Suspected Vulvadynia? Severe and constant clitoris pain/burning with some pain underneath. All exacerbated by sitting/walking/weeing.

[Redskytonight]

Me and my husband had sex over 6 weeks ago a few days after I began with burning type pain mainly at the front around my clitoris but it did seem to radiate underneath. I began drinking lots of water thinking I have cystitis.

1 week later I saw a GP and although my urine sample was negative to any bacteria I was given Nitrofurantoin 400mg 2x a day for 3 days for a UTI but this gave no relief.

Swabs were taken, more urine samples and a full STI check was given. All eventually came back negative. But in the meantime I was treated with Canisten internal/external and tablet form for suspected thrush, no relief.

A week later, I was put on more antibiotics - trimethoprim just to make sure it wasn’t a stubborn UTI. No relief. Alongside this they decided to treat me for herpes (result wasn’t back yet but I was due to go on holiday) so I began taking aciclovir. Both gave no relief.

Since then I have seen a gynea urologist who has said I have Vulvadynia and prescribed me amitriptyline and lidocaine ointment (to numb the area) with no real confidence that this will be a fix and more of a management with no timescale ahead to suggest when I could be better or if this is even possible?

I have no children, but did plan to start trying this summer. Me and my husband haven’t had sex in 6 weeks since this all began and wouldn’t dare try.

I am finding that mornings I am my worst, then across the day each time I have a wee I have a flare up for a good hour after. Sitting definitely makes me worse as well as walking or any type of exercise. The pain is always in my clitoris, but can sometimes feel underneath around the internal labia. I feel trapped, as though anything I do makes me worse.

If anyone has had a similar story please could you share anything that helped alleviate your pain? If this is something you have struggled for months/years with and has anyone managed to get rid of this pain?

I am yet to start the amitriptyline and lidocaine ointment as the pharmacy have ordered this for me, I am due to collect next week.

Thank you x

[Karob12]

Hi, sorry to hear what you are experiencing. It sounds very similar to my journey prior to being diagnosed with vulvodynia. Amitriptyline is often the initial treatment that is prescribed for this condition and can be helpful. However I find Gabapentin a better option and take 600mg x 3 times a day. This is quite a high dose but many people find good relief at lower dosage. Pregabalin is another option which some people prefer. It is trial and error to some extent unfortunately so can take some time to settle on the most useful option for you.You could try dabbing yourself with a flannel rinsed with warm water after urinating as this may help.

I hope you start to find relief from your pain very soon.

[Redskytonight in reply to Karob12]

Hello! Thank you for you reply, sorry to hear you after suffering but have found relief with gabapentin. I will try the amitriptyline once I can collect this week but I am quite nervous about it effecting my mental state. Great tip regarding the wet towel after urinating, I will give this a try!

I have asked this down below, but trying to ask everyone I know who is struggling with the same vulvadynia diagnosis. In your own experience have you noticed a very specific area that is always in pain and that it is slightly swollen and red? For me I have pain just underneath the clitoris and it appears more swollen and red than other parts and it most definitely is more painful to touch than any other part. I am trying to figure out if that is normal for Vulvadynia or if I have trauma to the area that is taking a long time to heal that has been further irritated by the canesten cream/bepanthen/sudacrem cream I lathered there over the past couple of weeks (all things my GP suggested at the start of all of this).

[Tree_Tops Moderator in reply to Karob12]

Thanks for sharing, I've learned something new today 🙂 my GP only prescribed me up to 200mg of gabapentin and took me off it after 5 months!

[Perry1270]

I have had Vulvydania for approximately 7 years. Finally got real relief with vaginal suppository. Baclofen 20Mg./Diazepam 5Mg. Using them at bedtime. Hope this information helps you.

[Tree_Tops Moderator in reply to Perry1270]

I've heard of these, but they don't seem to be available in the UK

[Perry1270 in reply to Tree_Tops]

I get mine from a compound pharmacy. But they do need a prescription.

[Tree_Tops Moderator]

Hi Redskytonight ,

I'm sorry to hear you're in pain. I'm a moderator for this group and I have vulvodynia.

Tricyclic antidepressants (amitriptyline or nortriptyline) are prescribed for vulvodynia to treat the pain, starting at a low dose and then increasing each week (up to 60mg). My dermatologist told me that the nerves under my skin had become hypersensitive, and that I would notice a difference after about 3 weeks, with it taking around 9 months to reset them.

Topical anesthetics such as 2% lidocaine gel or 5% lidocaine ointment have helped some with vulvodynia.

If treatment is unsuccessful, your doctor may consider prescribing anticonvulsants such as gabapentin or pregabalin.

Some have found relief from a physiotherapist who specialises in pelvic floor disorders or with hormonal creams such as oestrogen or testosterone.

Self-help measures:

• Avoid perfumed soaps, vaginal hygiene products and douches.

• Don’t use scented toilet paper or wipes.

• Use plain lukewarm water to wash your vulva and always wash after you’ve had sex.

• Wash your underwear in a non-bio washing powder and avoid fabric softener.

• Opt for 100% cotton underwear.

• Avoid tights and tight-fitting trousers.

• Refrain from using anti-fungal creams when you haven't tested positive for an infection as this can further irritate the vulva.

• Use petroleum jelly before swimming to protect from irritation by chlorine.

• Use lubricants as they can help during intercourse (my GP recommended the brand Yes).

