long term vulvodynia sufferer

[Yellow_Sunshine]

Hi.

I was diagnosed with volvodynia in roughly 2018 after years of suffering. It started with recurrent thrush and BV, starting back in the 90s and peaking in mid 2000s. Then seemed to change from infections to a low lying constant burning pain when sitting and painful intercourse. I then had my daughter through IVF, had no symptoms when pregnant but then it came back with a vengeance.

it’s now at the stage where I’m in pain every day, almost constantly although worse when sitting.

sex is non existent, I’m splitting from my partner (not all because of the pain but it hasn’t helped), and I can’t find any relief.

I’ve seen a specialist at the hospital in the past. They discharged me and said there was nothing more they could do. They’d tried creams and gels, amitryptoline, a colposcopy, psycho sexual therapy.

I went private to a women’s health physiotherapist. She found some coccyx damage but after her internal exam my symptoms got far worse.

Last week I started the amitryptolene again. I had relief for a couple of days then went for acupuncture and my symptoms came back with a vengeance just after.

it’s really ruining my life and I’m spending a fortune on anything that might help but to no avail. Not sure what I’m looking for on here, maybe just some support and to know I’m not alone??

[LalSD]

I am so sorry to hear pain. And I have no solution or know the illness and I am not a doctor. But years ago I was able to improve my Systemic Lupus with castor oil applications and also use to reduce my endometriosis. I found many articles from Edgar Cayce and his holistic healing methods. I would highly recommend you to investigate Castor Oil healing or possible stories from his healings to see if any other holistic approach would help.

[NZ07]

Having vulvodynia is definitely no fun and it sounds like you're having a tough time.I was diagnosed with this 3 years ago alongside lichen sclerosis, vaginal atrophy and a urethral wall prolapse following a very abrupt menopause at 44. I can no longer have penetrative sex - too painful.

It's a much misdiagnosed and misunderstood condition that has such a huge impact on our lives, both physically and mentally. It's invisible and others have no idea how much the pain impacts on daily life.

There doesn't appear to be any one set treatment that works for everyone, and it sounds as though you've already tried lots of things.

I've personally found that vaginal oestrogen has helped along with a good cushion (which I take everywhere) and a supportive pelvic physiotherapist. Keeping my stress levels low has also helped as has accepting that this is what I have and adjusting my mindset..Some days are good and some are not.

There are several good resources and support groups out there and you're definitely not alone. Take care

[Yellow_Sunshine in reply to NZ07]

Hi, thanks so much for replying.

I tried a cushion and it doesn’t seem to help. My physiotherapist made things much worse. I tried buying estrogen cream online this week through Superdrug’s online doctor and was denied it because I’m under 45. So I’ll add that to my plan and approach the GP for it.

I’ve really struggled to find support groups other than here. Would you mind sharing some links?

I try to keep my stress down but going through a break up with a small child while being self employed means that’s pretty impossible at the moment x

[NZ07 in reply to Yellow_Sunshine]

Hello again,Here are some to look at.

nva.org/what-is-vulvodynia/

vulvalpainsociety.org/get-s...

facebook.com/groups/2229472...

pelvicpain.org.uk/

There are also some good tips on the menopause matters site.

I assume you are already wearing loose clothing, avoiding any perfumed soaps, etc for cleaning and using lubricants? I haven't worn underwear in 2 years and that's really helped. I found amitriptyline great, unlike yourself, but couldn't tolerate the side effects. Pregabalin, nortriptyline and Gabapentin are other meds that can help. I also know you said that the gynae physio made things worse, but sometimes it's finding the right one. I'm on no 4!

Other things that I've heard work are Botox injections, nerve blocks and CBT therapy...There are lots of things out there..some people's pain goes away and gets much better. Always hope. Don't give up, but be mindful that it can sometimes be a long journey to get the help you need.

I'm afraid I live in NZ so can't recommend you any practitioners. Good luck, and remember to be kind to yourself.

[Yellow_Sunshine in reply to NZ07]

Thank you. I’ll take a look at all of those. Yes I do all of the recommended things you mention. I also dilute urine by pouring water down there after peeing.

The amytryptoline did actually help for a couple of days, but then I had acupuncture and the pain came back so I’m not sure if it was the acupuncture that caused it or my body got used to the medication and the effectiveness wore off. I should have given it more time before trying the acupuncture really!

[Midori83]

Hi. Have you tried seeing a neurologist and then a pain management specialist? I have tried nortriptyline, gabapentin, physiotherapy, osteopathy and botox injections into the pelvic floor. I have improved, but now my symptoms are located on the right side of the clitoris. The neurologist has found the nerves responsible for my pain, which were damaged during pelvic surgery done by incompetent surgeons in London. I am due to have nerve block injections.

