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Transcript – Programme 87: Vulvodynia

From diag­no­sis dif­fi­cul­ties to defin­ing gen­der: the effects of vul­vo­dy­nia on women today

To lis­ten to the pro­gramme, please click here.

Vul­vo­dy­nia is a nerve-based pain, often described as a burn­ing or sting­ing sen­sa­tion, which affects the vul­va. 1 in 7 sev­en women are esti­mat­ed to expe­ri­ence Vul­vo­dy­nia at some stage dur­ing their life and the con­di­tion can be very dis­tress­ing to live with, impact­ing on every­thing from cloth­ing choic­es to relationships.

Dr Win­ston de Mel­lo explains why many women with Vul­vo­dy­nia expe­ri­ence dif­fi­cul­ties on the path to diag­no­sis and why GPs under pres­sure cre­ate a “post­code lot­tery” for those in pain with­out any vis­i­ble symptoms.

Dr Rebekah Shall­cross describes what she found in her research into women’s expe­ri­ences of Vul­vo­dy­nia, includ­ing instances of sex­ism on the part of some health­care pro­fes­sion­als, a lack of aware­ness of the con­di­tion with­in the med­ical com­mu­ni­ty and the stig­ma asso­ci­at­ed with gen­i­tal pain.

The role played by pen­e­tra­tive sex in social con­struc­tions of female iden­ti­ty can cre­ate com­plex feel­ings of guilt in patients with Vul­vo­dy­nia where phys­i­cal inti­ma­cy is prob­lema­tised by pain, feel­ings which Dr Shall­cross links with his­tor­i­cal gen­der inequal­i­ty and patri­ar­chal atti­tudes towards sex.

Gynae­col­o­gy con­sul­tant Dr David Nunns dis­cuss­es the impor­tance of the “four Ps” in patient treat­ment and improv­ing the lives of those with Vul­vo­dy­nia: patient edu­ca­tion, pain mod­i­fi­ca­tion, phys­io­ther­a­py and psy­cho­log­i­cal sup­port. Plus the impor­tance of dis­course in rais­ing aware­ness and reduc­ing pain and asso­ci­at­ed stress.

Issues cov­ered in this pro­gramme include: CBT: cog­ni­tive behav­iour­al ther­a­py, edu­cat­ing health­care pro­fes­sion­als, the Four ‘P’s, mis­con­cep­tions, pelvic pain, the psy­cho­sex­u­al approach, rela­tion­ships, sex, stig­ma, rais­ing aware­ness, Vul­val Pain Soci­ety, vul­vo­dy­nia, uro­gen­i­tal pain 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 health­care pro­fes­sion­als. I’m Paul Evans, and this is the first of two edi­tions fund­ed by the Women’s Fund for Scotland.

Win­ston de Mel­lo: I would reck­on one in sev­en women will suf­fer vul­val pain some time in their lives, and it’s a dis­ease that is frus­trat­ing to suf­fer from because there’s noth­ing to see usually.

Rebekah Shall­cross: A lot of women used the phrase ‘I feel like I’m going mad — is this all in my head?’ just because they were repeat­ed­ly told ‘I can’t see any­thing so there­fore there’s noth­ing wrong’.

David Nunns: Some of the women I see are quite dis­em­pow­ered by the whole process. They have tried to access health­care, but often the prob­lem has been belit­tled or they’ve been giv­en an inap­pro­pri­ate treat­ment and that’s been a barrier.

Paul Evans: The vul­va is the female exter­nal gen­i­talia, the sex­u­al organs, and vul­vo­dy­nia is a con­di­tion where there is no skin dis­ease, no infec­tion, but the patient com­plains of burn­ing, raw­ness or sore­ness in the vul­val area. Dr Win­ston de Mel­lo is a con­sul­tant in pain med­i­cine at the Uni­ver­si­ty of South Manchester.

Win­ston de Mel­lo: When you have vul­vo­dy­nia which is essen­tial­ly a nerve based pain it’s very dif­fer­ent from the clas­si­cal pain, like when you break a leg; the leg gets fixed and your pain goes away. With vul­vo­dy­nia, the ner­vous sys­tem is involved and con­se­quent­ly the nerve mis­fires. So patients with vul­vo­dy­nia will com­plain of burn­ing or sore­ness down below, they can­not tol­er­ate cloth­ing or [their symp­toms] might be pro­voked by cloth­ing, exer­cise, inser­tions of tam­pons or even sex­u­al inter­course. And you can see that the impact on their qual­i­ty of life is huge, and also on their part­ners’ and families’.

