25 Desperate vulvodynia sufferer

Hi there,

My name is Amy and i'm from Birmingham UK. I am so glad I found this forum as it has made me realise that a) i am not alone with symptoms/feelings and b)i'm not mad!!

I was originally diagnosed with suspected Vulvodynia about 5 years ago, via q-tip test, at the entrance of my vagina. I was only offered surgery as treatment, which I declined as I didn't feel it was the right option for me at the time. The pain mostly only affected me during sex or tampon usage which I was still able to live with and get around. I went to see a sex therapist who suggested I may have vaginismus. She gave me a few pointers on making sex easier and, to be fair, they did help.

Other than that I had no other issues until about 8 months ago when I suddenly started with a constant burning, sore sensation just inside the outer labia. I was treated for BV with antibiotics, then thrush with creams and pessarys. I think this is a familiar story. I was finally sent to a consultant at Birmingham City hospital who did the q-tip test, poked the same area and said Vastibulitis or vulvodynia. He ignored the area that is actually giving me the discomfort as this doesnt hurt when touched, only when I sit down with trousers on. I again was offered surgery or nothing.

I have found that it gets worse closer to my period and can ease off when I am actually on, though it does vary a bit. I have tried all the allergen routes, changing washing powder, underwear, bedding etc. I can now only wear very loose fitting cotton trousers and even they are becoming unbearable enough that I might switch to skirts. I suffer a lot with eczema so keep wondering whether it could be related to that but nothing I try seems to help so maybe that would be too easy.

I am sorry to moan as soon as I get on here but I am so stressed out and uncomfortable. Not a day goes by when I am not crying about it. I am supposed to be getting married next year but I don't feel like I while I am like this!

From what I have seen many of you suffer far worse than me and so my heart really does go out to you. I am desperate for any advice though! I don't know where to start or even if what I have is vulodynia. I am even willing to pay for private healthcare but don't know how to find an expert in my area. Any advice would be really appreciated, thank you so very much!

Yours desperately,

Amy x

Hi Amy, just wanted you to know you're not alone - I'm also from Birmingham, and was diagnosed with V back in September
I don't have much that will help you unfortunately as I'm still finding my own way around, but from my experience I would give the following pointers!
- See several doctors and try to get referred to a specialist. I live near Solihull hospital and they have been fairly helpful. Ask your doctor to contact someone who knows more about vulvodynia so that you can try to be properly diagnosed and are happy with your diagnosis.
- When you go to an appointment, make sure you have plenty of questions and know what you want answered. It is a difficult condition to describe to another person so writing it all down is helpful.
- I would very much not recommend hydrocortisone cream as many others will tell you - often first port of call for doctors who I think are just hopeful and trying to get rid of you, I don't know anyone that it's worked for. Personally I gave up on it after less than a week as I had to take 2 days off because the burning pain was so intense when I tried to urinate in the mornings, I felt almost faint from pain and had to lie in a bath for several hours to try and wash it all off. So.. avoid that one!
- Anaesthetic gels such as lidocaine might really help you. I use a gel called instilagel which can be easily prescribed and it takes some getting used to but helps me a lot.
- Don't wear any bottoms to bed at night, breathing is essential for the painful areas.
- If you're on any medication such as the pill, it may be worth looking into whether this is causing you any problems as there has been some evidence of the pill causing V.
- If you have any questions I'm sure the people on here can help or feel free to message me. I'm no expert but I know how you feel - I am about to start my first tricyclics with amitryptaline that I was prescribed at the beginning of the week.
- Enjoy the little things and STAY POSITIVE. Your current level of pain does not have to be forever, never forget that there is so much more to life than the bastard 4 inches between your thighs! Haha.
Good luck with everything

Also if you haven't already tried, don't use tampons but use 100% cotton sanitary towels for your period. I used to just use Always ST's but found these irritated my vulva a lot during periods. x

Thank you. that's some really great advice. some of it, like sleeping bothomless, I already do through having no choice but I had never thought of changing my pads. in fact now I think about it they do definitely make me itch. I suppose the thing I don't understand is why? Why did this problem suddenly start? I came off the pill a couple of years ago to help with painful sex and it worked until this problem started. I keep thinking maybe its because I live in a hard water area and my eczema is worse than ever and my boyfriend has started with eczema too. maybe that's wishful thinking....

