How to find a diagnosis?

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  • #37800
    Bweston
    Participant

    Hello,
    I’ve struggled with vaginal pain for about 5 years, with no luck getting a diagnosis here in the UK – I think I must have something along the lines of vaginismus or maybe vulvodynia but the Drs never seemed to recognise it as an option. So after a distressing series of appointments over a few years, I sort of gave up hope and just tried to ignore it – which is obviously a big obstacle on the course to finding a happy relationship.

    The NHS is wonderful for issues that are easy to diagnose but the process of trying to find someone who understands this has been very upsetting and demoralising. It’s been very isolating because it’s not something that’s easy to talk about with friends or family. I think I need to find a private specialist who can diagnose me and offer treatments, but I have no idea what to search for or how to find this here. Does anyone have any advice or knowledge about what to search for to find a specialist on these issues?

    #37846
    Jess567
    Participant

    I am located in the US so I know that our healthcare systems are different but I can tell you what I did and maybe it will be of some help. Unfortunately a lot of doctors, even gynecologists, are not familiar with vaginismus. I definitely went to a couple gynecologists who did not know what it was and did not take it seriously which was frustrating. It may take more effort but it is worth it to find someone who is familiar with the condition.

    What I did was directly call doctors offices and asked the receptionists if the doctor was familiar with the condition, sometimes they are able to check with the doctor and call you back so you can decide whether they may be a good fit for you. I had mixed results with this, but sometimes it works. I actually found my current doctor by calling a physical therapy place that I knew did pelvic floor physical therapy and asking them if they knew of any doctors in the area who were familiar with vaginismus. They gave me the name of a doctor who referred patients to them. I would google search gynecologists and physical therapy places that offer ‘womens health’, ‘vaginismus’, or ‘pelvic floor’ services on their websites and start from there.

    I hope you are able to find a doctor who is familiar with these issues soon!

    #38182
    recessivegenequeen
    Participant

    Hi Bweston – I’m so sorry to hear of your experience so far trying to get a diagnosis. A lot of us who have later been diagnosed with vaginismus or another pelvic pain disorder have experienced at least one medical professional who didn’t recognize the condition, including gynecologists.

    Jess567 gave excellent advice – even calling can be hard, but you can protect yourself from especially vulnerable medical situations by calling first and assessing whether a clinic or practice seems familiar with conditions like vaginismus or whether they treat them.

    I don’t know how close to London you are, but we’ve also got some really good information in this thread about getting botox in the London area – it tells you about some places that do the botox treatment if you ever decide to go that route and also talks about some places that have diagnosed people, so if those locations are at all accessible to you they’re useful to keep in mind as well:

    Let us know how it goes – help is out there and it’s unfair that you have to work so hard to find it, but you will find support if you keep looking!

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