Vulvodynia : Hi everyone, I've been... - Pelvic Pain Suppo...

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Vulvodynia

Herbs2
Herbs2
34 Replies

Hi everyone,

I've been suffering from vulvodynia for about 2.5 years now, which is the same length as my relationship so we've only experienced pain-free sex once.

When it started, I thought I was getting a UTI because I hadn't that long ago been stuck in a cycle of UTIs, antibiotics, and thrush. However, instead of a UTI, I just had unexplainable pain around the entrance to my vagina that got worse and worse.

Eventually a doctor explained what was wrong with me and demonstrated that it was psychological using a cotton bud.

I thought this was the beginning of getting better, but I was wrong. After my sessions with the doctor I would come out feeling optimistic, only to be met with negativity by my partner. Eventually, she started hinting that I should leave him which was absolutely no help to me. I told her that apart from this issue, we were very happy but she wouldn't believe me.

Eventually we got to a place where the pain was tolerable for us to have penetrative sex and the doctor said I was good to go. But the tolerable pain came and went, and back came the excruciating pain.

After a few months I went back to the clinic and saw a different doctor who gave me some breathing exercises to do along with the tensing and relaxing of the pelvic floor. I've been doing that for a few weeks now, but after 2.5 years of painful sex, my sex drive has almost completely gone.

My vulva is still painful to the touch and I feel in the same place as when I started.

Has anyone been in a similar position? Was there anything that helped you?

Tips on getting some of my sex drive back would be super helpful as when I am actually in the mood, it hurts a hell of a lot less, but that sex drive is elusive as hell! But tips to reduce pain are especially welcome too! !

Thank you for reading.

UPDATE: Made an appointment with my GP. Hopefully they can prescribe me amitrypteline and possibly refer me to a pelvic physio person 🙌

34 Replies
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swarke22

Please try and find a ladies health physio, as they do internal trigger pointing which hurts but help immensely. Good luck. If you are in the U.K. I know of one in Leeds. Message me privately if you need her name and number.

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Herbs2
Herbs2
in reply to swarke22

Thank you so much. I am in the UK but Leeds is very far from me. How did you find her? Perhaps I can find one a bit closer

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swarke22
swarke22
in reply to Herbs2

Hi there, go to pelvicphysiotherapist.com and choose either England. Ireland, Scotland or Wales and hopefully you will find some closer. I know Anna has seen people from outside the county from 200 miles away but I hope you can get one much closer. Whereabouts are you?

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Herbs2
Herbs2
in reply to swarke22

Oh wow that's pretty far! Thank you so much for the website, I'll have a look. I'm in South West Wales.

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Konagirl60
Konagirl60
in reply to Herbs2

Good luck. Try Pascoflair to calm your nerves and soothe the anxiety. It’s all natural from Passion flowers.

Curcumin and Boswellia can help with pain.

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Herbs2
Herbs2
in reply to Konagirl60

Thank you I'll give these a go!

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Konagirl60
Konagirl60
in reply to Herbs2

They work to take the edge off....especially the Passion flower. It really calms our nervous system effectively. I take 3 every morning, one in the afternoon ( replacing it with a 10mg. Hydroxizine Hydrchloride pill ) and two at bedtime.

Have you tried applying pain patches? Capsicum work best for my rectal Pain....I do not have vaginal pain. Have you tried Compounded Valium/Lidocaine vaginal suppositories? I use them at bedtime after active days or when I have flare ups which is often.

Hang in there. I feel for you.

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Herbs2
Herbs2
in reply to Konagirl60

I've never tried any of these, so thank you! I'm currently on propranolol for migraines but I've taken them for anxiety before.

How do the patches and suppositories work? Some pain relief would be wonderful!

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Konagirl60
Konagirl60
in reply to Herbs2

I apply the pain patches directly onto my right buttock in the perineal and rectal buttcrack area. They help with neuralgia by diffusing the nerve signals and redirecting them. They also soak up leaking stool.

I won’t buy panty liners.....the Earth is polluted enough. I wash my underwear by hand.

