27 Years of Secret Pain -- My Journey and What I Have Learned

Hello, All.

I've recently signed up here, but only now have been able to gather a bit of strength to introduce myself (I wasn't sure which topic to post under -- this or My Story.) I feel I've been delivered a life raft, to have access to other women and a community like this, where for the first time in my life, I don't feel utterly and desolately alone, isolated, and obscured in my pain.

I have had years of therapy (cognitive, etc., and I don't feel ANY therapist has "gotten" this, and there are no sexual health specialists where I live, which I NEED.) I feel though that the stories and successes of other women in their healing, may be the best medicine, and one of the biggest things missing.

I just wonder if there is anyone on this forum who has had it anywhere as long as I have? I'm guessing I've got to be the longest-standing sufferer here..?

Thank you for listening to all this, ahead of time. I know this can be very taxing.

This is naturally going to be a long post for the duration of my illness, and I apologize for the length. I hope this isn't too scary or depressing for newly diagnosed gals here, but this may give you a broad insight into many avenues of thought, as this has progressed/evolved for me over the decades. I hope someone will get something out of this epic saga, even if only some education and tips....and I do hope someone sticks around long enough to reply. It discourages me to see so many threads here not responded to. I'm not on facebook, and wonder if there is more active interchange there...but for now...

I'm envious of (but glad for!) you younger ladies who are at an age where the Internet is a resource you can turn to early on in this terrifying ordeal. For most of the years of my life, there was no internet; no other women my doctors had heard of with this, and NO research. The medical field is still very much in the Dark Ages (something I'm going to touch on in this post in a bit) with this condition, and of course, that's quite evident by how many women are STILL told they're fine, or that it's psychological. That's changing, but since I've had this condition for so long (and it's gone untreated due to lack of knowledge and interest in the science), it's probably made healing from it even more remote. I believe catching this diagnosis early has a lot to do with prognosis, so you can keep from spiraling downward, as I have.

It's hard to know where to start with my story, because it's so vast, as you can see -- nearly 3 decades. The emotional impact of feeling that I was the only woman who could not function has driven me to choose men I wasn't in love with, men who mistreated me, men who had all kinds of issues, just if they were willing to look past this problem, which I felt made me damaged goods. It's cost me all the sexually "liberating" years of my peers in college, who were enjoying hedonistic lives with men and romance, leading me to continual depression, despair, and feelings of worthlessness. I've been suicidally depressed on many occasions. Feeling so desperately alone and not worth the intimacy and love I wanted in my life has been AS bad as the physical pain, if not worse. I've shied away from men who may have been good for me, and marriage/a family/children have eluded me. This part of my body has such deep scars for my, psychically.

The origins of my pain started when I was still virginal -- about 16, 17, when I look back and remember pants bothering me, pads, etc. It was only when I became sexually active at 18, and the excruciating pain of penetration didn't get better over time that I knew I had a real problem. A doc (GP) biopsied me at about 18/19 years old, and the report was free of HPV or other diseases, but showed "chronic inflammatory cells infiltrating" the tissue. Which I learned is a very classic finding for women with vulvar vestibulitis (VV). My pain was for the most part provoked, just around the opening (vestibule) in these early days. All STDs were ruled out.

Then I went to college, majored in art, was exposed to many toxic chemicals, and experienced a violent reaction to them, with my immune system weakening and having other neurological symptoms. I got horrible yeast infections that simply recurred once treated with anti-fungal creams. Finally, I got allergic to the creams -- horrible, red inflammation. And that ended my use of such medications. So I started using more natural and outside-the-box treatments (this was before oral anti-fungals were commonly available for vaginal yeast), some of which helped and some of which either made no difference or made things worse.

When I graduated, I was fully incapacitated by my total health issues -- I had fibromyalgia (which had also started in my late teens) and Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). Taken together, none of these disorders were validated at the time, and I just drifted from one doctor to the next, unable to work, start my career or go to grad school. My life froze, on hold, with a prayer that I would overcome all of this if I just found the right treatment or my body saw its way to healing. Well...it hasn't quite turned out that way. I've had ups and downs, better times and worse. But to this day I am still on disability, unable to work due to all these conditions. I've done some projects, and worked at my own capacity, but it's fair to say sickness has been where an entire life of productivity, accomplishment, and self-identity would have been.