What are tricyclics? I've heard them mentioned a few.times

There can be a variety of reasons for vulvodynia, or seemingly no reason at all - don't beat yourself up about something you may have done to make this happen to you, there is often no concrete reason for vulvodynia, which is why it is so hard to get rid of.
Some things to think of are whether you began any new medication, had any STI's or UTI's (I personally think my V started after a very bad UTI in February last year, which was then followed by another, and then my V started).
Visit your GP again and ask to be referred for the following which might help;
- If you haven't already, see a gyn, preferrably one who knows a bit about vulvodynia.
- Also arrange to see a woman's health physio as there might be some trouble with your pelvic floor, such as it being too tight or unstable. I currently see a physio at Solihull hospital - I don't think that my V is really a pelvic problem, though there may be some spasming down there that I am trying exercises for in the hopes that it helps my V. It is definitely worth ruling out however.
- You could request to see a urologist or a uro-gyn. My doctor does not want to refer me to a urologist as they would probably perform a cystoscopy (I feel a lot of my pain is located around the urethra as well as the vestibule, but hey ho) and she would rather invasive methods such as this be a last resort. But see what your doctor says.

http://www.vulvalpainsociety.org/vps/index.php/vulval-conditions/vulvodynia
this website was the first website I visited when diagnosed and it was pretty helpful for me, it also has several useful links. It will explain several types of medication such as tricyclics etc.

Things that have helped me over the year are lidocaine gel so get yourself some of this. Baking soda baths also helped me for a while, as my urine was very acidic and irritant - unless baths cause you a lot pain, just run a bath and put about 4 teaspoons of Bicarbonate of Soda in there and soak for 20 minutes or so. You can get Bicarb from a chemist or just from a supermarket (get bicarb instead of baking soda - baking soda in the UK sometimes has other stuff in it and its better to have pure BoS).

Mentally I also find it helps to not read too many stories; focus only on helpful information and people who are finding relieve in medications. Everyone is very different, and V doesn't have to be forever. I'm sure there are many people out there who have had vulval problems and never written about it on the internet because they were too busy moving on with their lives once they were rid of it! Your case is individual to you and there is as much reason to be positive as there is to be cautious - no matter how long you're stuck with it, there is always hope.

it would also be worth noting if urination makes your pain worse - for a week or so i'd try keeping a pain diary, noting every day whether the pain was constant, rating it on a scale of 1 to 10 with 10 being writhing-around-on-the-floor level pain, whether it went up and down during the day etc. You mentioned some relief on your period, which suggests a hormonal relation to your pain - mention this to your doctor, or just keep it in mind. I can't tell you much more on the hormonal front as unfortunately I don't know much about hormone relation to vulvodynia either!
Also, as I said some things work for some people and not for others, so if anything such as BoS baths or any medication seem to have a really negative effect on your V stop using them immediately. Hope this helps!

Hi Amy - welcome!

You might want to try your local GUM clinic (Genito-Urinary Medecine) - my GP kept treating me with thrush even though my tests came back negative and it was only when she referred me to the GUM clinic that I was finally diagnosed by a doctor who knew about the condition. The advantage of GUM clinics is that there isn't usually a long wait to get an appointment (you don't even need to be referred) - you still have to hope that someone there will be familiar with the condition but its another route to try.

Also if you think eczema might be a factor maybe your GP could get you a referral to a vulval dermatologist?

Few simple things that i've found helpful -
- changing to Natracare sanitary pads (all organic natural stuff) you can get these from Oxfam, Waitrose or on-line. I find these hardly irritate me at all.
- good old Vaseline is about the only thing I can tolerate down there (useful for creating a protective barrier if your urine or discharge causes discomfort/pain).
- water only is recommended for washing your vulva but I don't feel clean without some sort of soap! I use E45 emollient shower cream which works for me.
- I also sleep with a small cushion between my knees which seems to ease the pressure a little on my vulva when I sleep on my side
- getting stressed out when i'm having a flare up or a bad day definitely makes things worse for me so I try to make sure i relax - drinking camomile tea, lying on my back with my knees up and deep breathing into my stomach helps me relax (obviously only drink the tea while you're sitting up lol!)

Also I agree with Penfebruary - don't overdo the internet research! I did in the first few weeks of diagnosis and it just sent me into a bewildered panic. Maybe choose one topic/aspect at a time? This forum is a great resource.

Good luck!
Lx

Thanks everyone :-) lots of food for thought and I already don't feel so bad about it. am going back the doctors to discuss the diagnosis in a couple of weeks. obviously it takes a consultant 3 weeks to sign and post a form!

Off to bruges this morning, in my summer skirt for comfort of course :-D. will check in when I'm back next week. Take care all x

Hi

My heart goes out to you, vulvodynia means I am stuck in the house 24/7, suffered for 4 years but it wasn't this bad until 2011. However, many women only suffer at certain times of the month and some just randomly get pain every so often, it varies so much as you will see from other ladies stories on the forum!

