Vulvodynia ruining relationship [sad]

[aSleepyPrincess]

Hi All

Am am new so not sure where I should have posted this but I am desperate for any advice I can get!
I have Vulvodynia for which I take various medications prescribed by my pain management consultant. None of them seem to be working.
Unfortunately I am currently unable to have a sexual relationship with DH. He has been so patient with the situation but is now becoming increasingly frustrated.
The most stupid/awkward thing is I cant even give him a blow job or anything manual as even the thought of sex/sexual feelings increases the pain I feel!
Has anyone had anything similar and found any relief/saved your relationship?

No experience in this but have you seen this webpage: www.vulvalpainsociety.org/vps/index.php/vulval-conditions/vulvodynia

It has support groups on there, you might get some better advice. Must be awful, when did it start?

Thanks so much for replying, I have been on the website and have tried most of the things they suggest. All of the 'usual' remedies don't seem to make any difference. Looking back I think I have had it for over ten years but it just started as discomfort and has become progressively worse until I have ended up where I am today.

Hopeful Bump!

I know how you are feeling.

My situation is slightly different to yours. I am 19 weeks pregnant and I have pain inside my vagina that feels like I have pieces of broken glass stuck there. I have had this since the beginning of my pregnancy and it seems to be getting gradually worse. I have been prescribed many creams, pressarys and nothing will work. The pain literally makes me sit in tears and the doctors dont know what to do to get rid of it.

Although I have only had this since October I haven't done anything with my partner all the way through. Including Christmas, New Year, OH birthday.

I am also feeling bad for my partner and I dont know how long this might last.

I hope you find something to make your pain better soon.

Aww MI1091, I hope yours eases with the birth of your baby. It is so difficult as it isn't really something you can discuss in real life. I usually pretend I have back pain Thanks so much for your reply, it is nice to talk about it even if it is only on here

Definitely. I feel like I need to talk about it. But I don't want to talk about it to people in real life as its embarrassing! I have told my partner the reason why I do not want to do anything but he only knows the half of it..

Hope you are feeling better soon

I have had this for something like a decade now though not as bad as it sounds for you as I don't get pain from thought and feelings. I tried mild doses of antidepressants twice but never made any progress and hated the other side effects with no result. Psychosexual counselling just made me really uncomfortable. I did find that ligocaine(spelling?) as a topical numbing agent did help but I had to keep going back to the clinic to get it.

In the end, I have reached a point where if I am in the right mood, and if I get the position exactly right and if we use lots of lube I can have sex. But getting all of those to line up does mean we don't dtd that often. My DP is amazingly patient with it all but I am conscious of it and try to be affectionate in other ways. I think communicating about it is so important so he understands it isn't because I don't love him and so we can work together to try and find comfortable positions etc.

It is such a pain though, especially as there is no cure and so few people even seem to have heard of it.

Namechanged, I am glad you at least manage some form of a love life. Unfortunately even with the lidocaine I find it really difficult. I did self medicate with alcohol for alot of years but this is not sustainable. As much as I do feel sorry for myself I feel more sorry for my husband, I am so worried he will find someone who can meet all of his needs in a relationship x

So last night was my husband's birthday night out at a lovely hotel. I popped as many pills as possible and drank as much wine as I could stomach in order to have sex with him. Thankfully due to the recent dry spell everything was over fairly quickly. I am now in agony but at least he seems happy!

Sounds awful, I am very sorry for you. Have you asked about Savitex? Might help with neuropathic pain.

I hope you get some answers. I didn't have the pain you describe but I used to dread sex as just didn't find it enjoyable. I can relate to feeling like i needed a drink to get through it and just hoping it'd be quick.

I've no idea what my issue is but am single now so no longer a daily issue. Fwiw it wasn't the main reason for our relationship ending.

I've been through exactly what you are describing- it turned out to be pudendal nerve damage. I have had a few procedures- all trial and error but with amazing, determined consultants! I'm 95% cured but it took me nearly 7 years- i'd really like to support you to find the right treatment a lot quicker than I did! I'll pm you my mobile number if you fancy a chat.

OP, my partner had this. She did what you just did to try and "please" me. I stopped as soon as it was clear she was in pain. She tried to persuade me to carry on but of course I said no. Why would I do something that would cause pain to someone I loved. I felt as if I'd be raping her. Unfortunately our relationship never recovered. After 5 years of a totally sexless relationship I had to leave. I was 36 and the idea of never being intimate again just wasn't for me. My ex had never liked receiving or giving oral sex, so with no intercourse there really was nothing physical. It became having a housemate, not a relationship. That was 7 years ago. I'm still single but it was the right decision. I would urge you to investigate all options.

I don't have this, however I have something else which makes sex and sexual thoughts sometimes agony.

My blood vessels constrict too much to the point the blood can't get through however the blood continues to attempt to try!

The result? Painful thoughts & painful sex.....some times it goes, some times it stays the entire time!

The hardest part about all of it was trying to explain to a doctor what the hell was going on!

I still don't have a name for it though as doctors aren't entirely sure why it's happening.....I was prescribed viagra to try to ease it, however, that requires planning.

