­land where I know it’s being used. But that’s to relieve the pain imme­di­ate­ly rather than a long term type thing.

There’s dietary advice, some peo­ple may take anti­his­t­a­mines, there’s prob­a­bly quite a lot of peo­ple who unfor­tu­nate­ly don’t get the chance maybe to go to a pain clin­ic and are on mor­phine and things like that. I don’t know that that gen­er­al­ly always helps peo­ple, cer­tain­ly in my case I take gabapentin and amitripty­line. It kind of tends to vary per­haps which con­sul­tant you see, some of them obvi­ous­ly have dif­fer­ent ideas and there is a wide range of par­tic­u­lar­ly anti­his­t­a­mines, I think, that peo­ple try. There’s obvi­ous­ly quite a lot of herbal things and there’s quite a lot of sup­ple­ments which are sug­gest­ed, but I think some­times you’ve got to be care­ful because you could end up with this list of things as long as your arm and you don’t real­ly nec­es­sar­i­ly know what’s help­ing you and what isn’t.

Paul Evans: Anne, you were say­ing you had a pro­ce­dure – an oper­a­tion – to help you out?

Anne Cameron: Yes, I had what’s called a con­ti­nent uri­nary diver­sion with Mitro­fanoff. Basi­cal­ly my blad­der had been so bad­ly dam­aged and had such small capac­i­ty I was more or less liv­ing in the toi­let and there was no oth­er treat­ments avail­able to me. This was my last option. So I end­ed up hav­ing surgery, I was in hos­pi­tal for about 4 weeks. I had my blad­der, not removed I had it dis­con­nect­ed because of issues with blood ves­sels, and I now have a sec­tion of bow­el which is inter­nal and which is now a reser­voir for urine. I have a very small stoma, which I catheterise about every 3 hours, and unless I have prob­lems in the future I’m hop­ing this will be a life-long thing. Although I may in the future have to resort to a urosto­my and wear an exter­nal bag.

It has ben­e­fit­ted me huge­ly in some ways, but in oth­er ways can be quite dif­fi­cult because it’s not a com­mon­ly done pro­ce­dure. My GP doesn’t real­ly have any aware­ness about it and that can make things quite dif­fi­cult if I have any prob­lems. Once I even­tu­al­ly had my first cys­toscopy about 4 years after I start­ed going to my GP I got a def­i­nite diag­no­sis at that point. Up to that point, I’d basi­cal­ly been told ‘Oh you’ve got IBS, get on with it. It’s in your head.’

Paul Evans: Anne Cameron of Blad­der Health UK. And I think this is a good point in the pro­gramme to remind you that that whilst we in Pain Con­cern believe the infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound based on the best judge­ments avail­able, you should always con­sult your health pro­fes­sion­al on any mat­ter relat­ing to your health and well­be­ing. He or she is the only per­son who knows you and your cir­cum­stances, and there­fore the appro­pri­ate action to take on your behalf.

Now back to Anne Cameron was say­ing about being made to feel that the pain was all in her head. It’s a recur­ring theme with the peo­ple I speak to who live with chron­ic pain con­di­tions. How­ev­er, it’s not to say that that the pow­er of the mind isn’t a fan­tas­tic resource to help man­age one’s pain.

The acronym EXPPECT stands for Excel­lence in Pelvic Pain and Endometrio­sis Care and Treat­ment. The EXPPECT Pelvic Pain Ser­vice is based in Edinburgh’s Roy­al Infir­mary and it con­sists of a mul­ti­dis­ci­pli­nary team, includ­ing; a con­sul­tant gynae­col­o­gist, a con­sul­tant in anaes­the­sia and pain med­i­cine, a spe­cial­ist nurse, an acupunc­ture ther­a­pist, a psy­chi­a­trist and clin­i­cal psy­chol­o­gist Dr. Shona Brown, who leads the pain man­age­ment pro­gramme there.

