Desperate to get better

I have vulvodynia and other health issues ie pernicious anaemia and possible coeliacs as well as idiopathic angiodema. At the moment my vulvodynia is worse than it ever has been (apart from when it first began) and I think I have BV which may be causing it to be worse this time. I'm in so much pain I'm practically in tears....sex is out of the question, don't even go there. I want to know what to do to be out of this pain once and for all!!!!

I feel your pain- I tried everything I did topicals, oral pills, supposetories, birth control, estrace, etc etc the list goes on. I'd feel relief and than bam it would come right back. It is a horrible pain and I empathize with you 100%! I was just told today that I am a candidate for surgery and I'm seriously thinking of doing it (I'm making the appointment for December and trying not to freak out in the process!) I don't know if you're a candidate for this but most everyone who I have heard who has had it is really happy about it. Aside from that, make sure you have no infections because that can obviously make it worse. Get checked for ureaplasma, strep, (I had all of those including UTI, BV and yeast!) But they were all treated and the pain never got better. I have also tried various vitamins I'm on a yeast defense vitamin and a probiotic, and *knock on wood* I have seen a difference in how my body reacts to infections. Of course, my previous doctors prior were morons and the one had me on 15 prescriptions- 5 of the same kind! Clearly if I didn't respond the first time it wouldn't the second, but what do I know I didn't go to med school! Also, be careful I had doctors who wanted to give me surgery for IC and endometriosis- I DONT HAVE THOSE. So please please be careful about who you see!

Also lidocaine helps numb it!

Thanks Alana.

I will try everything. I think the main thing for me at the moment is to be free of anything like thrush or BV. What is a yeast defence vitamin?

Secondly manage to keep on top of looking after my nervous system, and general health, as well as trying things specifically for vulvodynia ie probiotics, vitamin E, coconut oil....if none of this works I'll even try oestrogen....If I feel well enough to contemplate sex (which when I have an infection is a huge no no, but if it's just vulvodynia on it's own and it seems not too bad I'll try lidocaine gel)

I'm avoiding relationships at the moment....I just don't know how I'd explain all of this to a guy, that it could be months and months down the line before I can even try and have sex because of all the remedies and things I need to do to get this better....I worry that they will get impatient and horrible towards me and make me feel stressed and put me off men, sex and relationships for life....

Yeast defense is a vitamin you can buy at vitamin shoppe. It's just a bunch of garlic. Can't hurt ya know? Yeah, I'm all for trying natural stuff it just isnt working for me, and now the pain is so bad its shooting down my thighs. Horrible stuff, I'm gunna try ice when I get home I can't handle it.

As for relationships, I avoided them too, what kind of guy would really want me? I mentioned it to my doctor, and he said I didn't need to suffer anymore and he suggested the surgery. He said he had good results with it, and I'm honestly just over it. Where do you live? If youre nearby in anyway I totally reccomend him.

I've tried accupuncture which takes the edge off, but it's not a cure- at least for me. I tried coconut oil, tastes disgusting and I almost vomited. I've tried lidocaine, pain comes back within a few hours but it works- just masks everything. I had strep, BV, yeast, ureaplasma, UTI but now I'm wondering if it wasn't just the vv all together and they just wanted to treat me because they had no idea what else to do (the UTI I knew for sure I had, for obvious reasons, the others I had pain and discomfort). I don't know how long you want to wait, but when I start crying because I'm "broken" it's just not worth it anymore. I tired Estrace, burned like a son of a gun and didn't do anything anyway.

But where are you living maybe I can help with doctors

Thanks. I'm in the UK....I have a lot of other health issues to sort out as well though not just my vulvodynia...to be honest when they are under control the vulvodynia gets a LOT better....which is why I don't think I'll have it forever, or at least not have it as badly forever....if I get it to go back to just only mild vulvodynia and that is as good as it gets, I'd rather just live with that than have surgery.....I have heard of people having botox down there and that is supposed to help so as a very last resort I might try that. Don't fancy having operations and stuff as I think this bout is more infection related so I need to treat that.

As for relationships, plenty of people do have really good relationships with vulvodynia or with other medical conditions. 15% of women suffer from vulvodynia...as many as suffer from hayfever....and then there are other conditions that can make sex a problem ie painful or out of the question, some chronic, some recurring, and I reckon most women have something at some point whether it's endometriosis, fibroids, recurring cystitis, problems after childbirth or other conditions and they can't....and they don't all get divorced cos of it....I think if you have a good relationship it's not such a big deal, sex is an important part of a relationship, but it's not the be all and end all, and you can work around it....ie non penetrative, or use lidocaine gel (not when it's like this though, I wouldn't let someone anywhere near me when it's this bad!!!). I think most women have a period of their life where they are physically not able to have sex, and they're in relationships or married and they don't seem to worry about it....and also some men suffer from conditions as well, and some are impotent, which in a way is worse because then they can't even be intimate and have any sexual experiences at all....I can still have orgasms, and I still have sexual feelings....it's just penetrative sex that is the problem (I have lost my sex drive over the last couple of years, but that is more due to pernicious anaemia which is being treated). I think if someone dumps you, cheats on you or gives you a hard time over this it highlights that it was a really shallow relationship in the first place, or the communication of these issues was crap.