Actually I've just seen a few of you are suffering the same thing so I'll tell my story in case it may help anyone else have a lightbulb moment!
After the birth of dd1 my newly sewn up bits were shut in the bed by the midwife (you know where the bottom of the bed seperates (don't ask lol!)) but I ended up with massive haematoma and another surgery. Sex really hurt the first time we tried and eventually they performed a Fenton procedure to remove some unsupported skin- didn't help with pain but looked less of a car crash! . Then I had another DD and the pain got worse- another Fenton procedure followed.

Pain was still bad and got progressively worse so tampons and jeans aggravated it - it would swell up and just feel like it was cut tbh, then random itchy sensations joined the party with no medical reason. At first I think my gynae thought there was now no medical reason it must be in my head but she was still supportive. Eventually she managed to get approval to inject Botox into my perennium to see if it would help. It did - 80% for 8 weeks, I had this done another 2 times over 1 year.

My gynae then referred me to pain clinic and they gave me neuromodulation sessions- they were great but results temporary- i did consider buying a machine for home - it scrambles the nerve so it doesn't send the pain signal to your brain- painless and quick too.

Then I read about pudendal nerve damage online and my pain consultant agreed to inject the nerve. They do this under sedation but you are awake whilst they locate the nerve in theatre with an electrical current. The results were amazing, I had this done every 6 months (3 times in total) and my last one hasn't needed topping up- either my brain isn't receiving the pain signal now or the injections gave it a chance to repair itself. Also I should add My periods made the pain worse so somewhere during this 7 years I had ablation and sterilisation. At some point I was also on lyrica for 6 months and they made me crazy- I put my foot down and refused any other medication for the problem and instead pushed for less general diagnosis and physical treatment!

When sex hurts your brain puts a barrier up and that did take a while to go even after the treatment but I have been so lucky to have had great consultants (and medical insurance) but the nhs do offer all of these things- persistence is key.

Good luck ladies, you're not alone! X

Sorry- it may help if I describe the pain I had - during sex it felt like my perennium was an iron bar- rigid and like I was tearing but to touch felt normal. After sex felt like it had swelled shut and a bit like post birth pain for up to 5 days- tampons and tight jeans also caused similar effect but not as bad. Sometimes I would also get itchy or prickling sensations all over my Vulva- completely generalised area but felt like being pricked with needles.
Ok- tmi overload!!! Sorry but I know how hellish it is to live with so thought I'd share on this post in case it helped!

I don't have this kind of nerve damage but I have limb and facial nerve damage and IMO i agree with other posters about asking for investigations into nerve damage and anything that can be done? If nothing else is working!
My limb nerve damage can make sex very tiring and uncomfortable because I am more likely to spasm and cramp up, and it's not always simple to get out of them once it's started. Not the same i know, I just feel for you. Have you seen a consultant? Maybe a 2nd opinion would help you?

Thank you so much for all of your replies, they do give me something else to look into and some hope for a pain free future. ShatnersWig can I ask was it purely the lack of sex that made you leave or were there other contributing factors? The reason I ask is because my Husband did say to me when we argue that the lack of sex means we don't ease the frustrations of the argument if you see what I mean? Karmaisabitch it is very strange isn't it, almost like a self fulfilling prophecy........ I wish we could all take a magic tablet and be cured, it would make our lives so much simpler. I would hate to lose a thirteen year relationship because of this, it doesn't seem right

aSleepy I can only speak personally and it may be very different for other people of course. But the lack of sex meant we turned into housemates who happened to sleep in the same bed. Sex drives fluctuate anyway, please don't think I'm someone who gets stroppy because I've not had sex in umpteen weeks. But for me physical intimacy is the glue that holds things together and stops things being just a friendship. My partner became even less tactile than she was because she felt it was unfair on me to potentially (in her words) "give signs of hope". And I think over time things that washed off your back did become more of a niggle; you'd brush it off from a loving partner but somehow when you're now just friends or housemates, things seem different. I do suspect that had we both been in our 50s or 60s, maybe we'd have weathered it. But at the time we split I was 36 and hadn't had sex in 5 years. I just couldn't accept another 10, 20, 30 years with no physical intimacy. We both fell out of love over that time because we'd become different people and the closeness had long gone.

Thank you Shatners your situation does sound remarkably like my own. It has given me a great deal to think about. Sometimes I forget what he misses out on because my focus is on the pain, when things are bad I feel like he should just 'deal' with it but of course he has feelings too and god knows where we will end up. x

Hi All, I am the original Op but have obviously nc since my original post! I'm not sure if this is the done thing here but I wanted to pop back with an update!
Since I originally posted I managed to get a consultant in pain management to have a look at me, I can only say she has been amazing and totally life changing 😊
I have had two lots of injections into the nerves in my back, the first was okay and did help. The second has almost cured me.
Believe me I am crying with relief as I write this, it was a long stressful road with almost no end in sight at one point and now I feel almost normal most days.
I am still with my husband and we are by no means swinging from the chandeliers however that is through choice (tiredness 😂) rather than enforcement so doesn't seem too bad!
I just wanted to update you incase this gives anyone suffering continual pain a little bit of hope that things can get better x

OP so glad to here that things are working out. Wishing you and your husband every happiness.

Hopoindown31 thank you 😊

That's great OP. You must have one relieved DH too!

Really pleased for you it's got so much better!