Shona Brown: There’s still a lot of mis­con­cep­tions about psychology’s role par­tic­u­lar­ly in pain man­age­ment and I think I always start con­sul­ta­tions off with women by say­ing it’s not because we think the pain isn’t real, or in their head. But we know that liv­ing with pain as a long term con­di­tion can be incred­i­bly stress­ful, can impact what peo­ple can do, and that can have a knock on effect to their mood. And it’s all about try­ing to help peo­ple live well with long term conditions.

Paul Evans: And one of those peo­ple who’s been liv­ing with her long term con­di­tion, that’s pelvic pain for 5 or 6 years, is Pat Brown.

Pat Brown: I’m in pain, it’s chron­ic, it’s neu­ro­path­ic, and I think it start­ed because I had lichen scle­ro­sus. And once I was treat­ed with steroids for that I seemed to have a reac­tion to it, and was left with this pain that I just had to try to deal with. And wasn’t deal­ing with at all. The symp­toms were as if every step I took, some­one was stab­bing me with a knife up my vagi­na. There’s no oth­er way I can explain it. And then the pain radi­at­ed out from there, and I couldn’t sit at all.

It seems quite sim­ple to say ‘I couldn’t sit down’ but that affects every­thing in your life – you can’t go out and socialise. Y’know I always joked to say I could lie down with my legs up in the air all day but oth­er than that, I couldn’t do any­thing! And then as the med­ica­tion increased, and I’m not sure if it was the med­ica­tion or myself, I began to get more pan­ic attacks and have night ter­rors, and culdn’t sleep either. So I was in a state both phys­i­cal­ly and men­tal­ly that I thought – and I know it sounds dra­mat­ic – but I thought I just could not con­tin­ue, like that. And I was so lucky that my GP referred me to Shona, and I attend­ed Shona’s class for 12 weeks, so it was 6 sessions.

The crazy thing is I think I was in so much pain and so pan­icked about it, I couldn’t see a way out of it. And I now won­der why I didn’t look at oth­er things I could’ve done. But at the time, I wasn’t able to.

Paul Evans: Is that a com­mon story?

Shona Brown: Yeah, and I think the nature of pain, it’s so com­plete­ly life alter­ing and I think peo­ple feel real­ly stuck. I think our soci­ety is very geared up to the med­ical mod­el, y’know: we have a symp­tom, we expect to go to a doc­tor, for them to give us a diag­no­sis, a treat­ment, and that we will then be cured. And, I mean med­i­cine is amaz­ing and for lots of things it works very well, but we do know there’s some times that it just doesn’t work that way, and I think lots of the women that I see feel very stuck and very hope­less and not sure where to turn now. They feel quite on a path of try­ing to see a dif­fer­ent doc­tor, get anoth­er opin­ion, anoth­er med­i­cine, and I think some­times it can feel a bit of a relief to know that there’s some­thing else that can help, anoth­er type of approach, and to look at some non-med­ica­tion strategies.

Paul Evans: So at what point were you intro­duced to the idea of see­ing a psy­chol­o­gist, Pat?

Pat Brown: I didn’t even know I was going to see a psy­chol­o­gist, because my GP said she would refer me to pain man­age­ment at the hos­pi­tal, and I did say at the time ‘Please refer me to some­one that will actu­al­ly help’ and so I was referred to Shona’s clin­ic. When I got there and I had 2 one-to-one ses­sions with Shona, first of all I just cried more or less all the way through it.

Ini­tial­ly I wasn’t sure of where this would take me, but actu­al­ly I was real­ly pleased to speak to some­one. And I think with neu­ro­path­ic pelvic pain it’s very iso­lat­ing, too. You can’t actu­al­ly go to some­one and say ‘Well, y’know, my bum’s real­ly sore’ or ‘I can’t sit down’, you can’t – well I nev­er felt I could. I live alone, so I could speak to my son and 1 or 2 peo­ple, but gen­er­al­ly, even now, maybe 5 or 6 peo­ple know I have this con­di­tion. I think it’s an embar­rass­ing con­di­tion for a woman and woman maybe of my age, but I was very iso­lat­ed as well. So I was hap­py to speak to Shona, not real­ly hav­ing any expec­ta­tions. And she did men­tion the first time, or maybe the sec­ond time, we met, would I think about try­ing mind­ful­ness. And I said to her I was be too old and cyn­i­cal and I wouldn’t be doing that, y’know, I wasn’t real­ly sure of what I was enter­ing into.

