I’m back after 5.5 pain free years

I’m really not coping well, it’s been back with avengence for 7 days.

Started in 2010 was horrendous following a yeast infection. Constant pain, tried every conceivable option.progressed to IC and burning hands and feet... it was an appalling time.

Herbs got me to the point I could conceive then everything went away once I gave birth end of 2012. 2 healthy babies (5 and 3) vaginal water births with only 2 bladder flares in these years controlled with homeopathy. I promised myself I’d never ask for another thing - so thankful to be rid of this torture.

9 months ago I got Botox for wrinkles, horrible reaction....then periods went wonky then developed Hashimotos and fibrocystic breasts. Began seeing a naturopath for managemt of hormonal problems - supps caused minor yeast infection , (had worse over past few years) aa3 days later yeast was gone, Vulvodynia returned, then the burning hands and feet, then the clitoral and bladder pain (everything that took a year to develop in 2010 has returned within a week of the v pain coming back. I’m terrified and emotional, the whole area is buzzing, anal fissure (not had since v resolved) hands and feet burning again.

There do not seem to be many advancements in treatment and we have completed our family so another baby is not a suitable solution

Please help me gain perspective and control

Claire

I decided to come back and update everyone, surprised that i had no replies of support here. That is a shame.

Anyway....

After beginning paleo diet I was consuming in high quantities buckwheat, Quinoa, Spinach, tomato, tumeric, chia, kale, soy, gluten free grains, almond milk, rice milk, nuts and peanut butter on a daily basis. It is in a lot of foods you would not expect.

it seems I overloaded my system. Within 5 days the pain had resolved completely. The only accurate list of low oxalate foods and oxalate levels is in the "TLO" facebook group run by Susan Owens.  Learn all you can from that group.

There is a multitude of women on that group who have healed from VVD this way.  If i had known that all the information on the net that was not in this group was not accurate I wouldn't have thrown out the diet years ago and would have saved thousands.

ALSO Miracle 2 gel. Amazing for burning. Think what you want of it but i have put it on bites on green ant bites on the kids and myself to test placebo. It works.

Hope this helps someone.

Hi. I'm new to this group and have read about the low oxalate diet. I would try most things by2t I am cautious as I'm already a bit limited diet-wise as I follow a GORD and IC diet. Pmays gavoc with family meal planning and eating out. Many of the foods overlap for both of these conditions . Tomatoes, citrus fruit, caffeine, spices and fizzy drinks are the worst for my bladder.
Interestingly, from the list if foods on your paleo diet I know soya is listed as an IC trigger food. There's also a known relationship between IC and Vulvodynia which u may already be aware of.
I'm currently 4 weeks in to trying 10mg Amytryptaline at night and I have discovered that Vagisil which has 2% Lidocaine helps. My doctor has precsribed a 4% cream but I haven't picked it up yet as it was a special order. I'm not sure whether the Amytriptaline us having a positive effect yet to be honest. I can see side effects but I'm not so sure about whether the pain is less as my pain comes and goes.
I have trouble with any trouser seams so have struggled with jeans for the past 4 years, also no leggings, tights etc. I have trouble with sitting for any length of time too. My driver's seat seems to be at a bad angle for me and often sets me off. Being a pixie sized woman means I can't change the seat around or I can't reach the pedals.
I would love to be able to get back on my bike again but I'm worried that this might never be possible. Some days this condition really gets me down and I can't see a way in which things might change.
At the moment over the past few days I feel a little better as the Vagisil has enabled me to have sex again and not burn all day after. I can keep it in my handbag and put it on at work if, despite wearing Joggers I have a sudden attack of pain. I'm hoping it will help when we drive for 4 hours to go on holiday.
Do you take any regular meds fo the V or just diet and topical cream?
How are you feeling now?
I don't have facebook, is there any way of getting that food list without joining fb?
I might try going low oxalate when I have finished trialling these tablets.
Thanks in advance.
Sandy.

