Hello there. Can you help me?

Hi all. I thought I should start by explaining my situation. I have not received a diagnosis yet, but I am certain that this is my problem. If it's okay to do this here, I'd like to list my experiences and perhaps you can tell me whether or not you agree that vulvodynia is the condition I have. There is a lot of information I'd like to share, so I'll summarise to keep it short --

* I have never ever been able to use tampons, even the smallest, without extreme pain. I've never even been able to partially insert one. Even though I can insert a finger easily, and even though the tampons I try are smaller than my finger, trying to inert them iis unbearably scratchy and painful, like trying to insert a ball of steel wool.

* The women in my family have all had trouble with their hymens being too thick, and mine was virtually impenetrable. For years doctors didn't believe me when I told them there was something wrong with my hymen, because it LOOKED normal. They just accused me of being young and inexperience.

* I finally found a doctor who listened to me, and last month I had my hymen surgically removed. However, I still have a lot of pain, and it is not caused my muscle tension, although the pain does make me tense eventually if I push myself to far, which I sppose is a natural reaction.

* I have been using dilators to try and get myself used to penentration, and although I've been using them for a long time, I can never get past the second one, which is really no bigger than a finger. I oce managed to insert the third dilator which is a little over the size of two fingers, but I had to grit my teeth it was so agonizing. It felt like the entrance was ripping, and on fire.

* Generally, at the most, I can insert two fingers, but I have to work up to it, and it burns constantly, and feels like I'm tearing. I have been trying this for so long, even when I'm aroused and well lubricated, but this is absolutely the most I can fit inside myself. I want to stress again that this is NOT because my muscles are tense, it's the burning, tearing feeling. It becomes excruciating and THAT'S why I can't insert anything bigger. It's not that there's not enough room in there, it's because there's too much pain.

* Once I found out about vulvodynia, and read a lot about it, I started thinking about other times I feel pain, and lots of things occured to me.

* Firstly, when I wear tight clothing and sit down, I feel a burning pain. It is not there all the time, and some days tight clothing is fine for me to wear, but other days I feel this burning even when I'm wearing loose clothing -- just sitting at a certain angle puts pressure on my vulva which causes it to burn and sting.

* When I have my period my vagina aches. The best way I can explain it is by comparing it to the pain you feel in your breasts when they are sensitive. You know that sort of gravitational ache you get when you take your bra off, or when you sit up after lying down? That's what it's like. And although it happens mostly when I have my period, it can happen other times too. Often when I'm standing up for too long I will feel this ache.

* I once tried the 'cotton test' by pressing a cotton bud/q-tip around the entrance of my vagina, or rather, in the folds where my hymen attatched to walls of my vagina, and it felt like my skin was being scratched off. After I stopped and removed the q-tip, it continued hurting for about ten minutes. I ilken this again to using steel wool.

* When I was child, there were several isolated incidents in which I felt a sharp stabbing pain in my vagina. Once when I was seven or so this pain hit me out of nowhere and I was screaming and crying because it was so intense. My mother had me take a bath and lie with my legs apart to let the area breathe and it eventually went away. This same thing happened several times throughout my childhood, and I don't know if it's related but I thought it was worth mentioning here.

* And finally, every time I take a bath, the water hurts my vagina a little. I don't mean that every second of being in a bath is painful, just that at some point I think the water enters my vagina, or there's some kind of pressure, and it begins to hurt. This is why it confuses me when people tell me that it's best to try insertion when you're in the bath because the warm water loosens your muscles. For me, a bath would be the worst place to try and insert anything.

I don't know if these pains that I have listed are things that all women experience, or if I have vulvodynia, so perhaps you could give me your opinion. I have an appointment with my gynecologist on the 25th of this month as a follow-up after my surgery, and I plan to tell her all of this so she can help me.