The trou­ble is you see what you want to see. So for the gen­er­al prac­ti­tion­er who’s got less than five min­utes to make a con­sul­ta­tion, if they’re lucky they may be sent to a spe­cial­ist – and this could be a gynae­col­o­gist, it could be in gen­i­touri­nary med­i­cine, it could be a vul­val der­ma­tol­o­gist, or even a pain physi­cian if there’s some­body inter­est­ed in that area – so I think it’s a bit of a postal code lot­tery as to where they go. And this is what starts that long process of mak­ing the diagnosis.

Paul Evans: Dr Win­ston de Mel­lo. Dr Rebekah Shall­cross is a trainee clin­i­cal psy­chol­o­gist and research asso­ciate at the Uni­ver­si­ty of Man­ches­ter. She pre­sent­ed a paper on women’s expe­ri­ences of hav­ing vul­vo­dy­nia at the British Pain Society’s Annu­al Sci­en­tif­ic Meet­ing in 2015.

Rebekah Shall­cross: My research is split into two dif­fer­ent parts real­ly. The first part is a review of the lit­er­a­ture that’s already out there. A lot of that lit­er­a­ture is around women’s expe­ri­ences with the sex­u­al nature of vul­vo­dy­nia and the impact upon rela­tion­ships. But also, that research comes from a dis­course analy­sis per­spec­tive, which basi­cal­ly means that it’s look­ing at how women talk about their expe­ri­ences, and it analy­ses how they speak about it and infers mean­ing. So they talked about the jour­ney towards a diag­no­sis as actu­al­ly being quite harm­ful, quite long, quite dif­fi­cult, quite emo­tion­al­ly draining.

Paul Evans: That was Dr Rebekah Shall­cross. Dr David Nunns is a gynae­col­o­gy con­sul­tant at Not­ting­ham City Hos­pi­tal. He is a trustee of the Vul­val Pain Society.

David Nunns: It’s actu­al­ly very easy to diag­nose, it’s a bed­side diag­no­sis. So we’d expect a health pro­fes­sion­al to take a his­to­ry, car­ry out a prop­er exam­i­na­tion of the vul­va using a good light, exclud­ing skin dis­ease and infec­tion. And then based on the his­to­ry and the exam­i­na­tion a health pro­fes­sion­al should be able to diag­nose it at the first vis­it. So it is an easy diag­no­sis: there’s no need for any biop­sies or addi­tion­al MRI scans etc which have been done in the past, so it is an easy diag­no­sis to make based on the prop­er assessment.

Paul Evans: Well, if that is so, why do some women report the jour­ney to diag­no­sis, as Rebekah Shall­cross was say­ing ear­li­er, as harm­ful, dif­fi­cult and emo­tion­al­ly drain­ing? Win­ston de Mel­lo again.

Win­ston de Mel­lo: It’s a dis­ease that is often con­fused with oth­er prob­lems; com­mon things are can­di­da or fun­gal infec­tions, uri­nary tract infec­tions or sex­u­al­ly trans­mit­ted dis­eases, or sad­ly some­times even the pre­ma­lig­nant states. So it’s a diag­no­sis by exclu­sion, like most chron­ic pain con­di­tions. The first thing you must be absolute­ly sure is that you have no red flags, i.e. no oth­er expla­na­tion for this dis­ease. So you’ve got to exclude the skin prob­lems, the pre­ma­lig­nant states, the malig­nan­cies and oth­er dif­fer­en­tial diag­noses, and that is why it’s impor­tant, to a cer­tain extent, the jour­ney that a patient has to go [on]. So quite often these patients will doc­tor shop, will see so many spe­cial­ists before the diag­no­sis is made.

