Is it AV, vulvodynia or intersistal cystitis?

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I have posted before many times on this forum but am not sure whether it is the right forum for my problems.  I am just going to list some of my main sysmptoms and see whether anybdoy can relate to my problems

For years been suffering from burning senstation down below as if I have got a urine infection but no burning when passing urine and no urgency.  Abdominal discomfort for 24/7.  The pain is manageable and if I am busy I do not take notice I know it is there and it does not bother me.  Sometimes a slight discharge and itching.  I usually find out I have vaginal infection by routine test, am not aware of i as I always put the symptoms to AV.I am being seen by a gynae as I did suffer frm slight spotting and am waiting to have a hysterescopy.  She did mention intense vulvodynia in her letter to my gp.  When I mentioned about AV she said may be as it is quite pale and we did no go any further as she was not interested. Also declined taking hormone cream as they do not agree with me.

Vulvodynia I read some people said even doing an internal is uncomfortable for them.  I can tolerate internal or inserting pessaries or intimacy.   I still wear leggins or jeans and do not find it uncomfortable although been told it will aggravate the condtion.

 Intersistal cystitis.I am wondering whether it is a urologist I need to see.  Had blood and pus in urine but culture neg and gp still treat me with antibiotics, UTI about one a year.  I am thinking about intersistal cystitis as I am having problem with my bladder not completely emptying.  Post micturtion I have to sit on the toilet a little longer and let it dribbles.  I also feel something is pressing on my bladder.  I do not have any urgency but I usually get up 3 times during the night this is the norm for me.  I hope some more experince could offer some advice.  I am not sure whether I should have posted three different posts.  The symptoms are similar. I feel like a hypochondriac in and out of dr surgery.  Thanks.

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  • Posted

    See below...I'm confused can there be actual pain or are they calling the pain buring,  because I experience both off and on! I get the buring off and on too most time NOT when I urinate. ANYONE else get the actaul pain?

    What is Vulvodynia?

    Vulvodynia, simply put, is chronic vulvar pain without an identifiable cause. The location, constancy and severity of the pain vary among sufferers. Some women experience pain in only one area of the vulva, while others experience pain in multiple areas. The most commonly reported symptom is burning, but women’s descriptions of the pain vary. One woman reported her pain felt like “acid being poured on my skin,” while another described it as “constant knife-like pain.”

    There are two main subtypes of vulvodynia:

    Localized Vulvodynia

    [what_is_vulvodynia1] Many women have pain at only one vulvar site. If the pain is in the vestibule, the tissue surrounding the vaginal opening, the diagnosis is vestibulodynia (formerly known as vulvar vestibulitis syndrome (VVS)). (See diagram on right.) The majority of women with localized vulvodynia have Provoked Vestibulodynia (PVD), in which pain occurs only with touch or pressure, e.g., sexual intercourse, tampon insertion, a gynecologic examination, prolonged sitting and/or wearing fitted pants. A less common form of localized vulvodynia, known as clitorodynia (pain in the clitoris), may be very painful.

    PVD is further classified as primary or secondary. Women with primary PVD have experienced vestibular pain since the first attempt at vaginal penetration. Women with secondary PVD have experienced pain-free

    sexual intercourse prior to the development of pain.

    Generalized Vulvodynia

    [what_is_vulvodynia2] For women with generalized vulvodynia, pain is felt over the entire vulva or at multiple sites. (See diagram on the right.) The pain occurs spontaneously and is relatively constant, but there can be some periods of symptom relief. Activities that apply pressure to the vulva, such as prolonged sitting or simply wearing pants, typically exacerbate symptoms.

    Most women have either localized or generalized vulvodynia, but if you have symptoms of both types, it is known as mixed vulvodynia.

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    • Posted

      I have burning sensation all the time it is just like a nagging discomfor but not actually when I urinate.  I hardly notice it when I was on holiday and if I am busy.  When I am relaxing it can become very uncomfortable but I would not call it painful. The symptoms are more AV, I did say to my gp I will put up with av as long as there is nothing sinister going down below.  I have declined any hormone cream so she cannot help if I am not following her advice.
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  • Posted

    Hi, are you in the U.K.? You may like to look up Lichen Sclerosus as some of the symptoms may fit here such as pain/burning/itching/yeast infection/pale skin. If in U.K. We have vulva dermatologist you can get a referral to. Good luck.
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    • Posted

      Did the gyne do a colposcopy and take a biopsy of the vulva? mine didn't and said it was all in my head. My vulva dermatologist believed me and did the colposcopy and from there could see three patches to biopsy (can't see with the naked eye sometimes). Gyne's do not look at the skin, they are concerned with the physical function instead. Always worth checkimg all avenues.

      i searched the NHS database of vulva gynaecologists to find one near me and got my GP to refer me.

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