They say vulvodynia, VV (which is now renamed "vestibulodynia"), fibromyalgia, and CFS are not "life threatening." But the way they impact the quality of life and what they do to gouge your pocketbook in search of relief, and your soul is pretty incalculable. Most of my life has been devoted to trying to heal all of these together. I think one of the worst things is that I haven't found that partner who will stick by me through thick and thin (at least, not a man who is stable, kind, and high caliber himself). Some women seem to have the blessing of that...and I would have given anything for that kind of support, because love heals.

But if god could take away one and only one of these "syndromes" -- guess which it'd be? The vulvodynia/vestibulodynia.

Which I didn't get a formal diagnosis of until many years into it.

There are a few other things that I believe set me up to getting this, and for the sake of brevity, I'll just bullet point these, even though each is a whole story unto itself:

-- When I was an infant, my father (who was extremely neurotic, among other terrible things) took it into his head that the sand from the beach we lived on was causing me vulvar irritation because I would cry (as any child would with a few grains of sand in their labia), and began nightly treatments of lanolin and/or Borofax ointment (a combination of boric acid + lanolin, and petroleum jelly). This continued until I was about 8 years old, believe it or not. It became a ritual, and even though I was only a child, I felt something was "wrong" with this, and each night felt like something was wrong with me and it was more irritated, so I started asking for my parents to apply the ointments (my mom did this, too.) It was probably sensitizing my skin and laying the foundation for an allergy of the vulva, creating a barrier for the skin to breathe day in and day out. Doing research as an adult, I discovered that lanolin is considered by the American Academy of Dermatology to be medium to highly allergenic, and Borofax was taken off the market (as a diaper rash ointment) because babies were having toxic reaction of their skin. And this wasn't even delicate genital skin, but regular skin of the derriere. Doctors say we will never know how much this contributed to my getting vulvar pain, but boric acid is a known poison (confirmed by one of the experts I saw, who is a dermatological vulvar specialist). How can you put poison on a child's skin for years, day in and day out, and not expect illness to result? So I don't know how to deal with that, and no therapist to date has helped me handle that psychologically, nor has anything else I've done mentally on my own to move past it given me any closure or peace about this. To make matters worse, I truly feel ALONE in this, as I think it's a pretty bizarre, crazy, idiosyncratic thing that has not been experienced by anyone else, so no one can relate. I don't know of any woman with this condition who has experienced something in their history like this -- early childhood expose to irritants or toxicants, but I would love to hear from any who have, as a possible cause of sensitizing the nerves.

-- I took regular antibiotics for acne when I was in my teens, because the dermatologist told me it was okay and safe to be downing erythromycin as through it were a vitamin. My acne wasn't even that bad! But after a while, I developed an itch and soreness in my vulva, that sent me to my first gynecological visit. I was given a combination cream of an anti-fungal/cortisone. It didn't help at all. I'm pretty sure all my healthy gut bacteria were out of balance at that point, contributing to what would later "bloom" as all those yeast infections.

-- I developed anorexia (the eating disorder, but without bulimia) and lost tons of weight between 16 and 19/20 years old. My periods stopped. My weight plummeted dangerously. So my hormonal levels, and probably my pituitary went through some profound dysregulation. I was without any estrogen for years, so it probably went to making my vulva something like a menopausal woman during those years. Since then, I've recovered from that condition, and doctors have said that now that I have hormones at normal levels, I should be okay. But I believe that this was another match in the growing fire.

To summarize the rest of my history:

MY VAG DIAGNOSES AND WHAT SPECIALISTS SAID/DID:

-- VULVAR VESTIBULITIS (aka, now vestibulodynia): This is all I had at first, which is more confined to the vulvar vestibule; this ALWAYS made sex painful from the first time on; always some degree of rawness and burning, but with periods of relief where sex wasn't impossible, just minimally bearable; thank god, my clitoris was still working fine, and other parts of my labia were not hurting, just the opening; I felt terrible for women who had hypersensitive clitorises and pain everywhere (vulvodynia)

-- "HYPO-OXALURIA" -- meaning, more than normal spikes of calcium oxalate in the urine excreted. The pioneer (and first researcher to take this condition seriously, in my world) of The Oxalate Diet and Theory, Clive Solomons Ph.D., (through the Vulvar Pain Foundation, aka VPF) became part of my protocol for a while. I went on a low oxalate diet and took the recommended calcium citrate. But after a brief improvement, I plateaued, then noticed that flares had more to do with stress and other factors than religious adherence to the diet. Also, the diet is not nutritionally healthy in my opinion. So I abandoned that piece, even though I still think it may have some small role to play, and I would still suggest (though the further research has debunked the theory overall) that women try low oxalate principles to see if it helps, and take calcium citrate, as it binds to oxalate, which is a crystal that cuts the tissue microscopically like glass.