Rebekah Shall­cross: They expe­ri­enced a lack of aware­ness of vul­vo­dy­nia with­in the health­care sys­tem. They encoun­tered atti­tudes from health­care pro­fes­sion­als that were par­tic­u­lar­ly unhelp­ful, feel­ing that some of the atti­tudes were sim­ply because they were women. So for exam­ple they felt that they were labelled as neu­rot­ic or as frigid, or that they just sim­ply need­ed to relax. ‘Get in the bath and have a glass of wine’ was some­thing that a lot of women had been told, which is obvi­ous­ly par­tic­u­lar­ly unhelp­ful when you’re in con­stant pain.

Atti­tudes around women and sex, again, so ideas that per­haps if they didn’t have a male part­ner that there wasn’t real­ly any­thing to be wor­ried about. All of these things – the atti­tudes of some health­care pro­fes­sion­als, I have to say not all, and the longevi­ty and the need to be very very per­sis­tent, to keep going back to your GP, to keep ask­ing for refer­rals, the need to do research your­self and look on the inter­net and see what clin­ics are avail­able and ask for refer­rals, and a sense of hav­ing to do all the work them­selves – all of those things had an impact on women’s lev­els of dis­tress and their lev­els of pain as well.

Win­ston de Mel­lo: Most doc­tors are trained to treat dis­ease first. So in pri­ma­ry care the GP is try­ing to exclude a poten­tial malig­nan­cy or some oth­er dis­ease process like inflam­ma­tion or infec­tion. There has to be a triage process by which the patient has got to have these dis- because obvi­ous­ly if you’ve got a dis­ease that results in vul­val pain then you’ve got to treat the dis­ease first, and then the pain that coexists.

But if you’ve exclud­ed all the red flags, i.e. all the dis­eases, then you’re left with this cohort of patients where there’s noth­ing to find. When I was in my youth these would be labelled as psy­cho­so­mat­ic or psy­cho­sex­u­al. Then it turned out that maybe it’s a der­ma­to­log­i­cal prob­lem so a lot of der­ma­tol­o­gists got involved, and then the neu­rol­o­gists got involved, so it’s a very com­plex inter­ac­tion [between] lots of fac­tors which is why some­times patients can fall in between the dif­fer­ent clinicians.

Paul Evans: Is there a par­tic­u­lar age when women might get this?

Win­ston de Mel­lo: Twen­ty or thir­ty years ago I would say this was a young woman’s dis­ease, late teens/early twen­ties. Now we’re find­ing [cas­es of vul­vo­dy­nia in] chil­dren even younger, in the ear­ly teens, and even in the post-menopausal lev­el, so it’s quite a big spec­trum with a big peak in the late teens ear­ly twenties.

Paul Evans: And you have no idea what caus­es it?

Win­ston de Mel­lo: We have some sug­ges­tions of why it might occur. It may be chron­ic infec­tion – pre­vi­ous expo­sure to infec­tions – it may be a virus; it may be drug induced; it may be trau­ma from repet­i­tive stress injuries, so it’s a con­stel­la­tion of sev­er­al things and the fash­ion changes as we get more information.

Paul Evans: Pain con­sul­tant, Dr Win­ston de Mel­lo. Dr David Nunns again.

David Nunns: When I did my ini­tial research near­ly twen­ty years ago we found that the aver­age length of time from the onset of symp­toms to get­ting a diag­no­sis was around two years, because of lack of aware­ness. I think that’s prob­a­bly come down in time in recent days because of bet­ter aware­ness amongst health pro­fes­sion­als and women, but also the inter­net as well and peo­ple access­ing information.

But there still seems to be a delay in access­ing the right peo­ple. So peo­ple almost get stuck at a lev­el of health­care and can’t get beyond that lev­el, and that’s what we real­ly need to address: get the right patients to the right health professional.

Paul Evans: So how do you address that?

David Nunns: The aware­ness of vul­vo­dy­nia at a health pro­fes­sion­al lev­el is very impor­tant; that’s at the lev­el of a GP, a gynae­col­o­gy ser­vice, der­ma­tol­ogy, gen­i­touri­nary med­i­cine ser­vice, and also a chron­ic pain man­age­ment ser­vice as well. So all lev­els of health pro­fes­sion­al deal­ing with women’s health prob­a­bly need to be aware of vul­vo­dy­nia, and I think we’ve made some progress there. But also enabling health pro­fes­sion­als to know when to refer on. Because if they’re not con­fi­dent in man­age­ment then they need to send on, and not all health pro­fes­sion­als are con­fi­dent or hap­py exam­in­ing the vul­va and tak­ing quite a per­son­al his­to­ry of some of the women.