Anyway I just wanted to say I live near Birmingham and if you ever get referred to anyone at City Hospital or Heartlands and want to ask any questions about the consultant you are seeing or treatment offered...from someone that's tried all the creams and tablets, pretty much everything except the surgery infact (which I have been offered but am very reluctant to say yes)...please feel free to ask me anything. At City Hospital in december I had steroid and local anaesethetic injections which in my opinion have made me much worse, so if you ever get offered these ask lots of questions as I didn't really have chance as I always feel like they are rushing through the appointment!

hope you find a treatment that works for you and get better soon! x

hello!

I live in Cheltenham and have been going up to Birmingham to see the doctors up there...ive done the rounds in London, oxford, Gloucestershire etc etc.

Im seeing Professor Luesley at the mo, I forget the exact place but its in Edgebaston xx

Hi all,

Thanks for all your advice. Just got back from Bruges. Had a fab time and have barely been sore the entire time I was there which is great! :-D However, I have been wearing skirts the entire time AND i came on my period so not sure which it is that eased my symptoms. At the moment though I don't care!

Naomi - Is it the Queen Elizabeth by any chance? Or the priory? Can I ask how has Birmingham compared with the rest of the places? Determined to find the best consultant I can.

Smile22- Thanks for that. Will be really useful actually. I am currently, technically under Mr Baghdadi at the City if you know him? I say technically as basically he has diagnosed Vulval Vastibulitus at the entrance to my vagina, offered surgery and packed me off with no information now for nearly 3 weeks! Is there any consultant in particular who understands vulvodynia in your opinion?

I think the most frustrating thing isn't just the pain and discomfort but it is the fact that we are having to do this all on our own. Luckily for me I have a Biochemistry degree so my doctor knows I have a sound knowledge of medicines, hormones, diet etc so he tends to take me quite seriously. Shame the hospital doesn't and I feel sorry for people who's doctors really don't take them seriously. We will all get there though I'm sure!

This is the guy I'm seeing. Out of the last 10+ specialists I've seen he seems to b the one with his head screwed on and not throw every cream and ointment under the sun at me. Also very good to talk to with a sense of humour and empathy...which a lot have lacked.

I'm not sure if u can see him on NHS but here r his details...

http://www.bmihealthcare.co.uk/consultant/consultantdetails?p_name=David-Luesley&p_id=40587

Thanks Naomi. I know the priory and it has a very good reputation. To be honest I tried signing up for private healthcare but because I have had these symptoms for years they won't insure me ?!

I am supposed to be getting married next year but I am tempted to postpone and pay to go to the priory instead. I really like the sound of that man having read about him, I always fancied the priory anyway plus my symptoms at the moment aren't to bad so maybe I can kick it now before it gets worse.

Again, thank you and I really hope you manage to get sorted soon :-) Wishing you pain free days

Well I'm booked in for vestibulectomy next month...Ohhhh lordy. Hi reckons he has 80% success rate...I'm tired of looking for other cures now...3years since it got bad.

Yeh he will listen to ur gynae history and ask questions.

Ooh well good luck Naomi! You will have to let me know how it goes as I was offered that as well but wasn't sure it was right for me plus i'm a total wimp. Beginning to think I might just go ahead and see what happens!

Yeh I've just got to that stage now...I'm fed up of trawling the net day after day for the last 3+ years!

Bricking it about the surgery already and its a month away...wat the hell am I gona b like the day before shiiiit!

I haven't seen him before. Surgery should be a last resort. Ask about having lidocaine cream/ointment 5%, it is numbing and as you don't have pain all the time it might really help you when you have a flare up. I've never found any relief from tablets but lots of women do, so there are many options like gabapentin, lyrica etc. Make sure to drop some names into your appointments and you might find something that works for you. (If you haven't already tried these of course!! Sorry if you have)

I see Professor Leusley 'or a member of his team' at City hosp - usually end up seeing Professor Yapp, he is quite good but I do find that he asks the same questions over and over so I don't feel listened to sometimes. I have only got to see Prof. Luesley once and he was good - he explained things pretty clearly. They understand the ins and outs of vulvodynia well compared to other crappy rude (don't get me started lol!) doctors I've seen that don't have a clue. Ask your doctor to refer you there perhaps? There's no miracles but it's definitely the best place I have ever been to. That's what I had to do because my mom's friend is a midwife and she knew of him so I dropped his name to my GP and asked to be referred there and shortly after I got an appointment . I'm not sure if you're in the exact same department I'm in, but if not I would recommend it more than anywhere else I've been which is saying something because I've seen a LOT of doctors.

