interview with dr. Ines Ehmer

dr. Ines Ehmer: Before I answer the questions I have to say that there are nearly no scien­ti­fic stu­dies on vulvo­dy­nia which meet the inter­na­tio­nal stan­dards. So the answers are based on the inve­sti­ga­tions which have taken place until today. For exam­ple it is hard to talk about per­cen­ta­ges, because all the data is estimated.

vulvo​dy​nia​.pl: What is the gene­tic com­po­nent in the deve­lop­ment of vulvodynia?

dr. Ines Ehmer: For so cal­led pri­mary vulvo­dy­nia (PV, vulvo­dy­nia which takes place alre­ady at first inter­co­urse or even ear­lier) it can be said there seems to be a cer­tain gene (Interleukin-​​1-​​Receptor-​​Antagonist 2,2 gene type) that can be found in 25% of women suf­fe­ring from this kind of vulvo­dy­nia. Women with this gene also seem to suf­fer more often from aller­gies, and the capa­bi­lity to fight local inflam­ma­tions seems to be dimi­ni­shed.
Women with this kind of vulvo­dy­nia also seem to have a con­ge­ni­tal abnor­ma­lity in the uro­ge­ni­tal epi­the­lium. This means that the mucous mem­bra­nes in the uro­ge­ni­tal area are gene­ti­cally chan­ged so that they are more sen­si­tive to pain.

Con­cer­ning the dyse­sthe­tic kind of vulvo­dy­nia (DV) there may be ana­to­mic chan­ges in the muscu­lo­sce­le­tar sys­tem which also can be hereditary.

I often find in the anam­ne­sis of women with PV or vesti­bu­lar vulvi­tis or inter­sti­tial cysti­tis that other female family mem­bers (grand­mo­ther, mother, sister, etc.) may have also suf­fe­red from these dise­ases, but maybe in a weaker form.

vulvo​dy​nia​.pl: Is there a link between vestibulodynia/​vestibulitis and dyse­sthe­tic vulvo­dy­nia? How often do they coexist?

dr. Ines Ehmer: I guess there is a link, but it is not (yet) pro­ven. There are also no real figu­res which allow an esti­mate about how many women are suf­fe­ring from both kinds of vulvo­dy­nia. So I can just say that my impres­sion is that there are a lot of women suf­fe­ring from both kinds. In any case both kinds of vulvo­dy­nia are nerve rela­ted, and both are situ­ated in the pelvic area.
Maybe they can influ­ence one ano­ther and spread and/​or maybe the mucous tis­sue of women suf­fe­ring from V is more prone to inflam­ma­tions in general.

In the moment these are just speculations.

vulvo​dy​nia​.pl: What kind of medi­cal disco­ve­ries do you ima­gine would allow a cure for vulvo­dy­nia to emerge?

dr. Ines Ehmer: If we fol­low the signs that there is a gene­tic cause, at least a gene­tic com­po­nent, then the pro­ject to disco­ver the genes respon­si­ble for cer­tain dise­ases may be very help­ful to deve­lop real curing tre­at­ments. But I guess that there will be a long way until this will be done, espe­cially in a dise­ase that is not yet known to many scien­ti­sts; even tho­ugh it is one of the most spread dise­ases women suf­fer from: aro­und 16 per­cent(!) of ALL women seem to suf­fer at least once in their life from vulvodynia.

For now we have to set all hopes in the scien­ti­fic stu­dies to disco­ver more and more com­po­nents of to the cau­ses. From that point new tre­at­ments have to be installed.