I think the oth­er issue is the aware­ness of vul­vo­dy­nia in the pub­lic as well. Despite being in this very sex­u­alised soci­ety – much more so than twen­ty years ago – we have more aware­ness of vul­vo­dy­nia but we still have a great dif­fi­cul­ty for some women to come for­ward; to actu­al­ly see their GPs and to then get a refer­ral onwards. So there’s that empow­er­ment that some of our women need to make that first step. That again is dif­fi­cult because it’s a very iso­lat­ing, pri­vate con­di­tion: often many of our patients feel they can’t talk to any­one about it, they can’t share their problems.

Rebekah Shall­cross: Women often talk about things like believ­ing for instance that in order to be a woman you have to have pen­e­tra­tive sex, and so obvi­ous­ly for women with vul­vo­dy­nia that can be quite prob­lem­at­ic. Now we might call that a kind of social con­struc­tion: you know, to be a woman you don’t have to have pen­e­tra­tive sex and there’s lots of exam­ples out there of, for exam­ple celi­bate women or les­bian women or women who sim­ply don’t like to have sex, and who still iden­ti­fy them­selves as women.

So there’s lots of these social nar­ra­tives and dis­cours­es that women sort of sub­scribe to and believe in that can actu­al­ly be chal­lenged, and [it] can be help­ful for women to chal­lenge those social dis­cours­es because those things can cause psy­cho­log­i­cal dis­tress to women. So it’s not all about the expe­ri­ence of pain, it’s about what the expe­ri­ence of pain means to women.

Paul Evans: Do you mean women who choose to be celi­bate as opposed to women who can’t have pen­e­tra­tive sex, they do not choose to be celi­bate, so there are big­ger issues in their minds?

Rebekah Shall­cross: It’s not nec­es­sar­i­ly about celiba­cy, it’s about what we con­sti­tute as “real sex”. What a lot of women talk about is a loss of inti­ma­cy, but there are oth­er ways to be inti­mate with a part­ner. And you’re right it’s not to say that that’s not dif­fi­cult for women, but that there might be oth­er ways around that that don’t involve pen­e­tra­tive sex but can still involve plea­sure for women and also a sense of inti­ma­cy with part­ners as well.

Paul Evans: Rebekah Shall­cross. So is there a stig­ma involved in a woman’s deci­sion not to go to her doc­tor? David Nunns again.

David Nunns: The impact of vul­val pain on an indi­vid­ual is so vari­able. Some of our patients have a chron­ic pain issue, an unpro­voked pain that impacts on their dai­ly func­tion. And, as in any chron­ic pain con­di­tion, that real­ly does impact on the way they lead their life, and I don’t see, in that group of patients, that there is a stig­ma attached in going to a health pro­fes­sion­al and get­ting access to care. They need help, basically.

Where there is less of a day to day pain man­age­ment prob­lem but more of a sex­u­al pain prob­lem – with an unpro­voked pain aspect to their prob­lem, that might be the case as well – then I think the impact on the dynam­ics at home in a rela­tion­ship with­in, we call it the biopsy­choso­cial mod­el don’t we, where peo­ple are at home, liv­ing in the liv­ing envi­ron­ment and they’re func­tion­ing in the work envi­ron­ment, that can pro­duce a com­plex prob­lem that doesn’t nec­es­sar­i­ly lead them to access help. And it’s very easy just to for­get about the prob­lem in many ways. Whether that comes down to an embar­rass­ment or a sort of lega­cy of stig­ma I’m not sure. I think there are a lost group of patients real­ly who nev­er access care because they’ve not been able, con­fi­dent enough to come for­ward in the first place, and whether stigma’s attached to that I’m sure it is yes.