-- DESQUAMATIVE INFLAMMATORY VAGINITIS (DIV) -- in my 30's, I saw the first specialist, thousands of miles away. She told me I had this condition, which is characterized by lots of discharge of a potently inflammatory nature -- which I had been getting more and more, usually in the second half of my cycle. The chronic yeast problem had not recurred since college (only rare times), but I was getting this yellowish, painful discharge that was negative on cultures for bacteria. DIV is basically your vagina being constantly irritated and causing tons of inflammatory cells (white blood cells/WBCs) to be produced, along with a sloughing of immature skin cells that are characteristic. This irritates the vulva externally even more. I was devastated that now, I had something wrong with MY VAGINA, not just my vulva. Another layer. The treatment of this condition is cortisone + clindamycin (an antibiotic), though they don't even know why it helps because they don't believe DIV is an infection. I knew my vulva was so sensitive to creams and commercial bases, I would burn from it; and I don't believe whatever started the condition wouldn't recur given the fact it comes and goes with my cycle, so I just stopped seeing her and didn't do the therapy. In my research, I've seen that even when this treatment helps, the condition often recurs (surprise!). Also, upon repeated exams of slides at home with my own beloved gyn, she said she didn't see those sloughed cells, so she didn't believe I had real DIV.

-- THINNED VESTIBULAR SKIN: I tried another specialist and was told I need to use estrogen. I tried that and it burned, and the antihistimine he gave me made me a zombie. So I stopped. Other experts after him did not agree that my vulva looked thin or needed estrogen.

-- TRAUMATIC INCIDENT LEADING TO VULVODYNIA: 2.5+ years ago (I'll never forget it, as it was a vulva/life changing event -- Dec. 31, 2009), I went back to the above specialist, and I was at an all-time improvement. For some reason, my body had gotten the recurrent discharges under control and my pain was very limited to a small area on my vestibule. He put the speculum in, after telling me I looked really good this time. He took routine cultures. I was elated that my pain was so minimal, and his evaluation matched. Then, he put something in my vag that felt like I'd been set on fire. I started screaming, shaking uncontrollably, and crying "WHAT DID YOU DO, WHAT DID YOU DO??" and he said since we were talking about vaginal pH, he wanted to "normalize" it with acidic solution, just to be sure. Even though he didn't check my pH with pH paper (something that would have been SO simple, routine, painless, and I'm sure I was normal already!!!), he thought it a bright idea to put "dilute vinegar" in my vagina. That's what he said it was, but who knows if it was a mistake. I was in agony and he was a bit freaked out I think. He slapped EMLA on (anesthetic -- something else I'm allergic to), then backpeddled and told me I looked horrible, so red and thinned out that I would never get better without using estrogen. I know he was just covering his ass, because he knew he screwed up bigtime. And I've never been the same since that incident (the discharges came back with a vengeance, along with masses of the sloughing cells [DIV thing] with patches of red skin in new places), which feels like more than malpractice. Without my permission, without warning, against anything I would have wanted, it feels like medical rape.

-- VULVODYNIA: Last specialist I have seen (this year, in June), who is a very good doctor -- the vulvar dermatologist -- said that in the 2.5 years since, my skin has healed from what was probably a chemical burn/severe dermatitis reaction from the above incident, but the NERVES HAVEN'T. So now I have full-blown VULVODYNIA. The pain outside the vestibule, the unprovoked burning, the hypersensitive clitoris. It's just mushroomed from that trauma. So now, it is not just a discreet area of inflammation, but broad nerve pain.