I use a cushion with a hole in the middle. It is in a black pillowcase which disguises it very well. I believe a low oxalate diet is beneficial. If l eat peanuts too often l have had burning on urination.Also, salad leaves with spinach eaten too often has had the same effect. Going back to the cushion l only need it when l am in the driving seat. I used to use a cushion all the time in the early days. I thank Nortriptyline at 20mgs for the past 6 years of trying to manage this condition. There is no cure. You have to learn how to manage and live with this condition. Getting upset makes this condition worse. It can be a vicious circle. Keep hydrated, when your urine is strong it can sting and cause the burning sensation. Read the posts on this site, they are full of good information that may lead to you find something that makes your symptoms easier.

Thanks hun. I might try the cushion in the car. I'll have a look online for one. It's good to hear from other women in the same situation. Staying hydrated isn't a problem for me as I drink plenty for the cystitis. At the moment Im so thirsty from the Amytriptaline that I'm drinking even more.
I 've just been a bit up and down over the past month. I've spent 23 years with " persistent thrush " and vestibular swelling and rawness/ burning to find out at the end of May that actually it isn't always thrush. ( sometimes it is) Just going thru the process of getting used to the fact that I have a pain syndrome which won't be cured by being resutured as had previously been suggested. (Not that I actually wanted to be sitting on fresh stitches 13 years after I last gave birth...at least I had maternity leave to recover back then. So that's kind of a bonus that it won't be happening!)
Anyway, think I've turned a corner this weekend and got my head round it and accepted it( and the hideous amytriptaline)
Thanks for the tips. X

P.s it was through reading entries on this site that I decided to try lidocaine cream...so a big thankyou for that ladies! Made a huge difference!

Hi everybody,

I am 17 years old and I have suffered with vulvodynia for around 2 years now. My symptoms started when I had the implant inserted, it started off with a mild burning sensation, sex being uncomfortable but it soon got progressively worse...I now have an excrutiating burning sensation 24/7, sex is really painful, i cant wear tight clothing, I get terrible flare ups whenever I pee because I have nerve damage around my uretha. I have seen several doctors, first one told me it was a yeast infection, 2nd one told me it was in my head and the only way to treat my condition is if I kept telling myself it wasnt there. I went to see a gynacologist who diagnosed me with vulvodynia and IC. She first prescribed me with estrogen cream as she believed the hormonal imbalance caused by the implant has triggered my pain, i tried this for around 4 weeks and seen no improvement, I then had the implant taken out and this hasnt seemed to do anything, I was then prescribed with steriod cream and I feel this made my pain worse as this cream is known to thin the skin. My condition is really really starting to get me down because I cant do the things I used to enjoy doing like riding my bike, wear nice clothing. I cant even sit down or sleep without being in pain. Id do anything to be able to have a physical relationship with my boyfriend but this condition is preventing me from doing any of these things, thankfully I am in a loving relationship with a partner that understands my condition and supports me 100%. My gynacologist said shes going to try me on gabapentin, has this drug worked for anybody? Have you had any success? Can you tell me what has worked for you or how you manage the pain? But above all, will it get any better?

Thankyou.

Sent from Topic'it App

Thank goodness you found someone who diagnosed you properly. How far have you got with treatment for your bladder? Have you looked into the foods to avoid for IC? Changing my diet made a massive difference. My IC is now under control. I know exactly what you mean about how it restricts your ability to dress how you would like and do activities. It has made me miserable too. I gave up aquarobics as the chlorine set me off. I sleep with a pillow between my thighs and find this helps. I'm going to look today for a dougnut pillow to try sitting on as recommended by a lady on this site yesterday, have you tried that? I'm having some luck with lidocaine cream at the moment. I presume you have done all the stuff like binning soap and washing with aqueous cream? Changing your washing powder and avoiding fabric conditioner on your knickers?
I used to trim my ladygarden short but now I'm much more comfy if I only trim the borders. That alone made a massive difference.
Hang in there hun. If u feel very low you could discuss with your doctor trying something which might help your pain and your low mood. I'm glad to hear you have a lovey boyfriend. My husband is my rock.