The suppositories calm spasms and calm my urethritis. I use them at bedtime.

Applying a calming essential oil to your temples plus smelling it may help your headaches as will drinking mint tea.

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Herbs2
Herbs2
in reply to Konagirl60

Ahh yeah that sounds really helpful. I'll ask about them when I visit my GP 😊

And thank you for the tips for my headaches! I have migraine tablets to take when one comes on, on top of the preventative tablets, and they work amazingly! But I do get normal headaches too and I don't use them for those, so that will help a lot!

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kalecolbe12

What is your diagnosis for rectal pain?did you do pt?

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swarke22
swarke22
in reply to Herbs2

Hi, there was a lady called Jilly Bond in Cardiff. I’m not sure if she still practices but she is on the Internet.

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Herbs2
Herbs2
in reply to swarke22

I'll look her up, thank you so much 😁

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swarke22
swarke22
in reply to Herbs2

You’re welcome. Hope it all goes well.

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Shy_x
Shy_x
in reply to swarke22

Hi swarke22 please can you give me the name of your ladies health physio? I’ve been looking for one that does internal trigger points in my area.

Herbs2 I’m sorry to hear what you’re going through. I’m not doctor by anymeans but I’ve read that recurrent instances of thrush can cause cause nerve damage/hypersensitivity. Have you tried Amitriptyline? It worked for my when I had nerve damage following surgery.

Or my friend had vestibuledynia which it sounds like is in the same area as you and she had the sensitive tissues removed and now has zero pain! This was in America though - can’t help but think the UK, and in particular the NHS, is very behind when it comes to this sort of thing but I’m sure there must be someone somewhere. Maybe Harley street? Would be pricey but at this point I bet you’re willing to spend anything!

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Herbs2
Herbs2
in reply to Shy_x

Hi Shy_x, thank you for your reply! Yeah I've heard the same thing which makes me wonder why the doctor I saw didn't mention any of this. It can make it seem like they don't really want to help 😔

Is Amitriptyline a topical thing or? I've never heard of any of this stuff!

And yeah I'm willing to pay pretty much anything at this point but I'm cautious about what will work and what won't. I'm only a student so I don't have a lot of funds available but if I knew something would work I'd find a way! 😂

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Shy_x
Shy_x
in reply to Herbs2

I feel you - I’ve had excessive discharge pelvic pain after sex and on my period (in my vagina not lower abdominal) and bladder issues for the past year following recurrent bouts of thrush. All tests negative. I Even paid for private consultation which was the biggest waste of £240 and I still left feeling patronised and crazy (everyone is saying it’s psychological). I have a nhs ‘second- opinion’ referral at the end of this month but know it’s just pointless. I honestly think unless you’re dying they don’t care or don’t realise how much it impacts your quality of life.

No amatryptaline is an anti-depressent but in low doses is used to treat chronic pain as it calms the nervous system. Are you looking for a way to cure this Herbally? I’ve also read steroid injections can help which I know a clinic in Harley street do - mcindoecentre.com/

I’m waiting for a lady at the sexual health clinic (who were actually so much more empathetic than the 2 gynaecologists I’ve seen) to find the details of a pelvic pain specialist in Sunderland which she said she will pass on to me and I think she’s available on the NHS too. I’ll let you know the details when I have them - or is this too far for you? Where abouts are you based?

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Herbs2
Herbs2
in reply to Shy_x

Yeah I totally agree! I do love the NHS to pieces but they can seem so uncaring. I'm in South West Wales so that is pretty far haha, but let me know how it goes!

I googled amitrypteline and I noticed that it is sometimes used to treat migraines, so if the doctor will be funny about prescribing it I could always ask to swap my migraine medication for it 🙂

Your problem seems crazy similar to mine with the bouts of thrush and bladder problems!

Hopefully we can both find a solution x

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Shy_x
Shy_x
in reply to Herbs2

Yeah if you search it with vulvodynia you’ll find loads of stuff! vulvalpainsociety.org/vps/i...

