Vulvodynia and fibromyalgia

[Janpan7]

Hi all, I've had fibromyalgia for 7 years, but after a number of months of new burning, sore pain down below, ive been diagnosed with vulvodynia 😒 Apparently it's quite common for folks with fibro 🙄 I've increased my amitryptaline to 60mg, and use lidocaine 5% ointment, hrt cream and usual self care suggestions, but not really helping. Has anyone found gabapentin or pregabalin help, as this is doctors final suggestion? Any tips would be gratefully received. Many thanks xx

[moo196]

I urge you to also see a skin specialist. My GP kept misdiagnosing me and I presented very late with lichen sclerosis.I'd also be looking for a referral to gynaecology.

[Janpan7 in reply to moo196]

Thank you for your reply. I don't have any white patches, everything looks fine down below, and I have seen a gynaecologist. I guess I'm just hoping someone has had some success with pregabalin or gabapentin, as I've tried them for fibro and didn't like the weight gain, but I'd put up with it now as feeling desperate for some pain relief

[Briecheese]

I had a lot of skin problems and have lichen sclerosis and idiopathic urticaria. Attended dermatology but only got a proper diagnosis by going private. Another auto immune disease courtesy of fibro

[Davewm]

Hi Janpan 7

I’m sorry to say I can’t be much help I’ve had a Triple Heart Bypass with Mitral Valve Repair. I also have Severe Spinal Stenosis following a failed Laminectomy (spinal operation) which causes me tremendous pain. I was put on Pregabalin after all other similar tablets. I now have Heart Failure so the Pain Clinics final attempt was to prescribe Oramorph and Zomorph. Both Morphine bases drugs.

When I tried Pregabalin it didn’t help much with the pain however I did start getting nose bleeds so I was taken off them.

Sorry I can’t be anymore helpful but wish you all the best for the future.

Kind regards

David

[Janpan7 in reply to Davewm]

Thanks for your reply David, sorry to hear you've had so much pain, I hope you can get some relief

[Charliebear1234]

Hi janpan7 , yes I get sore down below on and off for no reason was interesting to read that people with fibro get it I wondered why I was like this on and off, I have just came out of massive flare that lasted 5 months was in a rite mess , yes pregab works but I have also started having rekie which is helping my anxiety and mental health, I think it's also helping with my pain and I have started to do exercise in water my bones in my neck would crunch when I moved side to side there so much better now hope this has helped😊

[Janpan7 in reply to Charliebear1234]

Thankyou Charliebear, sorry you've had such a long flare-up, I'm glad some things have worked for you, that's good to know x

[breianne in reply to Janpan7]

One particular study examining the use of amitriptyline to treat women with unprovoked vulvodynia was:-

Helen [a selected name], complained of vulval pain for several years but was only recently diagnosed. She had the usual story of repeated thrush treatments for years with no help. She complained of constant vulval soreness and burning, which was often worse at night after a day’s work when she tended to focus on the pain. She was diagnosed with vulvodynia and given amitriptyline as a treatment together with avoidance of all creams and scented products on the vulva. She was advised to use aqueous cream on the vulva as a soap substitute. She took the amitriptyline at night as detailed in the table below.

Helen’s reaction to increased amitriptyline dosage over the course of ten days

Day Dose of amitriptyline Helen’s comments

Day 1 10mg per day Pain present.

Day 2 10mg per day No difference in pain. Dry mouth today.

Day 3 10mg per day No difference in pain. Dry mouth today. Tired in the morning.

Day 4 20mg per day Pain present. Still tired.

Day 5 20mg per day Pain present. Dry mouth better.

Day 6 20mg per day Pain still present!

Day 7 30mg per day Dosage increase. Tiredness better.

Day 8 30mg per day Possible improvement.

Day 9 30mg per day Better! Pain reduced.

Day 10 30mg per day Pain much better. Continue at this dosage. Just slight tiredness.

Helen continued with the dosage and her pain was manageable. Side-effects are commonly reported with these drugs but they should not last more than a week or two. She supplemented the drug treatment with acupuncture which she found great for relaxation and vulval massage. It is important to know this as many women do not give the treatment a proper chance to work! There are other antidepressants available which you might want to discuss with your doctor.

According to the Vulval Pain Society, when it comes to vulvodynia, the term includes the hair-bearing region at the front and extends as far as the area around the back passage.

Why does vulvodynia happen?the causes of vulvodynia are uncertain, at best.

'What we do know is that vulvodynia is a problem with the sensory nerves,' They are oversensitive and send pain signals back to the brain when they shouldn’t. But why they start doing this, we don’t know.'

That said, women who do have an infection or inflammatory condition – think recurring vaginal thrush, interstitial cystitis, fibromyalgia and IBS – seem to be at an increased risk of vulvodynia.

'It’s also worth noting that vulvodynia can occur at any time in a woman’s life,' And, according to the Vulval Pain Society, a potential 8.6 million women in the UK will experience it at some point during their lives.