Fur­ther­more I regret very much that there are no topi­cal tre­at­ments (like cre­ams) ava­ila­ble in Europe which con­tain sub­stan­ces that give relief like anti­de­pres­sants. In the USA there are cre­ams with ami­trip­ty­lin and gaba­pen­tin – two sub­stan­ces which give relief – alre­ady ava­ila­ble. So women who respond well to these sub­stan­ces just have to treat the vulvo­va­gi­nal area and don’t have to take medi­ca­tion in a sys­te­mic way (in form of tablets etc.).

vulvo​dy​nia​.pl: What is the rela­tion­ship between vulvo­dy­nia and infec­tions? How do they influ­ence one another?

dr. Ines Ehmer: There is cer­ta­inly a rela­tion­ship, but the question is what was first – the chic­ken or the egg? I mean, are the infec­tions the cause of the vulvo­dy­nia, or does a women with a pre­di­spo­si­tion to vulvo­dy­nia get more and more infec­tions in the geni­tal area?
In case of vesti­bu­li­tis there is often a history of can­dida infec­tions. Women with recur­rent vulvo­va­gi­nal can­di­dia­sis seem to have a gene­tic aber­ra­tion so that their skin bar­rier is more resi­stant aga­inst the usual tre­at­ment. This could explain why some­ti­mes it takes six mon­ths or more intake of flu­co­na­zol to era­di­cate chro­nic vulvo­va­gi­nal candidiasis.

My per­so­nal impres­sion is that women who deve­lop vulvo­dy­nia after a lot of geni­tal infec­tions are gene­ti­cally prone to this dise­ase because of tis­sue damage.

vulvo​dy​nia​.pl: Is nerve damage or inflam­ma­tion an impor­tant ele­ment of vulvodynia?

dr. Ines Ehmer: Yes, cer­ta­inly, maybe the most impor­tant.
An incre­ased neu­ral acti­va­tion plays a big role in all forms of V. In PV and VV there can be found much more nerve endings in the vulva area than in tis­sues of women without V. These nerve endings are con­ti­nu­ously and per­ma­nen­tly bom­bar­ded by exter­nal irri­ta­tions so that after a while the signals in the spi­nal cord are chan­ged and this per­ma­nent pain or pain cau­sed by mini­mal touch deve­lops.
In DV the puden­dal nerve is dama­ged and there can also be many cau­ses of this. This is a spe­cial form of neu­ral­gia simi­lar to the much bet­ter known tri­ge­mi­nal neu­ral­gia in the face. It is the same but in the pelvic area.

These neu­ral aber­ra­tions can cause a so cal­led neu­ral inflam­ma­tion. Thus in exa­mi­ning the tis­sue you can find cells which are typi­cal for inflam­ma­tion without any signs of bac­te­rial or viral or can­dida agents.

vulvo​dy​nia​.pl: How do inter­sti­tial cysti­tis and vulvo­dy­nia relate? Are they two enti­rely dif­fe­rent entities?

dr. Ines Ehmer: If you have a look at the possi­ble cau­ses for both dise­ases, you will see, that they are over­lap­ping: vestibular/​urethral/​bladder tis­sue abnor­ma­li­ties, pelvic floor hyper­to­ni­city, incre­ased neu­ral acti­va­tion, a history of infec­tions, most cer­ta­inly gene­tic reasons – a full range of possi­bi­li­ties, some­ti­mes all together.

It is also evi­dent that a dise­ase or infec­tion in one part of the pelvic area can spread to ano­ther one.
Also women with these dise­ases often have a history of pelvic sur­gery.
AND the fact that there are so many women suf­fe­ring from both diseases.

So all in all we have to suspect that there is a strong rela­tion between vulvo­dy­nia and inter­sti­tial cystitis.

Many women also suf­fer from fibro­my­al­gia, dige­stive disor­ders, endo­me­trio­sis, migra­ine, Sjo­egren syn­drome, pain in the jaw, to name just some. Maybe there is a gene­ral pain dise­ase which shows up at cer­tain points of indi­vi­dual lower resistance.

vulvo​dy​nia​.pl: What do you think about using bio­fe­ed­back in vulvo­dy­nia treatment?

dr. Ines Ehmer: As pelvic floor hyper­to­ni­city – this means that the musc­les of the pelvic floor are too tight – is found at most of vulvo­dy­nia patients, a spe­cial tre­at­ment to relax them sho­uld be conducted.