I think for me the other big thing is overcoming and changing my thought patterns and my mind set around the issues this originally gave me regarding men and sex and that is not something any operation can cure.

At the same time, I just want to be able to have normal sex like everyone else. I feel this condition has robbed me of the experiences I used to have and that everyone else has, and it will also rob my future partner of that as well....but I hope it's not forever and I will do everything within my power to make it better....

My plan of action goes like this now:

1.) Treat infections first
2.) Keep on top of pernicious anaemia and related conditions
3.) Be open to having a relationship, don't let this put me off, now that I have my head around the emotional impact of this illness more.
4.) Find ways of managing it ie lidocaine, taking the focus off penetrative sex, being able to judge when I can and when I can't, switching to something else if sex becomes painful.
May try using dilators myself first with the lidocaine gel. I don't want to jump right into just having penetrative sex after I've been through all of this.
5.) Trying vitamin supplements
6.) Trying coconut oil, vitamin E oil, bicarbonate of soda baths etc
7.) Amitryptiline
8.) Botox
9.) Surgery as an extreme last resort if it's not infection related and just the pain condition.

I agree, but where I sometimes do have pain, a lot of the times I do. And sex is impossible for me where I cant have it even if I tried. And tampons, forget it. I'm sick of wearing pads! I'm sick of not being able to function like a normal 26 year old. That's why surgery where it would suck, sounds amazing in the long run. I don't know. I have tried all of the stuff you mentioned (minus botox, because where it was never an option, I don't want to stick poison into my system and I hear it hurts and comes back). So I dont know. Ger.

I'm going to try everything, but probably not Botox now you've said that.

I've come to the point where (although on really bad days I don't want anyone coming near me) I'd quite happily just have a sex life minus the penetration....just not sure a guy would be happy with that though....but there's not a lot I can do.

I know this sounds wierd, but I'd feel resentful at having surgery, because I'd see it as having parts of my body cut about, so that I can please a guy (someone I haven't even met yet), it's like resigning myself to the fact that no one will love me unless I can supply them with sex and it makes me hate sex...I know that sounds so wierd, but it's the emotional impact all of this has had on me. It's screwed me up big time.

Well Botox is rat poision (I think I forget what type it is lol) Frankly, it was never mentioned for my treatment, but I have heard of people trying it. I just don't feel comfortable with putting something like that in my body- especially if it wears off.

Well, no, it doesn't sound crazy at all. But my deal is if I'm in pain, why would I want to prolong it? And yeah non-penatrative sex is fun, but the penatrative kind is AMAZING (I have been there and miss that feeling!) and that's not true, someone will love you regardless of your issues, but if you can make it easier for yourself, that's what I'm concentrating on! I've become so scared of sex I start to cry or don't recriprocate because I get so scared- and I don't want to live like that.

Where abouts in the UK are you located?

Thanks Alana...I'm based in the West Midlands....

I am desperate to get better....the emotional impact of this illness has been incredibly difficult....I end relationships before they really get started....people constantly ask why I'm single, then procede to give me "advice" on how to meet someone....when all the while I'm actively avoiding it cos of my problem....and I can't tell them why....so I sit there nodding and smiling while I feel as though they are sticking a knife in the wound. It makes me question whether I'll ever have a happy relationship/marriage/family because of this.

When I see sex scenes on the TV I get depressed, because I can't do that because I'm in so much pain. Sex seems to be something people without medical problems take for granted....Some days I just cry my eyes out over the whole thing.....I just want to be able to experience what everyone else experiences....I can't believe that I've resigned myself to a life without penetrative sex...I feel trapped in this body.....

The thing is, this is a relatively common condition...15-20% of women suffer from it, that is as many as suffer from hayfever....yet it's never talked about....if you're single people assume you're just not out there meeting people and constantly give you advice, never thinking for one second there could be another reason, something that is putting you off....it's taken for granted that you can have sex.