Personally, and the literature does make mention of this, I think vulvodynia is a much bigger beast than vestibuloynia/vv. The pain can be just as bad, but the former is more of a neuropathic pain that is widespread and involves more than a narrow area of inflammatory changes. Pain in the nerves is like phantom limb pain, it's just your nervous system firing away without stopping. A related syndrome this has been likened to in the medical literature is Reflex Sympathetic Dystrophy, now renamed Complex Regional Pain Syndrome, which is when an area is injured and heals, but the nerves go haywire, causing pathological changes in the tissues/cells.

This recent doctor told me that currently, there is a consensus that vestibulodynia is just vulvodynia that is confined to the vulvar vestibule. They are not really different disorders, just a matter of degree and scope, basically. Vestibulodynia is more often provoked by touch, whereas vulvodynia can be unprovoked more often (which is worse, because you can get pain even if you're not touching the area and irritating it). She also said that the early biopsies I had showing chronic inflammation are probably useless, since yes, it's a very classic finding, but healthy women also have inflammatory cells on biopsies. So they don't think its primary cause is inflammation, but rather nerve sensitivity.

MY PUTTING TOGETHER THE PIECES AND TIPS:
I have gone through so many doctors and treatment attempts, as well as researched this exhaustively, I've concluded this: while we are all individuals, and clearly respond differently (as we can see from this board), WE HAVE SOMETHING THAT HAS CAUSED IRRITATION TO OUR NERVES, and now the question is, how do we get the nerves to come back to normal. Mechanical trauma, emotional trauma, immune system problems, and the chemicals that nerves secrete when they are dealing with an allergic-type response, as well as possible irritants in the urine, all play in. Then, finally, the pelvic floor muscles get in on the act, guarding from more pain. So blood flow is compromised, and that continues the vicious loop of all the above.

I have also concluded that modern technology has failed to develop a way of detecting infections that persist. I believe, based on my experience of getting totally clean (negative) cultures, yet still getting some improvement with oral antifungals (fluconazole) during some flares means that I am hypersensitive to yeast, which we have normally in our bodies. Also, there are types of bacteria that can cling on even after antibiotics, and hide (mycoplasma, ureaplasma, other organisms) that are not being picked up by standard testing. I have used anti-bacterial/fungal herbal approaches to the discharges and pain, and it has improved me, sometimes significantly. Not a cure, but the fact that it's helped me shows that the MUST be some germ factor here that is being missed. I strongly suspect the same is true for IC.

So as we stand in 2012 with these diseases, doctors really have only tiny scraps of clues. They don't have much more to offer but band-aids. I know some women have healed significantly from many of these approaches, but I am not one of them. And so the search goes on.

For those who have complex health issues like I do, and complex, longstanding vulvar (or urinary) pain, I think the medical science hasn't touched the tip of the iceberg yet, and it's up to us to be informed consumers. It's also up to us to sort of take everything we hear with a pinch of salt -- keep an open mind, but also, I can't really trust anyone's word for anything, and believe LONG TERM STUDIES need to be done before trying anything extreme. I've seen 4 vulvar specialists in all, and each one has said something different, so there is no consensus, even among "experts." I actually feel I know my body and what rings true more than these clinicians. They are still very much in the theorizing and data-gathering stages, which means for us: it's all experiment, and the etiology (cause) of this is not one thing, but a string of many complex things that are very hard to piece out or get grant money to investigate.

So here are a few things that I believe are harmful and should not be done, (I realize this is based on my personal experience, and others may have other experiences, but a lot of this is fact):

* Boric acid: given all that is known about this, it's great as an insecticide, and also for killing yeast, but it is TOXIC to human tissue; especially when absorbed through vaginal mucosa, it can poison your entire body and give you an allergic reaction

* Botox injections: I haven't done them myself, but I won't ever do this, because botox is also toxic to tissue; botox is the extract of the botulism bacterial toxin (thus, the ending, "-tox"). It paralyzes muscles. I saw an acupuncturist once who had a patient with severe migraines, who had undergone many botox injections on the scalp which temporarily were a miracle, but that destroyed his normal muscular function permanently, and then he had even more problems on top of migraines

