Vulvodynia is ruining my life-Has anyone else lost their Sexual Arrousal/ Libido?

Hey I'm 20 years old in a 2 and a half years relationship and unfortunately I am still a virgin due to suffering from Vulvodynia for over 2 years now (embarassing I know). My boyfriend couldn't be any more supportive and lovely however It is strongly affecting our relationship and driving me nuts! I was prescribed amytriptylene 10mg and although after taking this for a while it stopped the pain it also gave me bad side affects such as drousiness, loss of feeling and arrousal...pretty much made me feel like a robot. I was recently given Nortriptylene instead in order to make me less sleepy and not affect my arrousal however it does and doesn't prevent the pain. The pain started out to be my hugest problem preventing me from attempting to have sex with my boyfriend however, the affects of the condition have caused me to loose any sexual desire and arrousal which is currently upsetting and frustrating me. It is also strongly affecting my boyfriend as he feels he is failing his duty to please me sexually. As I am a virgin I have never experienced sex therefore feel I am being denied something that everyone else is and has experienced and will never experience pain free sex. Me and my boyfriend have now tried to have sexual intercourse but are unable to due to my loss of arrousal, libido and the extreme amount of pain. I can't describe how much this condition is phycologically and physicially affecting me, reducing me to tears constantly!! Is there anyone else that is also suffering from loss of sexual arrousal?? or anyone that has any advice, I would be extremely greatful if you do. Other than my boyfriend I have no one else to talk to this about as my friends are unaware of the issue therefore would welcome anyone experiencing the same or similar issues to talk to. PLEASE HELP DESPERATE TO BE CURED!!!!!

Hi there! Definitely try other things then pills. I hated those tablets. If you feel tight muscles are the problem, feels like a painful wall of muscle is blocking the entrance to the vagina. Go to a physio get your pelvic floor checked in addition to all of your hip stabiliser muscles in your stomach, butt, thighs and get all your lower limb joints checked. If you havent already go to the dr and make sure no infections are interfering. There is biofeedback to help you relax the pelvic floor. Google search health professionals with experience with pelvic pain eg gynos physio, chiros. If you happen to live in Sydney australia I can help you there

Hey yeah their awful! I've got anesthetic gel linocaine and I've started phycasexual therepy but I'm at Uni at the moment so can only attend when I am home. The therapist was really good and I'm being reffered to physio so I will ask about that. Thankyouu for your help!

Sounds like a really good plan, chiro is also another good option. Good luck !:-)

Hi m18,

I'm also 20 and have been in a long term relationship during all this crazy vulvodynia stuff. I too have issues with getting aroused. Before I knew about vulvodynia I could feel that way, but now after having it for so long its hard to feel excited about sex or anything sexual. I wasn't able to have sex until December of last year. I had gotten surgery July last year which has taken away the pain..but I still don't get aroused during sex. I can't even have the big O moment . I'm still feeling the psychological pain from that even though the physical pain is now gone. I'm hoping things will change once we get more experienced with sex, but I don't even want to have sex at all because I feel like it's never going to be enjoyable. I got what I wanted out of the surgery, but I almost feel like it was wasteful because I'm not enjoying my sex life...yet. I'm hoping things will change. It's still hard to imagine sex as a happy and pleasurable thing to do. Whenever we used to try it was horrible. It hurt so bad...and I'd cry after every time. It was a very depressing time in my life.

Anyway at this point all I can do is hope for the best in the future. I hope the same for you. Please keep us updated on your progress and let me know if you have questions or just need advice!