Rebekah Shall­cross: Guilt and shame are cer­tain­ly things that women talked about expe­ri­enc­ing in rela­tion to their rela­tion­ship, because they believe that as a woman they are expect­ed to pro­vide sex for men. Rela­tion­ships that were able to have what they term an egal­i­tar­i­an dis­course, which basi­cal­ly is an equal dis­course so that one per­son isn’t pri­ori­tised over the oth­er, in those instances the com­mu­ni­ca­tion between the part­ners was more open. Because of that they were able to have an open dis­cus­sion about what each oth­er want­ed, and that enabled them to both, kind of, come up with cre­ative ways to be inti­mate as a cou­ple and to be hap­py as a couple.

And an exam­ple of that in a paper that I was read­ing, one woman talked about com­plete­ly mov­ing away from her part­ner in terms of phys­i­cal con­tact – so, you know, not even hug­ging or kiss­ing because of where that might lead – and she was able to talk to her part­ner about that and he was like ‘Oh! You know I don’t care about that. If you want to give my bum a squeeze-’ I think was the phrase she used, ‘then that’s absolute­ly fine, that doesn’t mean we’ve then, you know, that that’s going to lead to some­thing that’s going to be painful for you’. So in that sense, because they didn’t pri­ori­tise the male’s need over the female’s need they were able to come to an arrange­ment that worked for them that they were both hap­py with.

Paul Evans: Is there still a lega­cy of what I guess was the Vic­to­ri­an idea of sex that the woman’s job was just to lie back, suf­fer and think of England?

Rebekah Shall­cross: Well it’s inter­est­ing you say that because that phrase was also used by some of the women. One of the women that I spoke to used the phrase – and again I have to stress that this was in some instances, gen­er­al­ly ear­li­er on in the jour­ney, when women got to spe­cial­ist ser­vices it was a kind of dif­fer­ent sto­ry – but yes, one of the women used the phrase ‘sort of like the Old Boys’ Brigade’. So, you know, women are going into these ser­vices and they’re often seen- it’s not nec­es­sar­i­ly about being a man in the sys­tem it’s about what kind of beliefs you have. So they encoun­tered dif­fi­cult atti­tudes from women as well. But yes, I think women did speak about sort of patri­ar­chal atti­tudes with­in the sys­tem; that was cer­tain­ly a phrase that one woman in par­tic­u­lar used, and her thoughts real­ly were around, eco­nom­i­cal­ly, women aren’t as impor­tant, so we’re not con­tribut­ing as much to the econ­o­my as a gen­er­al state­ment. And that was her view [of] why this was seen as unimportant.

Anoth­er phrase that was used a lot was if this was a man, would I be hav­ing the same dif­fi­cul­ties access­ing help? So a lot of women com­pared vul­vo­dy­nia to impo­tence and were say­ing that, actu­al­ly, if this was some­thing that was affect­ing men would there be more research into it and would I be able to access help more quickly?

Paul Evans: Rebekah Shall­cross. Win­ston de Mel­lo again.

Win­ston de Mel­lo: I think the most impor­tant thing is to reas­sure these patients that the nat­ur­al his­to­ry of the pain is not for­ev­er. Up to 70% of women would get bet­ter any­way if they didn’t even have an inter­ven­tion by the med­ical pro­fes­sion. So that’s the good news.

But what we can do is help that patient through their jour­ney, and it’s using sev­er­al strate­gies all at the same time. The most impor­tant being com­ing to terms with a chron­ic ill­ness, and I think the best sources of infor­ma­tion there are things like the web­site of the Vul­val Pain Soci­ety, just get­ting some basic, every­day stan­dards of care in place. And then you’ve got all your oth­er strate­gies: med­ica­tion and more com­plex inter­ven­tions, nerve blocks and in very rare cas­es surgery.

But prob­a­bly more impor­tant than all that is the psy­cho­log­i­cal sup­port, cop­ing with the dis­ease and know­ing that there are oth­er peo­ple around. So hav­ing patient study days that are run either local­ly or region­al­ly or nation­al­ly are just as impor­tant for the woman to realise she’s not on her own, and it’s not unique.

David Nunns: ‘There’s no doubt that peo­ple get bet­ter from this con­di­tion’ – what does that mean? In our out­comes when we look at what hap­pens to patients we’re look­ing for an improve­ment in their symp­toms, so their pain will go down, they will have few­er flare ups of pain in an aver­age week or month, their func­tion will improve, they might go out the house more, less time off work, doing more things that we often take for grant­ed, some­times their mood can improve because they’re in less pain, and the final out­come we look at is their con­fi­dence in self-man­age­ment. I would say that those are key out­comes for patients real­ly: less symp­toms, more func­tion, improve­ment in mood and con­fi­dence in self-management.

