How many people have been misdiagnosed with vulvodynia

Posted , 4 users are following.

so frustrated!! i have these lumps in my vulva next to opening, and a rash and just pain. have had this for the last few months. saw a "sexual health specialist" today and they told me not to get hung up on what everything looks like and that i have vulvodynia!!!

when i asked for medical imaging this dr responds with "im not requesting imaging to help with your anxiety"

there happened to be a GP next door, so i saw them after and they are sending me to a proper gynae.

how many others here have been branded as "vulvodynia" straight away?

0 likes, 17 replies

17 Replies

  • Posted

    i have too. even when i had strange discharge etc

    • Posted

      yes!!! i have the discharge as well.

      Its such an easy out option.

      did you end up getting a diagnosis?

  • Posted

    no i have had irritation / pain / discharge ranging from mild to moderate for around 3 months now. i think it might be recurring or persistent yeast infection as its very dry and sometimes swollen down there. im really not sure!

  • Posted

    i also have lumps but i sent a picture to sexual health nurse and she said it just looks like normal papillae but it might be HPV im not even sure. im going to book an appointment soon

    • Posted

      i think we have similar symptoms! its almost like a chronic thrush.

      i also have the little VP they are nothing to stress about... but they did start when the thrush started.

      the lumps i have are like hard masses of tissue under my skin

  • Posted

    Vulvodynia seems like a phrase to use when doctors dont know the answers. The causes of the discomfort need to be investigated.

    • Posted

      yes absolutely agree!

      everything looks totally different down there (swollen clitoris and inner lips). so it obviously is sore!

      the dr yesterday told me to not get hung up on the appearance... and that im within normal range so just deal with it. but it isnt normal for me!! so frustrating

    • Posted

      When did the swelling come on? Is the area red? What does "in the normal range" mean? Mine is red but not swollen. It is sore all the time however. Several scrips and lotions have not helped. What have you used?

    • Posted

      When did the swelling begin? What have you put on it? I have redness and soreness but no swelling and have used all the various meds and lotions. What have you used?

    • Posted

      It could well be vulvodynia. have u had tests for thrush bv etc?

    • Posted

      confirmed its a bartholin cyst. i think vulvodynia is unexplained vulvar pain... my pain is because i have had an infected cyst for nine months..

      ive had testing for thrush, was positive at the beginning of all this. cyst may well have formed from the initial infection!

    • Posted

      my swelling started about nine months ago and never went away.. has been quite red and sore. also really hurts to sit down!

      when i stand up i can feel a lump or bulge on one side.. apparently the cyst is deep. i went to a good specialist who was able to feel where it is

    • Posted

      could u please tell me whay all ur sumptoms were? itching? pain? what was ur discharge like? im suffering from something similar. did u have any groin pain? anything really

    • Posted

      i never really had itching. i do think this all started for me with some sort of infection, burning, swelling, rash.

      but then i developed this bulge next to my vagina opening, which is where alot of the pain is focused around (sharp pain and dull pain when i walk). i was told the bulge was most likely muscles sticking out because i have tight muscles. the physio confirmed that the bulge isnt muscles. so then i began trying to get more answers!!

      i do have runny discharge (no bad smell just alot) and white colour

      i really encourage you to demand your drs test for everything. biopsy, scans etc.

  • Posted

    Update:

    after nine months and numerous specialists i have finally found out i have a deep bartholin cyst. on antibiotics to see if they can shrink it

    • Posted

      oh really? thats great im glad you found your outcome. i hope all is well and it gets better!

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