Vulva pain and relationships

I'm new to this forum and I read through a bit and saw some other posts about how Vulvodynia/other vulva pain affects relationships, but I figured I'd bring up the topic again to see if anyone else has had a similar experience.

I have had mild Vulvodynia for a long time - maybe since my early teens? However, it didn't get really bad until I started having sex using latex condoms, which I slowly developed a serious allergy to. After I realized I was allergic, I switched to non-latex and had a few months of wonderful (!) sex with the person that is my current partner. We parted ways because of graduation/relocation/jobs, etc but now two years later we have reconnected and are back together. However, in these past two years, the Vulvodynia has become a lot worse. I don't have trouble sitting (so sorry for people with that intensity!) but many days I do experience pain and itching and burning. It's like I'm often aware of my vagina in a way that I didn't used to be and most people probably aren't. Tight shorts and pants definitely don't work.

As far as sex goes, most days penetration is out of the question. Didn't used to be that way, but it's been getting worse and worse. Our relationship has been long distance until now - my partner just moved to be with me and we're heading off on a long roadtrip/adventure across the country where we'll both be starting new jobs in the fall. We visited a few times but were usually pretty busy and didn't have to think about sex all that much. When I was alone, I was alone, and it was nice not to have the stress of thinking about sex (I would go for long periods of time without thinking about my Vulvodynia much, since it didn't affect my day to day life to a serious degree other than a little discomfort). However, now it's REAL...we are living together and need/want to be physically close but it's really stressing me out! Penetration is almost always painful and is often accompanied by a burning that is so intense that it takes my breath away/makes me feel like vomiting. Sometimes it ignites all the nerves around my crotch area and I have to take a pain pill and lie with ice between my legs. It's stressing me out so much that I don't feel attraction or any sex drive! I just feel very...frozen...which is the opposite of how I used to be. I used to masturbate everyday and love sex and get turned on all the time. Now it's as if I could happily eliminate it from my life.

Needless to say, this has been difficult on our relationship. I am a naturally anxious person and I have struggled with some anxiety for most of my life, but this situation is pushing it into overdrive. I am mean and moody and depressed and anxious. I pick at my partner's appearance and mannerisms and activities. This isn't who I am! I keep feeling like I need to run from this relationship, when I absolutely didn't feel that way a few months ago. He is a wonderful person and so supportive of me through this and I love him deeply. It is a new relationship and living together is a first for both of us, so there is some adjusting that has to be done, but this feels so much more difficult than that. I remembered last night what it was like to feel sexually connected to someone in the way that people without this condition can be (and I used to be) - sex is a release and it's fun and comfortable and you go into it knowing that there is something good at the end.

Anyway - anyone else been in this situation and have some advice? How did you handle this desire to emotionally detach?

Thanks!

Rachel

I am in the exact same boat as you minus the current relationship. I used to love sex and would give anything to be able to have it again because it is such an amazing thing! I developed this problem in the middle of a long term relationship and it was absolutely miserable. I force myself into having sex or at least fooling around once a week as a chore and then have to ice and take advil every night for the whole week because I was so swollen and the stinging was out of control. When we broke up I assumed my body would go back to normal and figured it was him, but over the past 3 years I have gotten even worse. I recently met someone and finally had sex for the first time and felt like screaming during it. For the next month after I was so swollen again. It's miserable being 27 and feeling like I will never have a love life. I wish I had some advice though, I take a few different vitamins, drink lots of water, use estrogen cream at night but I can't say any of if helps much. I can't imagine having the stress of a relationship on top of this condition but it also bums me out to be single and alone... My current doctor said that the surgery does not work so he stopped performing it but I would like a second opinion because some people say the surgery works wonders. I am seeing him next week again because I started to have some blood on top of swelling so I will let you know if he has any miracle advice. I also read Why Sex Hurts which was helpful but again, I haven't gotten anywhere...

I was diagnosed over a year ago, been struggling for a year and a half, and just got married two months ago. Anyways, the trick with my marriage/relationship (as encouraged by my councillor) is that you just have to be creative with sex. In many ways you can still achieve the releases and experiences of sex without having to have penetration. My husband can't remember the last time he was able to have sex sex, but he makes it a point (and I try my best to cooperate) to ensure that we have sexual intimacy, whether that be through means of oral sex, bringing in toys, or other ways. Ultimately, being in a relationship is more than about having intercourse but about being able to respond and meet each others needs in a way that pleases one another. It takes a lot of patience, and a lot of communication.