[Yellow_Sunshine in reply to Midori83]

Hi. Thank you for replying and sorry you’re going through similar experiences. I haven’t tried those, no, but I will add them to my plan. I’m currently constructing a monthly plan of treatments to try, with a pain chart to identify which things help. Did you access the neurologist and pain specialist via the NHS or privately? X

[Midori83 in reply to Yellow_Sunshine]

I went to see the neurologist privately, because my surgeons on NHS would not admit my pain was down to nerve damage caused by them.. I was in the dark for more than 2 years. But the neurologist was kind enough to refer me to his NHS hospital for follow ups (St. George's Hospital in Tooting) and to see the pain managementspecialist. The key is to have a proper diagnosis from a neurologist, in my opinion. Then, you will be able to find the right treatment

[Yellow_Sunshine in reply to Midori83]

Thank you. I will definitely look into this. I have a diagnosis of vulvodynia from the gynae department at my local hospital but as far as I can gather that just diagnoses general unexplained pain so doesn’t actually help with narrowing down why the pain exists and how to reduce it. It’s such a minefield isn’t it?!

[Midori83 in reply to Yellow_Sunshine]

It is, unfortunately. I got a generic diagnosis of chronic pelvic pain from the hospital urogynaecology department. They offered physiotherapy and botox injections into the pelvic muscles. That helped a bit, but did not solve the problem. Hopefully we will both feel better soon! 💛

[Perry1270]

Diagnosed in 2016….Tried everything. Found a Dr. that prescribed vaginal suppository. They have 2% diazepam. I use them at bedtime. They have helped a lot. I hope that you can find something that works for you.

[Yellow_Sunshine in reply to Perry1270]

Thank you, and so glad you’ve found something that helps you. It gives me hope x

[MissStar]

There's a really old method that may or may not work for you, but you might want to try? The idea is with age our microbiome drops, is challenged (by antibiotics) and the diminished good bacteria in your vagina can cause discomfort and problems. If you have had lots of antibiotics for BV, then your body might be run down and struggling. The good bacteria feed off of glycogen, so feeding them boosts them and can really help with lots of vagina/anal/vulval discomfort. Take local raw honey (it needs to be raw) and mix 50/50 with coconut oil (regular food grade) - apply small amount as high as you can in your vagina, before bed. it will do its magic during the night. Do this every night. You only need a pea sized amount. You can eat coconut oil to, a bit each day - anti fungal. I really hope it helps you. You might also like red clover tea - drink daily for relief (contains phytoestrogens) (if you want to know more about the honey etc, the advice comes from Christine Kent of wholewoman.com - she has lots of experience with prolapse and vaginal discomfort). A good herbalist might also help? Wishing you healing and good health.

[Littledogs]

Hi Sunshine, I too have been diagnosed with Vulvodynia ( couldn't they think up a worse name!!!) I thought great at least now I know what it is, only to read the leaflet which basically says its a name for pain they can't explain or cure, or even help with! So so frustrated. Like many others I had tried pretty much everything and absolutely nothing works. My symptoms are more like Pudendal Nerve pain, but apparently its not that! I am so sorry that you are going through this at your age, with a young child I am 64 and can't bare the thought of having this until I die, which seems to be the consensus. It seems to me no one knows or really cares, so we are on our own. I do get relief when standing however now my feet are killing me 🤣 and I have a repetitive strain injury in my shoulder from using my computer at work (60 hrs a week) whilst standing. I'm afraid I don't have any answers but hope it helps to know you are not alone 😉 If I do find anything that works I will be sure to let the world know. I am thinking of trying cannabis!!

[Yellow_Sunshine in reply to Littledogs]

Sorry to hear you're struggling too. It's just such a frustrating condition to have isn't it? There's no straightforward solution and doctors seem to give up, leaving us on our own to work it out, which is exhausting but you can't even sit down and relax because even that hurts!! I'm so sick and tired of thinking about my vagina ;)))

[dorcas]

I am so sorry to hear of your lifetime of pain and suffering. I have no experience of your condition, but sending you love and support ❤️

[HopefulOphelia]

Hi Yellow_sunshine,So sorry to hear your going through so much. I'm in a similar boat and haven't had a significant breakthrough yet. Sounds like your diary plan of different treatments is a good idea though. Let us know how you get on 😊

From what you said in the initial post, did your symptoms go away before IVF? If so, what did you find helped that time? Is it the same now as before but more intense or completely different?

I'm sorry I can't offer advice or recommendations yet but wanted to let you know that your not alone and if I do hit a break through I'll let you know.

Take care