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Transcript — Airing Pain 97: Sex and Chronic Pain

How chron­ic pain can affect both sex­u­al and emo­tion­al inti­ma­cy, and remem­ber­ing that com­mu­ni­ca­tion is key

To lis­ten to this pro­gramme, click here.

This pro­gramme is sup­port­ed by an edu­ca­tion­al grant from the Tilly­loss Trust.

Along with food, shel­ter and cloth­ing, sex­u­al expres­sion is one of the basic human needs. It allows us to express love and ful­fils our need for human con­nec­tion, but for the 14.3% of peo­ple in the UK liv­ing with mod­er­ate­ly or severe­ly dis­abling chron­ic pain, sex can be met with trep­i­da­tion and anx­i­ety.[1] This is under­stand­able, as it is esti­mat­ed that 75% of those that live with chron­ic pain expe­ri­ence sex­u­al dys­func­tion.[2]

There can also be a cer­tain amount of embar­rass­ment in dis­cussing chron­ic pain and its effect on sex­u­al activ­i­ty with health­care pro­fes­sion­als, espe­cial­ly if they don’t have the skills to address these issues. This is why Pain Con­cern has updat­ed its sex and chron­ic pain leaflet with authors Katrine Petersen, senior phys­io­ther­a­pist, and Dr Sarah Edwards, clin­i­cal psy­chol­o­gist, who spe­cialise in abdom­i­nal pelvic pain at the Pain Man­age­ment Cen­tre, Uni­ver­si­ty Col­lege Lon­don Hos­pi­tals NHS Foun­da­tion Trust. You can find the leaflet on our web­site here.

In this edi­tion of Air­ing Pain, Paul speaks to Dr Edwards and Petersen about the major dif­fi­cul­ties patients expe­ri­ence when it comes to liv­ing with chron­ic pain and man­ag­ing sex­u­al inti­ma­cy and tech­niques that can be used to com­bat them (you can find these tech­niques in our leaflet).

Denise Knowles, fam­i­ly coun­sel­lor and psy­cho­sex­u­al ther­a­pist work­ing with rela­tion­ship sup­port char­i­ty Relate, speaks about her expe­ri­ences of how rela­tion­ships can be affect­ed not only by phys­i­cal pain, but by men­tal pain as well. She also stress­es the impor­tance of the dis­tinc­tion between ‘sex’ and ‘inti­ma­cy’.

Issues cov­ered in this pro­gramme include: Anx­i­ety, dat­ing, gen­der, inti­ma­cy, men’s pain, mis­con­cep­tions, myths about sex, pelvic pain, uro­gen­i­tal pain, rela­tion­ships, safe sex and wom­en’s pain.

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 is sup­port­ed by an edu­ca­tion­al grant from the Tilly­loss Trust.

Denise Knowles: Over the years that I’ve been work­ing in this area, I nev­er cease to be amazed at what a taboo sub­ject sex still is between cou­ples. You know, we’re sur­round­ed by sex­u­al­i­ty and yet it’s still a very dif­fi­cult sub­ject for peo­ple to talk about.

Evans: Per­sis­tent or chron­ic pain can impact on lots of areas of life such as work, exer­cise, social­is­ing and mood.  But its effect on sex­u­al activ­i­ty can be dif­fi­cult to dis­cuss, or even admit to by the per­son in pain and his or her part­ner. Dif­fi­cul­ties and embar­rass­ment can also be com­pound­ed when one’s health care pro­fes­sion­als don’t have the skills and con­fi­dence in address­ing sex­u­al dif­fi­cul­ties. With this in mind, Pain Con­cern has updat­ed its ‘Sex and Chron­ic Pain’ leaflet. Its authors are Senior Phys­io­ther­a­pist Katrine Petersen and Clin­i­cal Psy­chol­o­gist Dr Sarah Edwards, both of whom spe­cialise in abdom­i­nal pelvic pain at the Pain Man­age­ment Cen­tre, Uni­ver­si­ty Col­lege Lon­don Hos­pi­tals NHS Foun­da­tion Trust.