Plus never stop pleasing yourself. I can't handle penetration, but doesn't mean you can't get releases other ways.

Finally, the right guy will make it work, he'll be patient, and accepting, and together you'll make sex what you want/need it to be. It's not black and white, and it's not what Cosmo says, it's what you say it is.

Ok guys. I promised God that if he helped me find a cure for this horrible, life ruining, afflicting, 24/7 misunderstood condition, I would share it with everyone, as I have done TIRELESS research, read every book, scoured the net, and consulted with many doctors. Im 32 years old.
Ive always had a problem with painful sex, and a constant burning vag, but recently I was diagnosed with something far more horrible. Interstitial Cystitus.
Painful Bladder syndrome. Many women with Vulvodynia, many times have interstitial cystitus aswell, and I do frequent UTI's and I control them with a daily probiotic, but this particular bladder infection would not go away. Guys, this condition has literally ruined lives. Women hav e to go on disability for it. Imagine a voracious, raging UTI that never goes away. ever. and there is no cure. Its one thing not to be able to have sex, or sit for too long, or wear anything tight. But to be aware of constant, swollen, urethral frequency and burning, having to go to the bathroom every five minutes, cant sleep thru the night, the pain is compared to Cancer. People have to go on methadone, and antidepressants over it. Anywho, After I wept and begged on my knees for God to cure me, and help me, and even called a prayer line (LOL!!) and cried on my moms shoulder, (she prayed with me for a cure also) I made an appointment with a Urologist in Cleveland, Ohio at the Cleveland clinic. The best in the country. I got diagnosed with Ureaplasma, and Im currently on a strong 30 day course of antibiotics, (augmentin, zithromax, doxicycline) then I will be on long term antibiotics for the duration, until I test negative, which could take over a year.
Many people dont know too much about Ureaplasma, so please, please google it, and try to find a doctor that will hear you ,and test you. There are links to this with V too.
The test is expensive, and many doctors havnt even heard of it, so you have to shop around. because Ureaplasma is linked to IC, (urethritis) it is also linked to infertilty, miscarriage, and premature birth. Maybe shop around for fertility doctors, say your trying to get pregnant, and your concerned about Ureaplasma. Its worth it guys, I feel 100% better now that I am taking the proper treatment. This little bacteria is prolly the the one responsible for a lifetime of pain, and ruined relationships.
The oils. I make suppositories with coconut oil, (frozen, in sport bottle ice cube trays) with various essential oils, and Ive been able to have a sex life and sometimes, pain free sex life, since I started this. The thing is. You have to rotate the oils, I learned this. For a couple of years I was just using tea tree (and douches are horrible by the way, please dont put them in douche, been there, done that) after awhile, it didnt work and I didnt know why. The Boric acid suppositories. Worked for awhile, then didnt work at all. Then Myrrh oil. Which is great by the way. Then lavender and rosemary oils. Also awesome. Then Tyme oil, and oregano oil. Awesomness. Also, grapefruit seed extract is great too. Now Im doing Geranium oil, and its the skin of my vag is very soft and supple, non itchy and completely burn free. It feels strong, and healed...Im totally down for sex atm ), but currently single again (..but yea. Start out with a few drops, first few days, then work your way up to where you feel comfortable. I use quite a bit, especially for raging pain or infection, but everyones different.
The relationship part of this::

Ive lost amazing men,and amazing opportunities at an awesome sex life, mind blowing sex, because of this condition. My daughters father left me, and another guy I really Loved left me aswell, and told his best friend that I was frigid.
Sex hurts. There have been rare times for me in life where it didnt hurt, and Ill remember those times for the rest of my life. I have suffered every horrible experince you can imagine, becuz of this. To having them cheat, to leaving me, to seeing people that I Love suffer, and be frustrated and feel guilty, becuz they want normal awesome sex, with someone healthy, and feel bad about it. Its awful. Not only does this problem, destroy your sexual desire,and affect your hormones, its makes your vagina very dry. Since I started the essential oils, I actually have pain free sex sometimes, and normal vaginal discharge. Also probiotics everyday are a must!!
New oils I am trying. Palmarosa, lemongrass, eucalyptus, and manuka oil. East cape manuka brand. ) Good luck and much Love. I still feel like the only women in the world with this issue, and I feel cursed sexually, and it helps my psyche so much, to know that I am not the only one.