* Vestibulectomy: once you "cut it off", you'll never be able to put it back on again, so the permanency of this procedure terrifies me; based on my story above, you'll see how early this field of study is, so we don't have enough long-range evidence that vestibulectomy is a permanent cure -- enough years simply haven't gone by to get a lot of data of follow-ups. The specialists I saw all swore that their treatment rates were excellent -- but how many of the women they operated on left them as doctors, because they were so much worse? I don't trust surgeons who don't present their failure rates. I don't trust the notion that cutting off tissue that in many cases was healthy before a trigger occurred makes sense. That's like saying, if you get a sinus infection, and the infection or the inflammation or allergy hasn't gone, just cut out your sinuses. You haven't healed the root of the problem, you're just taking off tissue. Not to mention, when you have a vestibulectomy, certain lubricative glands are removed, which will make you have more need of artificial lubricants, and those can cause sensitivities vs. your own natural bodily fluids. Scars themselves are known to cause poor healing and pain syndromes. The women I've read about who improve with surgery then later get a relapse. Which doesn't surprise me, because there is a process in the body that has created this effect and you can't remove THAT. The more complex your chronic health issues and other diagnoses you have, the worse of a candidate you are for a vestibulectomy, because your pain may be just one target of your neuro-hormonal-immune problems. So I believe this is a biochemical problem that has no clear answers yet, and to chop off part of my most intimate area when it's not diseased in the way gangrene is (like, we don't have necrotic, dead tissue!) feels barbaric and invasive and violating to me. My opinion is you don't solve a biochemical problem/riddle by amputation. I believe in another 50-100 years, no one will be performing vestibulectomies anymore. I have been beyond on-my-knees desperate...but I will never do this.

*Anti-depressants, neurontin, etc.: while I believe some women benefit from these, for me I get side effects from brain-altering substances (and don't want to gain weight), and if we have low-grade undiagnosed infections, or allergic issues, tissues that are inflamed for unknown reason, OF COURSE our nerves are going to be hurting. So again, this is a bandaid treatment. So in my case, and my research says, the most likely explanation in a lot of this is that the nerves are receiving pain signals because there are inflammatory chemicals being produced at high rates; this causes the nerves to increase in number and sensitivity. And that's what we have to get to the bottom of. Pain meds and anti-depressants can break into that cycle, but I've never seen anyone cured by these means, and a lot of times not helped as the brain acclimates to the drugs

*Vaseline/petroleum jelly: a lot of practitioners still recommend or use this, and it boggles my mind. Because vaseline is processed fossil fuel. It's a petroleum distillate. It's derived from the same thing they make gasoline out of. It's completely foreign to human skin, and blocks all moisture and air. There are so many better substitutes that are more compatible for human skin: vitamin E (pure, not mixed with anything else, in glass bottles, not capsules; it's very thick and not only protects skin, but has a lot of healing properties as an anti-oxidant), extra virgin coconut oil (from good sources - it also has anti-fungal, anti-inflammatory, and anti-bacterial properties), even olive oil. You can experiment with vegetable oils, and ones that have good omega 3 fatty acids (like evening primrose oil, black currant oil), jojoba oil, etc. I just do not believe we should put the petrol-like gunk that is Vaseline on our tender parts.

*Steroids: studies have shown that women do not improve overall with steroids, because this is only a mask for the problem at best, and women can get cortisone sensitivity reactions (as has happened to me -- steroids burn me more). Also, cortisone thins tissue out over time, so it's not a sustainable treatment. They will not cure the nerve issue, which is where the trouble is occurring. Cortisone also causes yeast infections the more you use them.

*Anything with glycerine or parabens: GLYCERIN is in just about every topical vulvar product, from medications to lubes. It is supposed to retain water/moisture. But it is a sugar type of molecule, and therefore can promote yeast infections, which is how this started for many of us. DO NOT USE ANYTHING WITH GLYCERINE! Parabens are chemical irritants for many women, and also are now believed to be potentially cancer-causing. So anything you put on your vulva should be free of these chemicals, including things you're treating yourself with.

I've started physical therapy as part of this piece, but in my case, I believe mechanical/structural issues are probably not the primary cause, but a reaction to all the rest and more peripheral, if part of the cause.

I've had some things help, and maybe I'll make a different thread about those. I KNOW MORE WHAT DOESN'T WORK OR IS JUST BAD NEWS, THAN WHAT DOES WORK, and wanted to share those things.