Dr Sarah Edwards: Most peo­ple who come to see us strug­gle to talk about [sex] either when we first see them for assess­ment or when we’re see­ing them for reg­u­lar ther­a­py ses­sions, either indi­vid­u­al­ly or in a group. So [that’s] one of the rea­sons that we did the leaflet and we’re also writ­ing up a mod­el that we’ve writ­ten on work­ing with sex with peo­ple with chron­ic pain.  We’re writ­ing it up for pub­li­ca­tion, part­ly just to pub­li­cize the whole issue, because I think peo­ple get very embar­rassed, they feel quite ashamed, they feel quite shy about talk­ing about it.

Of course, if they don’t talk about it as an issue, it’s hard for us as clin­i­cians to help them. On the oth­er side of the coin, as clin­i­cians, we’re often quite ret­i­cent to bring it up as an issue because we also feel embar­rassed and don’t quite know what to say or how to ask. So it’s real­ly try­ing to open up the con­ver­sa­tion, I think that’s the start­ing point.

Evans: I have to admit that I’m embar­rassed as well.  I’m a man well beyond my prime [laugh­ter] but it is not a sub­ject I would bring up any­where out­side my house­hold or in front of you two.

Katrine Petersen: As a phys­io­ther­a­pist, I will ask peo­ple about var­i­ous aspects of their lives, in terms of activ­i­ty. So I’ll ask them about sport, walk­ing, sit­ting, going out social­is­ing etc. and along that list of ques­tions I have comes inti­ma­cy.  So I ask about rela­tion­ships and inti­ma­cy and a major­i­ty of peo­ple are quite will­ing and relieved that some­one’s actu­al­ly ask­ing about the issues.

Evans:  So, what are the issues, you tell me?

Petersen: Often, with chron­ic pain patients, well num­ber one, they can be on a num­ber of med­ica­tions that means that sex­u­al activ­i­ty becomes much more dif­fi­cult. At times, they don’t even real­ize it’s a med­ica­tion that might be caus­ing them to have prob­lems with sex dri­ve. It’s not until you raise it and explain it to them, that they can actu­al­ly do some­thing about it, rather than wor­ry­ing about it being anoth­er type of issue.

Then, of course, there’s all the phys­i­cal restric­tions that peo­ple have when they have pain and things they want to avoid. Ulti­mate­ly, it’s just like any oth­er activ­i­ty, if some­thing is painful, you want to avoid it.  But over time, what we know is that peo­ple then start miss­ing out on some­thing that’s a huge part of their life.

Evans: And I guess miss­ing out on that, it puts huge bur­dens on a relationship?

Edwards: Hmm, I think it can put a rela­tion­ship that might be under strain already, under even more strain. All of us hold kind of ideas or myths in our heads about how sex should be and that’s often come from the media, from news­pa­pers and soap operas, and every­thing else. So all those ideas about sex which should be spon­ta­neous and adven­tur­ous and three times a week or what­ev­er it is that you’ve read in the paper, and if peo­ple aren’t liv­ing up to that ide­al, they often feel that they can’t real­ly men­tion it .If they don’t talk to their part­ner about it and sex just falls by the way­side, that can lead both part­ners to feel quite dis­con­nect­ed from each other.

What we see some­times with peo­ple who aren’t in a cur­rent rela­tion­ship, is that they may assume that because they’ve got pain and sex is more dif­fi­cult than it used to be, they put any idea of being in a rela­tion­ship in the future on hold, that it’s just not going to hap­pen. That’s such a big part of life that it’s a real loss to shut one­self off from that pos­si­bil­i­ty.  We’ll often help them to build up their con­fi­dence, so they can con­sid­er hav­ing a roman­tic rela­tion­ship in the future, rather than think­ing to them­selves that that will nev­er happen.

Evans: So how do you deal with that? Say some­body, well they don’t have to be young, they could be mid­dle-aged, they could be old and not in a rela­tion­ship and hold­ing back from a rela­tion­ship, because they feel that who­ev­er they get involved with, the part­ner will not be ful­filled, it wouldn’t be a ful­fill­ing rela­tion­ship. How do you deal with that?

Petersen: I talk to patients about activ­i­ty and it would be famil­iar to a lot of peo­ple who might have worked in pain, or who have been to see pain man­age­ment clin­i­cians — the idea of pac­ing and the idea of find­ing a base­line and then grad­u­al­ly build­ing up. It would be famil­iar to lots of peo­ple, if they want to run a marathon, they’re not just going to do a marathon — they kind of build up for it grad­u­al­ly. They will prob­a­bly hurt some­where along the way but that’s a nor­mal part of build­ing up. So I talk to patients about how you build up to activ­i­ty in the same way, when I talk about sex­u­al activity.