-Jen

Hey Jen

Thanks for replying to my post! I feel exactly the same I've never even properly experienced an orgasm and I used to get arroused untill I noticed the pain. I'm glad the surgery has stopped the pain but the fact your still struggling with arrousal is awful
the pain is still a problem for me as I've stopped taking tablets for it however the arrousal is becoming a bigger issue so I wish I could atleast have that if the pain can't be cured. Did you have your surgery in the UK cause I was told it was only available in the states? Have you started having sexual therapy and physio I've been reffered to have that cause apparently it can help so fingers crossed. Bless you I feel for you, We've tried as well and its too painful for me and I cry almost every day about it its driving me to depression! Do you know if theres anything that you can take to help you get arroused? I'm desperate to have that feeling again the fact its not just affecting me its also stressing out my boyfriend is making me feel awful

Thankyou for sharing your story and thankyou I hope the best for you too! & I will deffo keep you updated on my progress.

m18,

I'm from the states actually, I had my surgery done in New York. I'm not sure about getting surgery in the UK. From what other women have written here who are from the Uk, it doesn't seem like they get the best treatments . I wish you ladies could all come here and get better doctors! I haven't had any types of physical therapy yet, but I need it desperately. I have very tight muscles down there which can cause me pain while I dilate or have sex...but nothing like I used to experience. I would go to pt, but I'm in college and have a jam packed schedule. I'm thinking sometime during my summer break I'll start pt.

Don't be sad! It will get better! I know this is kind of personal, but have you tried other things with your boyfriend...like other than sex? I was able to have the big O doing those things...if you know what I mean. I don't think there is anything you can take to get aroused....but if there were I don't think it would be too good for you. It would probably be packed with hormones or something.

Btw I forgot to mention before that I had also been prescribed amitriptyline a few years ago. I did help me with the pain. If I could go back, I probably would've tried to do some pt to see if I could've been somewhat cured that way so I didn't have to get surgery..not thatI regret it or anything...it just would've been easier. Anyway I had to stop taking after about 6 months. I got up to a pretty high dosage that kept the pain mostly away, which was good, but then I started to lose A LOT of weight very fast. I was always between 110 and 115 lbs and after the amitriptyline I went down to 105 lbs and I still struggle to gain the weight back. I feel like I look like a dead person because of my weight. This doesn't ever happen though. I think I'm the only person who ever lost weight from amitriptyline. Most people gain weight, but when I was on it, it totally curved me hunger and I was never hungry. It was sooo bizarre.

-Jen

Jen,

Aww yeah their useless tbh I don't think they realise how much it affects us or take it serous enough. Deffinately sounds like you get much better treatment in the USA so wish I could! Yeah my muscles tighten down there too I havn't started mine yet either I'm in the process of being reffered and I've only had one phycasexual therapy session once, I'm at university atm so I need to wait till I've finnished to continue with it. & yeah we do, thats what we try to do the majority of the time but I can't even get arroused with that which is why we can't have sex and yeah good point plus most things are unreliable these days if their sold on the internet. I was prescribed Amytriptylene too which did help the pain but the side effects were awful, I'd end up sleeping all day and still be constantly tired! Its also known to affect your libido and arrousal so thats another reason why I stopped, my doctor then prescribed me nortritylene and said it wouldnt make me drousy but it still did & unlike Ami it didnt get rid of the pain so she suggested there was no point being on either anymore. So now I just suffer with constant pain. That sounds horrible about the weight loss I didnt realise it could do that, I never experienced that side effect but I did research that it can make you put on weight so thats strange! Thankyou I hope it does get better I feel like I've tried everything but nothings worked! I feel so alone cause no one I know understands what I'm going through so feels like a releif to talk to someone that does!

Yes, it does completely, physically, hormonally make you lose your libido. Whenever it was bad, or I felt I had some kind of infection, id lose my sex drive completely, and whenever it was feeling good, or I did a round of antibiotics, or quit havin sex for awhile, and cured whatever infection I had at the time, or whatever, my libido would come back with a vengeance, lol .

I was reading that these problems can actually mess up your hormones and estrogen levels too, after awhile.

I noticed that, Id even quit ovulating (while I was TTC and tracking ovulation), while I had an infection, or was feeling, raw, irritated,and uncomfortable, its almost like the bodies way, of trying to get you to not have sex while you have an infection.