I currently am in most dire need of female-to-female support, since my psychological state is at an all-time low with this. I feel I have PTSD from what has all happened, especially the violating medical event in 2009. I'm very sad thinking I may never find another partner, ever have sex and love again (which might actually help me heal?), find the right combination of things, and I've socially isolated myself. I'm in a REALLY BAD PLACE.

So all I can do is offer words of advice at this point...my story is one of lifetime loss, grief, and heartache, so I don't know how I'll get out of this. I'm also in the perimenopausal years (I'm 44), so this scares the living **** out of me -- I can't see how it all won't just get worse, because that's when even normal women develop problems.

I wish I had a brighter ending to all this, to give some hope. I don't know if there will ever be a happy ending for me.

Darkhorse,
I just want to give you a huge hug right now!!! Please don't give up on life, health, love or happiness. It's never too late.

Also wanted to say I agree 100% with your assessment of what NOT to do. Most of those things were recommended to me at one time or another and I chose not to go there. I do not believe in poisoning our body further when it is already at its limit!

You must be a very strong woman to have gone through all this and still be hanging in there. You probably wish you hadn't had to be. I really do get that. The year I've had has been horrific, not because of V, although V is now the icing on that cake. And I wouldn't wish a day of vulvodynia on anyone, much less decades.

Anyway, you are not alone. None of us are alone. We are all trying to fight one more day for a "normal" life.

Hi Darkhorse

Your story is absolutely heartbreaking - I so hope that you can find some advice, support and comfort here. I've only had my vvd for 10mths and I know the pain and distress I have been through so I can't imagine what it has been like for you. You must be one strong lady to be here with the motivation and courage to share your story.

And I would echo LillyK - don't give up on having positive things in your life and finding a treatment that works for you. I definitely agree with you that hearing the advice/tips/success stories of other women is the best medicine - this forum has been more helpful and life-saving to me than any of the docs/specialists i've seen so far.

So welcome to our life raft - may it sail you into less troubled waters!
x

Hi LillyK,

Thank you so much for the hugs!! I was so afraid no one would reply to that gigantic saga of a post...but it's MY story, and I've never had a place to write it ALL out, and especially not to women who understand how bad it really is.

And I'm also really glad that you are in alignment about all the "don'ts" that we should be thinking about. My post was actually triggered by reading another poster's story about a vestibulectomy gone wrong, and even though my post is about so much more than that, I just feel really angry and disturbed that so little can be offered to us that's really curative, or that doctors are so trigger-happy with medications, surgery, etc., when the problems are so much more complex and deep-rooted than that, and their knowledge is so limited. I'm also really angry at doctors who propose things that don't work, and then shy away from the repercussions, as if there's something wrong with US if they were wrong.

I truly believe the body being poisoned or out of sync in a variety of ways brings these things on, and it takes a lot more to get well. It's just too intricate for many "experts" to understand. I'm glad there are more than there were 20 years ago, and many of them really do care and try their best, but there's a lot of ignorance and arrogance out there, parading as knowledge.

I'm so sorry to hear about your year being so horrific -- I don't know if you mean medically, or otherwise, but I know how it feels to have many things just hitting the fan at one time. I hope any part or layer of that starts to ease up for you soon. HUGS BACK!!

You're right...I have had to be strong to get this far, but there are so many days I grieve what I have lost, even when I'm trying to look at the glass that's still left...that I feel I'd have to be insane to have ever chosen this way of becoming strong. It just seems so much could have been done with my life to benefit others and create things for the world, and that can't be done when so much of your energies are going to dealing with such a private hell.

And thank you for the words about not being alone...I really feel grateful for them, and it's really brought a tear to my eye (same for Loulou). Big thanks for being here and part of the fight together, and for replying to my post to help me feel heard. Blessings.

Loulou,

Thank you from the bottom of my heart for reading through that very long tale, and for being there. Halfway through it, I kept thinking, "Who cares?" It's so hard to tell my story after such a long time and I know everyone has their own pain, so why would anyone care about mine when it's just one long nightmare.

It brought a tear to my eye that you gave me words of sisterhood and recognition of how totally brutal this has been.