The thing is, whether I have vulvodynia or not, I know that actual PIV sex is out of the question for me, and this makes me feel awful, as I can't imagine that there are any men who will want to be with me knowing this. I'll be twenty-one this year, and have never been able to have sex, and I live in Britain where people as young as fourteen are having sex, so I constantly feel like a freak. I feel like if I tell anyone about this they will judge me, so I keep it to myself. And I feel like sex is so important to men, and that's not somoething I can give them, so no-one will ever love me. I am willing and able to take part in other sexual activities, but surely that's not enough?

Sorry for rambling on, I'm just so glad I have found this community, as I don't have anyone I can talk to about this in real life.
Thank you for having me, and reading this far.

R.

Hi there,
Some of my replies don't seem to appear so I'm just testing one here to make sure if I write back you'll get to read it

Looks like it's working! Well, to get to the point, it definitely sounds like you have vulvodynia (as well as maybe something else). A lot of the women here can probably relate to having a long and frustrating story of trying to understand and cope, like you have had.
I can identify completely with the burning/searing feeling of attempted penetration. For me tampons are fine but PIV is impossible. I have a kind of vulvodynia called provoked vestibulodynia (also called vulvar vestibulitis syndrome VVS), which is usually diagnosed with the qtip test. For me the qtip feels like being stabbed with a needle or stung by a wasp, but everyone's pain is different. Mine started after 8 years of being able to have sex, so I haven't always had it, which is diagnosed as secondary VVS. Sounds like you have primary VVS (born with it).
One thing I have to say is - do not keep trying dilators or finger insertion if it hurts! Besides being painful, this can actually cause your muscles to spasm at the THOUGHT of penetration and really complicate your future attempts to heal (it's a condition called vaginismus).
I'm actually wondering if you have vaginismus already- has a doctor every checked you for it? I'm just wondering because I know nothing about thickened hymens and the symptoms you describe sound to me like maybe muscle spasms, which could seem like the vaginal opening/walls are "thick". I could be off base here, but it's just a thought.
You definitely have lots of treatment options available to you. I'd absolutely recommend pelvic physiotherapy. You need to find a good gynecologist who knows about vulvodynia and can recommend you to a good physio. There are also different medical options for treating this condition, which is basically nerve pain in a lot of women, (and almost all women who are born with it) - including an antidepressant called amitriptyline and an anti-seizure med called gabapentin/pregabalin.
Some other posts on this forum point to some really helpful books. One that does a great job explaining all the causes of pelvic pain in women is called 'When Sex Hurts' by Dr. Goldstein and two others. It's published this year, so really up to date, and can help you figure out what you have and how to talk to a doctor about it.
And keep coming back here for lots of information and helpful advice!
Best!
Katie

Thank you so much for your response. Yes, I have heard of vaginismus, and actually believe that I suffer from it to some degree. Not so much that I suffer from severe spasms that prevent any penetration at all (I know how awful vaginismus can be for some women), it's more like just a little lack of control, and difficulty forcing myself to relax. I certainly don't ALWAYS have tight muscles. When I am aroused, and competely relaxed, I don't have trouble with my muscles at all, unless my vulvodynia makes me hurt or I push myself too far, then I become stressed and tense. I think it's that the vulvodynia, coupled with my painfully thick hymen, has led to so much pain in that area that I now just have some difficulty with the muscles down there, which his something I need to work on, but that's easier said than done. Before I had my hymen removed, doctors actually were convinced that vaginismus was my main issue, but although I knew I had trouble with my muscles, I was certain there was something else wrong with me (you know how you just KNOW your own body). Anway, that's why I have been using the dilators -- to try and get my body used to penetration. I am just confused as to whether or not it's the right way to go, as the vulvodynia is making the use of them more painful than it would be for just a regular vaginismus sufferer and I don't want to do myself more damage, but I don't want to stop using them because I am so determined to become used to penetration. I feel like to stop using the dilators would be to admit to myself that PIV sex is someting that is NEVER going to happen for me, and I would prefer to remain hopeful. I figure that when I get to see my gynecologist next Monday, the numbing gel she is bound to give me will perhaps make the dilators easier to use. It's just frustrating because both conditions complicate each other -- vulvodynia pain makes me tense, worsening my vaginismus, while my occaisonal inability to stop myself from tensing makes my vulvodynia pain more intense. It's a horrible cycle.