Also, there's alot of vaginal dryness too, that goes along with this condition, and even when I would get aroused or have an orgasm, Id still be dry as bone

Heyy

Thanks for your reply. Yeah my arrousal/libido has completely gone now & if I do every start to get that feeling I get all tense and it goes & I also get vaginal dryness what type of antibiotics did you have? was this to help cure it?

Antibiotics for vulvodynia? Or did I misread something

When I dont have a full blown yeast infection or some sort of Bacterial infection, then I have Vulvodynia. My entire life, my vagina is sore or irritated. Until I started supplements, and looking into cures, it was like that all the time, since I lost my virginity, I couldnt stand to have sex.
It does get better, if not completely goes away with antibiotics(oral), but it will always come back. And I did have problems with group B strep and Ureaplasma.

The antibiotics they use to cure Chlamydia and Gonorrea (spellcheck), are usually the most effective, such as Z pack, Doxicyline, etc.

Lately, probiotics (vaginally and orally) have really helped me. I feel 100% fine right now.
Like I said, I think this is a vaginal immunity issue,and I think we are all living with a low grade yeast infection.
There is a doctor in New york who specializes and has cured women of both interstitial cystitus and Vulvodynia, by using intravenous antibiotcs and antibiotic flushes of the vagina, aswell as injecting flagyl gel in the bladder, and he treats men as well, he basically flushes everything out with powerful antibiotics. He is a fertility specialist, but believes that there is low grade chlamydia that many people are infected with, that is undetectable, and causes these problems, aswell as makes many couples infertlile. I will post his information and an artical here.

hes expensive, so ofcourse im not gonna go see him. But I would in a heartbeat, if I had the money..

"Patients travel from as far away as Europe to visit Attila Toth, MD, a physician in New York who claims his extreme treatment will help infertile women conceive. Couples are going home with babies, but doctors think his methods are far from sound For 10 days straight in the summer of 2010, Samantha*, a lawyer from Greenwich, Connecticut, and her husband came into New York City to visit the office of Attila Toth, MD, a fertility specialist who thought he could solve the mystery of why, at age 28, she couldn't get pregnant.

On the first morning, Toth put in their arms IVs that delivered an antibiotic that they each carried around in a fanny pack for the entire 10 days. He then threaded a catheter into the pinpoint opening of Samantha's cervix so that, for the next hour, a cocktail of four antibiotics, the steroid Medrol, and a large dose of the yeast-infection medication Diflucan could wash out her uterus. The first two mornings, Samantha suffered excruciating cramps from these daily washes, but by the third, the pain had subsided, and she settled into a routine of watching Dr. Phil on the examining-room television until Toth returned to remove the catheter and insert a paste containing a fifth antibiotic that would be absorbed into her body for the next 24 hours. Meanwhile, every other day Toth gave her husband a painkiller and then injected antibiotics through his rectum and into his prostate; twice Toth also injected his seminal vesicles. After their last visits, Toth gave the couple prescriptions for still two more antibiotics that they'd take for a month.

When their treatments were over, Samantha and her husband returned to see Toth, who declared them both "clean," by which he meant they were free of Chlamydia trachomatis, a bacterium that can cause infertility in women and has been linked to recurrent miscarriage, premature labor, ectopic pregnancy, and pelvic inflammatory disease.

Outside of Toth's office, such an elaborate antibiotic assault on chlamydia is practically unheard of. The standard treatment—which health officials say is at least 97 percent effective—is a seven-day course of the antibiotic doxycycline or a single dose of azithromycin. But Toth thinks chlamydia is far harder to detect and treat than most doctors do. In fact, he thinks it may be responsible for a substantial portion of the one third of infertility cases that doctors now classify as "unexplained."

Toth, 72, came up with the idea of administering intrauterine washes (also known as lavages) to patients in the late 1970s after learning about the horse breeder who successfully put the racing legend Secretariat to stud. The breeder would flush out the uteruses of mares with antibiotics to kill the microbacteria that could interfere with conception. Why couldn't humans benefit from such a therapy too? Toth thought. In 1977, he started testing infertile couples for a little-studied bacterium called mycoplasma that had been linked to infertility. He gave men who tested positive an oral antibiotic, and many of their wives soon became pregnant, Toth says.

