Fri Oct 10, 2014 8:51 am by LeonieFlower
I am 26 and have been suffering with this hell of a disease for 8 years (diagnosed 2006) and it has only gotten worse year after year... I am on pain meds and tricyclic antidepressant (amitriptyline) which isnt helping. I get erratic when taking the meds. I have tried antibiotic creams, lions mane (supplement), zinc oxide, cold packs, …
Sun Dec 04, 2011 5:19 am by ria
I am now pain free no medication. Please look up Dr Robert Morse on youtube he has helped me with my constant pain he is a Naturopathic doctor in America. I did not go and see him I had a telephone consultation, but please feel free to call the clinic advice is there for free can you beleive it
If you need any advice please contact me I …
Mon Oct 05, 2015 7:14 am by lils.panda
I'm 25 years old and I have suffered from vulvodynia for as long as I can remember. I spent most of my teen years being told I had some sort of eczema/skin problems down there - I tried all the creams out there which would never work and doctors would never believe me that I hadn't tried to use them as I still felt pain down there after. I felt really embarrased and hurt by this so …
Tue Sep 29, 2015 9:10 am by Lil
Please help if you can.
I have been suffering with bumps on the vaginal area and it does seem as if I can get rid of them. I have not been sexually active due to these occurrences The doctors do not know what is causing this reaction but I am guessing it is the medication that I have been taking for high blood pressure (I am trying to wean myself off of because my …
Sat Aug 15, 2015 12:06 pm by SoHelpless
Mon Aug 02, 2010 3:36 am by Sebby (Admin)
Sun Aug 02, 2015 3:17 am by Fielder
I'm a newbie. I live in the UK.
I'm trying to work out the best cushion to get for my vulvodynia. I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.
I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …
Sat Aug 01, 2015 6:42 am by WaahwaahUK
Also, I've just been prescribed Nortryptiline 10mg. Scared to try it but going to give it a shot... I apparently have pudendal nerve inflammation along with incredibly sensitive nerve endings in my vulva and labia …
Tue Jul 14, 2015 10:18 am by Funchik93
I'm 21, 16 days ago I had my full vestibulectomy surgery. I'm supposed to have my period soon and I really wanted to hear from women who are past this process - what should I expect? Does it hurt? Do you have any advice on hygiene and stuff like that?
Through this all recovery process I've learned that the most difficult thing for me is dealing with all the …
I was eighteen when I had my first gynecological examination. I knew I had a serious pain problem, and I wanted to get to the bottom of it. But when I explained my situation to my GP, she sighed, looked at me like I was an idiot, and made it clear that I was wasting her time. When she examined me she did so roughly, and when I started crying she asked me in a drippingly patronising tone "so you've never had a boyfriend then?" She told me the only reason I had pain was because I was inexperienced and tense, and that I was physically normal. When I insisted there must be something wrong, she agreed to refer me to a psychosexual therapist. But I never heard back from her.
The next doctor I saw about the problem I knew I had, gave me the most brutal physical examination I've ever had. She laughed at me when I told her I thought something was wrong, she went straight in with two fingers and NO lube, and she refused to stop even when I screamed in agony and tried to push her arm away. It went on for several minutes, with me begging her to stop the whole time. Afterwards, I was given the patronising "you're just tense" talk. I went home and cried for an hour, and my vagina hurt for days.
The next doctor I went to see sent me to an actual gynecologist. However, I could only see the gynecologist if I first agreed to see a psychosexual therapist, because again, it seemed unlikely that I had an actual physical problem. This therapist told me I was physically normal, but "if I asolutely must see the gynecologist" then she would refer me. This whole process of referral took OVER A YEAR.
The gynecologist I was sent to agreed to remove my hymen, and I was put on yet another waiting list for surgery. It went well, and things have improved for me, but I still have a lot of pain, which is when I self-diagnosed with vulvodynia. I thought that now everything was out in the open and it was clear that I had this problem, things would go smoothly and I would be treated more kindly by medical professionals. I was wrong.
I was sent back to the psychosexual therapist to talk about my progress. Let me remind you that this is a woman I had met only once before, and spent only five minutes with. This time, she told me that now my hymen was gone, I should start having sex as soon as possible, because it's an 'adult' thing to do. She said that I acted like a child, and spoke like a child, and that through having sex I would finaally be able to 'grow-up'. She then asked if I had a boyfriend, and when I said no she asked me if I had a male friend I would consider losing my virginity to, because it would make her job easier if I was already in a sexual relationship.