If some­one is not in a rela­tion­ship, it’s about estab­lish­ing a base­line, what are they pre­pared to explore? So we do have to talk about words like mas­tur­ba­tion and vibra­tors and stuff that patients can do them­selves to work out their base­line — because if they do come across some­one whom they might want to be in a rela­tion­ship with, it’s real­ly impor­tant able to explain to them what can I tol­er­ate, this is this is as far as I’m pre­pared to go at this point in time.

Of course, explor­ing those myths — just because you meet a part­ner who looks well, does­n’t mean they don’t have their own issues. It’s sur­pris­ing how many peo­ple do grad­u­al­ly start to real­ize that actu­al­ly, a huge part of the pop­u­la­tion will have some form of sex­u­al issue at some point in their life and that we all have to have strate­gies to deal with that.

Edwards: There’s a very help­ful approach called Sen­sate Focus, which is used in lots of dif­fer­ent areas of sex ther­a­py, which is basi­cal­ly a step by step build­ing up of sex­u­al activ­i­ty, start­ing just with phys­i­cal affec­tion and then mov­ing all the way up to pen­e­tra­tive sex, a lot fur­ther down the line. That works real­ly well for peo­ple for all sorts of rea­sons, but again if you’re in a rela­tion­ship when you have a part­ner, you need to com­mu­ni­cate about that for it to be able to work. That can be embar­rass­ing, so some­times peo­ple will show their part­ner some writ­ten infor­ma­tion, like the new leaflet that we’ve done or some­thing else — that’s a kind of start­ing point to dis­cussing some­thing that maybe they haven’t open­ly dis­cussed before.

Most people’s expe­ri­ence is that actu­al­ly their part­ner may have had some wor­ries them­selves about why sex has decreased [such as] does­n’t that per­son find them attrac­tive, don’t they like them any­more, is the rela­tion­ship on the rocks? So usu­al­ly they’re quite reas­sured by the dis­cus­sion, even if it is a bit embarrassing.

Evans: But when we talk about dis­cus­sions, that assumes that cou­ples are still talk­ing to each oth­er and that it has­n’t gone beyond that point of anger, if you like, and frustration.

Edwards: Yeah, I think that’s a very good point and there are all sorts of things that come in the way of a rela­tion­ship, so it could be pain, it could be dif­fi­cul­ties with sex­u­al func­tion, it could be oth­er things and so when we assess some­one or when we assess some­one and their part­ner, we will some­times refer them on for psy­cho­sex­u­al coun­selling or to an orga­ni­za­tion like Relate, because there may be big­ger issues.  It may not just be about main­tain­ing sex­u­al inti­ma­cy in the con­text of pain.

Evans:  That was psy­chol­o­gist Dr Sarah Edwards and before her, phys­io­ther­a­pist Katrine Peter­son of the Pain Man­age­ment Cen­tre, Uni­ver­si­ty Col­lege Lon­don Hospital.

Well, the char­i­ty, Relate referred to there, pro­vide rela­tion­ship sup­port for peo­ple of all ages, back­grounds and sex­u­al ori­en­ta­tions, to indi­vid­u­als, cou­ples and fam­i­lies, with any aspect of their rela­tion­ship that’s not work­ing for them. Denise Knowles is a coun­sel­lor, fam­i­ly coun­sel­lor and psy­cho­sex­u­al ther­a­pist work­ing with Relate.

Denise Knowles: Psy­cho­sex­u­al ther­a­py works with peo­ple who are expe­ri­enc­ing sex­u­al dys­func­tions or sex­u­al pain or any kind of prob­lems in their sex­u­al rela­tion­ship. We work with them to work out what it is that’s actu­al­ly caus­ing them the pain, what’s caus­ing the blocks to them enjoy­ing themselves.

Evans: By pain, you’re talk­ing about men­tal pain?

Knowles: Men­tal and some­times phys­i­cal, because some­times in sex­u­al rela­tion­ships, if peo­ple have got oth­er con­di­tions, they’re liv­ing with oth­er prob­lems [and] that can cause them pain, so they might not be able to enjoy them­selves sex­u­al­ly as they once did. That in itself can actu­al­ly cause a sense of loss, a lit­tle bit of grief, a lit­tle bit of angst for the part­ner who per­haps is not liv­ing with any painful con­di­tions. So they will come along just to have a chat about how that’s affect­ing them psy­cho­log­i­cal­ly and emo­tion­al­ly, and to find a way for­ward, so that they can both get what they want.