I do the same thing!!! When I'm with someone I find something wrong with THEM because I don't want to get involved. I had a conversation about this with my friend last night and she said it was normal- but I dont think she understood that she can get laid- I cant. I understand about the depression I feel the same way, which is why if my doc can help with surgery, I feel better about it. There is nothing more to try I guess. I hate watching sex scenes and I wonder the same. I hate when people say there is someone for everyone. Yeah ok. Or sex isn't important. Again, shut up most people like sex- I did before this stupid problem. Shut up! I honestly didn't realize how common this was until I logged on here, but I guess it makes sense. But before I got my diagnosis and my doctors were like oh its this or that completely curable so I kept taking antibiotics with NO RELIEF. I'm glad to know at least that this isn't an incurable infection. I had a doc want to do surgery for endometriosis and an IC challenge test which she claimed was painless (turns out the test is excructiating and can cause worse problems). And what's worse is when I looked up the symptoms, I had NONE (except my periods are erratic and cramps but its ok on the pill). I said no to all of that and continue my search. I'm kind of happy to know what I'm dealing with even though it does suck! The website I found my doc on was the National Vulvodynia website. Maybe they have a doc on there near you?

Alana3 wrote:Yeast defense is a vitamin you can buy at vitamin shoppe. It's just a bunch of garlic. Can't hurt ya know? Yeah, I'm all for trying natural stuff it just isnt working for me, and now the pain is so bad its shooting down my thighs. Horrible stuff, I'm gunna try ice when I get home I can't handle it.

As for relationships, I avoided them too, what kind of guy would really want me? I mentioned it to my doctor, and he said I didn't need to suffer anymore and he suggested the surgery. He said he had good results with it, and I'm honestly just over it. Where do you live? If youre nearby in anyway I totally reccomend him.

I've tried accupuncture which takes the edge off, but it's not a cure- at least for me. I tried coconut oil, tastes disgusting and I almost vomited. I've tried lidocaine, pain comes back within a few hours but it works- just masks everything. I had strep, BV, yeast, ureaplasma, UTI but now I'm wondering if it wasn't just the vv all together and they just wanted to treat me because they had no idea what else to do (the UTI I knew for sure I had, for obvious reasons, the others I had pain and discomfort). I don't know how long you want to wait, but when I start crying because I'm "broken" it's just not worth it anymore. I tired Estrace, burned like a son of a gun and didn't do anything anyway.

But where are you living maybe I can help with doctors

Alana, I like you. haha. I just wanted to tell you that if a guy doesn't want you because you are unable to have sex, he's not worth it anyway. It is such a crucial part in a relationship, YES. BUT..it isn't everything Can't wait for this surgery to happen for you. Excited!

Thanks! I'm scared to death for the surgery lol

Thanks. I just want to be pain free full stop, even if there is no such thing as sex.

But obviously the big impact is on your sex life, and I just want to be able to have a normal relationship and sex life just like everyone else!

I'll try everything, but not surgery though.....

I know a lot of people get better from simple things like ingesting coconut oil. I don't think there is any need for surgery with my particular case....maybe as a VERY last resort.

I just don't have pain all the time but when it does it's horrible so I understand but I do want a normal sex life again I miss it I miss being normal right now im having a bit of a flare because I have my period But for two weeks I usually docont have pain. Yay! Sorry im on my phone don't mind the spelling. I wish you lived closer id love to meet you!

Thanks. I'd love to meet you too.

Again, I just want to be normal. I have pain pretty much everyday, it's like a constant reminder of what I can't do and it's really changed me....the frustrating thing is, you can't even talk about it, yet it affects you physically and emotionally.

My pain first started about 7 years ago and was really bad for 4 months, then it got better, but came back and it was just mild pain that was there all the time. Then 2 years ago it came back ten fold and stayed for almost a year this time, then went back to how it was before, then almost completely went for 4 months, then came back really bad for 3 and went again for another 3 months (never completely though)....now it's fairly mild, but I still have it, although I had a really bad flare up a couple of weeks ago.

Hopefully you don't mind me adding some stuff, what you guys are feeling is so normal. What person is going be happy go lucky person and feel like life is wonderful when your va-ga-ga is screaming at you with pain!!!! I have learned that each of us have different treatments that work and I have learned that being calm and relaxing helps with pain, because mine is due to muscle tension. I know it's hard when the pain is unbearable, but try to just take some deep breaths and calm your fears. It sounds weird that I have to physically control my muscles and learn to relax them, my PT has helped with this and I also got dilators that have helped. I think it was you Alana3 that said you have pain shooting down your thighs, that sounds like it could be a nerve problem. I have heard other women and also myself have gotten relief from chiropractors, not sure if you have tried that. Now even if I am in pain again, which I have had flare ups they aren't as painful as before all these treatments.