I had an appointment with my gynecologist last Monday to talk about vulvodynia treatments, and although she STILL wasn't convinced this was my issue, she agreed to give me lidocaine gel. I was prescribed 5%, which I had to ask my GP for. When I got to the GP, I was told I couldn't have it, because they only gave out 2% now. Also, I wouldn't be able to pick it up for a few days. I waited until Thurdsday, then went to collect it because I was told it was ready, but after travelling all the way there, I was told that actually it would be another day. On Friday, I finally go to collect it, AND I AM ONLY GIVEN TWO FUCKING DOZES. I am supposed to apply the gel two times a day, indefinately, for a long-term condition, and they only gave me two dozes. Two single-use syringes. THANK YOU, MEDICAL PROFESSIONALS, YOU COMPLETE TWATS.
And because of the fucking Royal Wedding, and the stupid public holiday on Monday, I have to wait until Tuesday to get back to my doctor to sort this fuckery. It just blows my mind how these people can continuously screw me over. I am living with a fucking nightmare condition that makes any chance of a normal sex life/relationship impossible, and leaves my most sensitive part in agony, and I feel like I am never being taken seriously, and am being left to deal with this on my own.
I apologise for the length of this post, I just needed to get all that out. It was cathartic, like writing a diary entry or something. I'm just so furious with how I am continuously treated that I can barely function.
- Posts: 33
Join date: 2010-07-31
Owww that makes me mad! It's bedtime otherwise I'd rant a bit more!
Take care xx.
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Join date: 2010-09-09
Location: New Zealand
- Posts: 1159
Join date: 2010-06-12
I mean what kind of an idiot 'psychosexual therapist' recommends to a young girl suffering with chronic vaginal pain that she should go have sex with any random guy as soon as possible, regardless of whether she wants or not? =s
The dismissive attitudes towards pain during examinations is shocking but familiar as well, I can relate to that one, I also had my first gyno exam whilst I was experiencing chronic pain and before I'd ever had sex, I bled for two days. =|
I guess I'm lucky in that the second doctor I saw (one I'm still seeing) was much more sympathetic about pain during exams and had actually heard of vulvodynia.
- Posts: 36
Join date: 2011-04-12
now seeing gynae private( money talks!!) so am hoping i get somewhere with them.
- Posts: 22
Join date: 2011-08-02
When you went to your GP they should obviously have asked if you were sexually active to rule out STDs. When you weren't they should have just screened for thrush, BV etc and concentrated on dealing with the generalised pain...you didn't need to be referred to a psychosexual therapist. If it was still a problem when you wanted to have sex...or you were sexually active and it was still a problem, then that is when you need to see a psychosexual therapist about it. This is what happened with me.
In my experience they usually ask if your sexually active to rule out STDs, if your not they treat it as a pain problem rather than a sexual problem. If you are they rule out STD's, then deal with the pain (as well as screening for general infections and gyno problems)...and also if your in pain during the tests you have every right to say so...and they are usually quite apologetic about causing you pain (I tend to just go through it...but I think I'd be traumatised if they weren't sympathetic about it). You can also get referred to a psychosexual therapist if sexual pain/anxiety affects a relationship (I went to one for anxiety about penetrative sex which I felt was holding me back from getting into a new relationship because I'd experienecd vulvodynia and vaginismus as a result in a previous relationship and this had affected how I felt about sex)....I was in my mid twenties at this point and she was wonderful...made me feel that I deserved love (that was the main issue we worked on) and that if someone cared about me they wouldn't run a mile just because of my problem and that there should be more to the relationship than just sex...ie a foundation of love and trust...they should see you as someone they're in love with not just someone to have sex with, a lot of it was about rebuidling my self esteem again and realising that I was worthy of love and worth so much more than just my body! ...when we moved onto how the sexual problem would affect a relationship she suggested taking it as slowly as you need to ....don't rush into it...and that there are other ways to be intimate other than penetration, but when you do decide to have penetrative sex again...work out where your anxiety starts and build on it...ie you can get used to just being intimate again, and then build up to penetration...ie you can start with using dilators to overcome the fear/vaginismus...etc. This is how you should have been treated.
My advice...find another GP, gynaecologist (get screened for yeast infections/BV and other gyno issues ie cysts they'll know what to test for if you describe where your pain is and what sort of pain) and when you do decide to have sex if there is still pain and anxiety see another psychosexual therapist. I recommend Relate as they were really good with me. If anything the advice they gave me was the opposite from the advice you were given by the psychosexual therapist.
Sex is an important part of a relationship...but your worth so much more as a person than what you can give sexually...sex is just an expression of your feelings towards each other and it's an equal thing! ...and you can do what you like with it.