Part of what I wanted to get across is that (even though my message was not upbeat) if you're "new" to this condition, as you are at 10 months, I think there is more hope for healing than there has been prior. I think even as much as I've seen staggering levels of ignorance and arrogance and INEPTITUDE, the medical profession is now paying attention to this. There are whole organizations devoted just to vulvovaginal diseases and disorders, and now when I say "vulvodynia" to a medical professional, they have often heard of it whereas before it was a total blank. I even know a nursing student who has heard of it. So as sorry as I am that you have to deal with this miserable, miserable condition, your being in the early days of it, as well as at a time where more light is being shone on it, is all going to work in your favor. I'm glad you've gotten diagnosed so soon in the process and have found the "life raft" of other women. Because you're right -- we, as women, are the ones who can really help eachother along on the path when it seems impossible, and spread the word when something good comes down the pike. This is truly a life-saver. I can't believe it's had to take 27 damned years of this to find ACTUAL other women who have this as a group, not just doctors telling me, "They're out there."

I've heard statistics that this is such an under-reported disorder, as many as 15% of the population may have it. But then why has no regular gynecologist had more than me and perhaps one other patient with it??? "Well, women don't mention it. They don't want to talk about it." Um -- how can any woman with this kind of pain NOT MENTION it? The entire exam is so painful, you'd have to be Houdini to HIDE it! So, I've just felt like some alien from outer space.

I've felt for many, many years that if I just were to meet other women, I wouldn't have to feel that empty, lost "no one gets it" feeling I have with so many docs/therapists, etc. I've often thought, there are support groups for just about any malady you can imagine out there -- why is it so hard for women with vvd to have one, and find others like this? Kind of envious in a twisted way of all the other female disorders' support groups overflowing with women.

So this is really wonderful.

Your warm welcome aboard is really uplifting, and I hope that we can do a lot here to find our way through this.

xx

I wanted to send out a hug to you also. I can't imagine how you feel. Going thru all that for so long.
I'm 50 yrs old and had have vulvodynia for 4 yrs now. I only have provoked. I haven't had sex in 4 yrs.
I'm afraid if I meet someone I really like that they will not be able to accept the possiblity that I cannot
have normal sex. I hope someday I do meet someone special enough to love me enough to accept this.

Anyway, I'm glad you found this forum and told your story. It's nice to have a place to talk / vent with
those who can really relate and that are also so caring.
Please remember you're not alone and the women on this forum are so nice and compassionate.

I will add you to my prayers.

Hi Darkhorse and welcome to the forum, I just want to chime in here too! As you're now seeing a physio please make sure they do a proper job, not all physios are created equal so some points you need to make sure they don't miss:

Trigger points in general but definitely ones in the pelvic floor itself, the adductors are a must especially the adductor magnus right at the top of the thigh and towards the back.

Spinal mobility all the way up your back, there are a couple of nerves that supply the vulva that start at the lower thoracic/upper lumbar area and these areas frequently stiffen up so could be irritating said nerves.

Pelvic alignment, absolutely essential and if you need realigning they need to figure out which muscles are weak and need work to stabilise in the correct position. In fact all women's health physios should muscle test around the pelvis to figure out if there are significant imbalances that have led to pelvic floor hypertonicity.

Posture, women who grip with the glutes tighten up their lateral hip rotators which is pudendal nerve territory and those who jam the pelvis into a swayback position grip with the front of the hips too so can irritate other nerves in that area. Posture while sitting too and gait analysis to check for loss of control of the pelvis during walking.

Breathing, although diaphragmatic breathing is good for relaxing the PF it isn't the way to breathe as you move around so they need to check you are breathing right into the back and sides of the ribcage so your deep stabilisers can function properly, it's often referred to as lateral breathing.

They should also be aware of the slings of muscles that work to stabilise the pelvis and be able to test if these are giving way in a particular area and not balanced. Asymmetry is common with pelvic pain and should be addressed.

I started with VV like you did then it progressed into full blown constant V and has been that way for the last 2 and a half years. My physio (and my GP) dislike how often doctors take the easy option and diagnose "vulvodynia" purely because it tells us nothing except what we told them and is a description of symptoms that shouldn't be used as a diagnosis unless all known causes have been ruled out. So my physio would diagnose me with pelvic instability and pelvic floor dysfunction as they are known causes and are present in me. Perhaps we don't hear about it much because some women get a proper diagnosis from someone before some lazy doctor comes along and uses the symptoms as a "diagnosis". I noticed in the figures where it says 15% of women have vulvar pain during their lives it also states of 3 months duration or longer which allows for a huge variation on length and implies most of them recover so I still hate lazy diagnoses!