Evans: Do peo­ple with chron­ic pain come to you for help with get­ting through their relationships?

Knowles: Peo­ple will come with all sorts of trig­ger points and chron­ic pain can cer­tain­ly be one of those trig­ger points. But I think it’s also impor­tant to say that some peo­ple will come along because they’re expe­ri­enc­ing pain that may well have been brought about through the dif­fi­cul­ties that they’ve already begun to expe­ri­ence in their rela­tion­ship, so we have to work out what comes first really.

Stress can cre­ate all sorts of chron­ic pain in our bod­ies, as can anx­i­ety, and so can depres­sion, so we have to work out what it is.  Obvi­ous­ly, when some­one is diag­nosed with chron­ic pain, the impact on the cou­ple-rela­tion­ship and indeed the fam­i­ly-rela­tion­ship can be immense and often needs to be talked through.

Evans:  What are the tensions?

Knowles: One of the ten­sions can be, some­one is liv­ing with a chron­ic con­di­tion that’s caus­ing them a great deal of pain, but won’t do any­thing about it.  They won’t help them­selves to help their rela­tion­ship. The ‘non-pain’ per­son will actu­al­ly say “Am I not impor­tant enough?”, “For good­ness sake, why can’t you do some­thing about that?”, or “You’re not the per­son I mar­ried” and “Why aren’t we doing this and why aren’t we doing that?”.  So they can start to have quite a lot of frus­tra­tion and per­haps some resent­ments, which can lead to argu­ments and once they start argu­ing then they can often start blam­ing and that blame can be very tox­ic in relationships.

Evans:  Now let me go back a lit­tle bit, how impor­tant is sex to a relationship?

Knowles: That’s a real­ly good ques­tion [laughs]. For some, it’s not impor­tant at all, for oth­ers, it’s uber-impor­tant. Then you’ve got a whole raft of peo­ple in the mid­dle — yes some­times it’s impor­tant and some­times it’s not.  But I think it’s one of those things in rela­tion­ships that, whilst it’s hap­pen­ing, it doesn’t mat­ter about the fre­quen­cy, but it’s hap­pen­ing, it’s ok. When it stops hap­pen­ing or it becomes less fre­quent and sat­is­fy­ing for one or the oth­er, then that’s when it becomes a prob­lem.  That’s obvi­ous­ly when peo­ple might come along to Relate to explore what that is all about, so it can be impor­tant, very and not at all.

Evans:  Explain how you work with a couple.

Knowles: Each cou­ple can be… well, they are unique, there’s no two ways about it. One of the things that is real­ly good about ther­a­py is that we haven’t got a one-size-fits-all kind of answer to their dif­fi­cul­ties.  Nor do we have mag­ic wands or crys­tal balls and I think that’s impor­tant to say too.

What we will do, par­tic­u­lar­ly in sex ther­a­py, is take an extend­ed assess­ment. We’ll talk to them indi­vid­u­al­ly and that might actu­al­ly uncov­er all sorts of real­ly deep-seat­ed beliefs about ther­a­py and also about sex, [e.g.] their atti­tude towards sex, how they’ve learnt about it, where they’ve learnt about it, what indeed they’ve learned about it, can all influ­ence how they are in their couple-relationship.

Once we’ve got all that sort of infor­ma­tion, then we can actu­al­ly look and say “Well, maybe we need to talk a lit­tle bit about this and bring you clos­er togeth­er in your atti­tudes, rather than actu­al­ly hav­ing you poles apart”.  Then what we can do, if it’s appro­pri­ate, we can actu­al­ly then start to give them some kind of behav­iour­al pro­gramme to go away and do at home, in the com­fort of their own home, and then come back and tell us how they’ve got on with that.

We’ll tweak that pro­gramme from there on in, but it’s very much client led. It’s not about the coun­sel­lor or the ther­a­pist say­ing “You must do this” and “You must do that” and “What? What’s the prob­lem with that?” there’s no judg­ment and it’s all very confidential.

I think that’s what helps peo­ple to feel safe about actu­al­ly approach­ing such orga­ni­za­tions as Relate.