And we can see that across the board, I think about 70% of patients, improve and feel hap­pi­er with the treat­ment that they get. Now that treat­ment will vary accord­ing to the needs of patient, so some patients on a scale have very min­i­mal symp­toms and need sim­ple reas­sur­ance in self-man­age­ment, and some patients are very com­plex and need to be in pain clin­ics with a mul­ti-dis­ci­pli­nary team.

But essen­tial­ly we think of four ‘P’s: ‘P’ for patient edu­ca­tion and knowl­edge; sec­ond ‘P’ is the pain mod­i­fi­ca­tion through our pain mod­i­fy­ing drugs, either creams, gels or tablets, or even more advanced pain mod­i­fi­ca­tion; third ‘P’ is phys­io­ther­a­py or phys­i­cal ther­a­py to the pelvic floor mus­cles; and the fourth ‘P’ is the sort of psy­cho­sex­u­al, psy­cho­log­i­cal sup­port, CBT type strate­gies. So we can draw on quite a large evi­dence base of treat­ments and pull out lots of themes that work for women, and when we put them all togeth­er those four ‘P’s – and they all sort of go hand in hand – you get an over­all pack­age of care that often works. It’s a bit like mak­ing a sand­wich: you have your base lay­er and all your ingre­di­ents. I sort of say to patients don’t use just one thing in iso­la­tion, try and add in the dif­fer­ent lay­ers of those four ‘P’s to the over­all pack­age to get the benefit.

Rebekah Shall­cross: One of the key things that women said would help was to real­ly do a lot of research your­self. And I’m not say­ing you should have to, but once women got to ser­vices that were set up to help women with vul­vo­dy­nia then progress was made. I think pre­dom­i­nant­ly because women felt that their pain was tak­en seri­ous­ly, get­ting to spe­cial­ist ser­vices was impor­tant, and also mul­ti-dis­ci­pli­nary ser­vices were real­ly important.

So there was quite a few papers that looked at mul­ti-dis­ci­pli­nary groups that women could attend, so inter­ven­tion groups, and they looked at things like psy­chother­a­py to address the psy­cho­log­i­cal con­se­quences of hav­ing pain and also going through this sys­tem repeat­ed­ly, things like phys­io­ther­a­py, things like mind­ful­ness – they were all par­tic­u­lar­ly helpful.

Those are quite indi­vid­ual treat­ments, they are tar­get­ing women. What I would like to see more of is ways of help­ing women chal­lenge some of those unhelp­ful nar­ra­tives that we talked about ear­li­er. Those are some things that can be very dis­tress­ing for women if they buy into them, but if we can chal­lenge some of those things, move more towards that egal­i­tar­i­an dis­course as opposed to ‘I’m a woman and there­fore I have to pro­vide sex for my male part­ner’ then those chal­lenges might actu­al­ly be quite help­ful in terms of the dis­tress that vul­vo­dy­nia can cause.

Paul Evans: I mean you say ‘egal­i­tar­i­an dis­course’, dis­course would be quite good. Just peo­ple speak­ing to each other.

Dr Rebekah Shall­cross: Yeah, open­ing up com­mu­ni­ca­tion, absolute­ly. That is very dif­fi­cult for women, I think, to talk about, because there’s such a taboo around women and sex­u­al­i­ty, you know. It does take a lot of brav­ery, but from the women that I spoke to, their expec­ta­tions about how peo­ple react­ed – they thought that peo­ple would think that they were weird or that peo­ple would not real­ly under­stand. But actu­al­ly the women I spoke to who did speak to friends and fam­i­ly found that they were actu­al­ly very accept­ing of it, and that in itself, as you say, open­ing up com­mu­ni­ca­tion, was helpful.

Paul Evans: Going back to your first ‘P’, patient edu­ca­tion. We talked about get­ting infor­ma­tion off the inter­net; I’ve nev­er heard of vul­vo­dy­nia, I had to go on to Wikipedia last night to find out what it was. How do you increase the infor­ma­tion, or the way of find­ing information?