Paul Evans: It’s a huge leap, isn’t Shona: you go to the doc­tor to be fixed. The doc­tor fix­es, you are fixed. So it’s a huge leap to come to some­one like you.

Shona Brown: What always amazes me is the brav­ery of peo­ple com­ing along, and I’m ask­ing real­ly per­son­al, inti­mate ques­tions, and how open peo­ple are. And how open mind­ed they are. And I think maybe it is a reflec­tion of peo­ple feel­ing they haven’t got any­where else to go and they’re will­ing to give it a try, but you know, I think that’s great from my point of view as a pain psy­chol­o­gist that peo­ple come with an open mind, will­ing to try things out. I think that’s some­times part of the work we do as pain psy­chol­o­gists, is try­ing to help peo­ple start to come to terms with the process of adjust­ing to the fact that this might be per­sis­tent, and maybe a cure a cure isn’t going to be com­ing along any time soon.

Pat Brown: The first ses­sion that Shona did was actu­al­ly about under­stand­ing your pain and look­ing at the actu­al, phys­i­cal, what pain is. And I sup­pose, in a crazy way, I had nev­er thought of that. I think I was in the mod­el of going to the doc­tor and get­ting it fixed. So I think you build up con­fi­dence in the group, and then to be quite hon­est I was very, very des­per­ate and I would’ve tried any­thing. If I could have stood on my head for half an hour every day and that would have got rid of my pain I tell you, I would have man­aged it. So I was will­ing to try every­thing that Shona rec­om­mend­ed. I didn’t do all of them, but I cer­tain­ly looked at them, tried them out and thought ‘does that fit for me?’ and through that man­aged to devel­op some strate­gies that help my pain.

Paul Evans: What sort of strategies?

Pat Brown: Well, the first thing Shona gave me, because I was so des­per­ate when I saw her in the one-to-one ses­sions, she gave me a CD of tracks of relax­ation. At first I lis­tened to all of them, and then there was one which was a very straight­for­ward one of tens­ing and relax­ing – noth­ing, y’know noth­ing [com­pli­cat­ed] – but I decid­ed that I would do that every night before I went to sleep. I’d go to bed and I would lis­ten to the track with my ear­phones on. And I did that, and I have to say, before I even start­ed the pain man­age­ment course, the night ter­rors went. I still didn’t always sleep well, but maybe it was also the fact that I felt I was doing some­thing, you know, what­ev­er it is it was some­thing I was doing. I remem­ber say­ing to Shona in class when we were in the group, I was going to do this every night whether I felt great or bad, no mat­ter what, and it would be my sort of secu­ri­ty blan­ket. And I’m still doing it 2 years lat­er, every night. Wouldn’t mat­ter if I went to bed at 3 in the morn­ing, I couldn’t go to sleep before I did this relax­ation tape. So that was one strat­e­gy I’ve kept.

Oth­er strate­gies are doing mind­ful­ness every day, and exer­cise. Which, you know, I’m not very keen on exer­cise – I wouldn’t say I was an active child or adult – but now I do exer­cise, espe­cial­ly yoga. So that’s anoth­er one. And actu­al­ly just try­ing to have a much more pos­i­tive mind­set when it flares up at its worst, to think ‘I’ve been here before and it has got bet­ter, and if I can real­ly real­ly dis­tract myself then I will have even 5 min­utes with­out pain, which could end up being an hour’. The first time I did a yoga class, I didn’t have pain the whole of the rest of the day. Some­times now I do yoga and I’ve not got pain for an hour. But I nev­er come away from a yoga class in pain.