Evans:  What do you mean by a behav­iour­al programme?

Knowles:  If you can imag­ine, par­tic­u­lar­ly in sex ther­a­py, there will be cer­tain behav­iours, this is why we do such an in-depth assess­ment.  If we come across some­thing that may be a cul­tur­al or a reli­gious aspect to their behav­iours, we have to actu­al­ly unpick that, par­tic­u­lar­ly in cross cul­tur­al /cross reli­gion type rela­tion­ships, so we’ve got to be very sen­si­tive to each of those things.

But if you can imag­ine a cou­ple that might have drift­ed apart because they’re argu­ing, or maybe there’s pain and there’s this busi­ness of not man­ag­ing it very well, they’ve stopped touch­ing one anoth­er, they may have even stopped cud­dling one another.

I’ve worked with peo­ple that even hav­ing a cud­dle can be painful, so actu­al­ly how do you help them to recon­nect at a phys­i­cal lev­el?  One of the things that we will do is ask them to put some time aside, per­haps to spend with one anoth­er and it depends where their start point is, as to where we take them or where we help them, guide them to actu­al­ly try dif­fer­ent touch, dif­fer­ent strokes, dif­fer­ent sen­sa­tions, take sex out of the pic­ture for a wee while, because that can put an enor­mous pres­sure on peo­ple, but actu­al­ly just to help them to recon­nect, often by just mak­ing the time to spend together.

Evans:  This brings me a lit­tle bit to some of the myths that sur­round sex, you know, it has to be twice a week, it has to be spontaneous…

Knowles:  Oh gosh, that word, spon­ta­neous [laughs].  One of the things that I will often say is, “Spon­tane­ity needs to be planned” and that takes me back to this idea of hav­ing time togeth­er, because if you haven’t got the time togeth­er, then you can’t have sex and if you’re always in a rush, you know, we can’t even have ten min­utes of lying down togeth­er, because I’ve got to get up and do this and I’ve got that to do and all the rest of it. Of course, that might be a bit of an avoid­ance and we’d have to under­stand what that’s about, but actu­al­ly, we have to have the time.

Once you’ve got the time put to one side, what you do with it can be quite spon­ta­neous, but you can’t start being spon­ta­neous if you haven’t got the time.  With the busy lives that we’re lead­ing nowa­days, we have to pro­gramme or diary in that time.

Once that’s hap­pened, once cou­ples have got time togeth­er, it’s impor­tant that they learn dif­fer­ent ways to be with each oth­er. Now, the way our brains are con­struct­ed, it’s a won­der­ful piece of plas­tic in here and the plas­tic­i­ty of our brain means that we can learn dif­fer­ent things and we’re nev­er too old to learn. So if we get peo­ple to repeat things, if we get our clients to actu­al­ly repeat cer­tain things, then, actu­al­ly new neur­al path­ways can be laid down, but there has to be a will­ing­ness and a deter­mi­na­tion com­mit­ment to doing that. So we will get them to prac­tice dif­fer­ent touch­es, dif­fer­ent sen­sa­tions, even relax­ing… peo­ple are not tak­ing the time to relax nowa­days and so ask­ing some­body to linger a lit­tle bit longer in the bath or the show­er, they’ll be going “I’ve got this to do or that to do…”.  It’s real­ly essen­tial that they learn about their own bod­ies and how to relax and that way they can then start to share those expe­ri­ences with their partners.

Evans:  That’s Denise Knowles, psy­cho­sex­u­al ther­a­pist with the char­i­ty Relate.  Phys­io­ther­a­pist Katrine Peter­son again.

Petersen: One of the key things that we need patients to get their head around is how safe is it for me to have sex­u­al activ­i­ty? There’s no point in build­ing up towards some­thing that patients don’t feel safe,  so we talk a lot about [the] chron­ic pain mech­a­nism, why some­thing can be painful even though it’s not caus­ing harm. That, of course, can have a mas­sive impact on the part­ner, they can be ter­ri­fied of hurt­ing their near­est and dear­est. So some­times, we invite the part­ner in just to hear that talk, and get their head around actu­al­ly, yes, it can be painful, but it doesn’t mean I’m caus­ing any harm and there are strate­gies to cope with that afterwards.

Evans: In your group ses­sions, do men and women think differently?