Around this time, public health officials were becoming increasingly concerned about chlamydia, and his boss at New York Hospital suggested he look into it. "He said, `That's far more important and can do much more damage to the reproductive tract' " than mycoplasma, Toth recalls. Pictures of this were telling: scarred and blocked fallopian tubes, uterine adhesions, blocked epididymides (the coiled ducts that collect sperm). "I thought, This is destroying people's anatomy," he says.

At first, Toth treated people who tested positive for chlamydia with a conventional dose of oral antibiotics. But when cultures from his patients continued to show traces of the bacteria, he lengthened the time to four weeks. He added another anti­biotic. Then he doubled the duration of both medications to eight weeks. "The longer they took them, the faster they got pregnant," he says. In the early '80s, he introduced IVs for men and women; patients would cluster in his office basement while they were hooked up to the then primitive machines and call themselves the "IV League." By the late '80s he had refined his regimen further, introducing the uterine lavages; five years ago he added prostate injections.

Toth, a man whose bear-hug personality endears him to his patients, now sees some 150 couples a year for infertility, a third of whom, he estimates, are referred by gynecologists, urologists, or fertility specialists who are at a loss as to how to help them. Gideon G. Panter, MD, a Manhattan-based gynecologist and infertility specialist, has sent Toth 40 to 50 patients, he says, and "always with the same story," of unsuccessful IVF cycles, including one couple who traveled from Europe after four had failed. "Toth has been saying this stuff for 20 years," Panter says. "But fertility medicine is big business. Doctors don't stop to think, Wait! My patient's IVF cycle failed twice. Something else must be going on. Toth's treatments cut into the economic overhead of infertility treatment. He's ahead of his time."

After finishing medical school in Hungary in the late '60s, Toth emigrated to the U.S., where he received a fellowship at the Cleveland Clinic and finished a residency in pathology at The Mount Sinai Hospital before opening up a private practice at New York Hospital in 1977. Fifteen years later, he moved his practice to the Upper East Side townhouse where he remains today. A tall man with a mustache, a full head of sandy brown hair, and a thick accent, he avoids conferences and has published infrequently. He says he encountered such cynical resistance from the medical community early in his career that he retreated to his office and relied on his evangelistic patients' word of mouth to grow his practice. "I just became frustrated by the lack of interest in the role of infections on fertility, no matter what ideas I put forward," he explains. "So I treat my patients according to my best understanding, and my reward is seeing them get pregnant."

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212) 717-4444

We all either have low grade yeast, or some sort of Chlamydial infection that is not acknowledged by the medical community.

Also, Ureaplasma is also a factor, and Im prolly getting back from my husband over and over again, but I cant get a doctor to locally test me (had to go to Cleveland), or even listen to me about it, and I cant my husband to go in and get treated!!!

I mean I had the surgery and I'm pain free now. I would never consider taking that many antibiotics that's insane, sometimes there's just no cure, and you just gotta get comfortable, but wow that many anitbiotics is going to create so many other problems. I stopped taking the anti's and felt better just by doing that, I had massive yeast infections from having that much stuff disrupt my system, but after the surgery, I was 100%. Granted I don't know if that would work for you, but I feel like taking constant stuff is going to upset your system even worse and then you have no idea what you're treating. I def don't have chlamydia and I'm yeast free, but vulvodynia isn't going to just go away that little bastard is there, I had it cut out and I'm not even considered cured. I had ureaplasma and was treated, but all of this stuff normal people get too and they're junk isn't on fire. I guess everyone wants a quick cure, but sometimes the cure is inpractical; if you dump that much antibiotic in you, your system is going to build up a resistance and will be unable to fight off something like strep throat or pneumonia in the future. Just be careful is all I'm saying.