Work for some people not for others and you may have to inrease the dose slowly and can take a few weeks to kick in. But I was lucky and got relief fro day 1! It also gives you a great nights sleep haha.

Worth a try - let me know how it goes. I can’t believe a gp hasn’t mentioned this to you before now tbh!

What are your bladder issues if you don’t mind me asking?

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Herbs2
Herbs2
in reply to Shy_x

That's brilliant! I'll definitely ask to give that a go!

And I don't mind - for the year before I got vulvodynia I had basically a constant urinary tract infection with maybe the odd week or two of relief before it'd come up again. I was in a lot of pain and my urine was basically blood. It was during the middle of this when I found out I had thrush so I treated that and got given antibiotics for the UTI. The thrush went away but it came back not long after taking the antibiotics (which didn't touch the uti). I cleared up the thrush again but had to go on more antibiotics for the uti... and got thrush again. It was a constant cycle of something being wrong. Not long after I had got rid of both did the pain of vulvodynia appear 🙈 occassionally I get the niggly feeling of the beginning of a uti but I can usually blast away with loads and loads of water haha

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kalecolbe12
kalecolbe12
in reply to Shy_x

Wow are you from Sunderland?that's where I am from but I live in Arizona an I am dealing with these pelvic floor issues...I have a pt here thank God!!!I am also on cyclobenzaprine which is very helpful but I may try one of the triptyline catagory meds if I become to used to it

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jmcurie12month

I have suffered from vulvadinia for a number of years. My doctor has done trigger point injections and I am about to get them again as well as a Pudental Nerve Block. Its nothing to do with your head, its in your body. Yes, if you can find a very good PT person who does Pelvic floor physio that is another good way to go!!!

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Herbs2

Do the trigger point injections help? That's so interesting that they would tell me it's in my head if it's in my body 🤔 no wonder I've been feeling like I've been running into a brick wall the whole time!

How does the pelvic floor physio work?

Thanks so much!

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jmcurie12month

Vaginal pain is a real problem with so many who suffer from it and not enough doctors who know about it and are willing to put in the time and knowledge to be of help to us sufferers. Yes, the trigger point injections did help, but sometimes it must be repeated. I hope you will not allow your doctor to mistreat you, you must be an advocate for yourself until someone listens to you and will help. I personally don't like Pelvic floor therapy as I have issues with PTSD from a traumatic childhood. If you are ok with someone doing actual physical hands on with your vagina then I say go for it. I do have a doctor who can do trigger point injections, I will not and cannot do them in the office, I go to hospital where I am put under anastheseia . There are many variables and we are all different. I very much hope you can find a proper doctor who will listen to you, really, its not in your head.

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Herbs2

Thank you so much, it's nice to be able to talk to people who have the same health problem as me. It's the first time as I don't know anyone in real life who has.

I'll go round all the doctors in my surgery until one of them listens 😂

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kalecolbe12
kalecolbe12
in reply to Herbs2

5 months later did you ever get any help?

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jmcurie12month

I'd like to add, as delicately as I can, I know how much you might like to have your sex drive back but honestly how good can it feel when you are in pain. Pain must be addressed and I sincerely hope your loved one will understand, it should be good for both of you, you should not have to feel pain with sex. I thought of one more thing that might be helpful, I've been told to use lidocaine on the inside, it burns but will help it does take a couple of weeks though for the burning to stop, still, you need to find a good doctor who has knowledge of pain in women. I wish you all the best, and believe me I understand what you are going through. Keep me up to date as the process continues, I just want to know you are better.

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Herbs2

Yeah I understand, but even just to be in the mood to do something other than sexual intercourse has become kind of elusive to me at the moment.

It did take a while but he's much more understanding now. We're both just a bit down in the dumps about it as we both do want to connect sexually, but with me not being in the mood it does make it difficult.

Thank you for your suggestion of lidocaine! The more i know, the better! Bit scary that it burns at first but I guess it feels like that anyway so why not haha 😂

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Baileymom

Please find a pelvic pain therapist if you can. I’m in the U.S and I believe we have more, but they work wonders both externally and internally. They have helped me so much with my pelvic pain when no medical dr could.