Petersen:  By and large, no, which is to some extent a sur­prise because we’re bom­bard­ed with myths about how men and women think dif­fer­ent­ly. But when you’re sat with groups, it’s exact­ly the same issues that come up and the same strate­gies that peo­ple need. There’s just an anatom­i­cal dif­fer­ence, of course…

Edwards: …and the same wor­ries about what will hap­pen if they can’t have sex reg­u­lar­ly, those are very sim­i­lar for men or women aren’t they?

Evans: Now, the oth­er thing I’d like to talk about is age groups. Do dif­fer­ent age groups react differently?

Edwards: I don’t think so.  What do you think?

 Petersen: You can tell that’s a bit of a hard ques­tion, we’re hav­ing to think about it…

Edwards: I mean the only dif­fer­ence there tends to be is that our younger patients tend not to be in long-term rela­tion­ships as much, so they’re more like­ly to be wor­ried about “Well if I meet some­one new, what am I going to say to them? How am I going to deal with it?”  Our old­er patients are more like­ly to be an estab­lished rela­tion­ship, but they may be sin­gle as well. I don’t think there’s much difference.

Petersen: I don’t think there’s much dif­fer­ence. I’m think­ing that maybe if a 20 year old says to me “In my rela­tion­ship, sex is not impor­tant, because I’ve got pain and that’s not an issue”, I would poten­tial­ly, and this makes me sound a bit prej­u­diced, but I may push it a lit­tle bit more.

Then if some­one, in the con­text of their part­ner being there, or their hus­band being there, and they’ve come to a part in their life where they’ve decid­ed that actu­al­ly, pen­e­tra­tive inter­course isn’t impor­tant any­more, not because of my pain, but that’s just what we decid­ed. I might be less inclined to push it, because that’s the deci­sion that some peo­ple make for all sorts of health issues.

Edwards: We see patients who’ve been mar­ried for thir­ty years and it’s still some­thing that they want to get back to, if it’s been on the back­burn­er for the last few years because of pain, just as much as a twen­ty-some­thing might want to get back to that area of their life as well, so I don’t think there’s much difference.

Evans: Well, sit­ting in on our con­ver­sa­tion is Meda Minard.

Minard: Yes I’m a gynae­col­o­gist from Den­mark vis­it­ing this clinic.

Evans: You were just com­ment­ing that you think there is an age group dif­fer­ence between the atti­tudes of young peo­ple and old people…

Minard:  I had a group ses­sion, just once, with old­er women and younger women hav­ing pain dur­ing sex. The old­er women are more open and already in this half hour con­ver­sa­tion in groups of six, they share their knowl­edge quite open­ly and often the young women below 25, I think, are much more shy, that’s very new to me.

Evans:  It’s very inter­est­ing because we sort of assume, in our per­mis­sive soci­ety, that sex is com­mon cur­ren­cy in schools and in uni­ver­si­ties and what­ev­er. You seem to think that it’s, or from your expe­ri­ence, if it is more com­mon, they’re keep­ing qui­et about it?

Minard:  Yes and I don’t think they learn so much about sex just being a nor­mal, nat­ur­al thing. They learn about chlamy­dia and HIV and con­doms and not how it’s a chal­lenge to have sex, it’s not so easy. The old­er women know that, that it’s not so easy, so they’re more relaxed, maybe.

Edwards: Yeah, I think that, in a way, for the younger gen­er­a­tion, there are even more myths about how sex should be and how peo­ple should be beau­ti­ful and always look good and always have an amaz­ing time. I think maybe when you’re younger, you maybe buy into those myths a bit more, as you’re say­ing. As you get old­er, then real­i­ty bites a bit more.

Evans:  Work­ing with young peo­ple and pos­si­bly more mature peo­ple in the same group, does the influ­ence of the mature per­son rub off onto the younger per­son, do they open up?

Minard:  I think that if there’s one per­son open­ing up in the group and giv­ing her advice to the oth­ers, if she has some­thing to share, it’s even bet­ter than if I, as a health pro­fes­sion­al, give them any advice. It’s much bet­ter if one of the oth­er women tell the youngest, this is my expe­ri­ence, try this…

Edwards:  Def­i­nite­ly, yes. One of the best ways of debunk­ing those myths is for peo­ple to have an open dis­cus­sion between them­selves because then, they can real­ly see that sex is not always spon­ta­neous, that peo­ple do plan it, that it’s not always amaz­ing, that some­times peo­ple don’t enjoy them­selves as much as they’d like to. As Meda said, in a way that’s much eas­i­er to hear than if it’s a pro­fes­sion­al talk­ing at you, so those group dis­cus­sions can be real­ly helpful.