I agree with Alana. I also had surgery and am now pretty much 100% pain free. I used to have chronic yeast infections, but not anymore. I didn't ever have any visible redness down there. All the doctors I saw said I had a perfectly healthy looking vagina. And theres no way I had chlamydia or even have it. I never had a sexual partner until recently and I've had the V for over 5 years now. Also in my own personal opinion, the doctor you're referring to doesn't sound too great to me. Injecting all that stuff into your lady bits sounds awful and could make things go very wrong very fast. I'd never in my life risk messing up my bladder and my vagina all together. Yes having the surgery was a risk, but its something that has been done enough for women to have a general idea of whats going to happen after. I came out amazing after surgery and I recommend it to all with PVD. To me information like this is good to know so we don't all take crazy chances on our already sensitive vaginas. If anyone wants to try something like that it's not my place to tell you otherwise, but be aware of the treatments you consider trying. Do your research on any treatment and consult a doctor before doing anything risky...like this.

-Jen

Absolutely, I see what your saying. I would always usually get yeast infections after every antibiotic treatment. and reading online, people that have never had a vaginal infection before would come down with yeast after a round of antibiotics. So, def, its very hard on the body. it was like a ping pong effect. Going from a bacterial infection, to yeast, the nitemare was never ending. Antibiotic resistance is a very real problem now. Thats why doctors dont hand them out like they used too, it was very hard to get my IC treated::Heres an article on antibiotic resistant UTIS as follows:::

{{{{{{"" Superbugs in chickens could be an underlying cause of antibiotic-resistant bladder infections in 8 million women, according to a new ABC News report.

In the ABC News investigation, McGill University researchers said their research suggests drug-resistant E. coli in chickens may be transferred to humans and manifest as the hard-to-treat bladder infections.

Antibiotics are usually given to chickens to promote growth and prevent disease before they're slaughtered and sold in stores, ABC News reported.

Blisstree.com explained how these antibiotics could contribute to drug-resistance:

Chickens are injected with antibiotics from day one to help them grow bigger and faster and protect them from diseases. The problem is that these are the same antibiotics sold in the U.S. for humans to treat bladder infections, among other conditions, which means our bodies eventually become resistant to the drugs because we're getting so much of it.

"What this new research shows is, we may in fact know where it's [the antibiotic-resistant bladder infections are] coming from. It may be coming from antibiotics used in agriculture," Maryn McKenna, a reporter for Food & Environment Reporting Network, which conducted the investigation with the network, told ABC News.

However, the National Chicken Council said that there is no proof that the drug-resistant bacteria that cause bladder infections actually came from the chickens. The council said in a statement:

"The studies in question make the assumption that humans carrying these E. coli acquired them from poultry. The strains did not originate in poultry and likely entered these farms from sources originating in human communities. Perhaps most importantly, the potential transmission of antibiotic resistant E. coli to humans says nothing about why these E. coli are antibiotic resistant in the first place. The resistances observed in these E. coli are common globally and are unlikely to be attributed to chickens given the few antibiotics available for use in poultry in the U.S."

McGill University researchers had previously reported in the journal Emerging Infectious Diseases that the E. coli in the chicken was much more genetically related to those of human urinary tract infections, compared with the E. coli in the beef and pork. That study included E. coli testing of 320 samples of beef, pork and chicken.

"We suspect that the transmission is occurring the same way other foodborne agents are transferred," study researcher Amee Manges, Ph.D., of McGill University, earlier told MedPage Today. That means transmission of the bacteria may occur when you don't handle food safely or properly, you have kitchen contamination or you undercook the chicken.

Urinary tract infections occur when bacteria, fungi or viruses infect the urinary tract, with bacteria being the most frequent cause of infection, according to the National Institutes of Health. The body is usually able to remove bacteria from the urinary tract, but sometimes they are able to live there and grow, causing an infection.

Bacteria found in the bowel are the usual culprits for UTIs, with E. coli causing most cases, the National Institutes of Health reported.