Thanks for the advice about the oils! Seems like you've done a lot of research...good for you!

Besides the psychological effects, the dryness is the worst! That's an impressive list of oils - I'm going to start getting my hands on them as soon as I can. For now I have Seabuckthorn Berry Oil (I'd rather have the seed oil since the berry stuff is a crazy orange color and stains everything) which seemed to be helping for a while, but then decreased in effectiveness. So maybe you're right - I need to rotate. I also use Vitamin E suppositories, which have also helped.

We will get through this! We can't let it ruin our lives...

Hi there,
i just googled this very complicated looking issue.Is it a STD? I read in treatment that partners should be treated also with the various treatments? I'm really glad you have had a breakthrough with your pain,I hope I can do the same.
How are you feeling now?

Ok, I think Im in Remission, here's what happened::

The Z packs were making my symptoms, (vaginal, and bladder) Much, much better, but the antibiotics were not long enough or strong enough, and my doctors would not give any more, (I even went to the ER and LIED about a lung infection to get a Z pack, I was THAT desperate) I did about 3, then a script for Cipro, Augmentin, etc, symptoms still there, got on DOXI, started first 2 weeks, at 100mg twice a day morn and evening. Helped tremendously, didnt cure tho. Next two weeks, 200mg twice daily, 400mg a day, increased my dosage, symptoms feeling almonst gone, still cloudy urine, felt like crap, slept all the time, got a really bad sunburn, gained 20lbs, throwing up cuz it was killing my stomach ALL NORMAL side effects fro Doxi, did lots of research(but my bladder and vag felt great!!) and thats what counts right .

A month of Doxi and symptoms were still there, but not as bad, I was def a functional human being again, but it ruined my summer, and I had no life, cuz I couldnt be in the sun as (doxi makes you photosensitive) and I felt like crap all the time, and I couldnt fit my clothes as I gained so much weight. Miserable, but making progress towards a cure. Tested for Ureaplasma at the Cleveland Clinic again, NEGATIVE. Vag felt 100% the way it did when I was 16, and completely unbelievably, normal. No pain, No burning, No swelling, or itching, Normal. Im also not sexually active at this time, as Im trying to cure this thing.
My bladder still felt bad, and was creepily getting worse , slowly but surely, and I couldnt get antibiotics from anywhere. Plus Ive always had cloudy urine my whole life, but all this sudden I was getting urine so cloudy I couldnt see the bottom of the toilet and very bad smelling, like burnt crackers or something. Aparently the Ureaplasma was causing my lifelong battle with Vulvodynia, but not my interstitial cystitus, altho UReaplasma has been linked to urethritis.
Becuz I was dying, I got off the Doxi, and I realized I had about 3 bottles of 50mg Macrodantin sitting in my medicine cabinet. My Doc prescribes 50mg a day of this to PREVENT UTI"s after intercourse, to be taken once after intercourse only. 30 pills per bottle.

I looked up whether or not they use macrodantin to cure UTIS as a treatment for them, and they do. 100mg dosage every six hours, aprox 3-4 times a day. i had three bottles, enough for a couple weeks, figured what the hay, its a battle, and Ill try anything.

Im in remission now, unreal . Urine is pretty clear, no pain, fingers crossed, Thanking GOD, cuz it was HIM that lead down this path to healing. details I cant add here, but after many prayers, and a series of events that lead me down this path towards a healing was no accident.
However, I did get a yeast infection after the Macrodantin, and guess what, one two days of my oil suppositories I was clear. I can actually go a week without using one suppository and feel normal down there. Whereas for years now, I had to one atleast every other day. The ABX cured my Vulvodynia.
I wonder if ALL ALONG, I had some kind of drug resistant (every herbal remedy resistant UTI???)

