Beeld: Canva

mama_el83: “Acht jaar lang werd mijn pijn ‘zenuwpijn’ genoemd. Totdat dit niet zo bleek”

Deze diagnose kreeg ik vorig jaar, nadat ik acht jaar lang met onbekende pijnklachten rondom (en ook buiten) mijn menstruatie bleef rondlopen. Acht jaar lang. Waarin ik zelfs meer dan een jaar mijn klachten heb bijgehouden, met een duidelijk overzicht van wanneer de pijn het hevigst was. En toch werd het acht jaar lang afgedaan als ‘zenuwpijn’.

Totdat ik opnieuw een injectie zou krijgen en er op de echo een vreemde bult te zien was waarvan ik dacht: dit ís geen zenuwpijn. Na wat zoeken kwam ik een artikel tegen van Huisarts & Wetenschap, waarin alle symptomen werden beschreven die ik ook heb. Daarmee ben ik naar de huisarts gegaan en kreeg ik een doorverwijzing naar de gynaecologie.

Lang verhaal kort: op de echo’s konden ze niets vinden. Daarom werd via een biopt weefsel uit het pijnlijke gebied gehaald. De uitslag: er waren endometriosecellen aanwezig. Maar dan blijft de vraag: wáár zit het?

We zijn nu bijna een jaar verder. Eén operatie verder, waarbij ze weefsel van 6 bij 5 centimeter hebben verwijderd, waarin uiteindelijk géén endometriosecellen bleken te zitten. En ik zit nog steeds met dezelfde pijnklachten. De conclusie van de gynaecoloog: waarschijnlijk is de bloedtoevoer naar de endometriose weggehaald. De pijnklachten werden na de operatie wel wat minder, maar nemen nu weer maandelijks toe.

Vandaag heb ik daarom een bericht gestuurd naar de gynaecoloog met het verzoek om een verwijzing naar het expertisecentrum in Amsterdam. Hopelijk levert dit meer duidelijkheid op over wáár de endometriose zich nu bevindt.

Ik verbaas me er nog steeds over hoe lang vrouwen met onbekende klachten rondlopen, zowel rondom als buiten hun menstruatie, terwijl er nog zo weinig onderzoek en expertise beschikbaar is. Ja, er komt gelukkig steeds meer aandacht voor, maar wat mij betreft had dat veel eerder gemoeten.

Persoonlijk

Eveline (57) verhuisde naar Kinshasa en werd schooldirectrice

moedergevoel baby niet serieus genomen
Persoonlijk

Denise werd weggestuurd met zorgen om haar baby, tot het mis bleek

Duchenne spierdystrofie foto van gezin margriet
Persoonlijk

Toen het zoontje van Margriet zich anders ontwikkelde, veranderde één diagnose alles

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