A first hand experience of it going unreported is a friend of mine who had SI joint instability for a while and during that time also had vulvar pain but assumed it was a very persistent case of thrush that went away coincidentally at the same time her pelvis stabilised. It wasn't until I told her about my V she realised she'd had the same and of course never reported it because she didn't connect it to anything other than her wrong assumption it was thrush.

I also think if women can take meds and they help it can help break the pain cycle and improve quality of life while other methods are tried but shouldn't be relied upon as the solution as of course they only mask the pain plus the body has a way of getting used to them and requiring ever increasing doses so it's important to keep trying things even whilst on medication.

Good luck with the physio and it may well be behind your problems since you have a long history of irritation in the area.

Dear Darkhorse

I am full of admiration for you after reading your post. I cant imagine how you've coped with having such pain & suffering for so long without going completely mad. Instead you are dignified, eloquent & smart. You clearly know far more than any so-called specialist Ive ever seen. I wish I could give you some advice or tips but Ive only had V for a few years & really acutely suffering for a matter of months, which has prompted research & the quest for ANSWERS. Its only dawning on me now how little hard science there is out there on Vulvodynia, and what a lottery treatment is. So your contributions here will be invaluable to other sufferers Im sure.

Big hugs to you! You are not alone xx

Hello, my name's Helen & I'm from the UK. I'm also new to this group, tho am definitely not new to vulval pain! I'm 39yrs old @ have suffered with vestibuldynia since I was 20yrs old. I couldn't believe it when I read your story as it seemed to mirror my own, it could have been me writing it! I also suffer with CFS, Fibromyalgia, IC & IBS. These conditions have made it almost impossible for me to work, have had a major impact on my mental as well as physical health and have, to be honest, ruined my life. The similarities between you & me cannot be coincidental - like you I was pumped full of antibiotics as a teenager for mild acne, I suffered with recurrent yeast infections & my immune system was further compromised by contracting tonsillitis, glandular fever, shingles, oral thrush & being pumped full with lots more antibiotics!
Over the years my symptoms have fluctuated but NEVER gone away. Infact I don't know what it is to live without pain anymore; that horrendous raw, burning pain in my vag, burning & stinging when I wee/pee! & the most dreadful burning wind/gas (because of the IBS) that I feel like my 'bits' ,bladder & bowels are on fire most of the time - a mass of burning 'down below!'...Obviously sex is a major issue, I feel very isolated & depressed, angry & bitter about the impact this has on my quality of life - how all this has changed me & why I have to suffer so much.

To end on a lighter note tho - something which I hope will give you hope - in spite of all this (& more I have yet to mention!) I have the most amazing husband of over 9yrs & two beautiful girls aged 8yrs & 2yrs (both 'immaculate' conceptions! & born by elective caesarean) They are my life - without them I don't know where I'd be - so in this at least I am more than fortunate. I hope you do find love, I just want you to know there are some good men out there who are not merely obsessed with sex so never give up: I am proof it can happen!

I would love to hear back from you, and to also go into my story in lots more detail. I really do honestly know how you feel and I want you to know that you are not alone. Please take care of yourself, sending you BIG HUGS, Helen XX

Hi ladies,
I feel so blessed to have found and joined this site today!!!
I am almost 40 and have suffered with V all my life! As a baby, everything down in "that" area kept sealing and they would surgically open me up!! This happened 6 times from baby to about 5. Just typing that down brings back a lot of horrible memories of doctors "diving in" and not being very sensitive!!! (I'm not a big fan of doctors!!)
I have had a life time of inflammation and pain. To be honest, there is so much history I don't have the space or energy right now to type it all down!!
My husband and I are having issues right now because of it and I have been crying all night and morning!!
I am so lucky to have found a supportive man who is 99% patient and supportive - but every now and then the frustration gets to him - and who can blame him!!
We were lucky enough to have two kids (hubby ejaculated at the entrance of my vagina and I fell pregnant both times!!!!)
I just feel exhausted by the lifetime of this and do not know what else to do!!!
I agree with all your "don'ts"!! Just the thought of some of them are making me burn!!! hahaha
Hugs to all of you out there - especially the "long" time sufferers like me!!
Charmaine xxx