• If sitting causes you pain, try sitting on a doughnut shaped cushion.

Since I haven't responded well to nortriptyline, gabapentin or lidocaine, the next step for me is to see a pain specialist to explore other options (I'm reluctant to try hormonal creams as I also have endometriosis). I believe mine was caused by recurrent bacterial vaginosis and the nerves are hypersensitive. However, this doesn't mean that your vulvodynia can't be resolved by the medication you've been recently prescribed, as this condition can be caused by a multitude of reasons.

I hope this information helps 🙂

[Redskytonight in reply to Tree_Tops]

Thank you so much for this. So sorry to hear your having a hard time yourself. I appreciate you taking the time to respond with so much help.

I am keen to try the lidocaine ointment once I can collect tomorrow. I am nervous to try the amitriptyline 10mg as someone who struggles with my mental health, I worry that if the doses increase I will become reliant on these long term.

I did want to ask, in your own experience have you noticed a very specific area that is always in pain and that it is slightly swollen and red? For me I have pain just underneath the clitoris and it appears more swollen and red than other parts and it most definitely is more painful to touch than any other part. I am trying to figure out if that is normal for Vulvadynia or if I have trauma to the area that is taking a long time to heal that has been further irritated by the canesten cream/bepanthen/sudacrem cream I lathered there over the past couple of weeks (all things my GP suggested at the start of all of this).

[Tree_Tops Moderator in reply to Redskytonight]

I can't say how you will respond to the amitriptyline, as everyone is different, but I understand your concerns. Amitriptyline and nortriptyline are chemically similar, but some sources suggest nortriptyline may have a slightly lower incidence of side effects. Neither of them is addictive, but you can experience withdrawal side effects if you stop taking them suddenly. It's best to ask your doctor to determine the best option for your specific needs.

I experience a daily burning pain in my labia minora and vestibule. My vulva sometimes looks red, and in the past, I've been given Clotrimazole (Canesten) and topical steroids, which only exacerbated the burning pain. This is why I asked to be referred to a dermatologist who specialised in genital skin disorders, as I thought I could have a skin condition. However, she ruled out skin conditions and advised me to not use Sudocrem, which I had started using shortly before I met her

[Hopetobewell]

Hi

Sorry to hear you are experiencing this. Have you had any pain prior to the last 6 weeks? Maybe you were very lucky to see the right specialist at the right time to diagnose you so quickly but I do find the diagnosis of Vulvodynia very quick. Not saying that this is not the case. Your story is very similar to mine. Perhaps if I had an earlier diagnosis my journey may of been shorter. Use of the Canestan & the antibiotics would have definitely aggravated the nerves no end! I suffered with Vulvodynia from 2006 - 2010, then 2014-2016 and then pain free from then to now. (Although I do have a bowel condition which has overtaken this now). I am convinced in the beginning self treating with thrush products escalated this. For me during this time the Lidocaine worked well along with 40mg of Nortriptyline. I had to stop taking the Nortrptyline due to the bowel condition but I was able to get pain free. Still use the Lidocaine when needed. The self-care tips from Tree-Tops is 100% spot on. I have also found applying a small amount of emulsifying ointment after bathing is beneficial. Maybe for you the early treatment may work.

[Karob12]

Hi my pain is across the whole vulval area but often worse from the clitoris and down along the left side of the vulva. There can be some redness but not swollen. I don't find that urinating makes it worse.

[Agnessa]

Hi.

I’m having a pelvic pain for almost 3 years now. Most of my symptoms related to a sitting pain, rectal pain and some issues with bladder. I visited so many doctors, most of them had no idea what is going on with me, often feeling abandoned. I have done an MRI, which didn’t show anything abnormal. I was in so much pain, lost 12 pounds in 2 months, literally lost hope that my life will be normal again. Finally I was diagnosed with the pelvic floor dysfunction due to muscle spasm and after that I started looking for anything that could help me with this condition. Btw, I have a Hashimoto as well and all those troubles started when my TSH was unbalanced.

The life changed after I read the book by Dr Wise and Dr Anderson “A headache in the pelvis”. This book is a “bible” for patients who suffers from pelvic floor muscle dysfunction. You should read this book because you will find an exact story experienced by Dr Wise who found a method that helped him and other thousands of patients to become symptoms free.

I was taught his method called Wise-Anderson protocol and for the last 23 months I’m following this protocol at home every single day. I believe in his method now, because it gave me a hope that I can return to my normal life without drugs, surgeries, injections, the hope that I almost lost. I started feeling better in about 2-3 months of following the protocol. And now my life is almost normal again. I wasn’t able to sit for more than 15 minutes a year ago, I went to Europe on vacation and sit in the plane for 9 hours. My symptoms are improving. The sitting pain is still there but much much less intense. My rectal pain is gone. My bladder problems are almost gone.

Also, they recommended me a cushion pillow that I ordered from the theraseat.com site. It really helps with the sitting pain. I’m using in in the car or anywhere if I need to seat for more than an hour.

You can check the website pelvicpainhelp.com where you’ll find a tons of information. There is a combination of external and internal trigger points releases, some stretches and the most important the relaxation that you have to do daily.

It’s a stress related condition and find a way how to deal with the stress is a daily task. Everything that helps you to get relaxed, will help with these symptoms.

Hope you will feel better very soon! Good luck!