Evans:  That’s Dr. Sarah Edwards of the Pain Man­age­ment Cen­tre Uni­ver­si­ty Col­lege Lon­don Hospitals.

Psy­cho­sex­u­al ther­a­pist, Denise Knowles, of Relate again.

Knowles: One of the things that it’s impor­tant to make clear here, is that there is a dif­fer­ence between sex and inti­ma­cy. But when we start talk­ing about sex, many peo­ple are just talk­ing about pen­e­tra­tive inter­course. When we start talk­ing about inti­ma­cy, we’re talk­ing about all the lux­u­ri­ous touch­ing and stroking and cud­dling and togeth­er­ness and the kiss­ing and all of those won­der­ful things that can take part.  Sad­ly, if peo­ple with­draw from that because they’re fear­ful they’re not going to be able to fol­low through with the sex­u­al inter­course, then the whole rela­tion­ship becomes a lit­tle bit like a desert and it’s devoid of any of that won­der­ful close­ness and inti­ma­cy and that in itself cre­ates prob­lems. So the need is more for inti­ma­cy, per­haps, than it is for sex, as we get old­er and as our con­di­tions change.

Evans: There’s noth­ing actu­al­ly quite like a cuddle…

Knowles:  Oh it’s won­der­ful, it’s almost a cure for any­thing and every­thing. But of course, there are peo­ple that are touch averse and again if some­one is expe­ri­enc­ing a lot of pain, even some­one touch­ing gen­tly their skin could set off all sorts of pain mes­sages to the brain. It’s very dif­fi­cult then to cud­dle.  I might be the one that needs the cud­dle and I might come up and want to give you cud­dle and actu­al­ly you can’t tol­er­ate that, so you will flinch and I’ll go “Ohh­h­hh…” and so the dis­tance imme­di­ate­ly starts to grow through a lack of com­mu­ni­ca­tion and understanding.

Petersen: Because of all the myths part­ly, peo­ple think “I can’t real­ly be inti­mate with my part­ner unless we go all the way and have pen­e­tra­tive inter­course” so there­fore I may com­plete­ly withdraw.

A lot of patients tell us that they com­plete­ly with­draw, they don’t like their part­ner touch­ing them, and they’re wor­ried about kiss­ing in case it leads some­thing that might be painful.  So even restor­ing the abil­i­ty to have some­one to hug you or kiss you could be the first step, just to draw out the inti­ma­cy that prob­a­bly was there at one point, with­out hav­ing to focus on the ulti­mate act of hav­ing sex.

Desen­si­ti­za­tion is based on the abil­i­ty of the ner­vous sys­tem to adapt, it’s a neur­al plas­tic­i­ty that you may suf­fer with sen­si­tiv­i­ty to touch but it does­n’t have to stay like that. If that’s also dri­ven by a large amount of anx­i­ety and stress about what this might lead to, then it can be real­ly help­ful to have this com­mu­ni­ca­tion tool where­by you say “we’re just going to do things in a step-by-step man­ner”. The first step may just be to work on tol­er­at­ing touch.

Evans: In your leaflet, you give the image of walk­ing on peb­bles with no shoes on for the first-time.  The first time, it’ll be very painful and then you get used to it. When was read­ing that, I was think­ing of my elec­tric tooth­brush and the first time you start using it, it’s unbear­ably tick­lish, but all of a sud­den, it’s gone.  That’s what you’re talk­ing about, the plas­tic­i­ty of the brain?

Petersen: Absolute­ly, just that ini­tial new stim­uli that you might not be used to and you would expect your ner­vous sys­tem to kind of kick up a bit of a fuss, going “Whoa, whoa, whoa… what’s going on here? Why are you kind of shak­ing your teeth? Why are you walk­ing on some peb­bles that seem unusu­al, because you’re not wear­ing shoes?”.  So you would expect your ner­vous sys­tem kick up a fuss and if you already have a chron­ic pain con­di­tion, that could be quite unpleas­ant. But hav­ing con­fi­dence, which is some­thing that we obvi­ous­ly sup­port patients with, but hope­ful­ly also our leaflet will bring the image to mind that actu­al­ly, in their quest to get to the water because it’s so enjoy­able to swim, they will get through that.  The more they do it, the more the body will get used to it and even­tu­al­ly the whole ner­vous sys­tem will accept this isn’t actu­al­ly harmful.