For more on the new McGill University research, watch the ABC News video above.}}}}

Right now Im having really great luck with probiotics. Right now, Im taking::

Femdophilus (Jarrow brand)

and PB8. Both capsule form. I insert Both into my vagina once, or twice a day, sometimes I will douche with betadine in the morning and after sex, Im planning on looking into douching with Chlorophyll after sex as that may be gentler on the tissues. Def doing the vaginal probiotic for the rest of my life, I insert either a PB8 or a femdophilus after the shower in the morning. I also take a femdophilus capsule in the morning orally,and that prevents UTIs for me, it has for about 4 years now.

When I got interstital cystitus last year (nitemare bladder infection from Hell) I had missed my femdophilus dose for about 3 days and was having sex. I will never do that again, ever. I take a capsule morning AND evening, if Im sexually active.

There is another probiotic Im going to be looking into, that cured one womens vulvodynia completely, taking one capsule orally called:: Bioceteuticals SB Floractiv::

Website info as follows::BioCeuticals SB Floractiv

Saccharomyces boulardii (SB), a subspecies of S. cerevisiae, is a non-pathogenic biotherapeutic probiotic agent that supports the establishment of friendly bacteria in the gastrointestinal tract (GIT). In the GIT, SB increases the production of secretory IgA (slgA) and short-chain fatty acids, and the activity of the brush border disaccharide digestive enzymes. It also discourages the growth of harmful micro-organisms and reduces digestive inflammatory mediators.1-3

SB can be taken in conjunction with other probiotics and is eliminated from the body when supplementation ends.

BioCeuticals SB Floractiv may assist in the temporary relief of medically diagnosed irritable bowel syndrome (IBS) including symptoms of bloating, flatulence, and digestive discomfort.
SB is not affected by antibiotics and can be used to minimise antibiotic-associated diarrhoea and candidiasis.
Does not require refrigeration; can be used for the relief of symptoms of travellers diarrhoea.

BioCeuticals SB Floractiv Ingredients

Each Capsule Contains:
Saccharomyces cerevisiae (boulardii)
(Contains lactose 28.75mg) 250mg

I guess this one is different from the run of the mill probiotics, it actually has a yeast in it that kills yeast.
Also, one gal on a website was talkin about a brand of probiotics that has L crispatus.

Hers a copy paste of what she said:::

Clinical Trials for a REAL cure for BV and where/why to BUY L. CRISPATUS

LISTEN UP EVERYONE! I've been doing some research, and I honestly don't think that Acidophilus is what we should be taking. According to the research, a lacto bacteria called L.crispatus is what we should be trying to replenish ourselves with instead. This is because a healthy woman's vagina is crawling with L. crispatus, which is one of the many good bacterias found in the vagina. It produces h2o2 and L. acidophilus does not. There is a company that is working hard to get pure L. crispatus suppositories on the market. But,in the meantime, I only found one probiotic supplement that contains L. crispatus. bacterialvaginosisdiary If anyone tries this out, please let us all know how it goes. I'm waiting on mine to arrive in the mail any day now.

Next month Im going to be trying "Flora Fem" Suppositories, they are Expensive. But they sound great, and Im having terrific Luck with what Im doing now, so I think Probiotics is the answer.

I think a round of really strong antibiotics (and Ive actually gone to the emergency room and got treated for Chlamydia and Gonerea, even when I didnt have it, just went in there complaining of a vaginal infection,and they treated me for that anyway, and that would sometimes knock out my vaginal problems for a few months, until it came back again ) Good ole' Vulvodynia, my bestest friend
After antibitics, vaginal insertion of probiotics, and mega doses orally.

Ive done alot of research on effective probiotics for women as follows::

Primal Defense
Three Lac
Floraster
Femdophilus, and
Ultimate Flora vaginal womens support (pink Bottle)
Syntol (Arthur Andrew medical)
Benebiotics

I just refused to except that Vulvodynia is incurable.

It almost ruined my new marriage too. Ive been suicidal too. But I feel great now, and all these things are only possible because of everything Ive been thru, and what Im doing now.
I Love you guys, God Bless

A

Have you ever considered getting a vestibulectomy?

-Jen

love mine!