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Herbs2
Herbs2
in reply to Baileymom

That sounds really helpful, thank you for your reply 😊

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Little_Miss_IBS

Hi,

So I have suffered a variety of different pain levels over the last 5 years a mix of vaginismus (inside pain) and provoked vulvodynia (outside pain).

I have gone through various different gp & gyno appointments and been signed off as having a perfectly healthy down below which still doesn’t explain my pain or lack of libido.

It was recommended I seeked a physco-sexual therapist, so I found one and am awaiting my appointment. However she did recommend that in the mean time I read a book called ‘when sex hurts – a woman’s guide to banishing sexual pain’ it’s an interesting read and backed with information from this book I convinced my gp to run hormone blood tests (for which I had to come off my contraception pill) and she has prescribed me amitrypteline at a 10mg dose to act as a muscle relaxant.

Since taking the amitrypteline I have managed to enjoy some ‘foreplay’ with my OH which will hopefully work to increase my libido again (fingers crossed) however I am still abstaining from my contraception in case they require more bloods so now the decision I have to make is to either find a non-hormonal contraception or start retaking my old contraception and hope they don’t require further bloods so I am able to test the work of the amitryteline at a 10mg dose before decided if I need to up to 20/25mg which is the max my dr recommended for me to try.

I will also add that I have and still try to persevere with vaginal trainers & a bio feedback Kegal Trainer but haven’t yet seen a noticeable difference. (Perhaps my next step will be to seek a trained physiotherapist after trying the therapist??)

Another book I tried reading was 7 steps to pain free sex, this has some pelvic floor exercises to try as well as intimacy exercises to try with your partner when you are ready to work on re-finding your libido.

I am still trying to learn more about this and other methods to try to solve the route of the pain in hopes to banish it…however it would appear that is can be linked to a lot of different underlying things such as Irritable Bowel Syndrome (which I suffer a bit with), Anxiety/depression, trauma or Auto-Immune diseases.

I have noticed that it is a very unknown thing and that’s because people just don’t talk about it openly…which I’d love to change….I’m just not sure how to go about breaking the taboo as I struggle to talk about it with my OH & drs let alone anyone else!

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Herbs2

Thank you so much for this! I'm glad I'm not the only one who is suffering from this! I'm 100% going to read those books and please let me know how you get on with the psychosexual therapist.

I would love to start talking openly about it too and it's only something I've really properly considered after posting this as I feel a lot of shame surrounding it.

I don't have IBS, auto-immune diseases or any relating past trauma although I have suffered with depression in the past and am naturally quite an anxious person. I'm not sure how this could come out of that however as sex has always been something where I have found confidence and fun. I feel as though I have lost a part of myself through this problem.

Hopefully I can take a step forward from my upcoming appointment with my GP 🤔

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Little_Miss_IBS

I used to be ‘up there’ on the sexually active scale....unfortunately a bit similar to you my oh never really got a chance to experience this before the problems started 🙈

When they say trauma apparently it can be completely un-related such as car accidents or grief from family passing etc....

Every time I came across trauma I instantly linked it back to the car accident we had our first Valentine’s Day 🙈 as the pain started soon after...but I guess the therapist might be able to enlighten me more this week...although I am kinda anxious about the meeting as I fear she will wanna go into details on my past....& they will also uncover things my oh doesn’t fully know about....the past is the past after all.

I’m trying to work out how to go public with the topic....part of me wants to jump into Instagram stories....because they can only be viewed for 24hrs....but I have family on there 😳😳 and my mother in law doesn’t need to know she isn’t getting grandchildren because her son isn’t getting any bedroom action 😂😳🙈

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Herbs2

Yeah I used to be pretty 'up there' too haha - which would have matched my boyfriend perfectly.

And a car accident on valentines day sounds awful! I can see how that would link, but I don't have anything like that to link this pain to.

It came on slowly and up until then I was excited to be with someone new that I really fancied, and the first time we had sex it was like realllyy good. So this doesn't make any sense 🤔

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