David Nunns: There’s often too much on the inter­net and it is con­fus­ing. And that’s why I always go back to those four ‘P’s because the mes­sage is so con­fus­ing for a patient. In that patients can know about vul­vo­dy­nia but what they real­ly want to know is the treat­ments – where do I go to, and who do I go to? I think that will always be an ongo­ing bat­tle with the inter­net and what’s avail­able. We would always say through the Vul­val Pain Soci­ety, because we know that many vis­i­tors don’t have a diag­no­sis, ‘you need to see a health pro­fes­sion­al’. We don’t want you don’t want to self-diag­nose vul­vo­dy­nia and you’ve got a skin problem.

The Vul­val Pain Soci­ety was set up in ‘93 as an infor­ma­tion sup­port net­work for women with vul­val pain. I set that up with a nurse in Man­ches­ter in ’93 with the aims of just pro­vid­ing some infor­ma­tion because at the time there was noth­ing at all. Over the years we’ve increased our web pres­ence and we’ve tried to be sen­si­ble and holis­tic about the con­di­tion, and we’ve cer­tain­ly been able to be the group that health pro­fes­sion­als refer to.

For the health pro­fes­sion­als we’ve a slight­ly dif­fer­ent tack real­ly. We intro­duced into the train­ing cur­ric­u­la of gynae­col­o­gy and der­ma­tol­ogy and gen­i­touri­nary med­i­cine doc­tors a manda­to­ry teach­ing on vul­val dis­ease, which includ­ed vul­vo­dy­nia. So for our gynae­col­o­gists of the future, who are see­ing most if not many of these women, the cur­ricu­lum in the past was quite poor­ly devel­oped, it was prob­a­bly one sen­tence. So we’ve changed that to include a prop­er assess­ment, his­to­ry and detail on basic treat­ment for vul­vo­dy­nia. So they have to do it basi­cal­ly, and when you make some­thing manda­to­ry it sud­den­ly gives it a plat­form. There’s a need for them to learn about vul­vo­dy­nia, which is a good thing I think.

Paul Evans: What advice would you give to a woman who thinks she has this?

David Nunns: The key thing for women who haven’t got a diag­no­sis who are expe­ri­enc­ing vul­val pain is they need to access a health pro­fes­sion­al who’s going to lis­ten to them, take a his­to­ry, exam­ine them. They can go along to their health pro­fes­sion­al with a men­tion of vul­vo­dy­nia and ask the health pro­fes­sion­al ‘do I have vul­vo­dy­nia?’ as a sim­ple question.

If they’re hap­py, if they’re sat­is­fied with their care, that’s fine. If not then I think there needs to be a next step real­ly. What we might call a clin­i­cal path­way, which is the jour­ney for the patient. That ser­vice might be gynae­col­o­gy ser­vice, it might be what we call a vul­val clin­ic, which is a clin­ic that’s ded­i­cat­ed to vul­val disease.

If a patient’s at the begin­ning of her jour­ney, she’s been diag­nosed with vul­vo­dy­nia, then I think she needs to read as much as pos­si­ble about the con­di­tion and look at those four ‘P’s. And this is dif­fi­cult for some patients. They have to take self-man­age­ment and take con­trol of their own care plan, you might call it, because at the moment the cur­rent sys­tem is quite frag­ment­ed and dis­joint­ed. And that’s quite do-able I think for many patients, not all.

And I think for those women who’ve got vul­vo­dy­nia and they’ve been liv­ing with the con­di­tion for many years, I think medicine’s chang­ing very rapid­ly. You know I think about where we are now, where we were five years ago, ten years ago, there are a lot more treat­ment options out there, both med­ical and non-med­ical. Just keep read­ing and keep a look out real­ly for new devel­op­ments because there are new devel­op­ments, things gen­er­al­ly are get­ting better.

Paul Evans: So what you’re say­ing is ‘Some­thing that didn’t work for you five or ten years ago, things have changed. Try again’?

David Nunns: Explore things again. The drug that might have been tried in the past, where the qual­i­ty of life was worse on it than off it, may have changed. So the sis­ter drug might be out now that might be bet­ter. That sis­ter drug might be a cream rather than a tablet, so it’s less like­ly to give you side effects.