Yeh I've been on all sorts over the years...amatript', gabapentin, lycrica, gynodactarin (and all the usual creams and ointments). The lidocaine 5% proved prof luesleys theory of it being vestibuldynia. It's ok to use at the time but doesn't last long.

Yeh this lot in Brum seem to b the most knowledgeable with regards to V...not that there is a lot to know quite frankly (man I wished they'd research into this more!!).

He's emailed me back some questions I had about the vestibulectomy offered...I'm pretty sure I'm gona have to go ahead with it. Dohhh!

Ahhh I'm so angry. city hospital have said I have one small are of.discomfort which is vulval vestibulitus and that since I have refused surgey I have been discharged. I already had vestibulitus! I told him that. it's the new constant burning I went about. he's blamed Eczema and said steroids creams. I've tried them already. it's not Eczema! Argh. sorry rant over

Ok guys. I promised God that if he helped me find a cure for this horrible, life ruining, afflicting, 24/7 misunderstood condition, I would share it with everyone, as I have done TIRELESS research, read every book, scoured the net, and consulted with many doctors. Im 32 years old.
Ive always had a problem with painful sex, and a constant burning vag, but recently I was diagnosed with something far more horrible. Interstitial Cystitus.
Painful Bladder syndrome. Many women with Vulvodynia, many times have interstitial cystitus aswell, and I do frequent UTI's and I control them with a daily probiotic, but this particular bladder infection would not go away. Guys, this condition has literally ruined lives. Women hav e to go on disability for it. Imagine a voracious, raging UTI that never goes away. ever. and there is no cure. Its one thing not to be able to have sex, or sit for too long, or wear anything tight. But to be aware of constant, swollen, urethral frequency and burning, having to go to the bathroom every five minutes, cant sleep thru the night, the pain is compared to Cancer. People have to go on methadone, and antidepressants over it. Anywho, After I wept and begged on my knees for God to cure me, and help me, and even called a prayer line (LOL!!) and cried on my moms shoulder, (she prayed with me for a cure also) I made an appointment with a Urologist in Cleveland, Ohio at the Cleveland clinic. The best in the country. I got diagnosed with Ureaplasma, and Im currently on a strong 30 day course of antibiotics, (augmentin, zithromax, doxicycline) then I will be on long term antibiotics for the duration, until I test negative, which could take over a year.
Many people dont know too much about Ureaplasma, so please, please google it, and try to find a doctor that will hear you ,and test you. There are links to this with V too.
The test is expensive, and many doctors havnt even heard of it, so you have to shop around. because Ureaplasma is linked to IC, (urethritis) it is also linked to infertilty, miscarriage, and premature birth. Maybe shop around for fertility doctors, say your trying to get pregnant, and your concerned about Ureaplasma. Its worth it guys, I feel 100% better now that I am taking the proper treatment. This little bacteria is prolly the the one responsible for a lifetime of pain, and ruined relationships.
The oils. I make suppositories with coconut oil, (frozen, in sport bottle ice cube trays) with various essential oils, and Ive been able to have a sex life and sometimes, pain free sex life, since I started this. The thing is. You have to rotate the oils, I learned this. For a couple of years I was just using tea tree (and douches are horrible by the way, please dont put them in douche, been there, done that) after awhile, it didnt work and I didnt know why. The Boric acid suppositories. Worked for awhile, then didnt work at all. Then Myrrh oil. Which is great by the way. Then lavender and rosemary oils. Also awesome. Then Tyme oil, and oregano oil. Awesomness. Also, grapefruit seed extract is great too. Now Im doing Geranium oil, and its the skin of my vag is very soft and supple, non itchy and completely burn free. It feels strong, and healed...Im totally down for sex atm ), but currently single again (..but yea. Start out with a few drops, first few days, then work your way up to where you feel comfortable. I use quite a bit, especially for raging pain or infection, but everyones different. You can start out with this a couple drops rosemary or tea tree inside, twice a day, and see if you feel better..

You can also try Folic Acid and large doeses of Vitamin E, as that used to work for me before I started on the suppositories. I would take 400 to 800mcgs of folic acid twice a day, and 400IUS of vitamin e 2 to 4 times a day, 2 in the morning, 2 in the evening, and I was good doing this everyday for about a year, then my body got used to it, and I had to try something new. Also, a good, multi strain probiotic is a must.

Hi lavrose, Thanks so much for your post! I'm 35 and have suffered with interstitial cystitis for 15 years and vulvadynia for the last two months. I have just been diagnosed with ureaplasma urealyticum and started doxycyclin. I sent you a message and would love to chat with you more about your recovery.