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Join date: 2012-02-16
My hymen was removed because it was thicker than it should have been, and initially I thought that's where my pain was coming from. My gyn suggested it would be easier for me to start using dilators if my hymen was removed, which is why they performed surgery. Trying to break it naturally would have been virtually impossible, that's how thick it was.
But other than that, you're right, every piece of advice I was given was utter bullshit.
I am lucky in that I was able to do a lot of research myself online, and pretty much everything I have gotten so far in terms of recovery (dilators, lidocaine, pain meds, etc) are a result of me doing my own reading, and then demanding treatment. If I didn't know as much as I do now, I doubt doctors would have given me any help at all. I had to do all of the work myself.
I am also lucky in that I don't believe a word of what the psychosexual therapist told me. I think if I had been younger and more impressionable, what she said would have really hurt me and caused a lot of damage, but I am secure in my values and beliefs, and I am able to realise that she is an idiot. I know that sex is not what makes a person an adult, and that in actual fact, the mature thing to do is wait until I am ready.
Since I posted this I have been put on pain medication and it has helped a little. Used in conjunction with the lidocaine gel, I don't think sex will be a problem. Which is a relief. It would be lovely to not have to use the gel as it is really unromantic and annoying, but I'm happy just to be able to have sex, which wasn't possible before.
Anyway, thank you for your kind words. It's awful how many ridiculous medical professionals are out there.
- Posts: 74
Join date: 2012-02-16
WTF, doctors! I wonder if they know how much influence they can have. I finally found a good urogynecologist who listens to me, but I still worry about how knowledgeable any of them are about vulvodynia. Does anyone get the impression that no one really knows enough about it?
I'm so glad you've found insight into what causes your pain, Lolainslacks, and that the lidocaine has been helping! (I also definitely agree about sex needing to be meaningful.) I've been usuing lidocaine as needed, but my doctor just prescribed gabapentin cream, which I need to pick up from the pharmacy (chemist?).
- Posts: 2
Join date: 2012-03-12
Location: Washington, DC area
Interestingly enough, this week I had to go back to by GP to get my dosage of amitriptyline raised, and I was sent to the first doctor I saw in the very beginning. When I saw her at 17, she was really irritated by my questions, and insisted it was all in my head, so I was expecting her to give me some trouble this time as well. But when I went in she was really lovely. I could see that she had my file open and had been reading it before I came in, which means that she now knows she was wrong and that I actually do have something very serious wrong with me. I think she must have been feeling guilty, because the whole appointment went really well, she was really sympathetic and accommodating, it took me totally by surprise. As you can imagine, it was really satisfying for me, I was childishly thinking to myself "yes, you should be feeling guilty after what you put me through! I was right and you were wrong HA HA HA." But of course I said nothing.
I'm so glad you have found doctors who listen to you. It's unfortunate that this is a condition that is not widely known, but the people you are seeing seem to know what they are talking about and at least are willing to help. I hope the gabapentin cream works for you!
The closest I've been to a specialist is the gynaecology department of my local hospital, but I've only seen 2 people there - 1 who didn't know much about vulvodynia, though at least he was nice, and another woman who barely spoke to me through the whole time I was there, poked and prodded me roughly even though I told her she was hurting me and got really huffy at me if I dared to ask any questions about what she was doing. She told me I probably had herpes, even though I have already been checked for all sexual infections, several times, and the one sexual partner I've had since my V began also doesn't have herpes, and when I asked her how I could check this if the normal tests weren't good enough for her she told me I'd have to try and get an appointment mid-flare although this would 'probably be impossible' and then booted me out. Really helpful. This was on Monday so I'm still pretty upset about it.
So yeah anyway sorry, rant over! Could anyone tell me a bit more about these? If they know any in the Midland's that'd be great, if not I'm obviously prepared to travel or whatever, I'll do pretty much anything to have a conversation with someone who might know what they're talking about..
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Join date: 2011-12-14
Don't know about pain or vulval clinics but I was diagnosed at a GUM clinic (Genito-Urinary Medicine clinic) - unfortunately I think these are sometimes coloquially referred to as 'clap clinics' but i just swallowed my pride and went I was so desperate to get an answer! you should have one in your area, google it or ask at your local GP surgery they should have info. You can usually get in quickly (some even have walk in centres where you don't need an appointment which could be helpful if you want to be tested for stuff mid-flare) or you could even phone first and ask if they have someone who knows about vvd so you don't have a wasted journey.
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Join date: 2012-01-19
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