Paul Evans: The pain man­age­ment pro­gramme you said it’s a 12 week pro­gramme. What hap­pens when that 12 weeks is over? When you’re on your own?

Shona Brown: That’s some­thing we talk about as part of the group, and we start to pre­pare peo­ple to think about what are the next steps, because I’m well aware that doing a short term group it’s not that at the end of that group every­thing is exact­ly how the per­son would like it to be. It’s intro­duc­ing them to some cop­ing strate­gies and the start of a process. So then think­ing about what the next steps are, and what there is, per­haps third sec­tor organ­i­sa­tions that might sup­port that. I always men­tion Pain Con­cern and Air­ing Pain to give peo­ple some of the things that are out there that they might want to link in with. Things like vul­val pain we’ll men­tion the Vul­val Pain Soci­ety web­site, get peo­ple think­ing about what oth­er sources of sup­port there are.

And yeah and acknowl­edg­ing that it can be a bit of a scary time. I think if peo­ple have made progress they sort of attribute that to com­ing along to the group, and I often think about it quite dif­fer­ent­ly. I think actu­al­ly it’s what the peo­ple who are com­ing along are doing, it’s them who are mak­ing these changes – we’re just giv­ing them some ideas. So dis­cussing some of that I think can be help­ful too.

Paul Evans: That was psy­chol­o­gist Dr. Shona Brown of the Pelvic Pain Ser­vice in Edin­burgh. And some of those third sec­tor organ­i­sa­tions: of course we at Pain Con­cern can be found at www.painconcern.org.uk she also men­tioned the Vul­val Pain Soci­ety and its web address is http://www.vulvalpainsociety.org and the patient sup­port char­i­ty, Blad­der Health UK http://bladderhealthuk.org/

Here’s their coor­di­na­tor in Scot­land, Anne Cameron’s advice for those who think they may have inter­sti­tial cys­ti­tis, but aren’t sure. What’s the first step?

Anne Cameron: I think I would look at their symp­toms, advise them to think how long this has been going on for, the prob­lems that they’re actu­al­ly hav­ing. Obvi­ous­ly going to their GP. If they’re look­ing online, obvi­ous­ly look to sites like Blad­der Health UK. Be care­ful at times look­ing online because it’s like every­thing else you can get a lot of bad advice, and some­times it’s very easy to read things and think ‘Oh I might try that or I might do this’: everyone’s enti­tled to dif­fer­ent views but look for infor­ma­tion via a rep­utable source.

If they feel this is pos­si­bly what they’ve got, per­haps do a wee bit of research and if you decide to go to your GP explain your symp­toms and explain to them why you think you have this. But to be hon­est, [being] real­is­tic about it, you might find you have to push quite a bit or it’s some­thing that you have to per­sist with.

Paul Evans: So you have to be pos­i­tive with your GP?

Anne Cameron: Yes I think so. Some­times it’s dif­fi­cult to be, but I think if you per­haps go in neg­a­tive­ly with a big list of symp­toms and you’re real­ly stressed about it in front of them, I don’t always think that ben­e­fits you best. In all fair­ness prob­a­bly at times I was a bit like that because I found it took so long to get a diag­no­sis. But con­tact Blad­der Health UK, phone them up: they’ve got loads of resources whether it be books or whether it be advice leaflets. You’ve also got the capac­i­ty to ask ques­tions, they’ve got a med­ical pan­el of urol­o­gists and things can be ran passed them. There are quite a lot of options but just be care­ful where you look for the advice.

Paul Evans: And you were say­ing about see­ing your GP. Pain Con­cern pub­lish a doc­u­ment about man­ag­ing your con­sul­ta­tions as well, and I think one of the words of advice is that you should go in with a short list: not a list of 24 things that you think might be wrong with you.

Anne Cameron: Yes.