Ive never had a UTI like this before tho, as the pain was 24/7 unrelenting, and NOTHING was working, and I tried everything, and the rediculous amounts of ABX Ive been on for the last 4 months!
as a side effect of being hit with this horrible disease I cured my Vulvodynia. I guess, its very hard to get a doctor to put you on long term antibiotic therapy, but I guess thats what it takes to cure some cases of Vulvodynia, (as I barely ever used antibiotics before). I hear so many horrible, horrible things about antibiotics being the CAUSE for Vulvodynia, and the fact its causing resistance, and it destroys gut bacteria and causes C-Diff...I dunno. They helped me tho.
and all this time, I had a very negative attitude towards antibiotics, and Ive been on Oregano oil, Grapfruit seed extract, Caprilic acid, every herbal anti fungal known to man!
Antibiotics helped me

I want to add that the Macro does have side effects altho I didnt get any,and it took 14 days for me, which is unusually long, as most practitioners will do a week to ten days.

Macro and Doxi has side effects and no question, it is very hard on your system, but for me it was worth it

That's great, lavrose.

I'm going to message you again when I have a little more energy (currently very wiped out), but I'm very interested in your story because I think it may be mine, except that I don't officially have IC. My bladder has been involved in a few isolated instances, but I took Cipro and it eventually helped. I feel SO GLAD I don't have a raging case of IC (knock on wood), and tons of bladder pain, but I pee frequently and easily get irritated urethra, when touched.

Anyway, I suspect that there are underlying infectious issues that doctors can't identify. I just started seeing a pelvic floor physical therapist who said we used to have a gyno here who would routinely treat "negative" urine culture patients who had pain with antibiotics, and it cleared them up. She said to my PTist, "I'm convinced that we simply don't have the technology to identify pathogens involved."

The problem is, I'm VERY worried about the symptoms and bad reactions to antibiotics. I am very medication sensitive, and worry about getting serious bowel problems. Once you get C. diff, it can cause chronic colitis and is very hard to get rid of. That's another whole new disorder I don't want!!

I wanted to ask you:

1. How is ureaplasma tested for? I want that test. Does it just involve a urine test?

2. If my symptoms are primarily vaginal and vulvar, can I get a vaginal test that is equivalent, like a culture or something? (I have a lot of on-off yellowish vaginal discharge, especially after I ovulate, which is mysterious because that seems like my body hormonally is making it more likely to happen?? Have you experienced any of this?)

3. Do you feel that the essential oil therapy you've used did not wipe out the bacteria, so it's not a cure, but it just controls it for a while? Did it help your bladder at all with the vaginal suppositories?

I think one of the main questions here is how to find the right antibiotic PLUS how do you kill off the infection permanently, not just suppress it for a while.

I am concerned that the bugs not killed develop a resistance and then will pop up again later.

But fingers crossed for you!!! Keep us updated!

As for the original poster, I can all-to-well relate -- except that I have never had sex without pain.

I know it's of no comfort to you that you once enjoyed sex and now can't. It must be awful to lose something that was once so good. On the other hand, I don't even know what it's like to enjoy sex, which is something everyone else talks about as if it was like eating a piece of heaven. Some women say, "It's not the be-all-end-all of life" to try to console me (easy for them to say, they have happy sex lives and don't have to think about a painful vagina all day or if they get in the mood for sex, they can just do it!)....and yet, I can't even imagine how I'd ever be unhappy again if I could have penetrative sex and ENJOY it and feel good, and have my body rocked with convulsions like women describe. So for me...it will always seem like the Holy Grail and the be-all-end-all until I've experienced what other women have.

I didn't mean to vent in your thread, but I just wanted to say that if you were once without pain, I think there is more hope that you can return to that, and the research I think bears that out.

But as for your question, I wish I could answer more. I feel the most devastating part of this illness is what it does for your sense of womanliness and intimacy with your closest relationship, your SO. I've had a few serious relationships, but never without the pall of this disease haunting me, making me feel like half a woman or less, and incapable of reaching the connection I imagine sex without pain brings.

I've even turned down better men for less good partners because I felt that the good ones deserved more than I could give, sexually.

So I'm just commiserating, but need the same input you do.