There is a treatment out there that will work Jan, please be assured.

[Janpan7 in reply to breianne]

Thank you Breianne for your comprehensive answer, much appreciated 😊 my amitryptoline dose has been increased to 60mg, which is helping a little, but think I may have to try pregabalin too. Xx

[breianne]

Hello Jan

Firstly, I'm really sorry that you are experiencing discomfort, apart from fibromyalgia with vulvodynia. I can only imagine the discomfort you are presently having with this condition.

Vulvodynia Affects 2.6 Million of You - but No One's Talking about ItVulvodynia is pain in the vulva (area around the outside of the vagina) that lasts at least 3 months and does not have a specific cause. It can have a big effect on your life, but there are treatments that can help.

For those reading this reply that do not know what Vulvodynia is, Vulvodynia can affect women of all ages. Anyone with a vulva can have vulval pain.

There's usually no change to the way your vulva looks, but it may feel uncomfortable or painful.

The pain may feel like:

burning

throbbing

stabbing

soreness

The pain can also:

Affect all or part of your vulva

Be constant or come and go

Start on its own or when your vulva is touched – for example, when inserting a tampon or having sex

Affect other areas, such as the inside of your thighs, around your bottom (anus), or the area where pee leaves your body (urethra)

Sometimes start when you have a poo

Vulvodynia can have a big impact on your life, affecting things like your sleep, concentration and sexual relationships.

Treatments for vulvodynia

The main aim of treatment for vulvodynia is to help manage the pain.

Vulvodynia is often treated by more than one specialist, including:

a gynaecologist

a physiotherapist

a psychologist

a pain specialist

A number of different treatments may be recommended under the guidance of these specialists.

Treatments for vulvodynia can include:

medicines – this may be a cream you rub on your vulva to numb the pain or tablets to treat nerve pain

pelvic floor exercises to help you control your vaginal muscles

gently widening your vagina using tampon-shaped objects (vaginal trainers)

psychological therapies, such as cognitive behavioural therapy (CBT) or psychosexual therapy (therapy to help with sexual problems)

surgery to remove the painful part of your vulva – this may occasionally be offered if other treatments have not worked

No single treatment works for everyone, and you may need to try several treatments to find out what works best for you.

We are all individuals and what works for one or more may not work for others so finding a solution can take a little time. Not what you want to hear as you want relief. Sometimes drugs such as gabapentin or pregabalin are also used in the treatment of vulvodynia. Chronic pain strategies such as acupuncture, mindfulness and stress management may also help relieve symptoms. Bland emollient creams and vaginal lubricants may also be of benefit.

You mention Gabapentin or Pregabalin. Gabapentin is a drug which has long been established in chronic pain management as an effective way of curing pain. It consists of tablets taken by mouth and works well for nerve-related pain. The tablets are prescribed for a number of conditions affecting the central nervous system and they influence pain at the level of the spinal cord.

Pregabalin is very similar to gabapentin; however, it is reported to have fewer side-effects and is possibly more effective. The dosages of this drug are different and you will need to discuss these with your doctor. There are other drugs prescribed for chronic pain such as venlafaxine. These should be discussed with your doctor.

Drugs are only one part of a strategy for vulval pain. You should consider other treatments in conjunction with the tablets.

Gabapentin is a drug which has long been established in chronic pain management as an effective way of curing pain. It consists of tablets taken by mouth and works well for nerve-related pain. The tablets are prescribed for a number of conditions affecting the central nervous system and they influence pain at the level of the spinal cord.

Pregabalin is a new drug which has been released. It is very similar to gabapentin; however, it is reported to have fewer side-effects and is possibly more effective. The dosages of this drug are different and you will need to discuss these with your doctor. There are other drugs prescribed for chronic pain such as venlafaxine. These should be discussed with your doctor.

Drugs are only one part of a strategy for vulval pain. You should consider other treatments in conjunction with the tablets.

Vulvodynia varies with every individual. Pain that originates from nerve fibres is best treated with drugs that alter the way in which the nerve fibres send their impulses to the spinal cord and give the sensation of pain. The most experience to date in treating vulvodynia has been with the tricyclic antidepressants. These can be prescribed by your doctor in doses lower than those used to treat depression.

The drugs are used because they alter the way in which the nerve fibres transmit the sensation of pain, not because the doctor thinks it’s all in your mind! Some women do gain some benefit from different types of creams and lotions applied to the vulval area which do act as soothing agents, but it is generally best to avoid all creams unless they have been prescribed by your doctor.

The drugs are given in tablet form, starting at a low dose and then increasing every few days until the pain subsides. The response to treatment is not overnight and may take several weeks. It is often necessary to continue with treatment for three to six months. Examples of tablets include amitriptyline, nortriptyline and dothiepin. Other antidepressants such as venlafaxine can also be tried.

The major drawback for some women on treatment is the side-effects; however, these usually settle within the first few weeks of treatment and are not usually exacerbated by increasing the dose.

I've continued on another reply to you