Vulval Pain Please Help Me

Posted , 4 users are following.

For the past 2 years I have been suffering with vulval pain and I'm grasping at straws for help as I have no where else to turn. No one takes me seriously and I am constantly pushed aside by doctors who can't see anything wrong and therefore I am supposedly absolutely fine. It is driving me crazy I feel broken and helpless with no where to turn.

It all began following a really bad urine infection which left me hospitalised for a few days, I was pumped with antibiotics and thankfully I made a speedy recovery. The large dose of antibiotics left me with a bit of recurring thrush which surely enough cleared up after a while. Although I was shaken from the experience I attempted penetration with my partner (after ensuring we were both clear of any infections/thrush and STI's) and it was incredibly painful which wasn't something I was used to! Further attempts left me feeling heartbroken and helpless. 

After begging my GP to refer me to a gynaecologist she finally gave in after they had done all the possible tests on me. The gynaecologist instantly suggested it was vaginismus and prescribed dilator exercises and a lidocaine gel. I completed exercises each night and sometimes I was successful and rather chuffed where as other days I would regress completely back to the smallest size. Incredibly disheartened I returned to the Gyne who suggested oestrogen cream to be applied into the vagina which once again I followed even though it was uncomfortable. You guessed it no success I then returned and mentioned how the urine infection had left me with an urgency to use the bathroom leading me down the bladder route in which I had an internal examination of my bladder which appeared healthy ruling out anything like IC or any underlying bladder conditions. I had a pelvic and transvaginal ultrasound which turned up nothing everything is completely healthy. I am currently being treated using PTNS for my urgency which seems effective however it isn't solving the issue I initially brought forward to my Gyne. 

Every medical professional I have visited is incredibly unsympathetic and unhelpful to my cause, I have had to sit through countless patronising appointments which often leave me bursting out in tears because I am not taken seriously and they just don't seem to care. I have even had an individual tell me in response to the question 'will I be able to have children if I can't even have sex?' that I can just be artificially inseminated it's not a big deal. As romantic as that might sound it was devastating to hear that this doctor would rather just swerve the bullet and not help me whatsoever. I am stuck on the Isle of Wight where no one seems to care about my problem or want to send me elsewhere to receive help.

This issue is really starting to impact my life and my relationship, sex isn't something that has always meant a lot to me but I want to be close with my partner again, I'm in such despair with this issue, no one seems to care or understand and I have no idea what I should do if anyone can offer any advice I would be so incredibly grateful.

Thankyou for your time,

Hopeless Vagina Owner

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7 Replies

  • Posted

    Dear Hopeless VO,

    I am so sorry to hear of your problem.  I had a very similar situation to you and I have since found out, by accident, that I was in fact allergic to the chemicals in the solanacea group of foods.  These are potatoes, tomatoes, chilli, capsicum, tobacco, eggplant and goji berries.  They all contain solanine and I found that, although I could tolerate them when younger, now that I am older, my liver had increasing trouble processing and inactivating the chemical, which was being stored in my tissues and causing increasing pain.  Like you it was painful to have sex with my husband, I couldn't even insert a tampon, and had increasing bathroom urgency.  After five years of increasing pain, I had gastroenteritis for a week and couldn't eat solids, but during that time my symptoms completely disappeared!  As I reintroduced solids after the gastro, I found the symptoms of pain came back big-time whenever I ate any of the solanine-containing foods mentioned in my list above. 

    I've now been pain-free for the past seven years, with the occasional relapse whenever I accidentally eat  anything with solanine added (some breads, for example, have potato flour, plus it's incredibly difficult to buy anything with just "spices" added in the ingredients list - it may or may not contain chilli.)  When that occurs, I take a big dose of antihistamine, which helps a little bit, although I've found the only remedy is to stop eating foods with solanine, I'm very sensitive to it.  

    Now, solanine may not be your problem - I've got a friend who can eat potatoes to her heart's content, but she has the same symptoms if she eats legumes such as peas, lentils, or beans.  I'd suggest you try an elimination diet - fast for a day, then introduce one or two foods from your normal diet each day and see if your symptoms change.  And do please keep me informed of your progress - I also went down the route of uncaring doctors and believe me, you have my sympathy!

    Bests,

    Minamii

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    • Posted

      Thankyou so much for your advice and more importantly your understanding! I will certainly give it a go I'm really up for anything at this point in time! I will keep you updated! smile

      x

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  • Posted

    I wish I could help you except that no one can help me either 😢 I’ve had severe vaginal itching for YEARS that no doctor can help me with. Hope you find an answer real soon!!!

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  • Posted

    Hey Ay vee, have you tried an exclusion diet?  I put up with gradually-worsening symptoms for seven years before I figured out what was doing it and since I've stopped eating foods containing the chemical solanine, I've been symptom-free for the past five years.  As I mentioned to Hopeless VO, it may not be solanines you're sensitive to, but an exclusion diet, which is a one day fast, then introducing food back one or two at a time over the next few days could help you to pinpoint the cause.  If it's food-related.  Anyway, the only thing you've got to lose is the painful itch!  I used to wake up every couple of hours, assuming I could get to sleep at all, scratching and in tears of pain.  Now, no problems, I can sit for as long as I like, have sex as often as I wish (assuming my partner is into it!) and no pain or humiliating trips to uncaring doctors.  It's brilliant.  I used to love all the foods that contain solanine, but giving them up is a small price to pay for my new life.  

    Minamii

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  • Posted

    Dear HopelessVO, it sound very much to me like you have vulvodynia. Back in 2013 I was diagnosed with vulvodynia following a bout of prolonged and recurrent thrush. Vulvodynia is a condition of the nerves whereby they become hyperactive and hypersensitive as a result of physical trauma, chemical trauma or infection. A food allergy can also cause it, as Minamii suggests. You can test yourself for vulvodynia by touching around your vulva area with a cotton bud and if you experience the touch as pain then it is vulvodynia. Neuroceptive pain like this is notoriously difficult to get rid of - it took me two years of multiple treatments, ups and downs and great determination. In afraid it will not go away on its own. I, and others, have shared our success stories in a discussion I started on this site called “how I cured my Vulvodynia”, in the vulval problems group. If you can’t find it, let me know. I am surprised your gynaecologist is not aware of this condition but I am afraid your experience is once I have heard many times - awareness of this condition is increasing among the medical profession but it still has a way to go yet.
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    • Posted

      Hey Suki, Thankyou so much for your response, vulvodynia is something that has always been at the back of my mind as I have a friend who suffers quite severely with it however my symptoms although similar differ quite a bit as I have no pain on the outside of my vagina nor any trouble with it in day to day life only when anything enters it. I understand there is a provoked type of vulvodynia called vestibulodynia which sounds more like my issue I have a big list of things it could be that over the years I have crossed off and those two still remain. Although my symptoms stop me from having sex I can imagine many girls much like my friend have much worse symptoms, is it possible I could just have a milder form of the before mentioned conditions? and if so would that mean it would be easier to treat? My gynaecologist doesn't believe I could have such conditions for some reason she doesn't think it is possible as I had always been able to have sex before, I am so desperate for a diagnosis and yet I've done every test thinkable! Thanks again for being so helpful I will certainly check out those websites!

      HopelessVO

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    • Posted

      I think everyone experiences vulvodynia differently just as everyone experiences pain differently. I would not like to presume that you have a “milder” form and therefore it will be easier to cure. Everyone is different and responds differently to treatments. You just need to find what works for you.
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