Paul Evans: And just tell me again, sup­port groups: how impor­tant are they, Jen, for some­body start­ing out?

Jen­nifer Hayes: I think they’re tremen­dous­ly impor­tant, because very few peo­ple men­tion the word ‘inter­sti­tial cys­ti­tis’ actu­al­ly, my doc­tor has nev­er called it that.

Paul Evans: What does he or she call it?

Jen­nifer Hayes: Irri­ta­ble blad­der syn­drome. But when I went to see the spe­cial­ist at the hos­pi­tal, all the sup­port staff said ‘It’s prob­a­bly inter­sti­tial cys­ti­tis, have you ever heard of that?’ But I had heard already heard of it, because when you start look­ing up blad­der con­di­tions it leads you, and then you lead and you look at that and you think ‘Oh that’s it, that’s just exact­ly what it is’.

Paul Evans: That was Jen­nifer Hayes. Now, we referred ear­li­er to endometrio­sis. If this is some­thing that affects you, then lis­ten to Air­ing Pain edi­tion num­ber 42, which focus­es on endometriosis.

You can down­load that and all edi­tions and tran­scripts of Air­ing Pain from Pain Concern’s web­site, and once again it’s www.painconcern.org.uk.

Now, to end this edi­tion of Air­ing Pain, you’ll remem­ber that Anne Cameron men­tioned that her GP had thought her pain was all in her head.

Anne Cameron: When I went back and just hap­pened to see the same GP again after my surgery I think he was a bit tak­en aback. He obvi­ous­ly realised you don’t end up going through major surgery and being in hos­pi­tal for a month for some­thing that’s in your head.

Paul Evans: The plus point there, I guess, to fill one’s glass half-full, is that now your GP knows what the con­di­tion is.

Anne Cameron: Well I hope so, and I hope it’s some­thing that would be to the advan­tage of oth­er peo­ple going in with the same kind of symp­toms. I hope they would pick up on it now, rather than peo­ple being in this sit­u­a­tion where it goes on for years and you’re unable to get any help. I hope what I’ve gone through would per­haps be of ben­e­fit to some­one else.


Con­trib­u­tors:

  • Anne Cameron, retired nurse and Scot­land Coor­di­na­tor for Blad­der Health UK
  • Jen­nifer Hayes, pelvic pain sup­port group member
  • Pat Brown, patient at EXPPECT clin­ic at Edin­burgh Roy­al Infirmary
  • Dr Shona Brown, clin­i­cal psy­chol­o­gist at the EXPPECT clin­ic at Edin­burgh Roy­al Infirmary.

More infor­ma­tion:

Comments

my name is Chris­tine i live in north­ern Ire­land and i am a suf­fer­er of shringomyelia and Shari mal­for­ma­tion my pain start­ed at the age of 13 years old and the only way to describe the pain is as i start to pee a red hot pok­er is pushed into my vagi­na and i have to it on the toi­let until pain subsides
i have had quite a few things done to try to help my prob­lem they have stretched the neck to try t give me a wider space to pee from did not work i was tak­en to the­ater and a Cather was insert­ed to try and give my blad­der a rest as i woke i was scream­ing in pain so they removed it in the recov­ery ward i am now 59 years old and still suffer

Michelle Ellis

Hi
I’ve read with inter­est ..I too have blad­der problems!…I was dxn with Fibro five years ago.!!.I have var­i­ous chron­ic health issues!…One of them being my blad­der !.I had a blad­der lift rough­ly 7 years ago!..Since then over time ..I’ve lost com­plete con­trol when voiding!…I’ve had a cou­ple of cysocopy’s…and the blad­der is small..and the mus­cle con­tracts con­tin­u­ous. tried var­i­ous med­ica­tion etc noth­ing worked .…Then I was offered Botox injec­tions into the blad­der muscle…I must say I have improved my qual­i­ty of life.…Due to see con­sul­tant in a few weeks time to review my condition…

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