When you guys spoke about relationships and being fearful of what men will think, that you will feel rejected and worse than you started I'm sure that is normal. There are a lot of jerks out there that only care about one thing, but I also want to let you know there are wonderful men out there. My v started when my husband was away for the military (I was told it was something else and he still stayed), we weren't married yet, but he still stood by me and married me. We couldn't consummate our marriage and that hurt and still hurts to think we don't have a normal marriage. I have had to learn to let him carry some of this burden, because he obviously doesn't want me in pain. I still feel like I have robbed him, but I know he loves me and isn't going anywhere. My point is you will find someone, but first you have to accept this is something you have to deal with and you deserve nothing but the best. You have so much to offer someone and someone is out there for you. Be strong this will get better......I believe we aren't given something we can't deal with. This is making us stronger and more courageous to stand up and say I have this, but it doesn't define who I am.

Yeah it's weird because I don't always have pain but when I I omg forget it! Mines mostly provoked so that's why my doc feels good about surgery. I sometimes do have pain down my thighs but usually not. I can't explain it. Thanks for your story I am afraid to get with anyone and of course before I got diagnosed I thought it was an std especially since my former doc kept putting me on antibiotics and I was never cured. Douche. It's just so frustrating but im sure you know this. Im scared about the surgery. Idk what to do...

Thanks Nova Chick...that's just what I needed to hear. It has been a journey, physically and emotionally. I'm hoping that one day I won't always have this, and I will be able to have a normal sex life. But it's taught me a lot, and I think, having been through this that I may even begin to form more meaningful relationships and choose a partner more wisely than I would have done had I have not gone through this, as it's made me stop and think.

I actually think it's been a real learning curve and maybe even protected me in some ways.

I do believe now that I deserve love, genuine love, not just a guy who wants a relationship just because it means regular sex. There is a huge difference.

My pain sounds different from yours though which is making me wonder if it is vulvodynia, or something else....because mine isn't provoked pain, it's pain that is there all the time.

Ceriane wrote:Thanks. I just want to be pain free full stop, even if there is no such thing as sex.

But obviously the big impact is on your sex life, and I just want to be able to have a normal relationship and sex life just like everyone else!

I'll try everything!

Don't give up--there is a cure!

Thanks. Do you know the cure?

Ceriane wrote:Thanks. Do you know the cure?

Some get cured from coconut oil. Premarin helped me but didn't take it away. And now my option is surgery...which has cured everyone I've talked to thus far.

What is premarin, and what do you do with the coconut oil. I'm going to try everything first like looking after my immune system/nervous system, surgery isn't really something I want to consider, I want to leave it to heal by itself, but I need to be sure this is what my problem is first as I have pain all the time, sometimes better sometimes worse....it's more like I get flare ups of it. I've heard of surgery curing vulvar vestibulitis which sounds different from what I've got. With surgery I worry about infections or making it even worse. To be honest I'm not completely sure of what is causing my pain, it might even be infections or a problem with my immune system, nervous system as I also have a lot of other health problems and when they are under control my vulvodynia is more under control. I need to look into what's going on more and try different things first as surgery seems way too extreme.

Another thing I noticed, is that when it first started, I would constantly use pessaries as I thought I had thrush....but it was making it 1000000x worse (as it was vulvodynia, not thrush)....since leaving those off for a while, it's been heaps better. Maybe my problem was nothing more than being allergic to thrush pessaries? I'll definatately never use a thrush pessary ever again, they're not the answer.

Ceriane wrote:What is premarin, and what do you do with the coconut oil. I'm going to try everything first like looking after my immune system/nervous system, if I'm still having problems in a years time I'll consider surgery, but I need to be sure this is what my problem is first as I have pain all the time, sometimes better sometimes worse....it's more like I get flare ups of it. I've heard of surgery curing vulvar vestibulitis which sounds different from what I've got. With surgery I worry about infections or making it even worse. To be honest I'm not completely sure of what is causing my pain, it might even be infections or a problem with my immune system, nervous system as I also have a lot of other health problems and when they are under control my vulvodynia is more under control. I need to look into what's going on more and try different things first as surgery seems a bit too extreme.

It's weird because most women on here haven't even TRIED premarin...and it actually took the pain completely away for me...but I had to keep using it. It's like it didn't cure it, but it prolonged it..if that makes sense? You have to get a prescription for it. It's just a cream you put on 2-3 times a day. Make sure your insurance company covers it because if not, it could be around $300. I only paid $25 because of insurance. As far as coconut oil..that didn't do anything for me. You can mix it in with each meal, digest it, or use it as lubricant. And I completely agree--make sure you are diagnosed correctly and you are going to a doctor who knows what he/she is talking about...they're hard to come by to be honest. I hope you can figure it out and for your sake, I seriously hope it's not extreme.

Thanks.....is that the same for vitamin E. Do I have to insert it somehow or just put it around the area.