Anyway, thanks again for all your helpful information. I have read about amitriptyline and plan to ask if I can perhaps try it.

Hey there and welcome!

Have you had your pelvic floor assessed by a physio? Maybe find one who specialises in womens health, there are a lot of reasons why our pelvic floors end up in a mess, not the least V. but women have issues with ageing and post childbirth also. I found a really good article yesterday on how to improve the health of the pelvic floor, I will post that.

I'm fairly obsessed with holistic healing - mind/body and soul. What that means for me is diet modification - limit sugar because of the acidity along with other acid foods owww and coffee!, physio, stress reduction, gentle exercise, meditation, face time with favourite people, the number one thing that worked for me was therapy. It takes a lot of courage to tackle this and therapy helped me find the strength and worked on my demons at the same time. This is a lot to deal with, it's great to unload and find some focus. Ok meditation, that maybe hard to get your head around but it gives you endorphins and also clears some space! Do anything that makes you feel good be it massage, sitting in the sun, get a pedicure etc. I threw everything at it I could and I'm now 90% painfree. I've just started working again and I've had a bit more stress so a wee relapse!

Physio is essential to see what's going on down there. I have generalised unprovoked V. so pain all the time so I had trigger point physio which worked on unbunching the muscles. It's worked fairly well. I couldn't tolerate drugs, I tried ami and gaba but I wouldn't discount trying them everyone is different. Talk to gyny about PT, my specialist was all for it but I had to convince my GP to let me do it. It pays to start looking for answers yourself. I wouldn't rely too heavily on some clever clogs coming up with the answer. We're all in this together and we're all determined to beat it!!!

Good luck! And come on here to rant, we all do that regularly =)

http://www.a-womans-touch.com/documents/PelvicFloorBooklet.pdf
http://www.a-womans-touch.com/documents/VaginalRenewal10_withTM.pdf

Thank you, that all sounds really interesting. You know, I've always thought meditation was a good idea, and I've always wanted to try it, it's just that my mind is so active all the time I can't imagine being able to shut it up for very long. I guess now that I know it could actually help me I'll have to give it a go.

I've always wanted to try therapy as well, but unfortunately we have limited resources here. I'm in Britain, and the city I live in has only one hospital, with one sexual health clinic. Back before anyone believed my pain was real, I was put on the waiting list to speak to a psychosexual therapist, which took over a YEAR(!) and the therapist I was assigned turned out to be very offensive. She made a lot of innappropriate comments and was generally not understanding about my situation at all, instead choosing to actually criticise me, so I absolutely do not want to return to see her. I'll have to ask my gynecologist next week how I can go about switching to another therapist, and if that's even possible, but I suspect that I will have to go back on the ridiculously long waiting list if I want to see someone else.

Anyway, thank you again for your suggestions. It didn't occur to me until I did some reading recently that something as simple as your diet could affect your vaginal pain, so I'm going to have to do some experimenting. Honestly, right now I'm willing to try anything to make this go away.

Hey hon, that's the point I got to as well .....TRY ABSOLUTELY ANYTHING!!! It makes more sense to me to treat everything instead of blindly jamming another pill down my throat - with god knows what side effects.

Meditation takes a bit of getting used too. My therapist taught me mindfulness which is about focussing on the moment, I found it all a bit fruity to be honest. It took me a while to really get it and now I use it daily even sometimes just a deep breath can be helpful. Also breathing properly, there are some great posts about that, learning to breath from your stomach. Strengthening the pelvic floor and hmmm regular orgasms help with healing. If you can't comprehend that, its more about taking care of yourself and improving blood flow. Sebby can probably talk to you about tht but it's to do with clitoral stimulation not penetration.