This can be done by bio­fe­ed­back methods, spe­cial exer­ci­ses to stretch these musc­les, myofa­scial mas­sage or even oste­opa­thic the­rapy. The most impor­tant thing is that the the­ra­pist sho­uld have much expe­rience in the tre­at­ment of pelvic floor relaxation.

vulvo​dy​nia​.pl: At the moment there are no doctors in Poland who spe­cia­lize in tre­ating vulvo­dy­nia. Most women find out about the dise­ase on their own and strug­gle to find tre­at­ment. What would be your advise for them?

dr. Ines Ehmer: Unfor­tu­na­tely this is the situ­ation in nearly all of Europe.
So it is neces­sary that each woman will learn as much as she can about this dise­ase, sear­ching for as much infor­ma­tion as possi­ble.
The best exam­ple how this can work via a self-​​help group is the Natio­nal Vulvo­dy­nia Asso­cia­tion in the USA (www​.nva​.org).

They pro­vide women suf­fe­ring from vulvo­dy­nia with lots of infor­ma­tion mate­rials, and are sup­por­ted by foun­da­tions finan­cing scien­ti­fic studies.

As a group you always have more power than as a sin­gle patient to inte­rest not even doctors but also the public. It is dif­fi­cult for me to say, but without a cer­tain amo­unt of public lobby nowa­days you can­not reach any­thing.
So build up a network to give at least sup­port to each other in the begin­ning!
For the sin­gle woman I think if she knows what sho­uld be done she must try to
find a phy­si­cian wil­ling to help her.

vulvo​dy​nia​.pl: Could you tell us a bit about the methods you use in the course of tre­ating vulvodynia?

dr. Ines Ehmer: The first step has to be the cor­rect dia­gno­sis: As you know there are lots of infec­tions and skin dise­ases, also some sys­te­mic dise­ases, which first have to be exc­lu­ded. Vulvo­dy­nia is dia­gno­sed by exclusion!

Then it sho­uld be found out which kind of vulvo­dy­nia the patient suf­fers from and then start with the mil­dest possi­ble treatments.

For vesti­bu­lar vulvi­tis this is bio­fe­ed­back tra­ining, the use of a local ane­sthe­tic creme , or – if ava­ila­ble! – a cream con­ta­ining an anti­de­pres­sant. For women after meno­pause an estro­gen creme (which con­ta­ins estra­diol) might also be help­ful.
The next step can be the intake of (newer) anti­de­pres­sant medi­ca­tion and/​or antie­pi­lep­tics. As each woman does react in a spe­ci­fic way you can­not pre­dict which medi­ca­tion will help, you just must try!

The maybe last step which in the new­rer lite­ra­ture is said to be help­ful is an ope­ra­tion where the bad tis­sue in the vulvo­ve­sti­bu­lar area is cut out.

For dyse­sthe­tic vulvo­dy­nia with puden­dal nerve damage — besi­des bio­fe­ed­back methods — there can be done cor­ti­sol injec­tions into a cer­tain point near the sacral area. This some­ti­mes brings relief even for mon­ths. Also radio fre­qu­ency the­rapy is possi­ble as well as a trial with pul­sed magne­tic field the­rapy.
In some cases an ope­ra­tion to free the nerve from any adhe­sions may be helpful.

As in vesti­bu­lar vulvi­tis anti­de­pres­sants and antie­pi­lep­tics are a good choice.

If the pelvic floor is the most impor­tant cau­sal fac­tor injec­tions with botu­li­num toxin may also help.

In any case you have to go step by step, never loosing courage and hope to find the right the­rapy for you!

vulvo​dy​nia​.pl: Thank you very much!

Ines Ehmer, MD (1954) has a broad expe­rience that covers gyne­co­logy, uro­logy, chro­nic pain, and espe­cially chro­nic pelvic pain: vulvo­dy­nia and IC. A con­sul­tant and govern­ment expert for seve­ral years. She is also a jour­na­list and an author of a num­ber of books on vulvo­dy­nia and sexu­ality.
Dr. Ehmer is a mem­ber of nume­rous pelvic/​pain rese­arch socie­ties. She was prac­ti­cing until 2003 when she reti­red because of severe suf­fe­ring from IC and vulvo­dy­nia. Dr. Ines Ehmer is Ger­man and lives on Bali.