Some­times you need to think out­side the nar­row focus and the med­ical mod­el. Some of my patients have had tremen­dous improve­ment with psy­cho­log­i­cal ther­a­pies and psy­cho­sex­u­al input. It was nev­er offered per­haps in the past, but the offer may be there now.

Phys­io­ther­a­py, I think, has been an under­used treat­ment in the past. Prob­a­bly more or less non-exis­tent ten years ago for this prob­lem, less so five years ago, but now phys­io­ther­a­pists are very inter­est­ed in this con­di­tion. So it’s just open­ing your eyes again and hav­ing a refresh real­ly at what things you’ve tried and what you could try in the future.

Paul Evans: That’s Dr David Nunns, gynae­col­o­gy con­sul­tant at Not­ting­ham Uni­ver­si­ty Hos­pi­tal. The address for the Vul­val Pain Soci­ety is http://www.vulvalpainsociety.org. I’ll just 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.

Don’t for­get that you can down­load all edi­tions and tran­scripts of Air­ing Pain from Pain Concern’s web­site which is https://painconcern.org.uk.org.uk/. There you’ll find infor­ma­tion and sup­port for those of us liv­ing with chron­ic pain, our fam­i­lies and car­ers, and for health­care pro­fes­sion­als. There’s also infor­ma­tion on how to order Pain Concern’s mag­a­zine, Pain Matters.

In the sec­ond of these two edi­tions of Air­ing Pain sup­port­ed by a grant from the Women’s Fund for Scot­land, we’ll be explor­ing how the con­di­tions of Inter­sti­tial cys­ti­tis, Painful Blad­der Syn­drome, impacts on the lives of women who have the condition.

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 or watch telly.

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

Paul Evans: Painful Blad­der Syn­drome, its effect on women’s lives, and how to man­age the con­di­tion will be in the next edi­tion of Air­ing Pain. That address for the Vul­val Pain Soci­ety once again, it’s http://www.vulvalpainsociety.org. Now, to end this edi­tion, a bit of good news for those who think their doc­tors don’t lis­ten to them!

Win­ston de Mel­lo: I am proud to say that I have learnt more about vul­vo­dy­nia from my patients than from my clinicians.


Con­trib­u­tors:

  • Dr Win­ston de Mel­lo, Con­sul­tant in Anaes­the­sia and Pain Med­i­cine, Uni­ver­si­ty Hos­pi­tal of South Manchester
  • Dr Rebekah Shall­cross, trainee clin­i­cal psy­chol­o­gist and a research asso­ciate at the Uni­ver­si­ty of Manchester
  • Dr David Nunns, gynae­col­o­gy con­sul­tant at Not­ting­ham City Hos­pi­tal. He is a trustee of the Vul­val Pain Society.

More infor­ma­tion:

Comments

Not enough men­tion of accom­pa­ny­ing urine fre­quen­cy and urgency and treat­ed as cystitis.
Added com­pli­ca­tion for post menopausal women and atroph­ic vagina.
Miss­ing out on cer­vi­cal smears because of pain caused by stretch­ing vagi­nal entrance. Missed mine pre 2009.
Dis­abil­i­ty cre­at­ed by chron­ic pain.
Regards Hazel

Broadcast Assistant

Hi Hazel,
Thanks for your feed­back — our next episode is on Inter­sti­tial Cys­ti­tis (aka Painful Blad­der Syn­drome) which I think might address more of these issues. It’s due to be broad­cast Tues 14th March at 8pm, with the pod­cast and tran­script avail­able on our web­site short­ly after.
Female uro­gen­i­tal and sex­u­al health, how­ev­er, would cer­tain­ly ben­e­fit from being men­tioned more in gen­er­al! For exam­ple, this BBC doc­u­men­tary on the Menopause was inter­est­ing and will hope­ful­ly help tack­le some of the stig­ma sur­round­ing con­di­tions asso­ci­at­ed with it: http://www.bbc.co.uk/iplayer/episode/b08fmspd/the-insiders-guide-to-the-menopause?suggid=b08fmspd
Thanks again for your feed­back and vis­it­ing Pain Con­cern’s web­site, it’s great­ly appreciated.
Kind regards,
Rebecca

Comments are closed.

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