Ummm therapy - do some research, don't wait for people to help you. Be your own detective........... got to go to bloody work now ahhhhhhhhhhhhhhhhhh

Ladies I spent a fortune on doctors in the UK no one knew what was wrong. I saw 10 consultants one a professor who did a biopsy but still did not know what was wrong. My life saver was GUMed could not believe that I would be going to this hospital department it was recommended by national vulva association they are your best people they understand these problems and can do the tests straight away so go along if you hit a brick wall like me.


love and light

Ria

Hi Ria,

I just had to look up what GUMed was It's a huge relief to find health professionals who understand.

I wonder if it's similar to a vulval clinic? That's where I found my fab specialist. It was great to finally find someone who didn't think I was raving mad. Knowing that this was a real thing and having a diagnosis helped immensely. Then reality kicked in that there was no magic pill

I did find the traditional route a bit well traditional. We are all different and it becomes a bit of a lottery as to what works. We all have a vested in finding answers.

I tend to think to heal your body you need to look after it. God that's hard work! I spent my whole life thinking I could do whatever I wanted, eat and drink whatever I wanted. I also feel more in control now I've taken responsibility for my outcome. My specialist is on maternity leave but I don't think she has any more answers for me. All of the clever women on here have a vested interest in figuring this thing out and we're going at it like beavers hahhaa I think we'll figure it out one day.

When I phoned the vulval clinic initially I was amazed how lovely they were. They deal with this stuff every day - GOD who knew??? I also have a sex therapist, she's got several clients with V. It makes sense to see people with specific knowledge. And it's great to clear all the demons out as well.

I'm so happy that you have found a place that helps, it seems like it was a long journey to get there. It's so unfair because V is not something you can talk about freely and it takes a lot of courage to say it out loud.

Take care xx.

I feel like I am at the end of my world.... Do any of you ladies feel depressed and have the why me? There are days I struggle to put one foot in front of the other. just when things seem to be going better something else comes up. That brings me to this question, do any of you have pelvic pain and feel sick to your stomach? This is where I hurt my whole vigina feels like it is on fire somedays other days just around the opening and then there are days that my anus itchess and burns, feels like hemrroids on one side, my back hurts and I feel bloated and to top it all off I am going through menopause..................................
Sorry to vent but I just had to get it out there.. This whole thing has just taken a toll on my life, I am tired and have no energy don't want to do anything except be alone and feel sorry for myself.
And yes I too have second guessed my doctor.. But she is the head of the Pelvic Pain Clinic at UNC Chapel Hill and has helped me soo much. Sometimes i think I have a yeast infection, herpes, hpv, you name it and it runs through my mind that is when i almost go off the deep end. I am very happy married but to set my mind at ease she has tested for everyting under the sun and all is negative. This is a mind of matter thing. And believe me you can drive yourself crazy.. and I almost have.........................
Thanks for letting me vent!!!!! It take a little pressure off of my dear husband.
Vivian

Hi Vivian,

Please trust you will get the symptoms under control. I have been in the darkest pit, couldnt walk, the constant burning and no one giving me the answers I needed. Read my posts you will see the numerous Doctors and consultants I have seen. It is different for everyone as to what works, I do Yoga/meditation/reiki/ Crystals/Hypnotherapy/Acupunture, what ever brings you back to fight and get well is ok. At the moment I am good I do the Biofeedback Dr Glazer and I am taking Gabapentin and seems to be ok.

All the lovely Ladies on here use whatever they can. Dr Glazer sent me an Email today saying most ladies do the Biofeedback and use medication, I sent him an Email letting him know the Biofeedback is good but I need back up with the Gabapentin so its a case of using whatever we can and what works for you,getting your mind strong as well. Four years ago crying in my bed Yes wanting to end it all, telling my husband I cannot live like this,we were beside ourselves we didnt even have a name for the condition.

Well Vivian you are the expert on your condition if you are not getting the answers and the right help from the Doctor, see another one , get a referral to the Vulva clinic, GUmed were very good to me I cannot thank them enough.

I am sure you have been reading the other Ladies posts they will help you, gather all the information so you get back on track

Hope this helps.

RIA