Nope I have not started any treatments regarding IC as of yet, however I do find drinking lots of water does help to some extent. I do go swimming sometimes and when I do I apply vaseline which helps to block the chlorine from going near that area. I have not tried a donut pillow yet, I usually just sleep without any underwear. I cant wear anything other other than leggings and 100% cotton underwear. I used to love wearing skinny jeans but they cause me so much discomfort, especally when it comes to sitting down for long periods of time. I have tried oatmeal sitz baths but this hasent seemed to help my condition. I do feel like my condition is slowly getting worse which is making me feel so miserable but Im trying to stay positive and to not lose hope. Im looking into having acupuncture as a way of treating my pain, have you heard of this treatment? Im too and glad you have a supportive husband. I hope things get better for you honey, Im sure they over time

Sent from Topic'it App

Drinking 2litres a day is definitely helpful. I drink more than any of the other women at work but if I don't then the concentrated urine irritates my bladder big time. If I cheat and drink fizzy cola it has to be early enough for me to drink enough water to flush it through so it doesn't sit in my bladder overnight or it's very uncomfy. If you look up IC foods to avoid it might help. It's anything acidic like citrus fruit, fizzy drinks, caffeine, tomatoes...which means I cut out pizza, pasta, lasagne etc generally. Now it's controlled I could eat the occasional pizza( that's light on tomato sauce) if I wanted and I can manage old el Paso spice free fahitas from the kit if I don't add more tomato. I have reflux too so I just cut out pretty much everything on the IC and GORD lists of irritants and I do much better. ( I do occasionally cheat with chocolate!) I have to say, as much as I resented changing my eating patterns, I have been lighter since I started it all. Bonus!
I saw a clip on YouTube where an American doctor gave a talk on how he treats IC. He used anthistamines as part of it. U could ask your gp if its worth a try. It was something to do with the "mast cells". I can't try it as I'm on Amytryptaline and the antihistamines would i terract with it and make the side effects much stronger...I'd probably be asleep all day and have the driest mouth in the world!
Lots of people on this forum are talking about the low oxalate diet too. Apparently you can get urine and blood tests to see if your oxalate levels are high.
Could be well worth talking to gynae/ gp about . When do u see them again?
I'm currently making the most of the summer weather by wearing maxi dresses. In the winter I struggle and spent most of last winter in gap dungarees that hung loose when I went out and changed into a skirt when I got home. I resent this massively as ditching jeans means that half of my lovely wardrobe is now redundant. If I can use lidocaine to allow me to wear jeans or tights for short periods I will be very happy. We will see.
I'm currently keeping a diary of what I eat, how comfy I am and what I'm using. Hoping it might be of some use when I go back to gynae. Initially I wasnt convinced that the Amytriptaline was working at all but now I think it might be as usually I can't wear my dungarees all day and lately I can wear them much longer. Fingers crossed.
Hope you start your gabapentin soon.
Xx

P.s I have heard about accupuncture for it but not tried it yet.

P.P.S
I have tried many lubes over the years including Yes and using vigin coconut oil. I currently use Sliquid Organic lube ( green label) it's the only one I found that never stings ( even Yes stung and burned at times) and is sugar free, paraben free etc. I just make sure that when we have managed to have sex I always pee and then gently wash in cool water and aqueous cream afterwards. That deffo helps. X
Frankly I cant believe how many lubes contain types of sugar. Deffo not something you want to put in there!
I get it mail order from Lovehoney.

I have had 20 sessions of acupuncture at the very beginning. My acupuncturist was also a gp and counselled me at the same time. As you now know this condition plays with your emotions and causes stress which in turn makes it worse.lt definitely helped l also had stomach issues and l came of medication for that. It can be expensive and make sure they have heard of vulvodynia. I also tried Chinese herbal medicine but l didn't find this helped at all. I used to cry a lot at the beginning the acupuncture calmed this down. After a crying spell it would flare up and burn. So, l soon noticed after a session of acupuncture l was calmer.

I have used 'Yes' lube and I had a bad experience with it, it would dry up quickly and get really sticky causing friction which made my pain even worse. I use Durex which I find lasts a long time and is very slippy which caused less discomfort. My pain has been really bad recently so me and my partner have decided to give sex a break for a while. I will definately give the low oxalate diet a go because IC really is a nightmare, especally in conjunction with vulvodynia.

Sent from Topic'it App

Good luck! Let us know how you get on.
This heat today isn't helping meat all...no idea where u guys are but it's showing 30'C on my dashboard ( in a parked car) in Yorkshire!!!

* helping me at all.

Thankyou, same goes! And same here, its been 30°c over here in Manchester.

Sent from Topic'it App