Evans: The ink is still wet on Pain Concern’s updat­ed leaflet on ‘Sex and Chron­ic Pain’ by Katrine Peter­son and Sarah Edwards. You can read it or down­load it from Pain Concern’s web­site at www.painconcern.org.uk.  Just go to the ‘Get Informed’ drop­down tab and you’ll find it with our oth­er leaflets. The leaflet rec­om­mends the char­i­ty, Relate for all kinds of resources and sup­port on rela­tion­ship issues, includ­ing sex­u­al rela­tion­ship dif­fi­cul­ties. And Relate’s web­site is https://www.relate.org.uk

Of course, I have to remind you 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. And don’t for­get that you can down­load all edi­tions and tran­scripts of Air­ing Pain from Pain Concern’s web­site. Once again it’s www.painconcern.org.uk.

I’ll end this edi­tion of Air­ing Pain with advice from Relate’s psy­cho­sex­u­al ther­a­pist Denise Knowles for cou­ples, one of whom has chron­ic pain, but both part­ners are aware that some­thing in their rela­tion­ship is missing.

Knowles: If I have a cou­ple where they’re both aware that some­thing’s miss­ing, actu­al­ly we’re halfway to get­ting some kind of result and solu­tion. The prob­lem comes when one per­son rec­og­nizes some­thing’s miss­ing and the oth­er per­son doesn’t.

But some­one liv­ing with chron­ic pain actu­al­ly has got an awful lot going on for them. They’re hav­ing to man­age a whole range of dif­fer­ent emo­tions and if they’re not able to share those, they’re so kind of dis­tant, they’re not going to notice some­thing’s miss­ing because they’re so wrapped up in their own world. That can be a bit dif­fi­cult because the per­son that feels some­thing is miss­ing wants to say it and bring it to the atten­tion of the rela­tion­ship with­out point­ing any fin­gers of blame, with­out actu­al­ly say­ing “If only you would this or you would that…” and with­out actu­al­ly hurt­ing the oth­er person.

Cou­ples usu­al­ly set up what I’ve come to refer to as a mutu­al pro­tec­tion rack­et — I won’t say any­thing to him or her because I know it’ll upset them, so it remains unsaid.  In the coun­selling room all of that has nowhere to go, it’s got to be talked to oth­er­wise, why are you here talk­ing to me as a therapist?

We can gen­tly, gen­tly under­stand the fears that often the per­son with the chron­ic pain is liv­ing with, with the dis­be­lief that this is hap­pen­ing to them and putting togeth­er their new place, their new sta­tus if you like and inte­grat­ing that into the rela­tion­ship.  Often the per­son liv­ing with­out the pain has no idea about the fears and the angers and the upsets and the lack of trust, the doubt that the per­son liv­ing with pain is now man­ag­ing with­in them, because no-one’s said any­thing, so that’s what we will do —  bring it out into the open, gen­tly, sen­si­tive­ly and with­out any judgment.


Con­trib­u­tors:

  • Denise Knowles, Coun­sel­lor, Fam­i­ly Coun­sel­lor and Psy­cho­sex­u­al Ther­a­pist with char­i­ty Relate
  • Dr Sarah Edwards, Psy­chol­o­gist, Spe­cial­ist in Abdom­i­nal Pelvic Pain at Pain Man­age­ment Cen­tre, UCL Hos­pi­tals NHS Foun­da­tion Trust
  • Katrine Pietersen, Spe­cial­ist Phys­io­ther­a­pist in Pain Man­age­ment, Chron­ic Abdomi­no-Pelvic Pain at Pain Man­age­ment Cen­tre, UCL Hos­pi­tals NHS Foun­da­tion Trust
  • Meda Minard, Gyne­col­o­gist from Denmark

More infor­ma­tion:


[1] The British Pain Soci­ety https://www.britishpainsociety.org/mediacentre/news/the-silent-epidemic-chronic-pain-in-the-uk/

[2] Robert Rothrock https://painconcern.org.uk.org.uk/sex-and-chronic-pain/

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