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Short stories about painful sex and relationships

We now have nearly 650 women and over 80 men who have taken our online survey about painful sex and relationships. I wanted to share a sampling of the stories women and partners have shared in the comments section of the survey. (Only two of the partners have been women.)

I also want to mention that it’s not just sexual/intimate relationships that suffer. Many of the women with whom I’ve spoken have talked about their mothers, fathers, brothers/sisters and children having to know what is going on.

WOMEN:

  1. Because I’ve never experienced pain-free sex, it is sometimes difficult for me to recognize at what point we should stop. I learned as a child to endure pain and not complain. That makes sex more difficult and confused for me. I don’t really have a model of what sex is “supposed” to feel like. It took me about 10 years of painful intercourse before I said anything. My spouse tries his best not to hurt me, but it’s something that hasn’t been easy for either of us.
  2. He is a very supported husband. He does not want me to hurt. It hurts me tonot have a relationship sex with him. i want it and can’t do it. it makes me mad. He is better than I am with the whole thing. i told him to get somedbody else. he said NO!!! He loves me no mater what. To death do us part. Sickness and health. See i have had brian surgery in 1999. Seziure free!!! Then this !!!
  3. Husband will not substitute other activities for intercourse. He won’t stop unless he loses erection. He’s glad I can “do it” again (thanks to horemone creams) but wants me to enjoy it (which I can’t because it still hurts some).
  4. I have been married for 26 years. I am lucky that my husband hardly ever asks for sex any longer. I do however, always feel angry and guilty when he does ask, because I think he should be able to see how much pain I am in, and understand.
  5. I only tell my fiance about the pain during intercourse after intercourse. I often position myself during intercourse so he cannot see my face when I wince or cry. He’s always very supportive of me, and would stop intercourse if I asked him to, but I guess I don’t think it’s fair for him to have to suffer, too.

PARTNERS

  1. After she was diagnosed, I would stop. But she said she wanted me to finish, so she didn’t have to hear me ask (asking includes trying to talk about her condition or trying to create a romantic mood).
  2. Because of her condition and the related pain. I have pulled away form her and am afraid to attempt to get physical as I know that it will cause her pain. This is very hard on me and I know that it must be as bad or worse for her. But God brought us together and will keep us together. I love her too much to let this to control us Sex is very important to me and our relationship but is not the most important. If it comes down to it I will be blessed to be the one who gets to take care of her.
  3. My wife has been worn down by the many doctors that have failed her. She has basically given up trying to correct this situation. Our once heavy “chemical attraction” has be completley ruined. I am still interested … but she’s not!!! I have taken on every suggestion given to us … to no avail. I’m lost as to what to do. We may break up shortly after 15 years of sexual problems with painful intercourse.
  4. JUST WISH THERE WAS A CURE.

Advice from the UK about first-time sex & pain

The Times Online website has a sex advice column by Dr. Thomas Stuttaford and Suzi Godson. While not specifically about chronic sexual pain, this article on first-time sex and the fear of pain is an interesting, entertaining and thoughtful discussion about the most comfortable positions for women starting out as well as other methods to minimize pain and increase pleasure.

From the article, “The discomfort of early penetrative sex, if there is any, is usually related to tension in the pelvic or thigh muscles and/or anxiety that has prevented the usual vaginal lubrication.” For me, as a chronic sufferer, I do know that tensing up (which is instinctive at this point because of the pain) makes it all worse. (I’ll be writing more about this in our next newsletter.)

As always, we’d love to hear your comments on this article.

National Vulvodynia Association (NVA) posts excellent tutorial

This NVA tutorial is targeted toward healthcare practitioners, but it’s a fascinating and helpful learning tool for those of us who suffer with vaginal and vulvar pain. The tutorial describes some other causes of the pain and ways to manage symptoms.

What’s so wonderful is that this excellent organization developed the tutorial because, “healthcare providers need educational programs to assist them in acquiring the knowledge and skills to evaluate and manage patients with vulvodynia.”

Also from the NVA site, “According to an NIH-funded study conducted at Harvard Medical School, approximately 16% of American women between 18 and 64 years of age report suffering from chronic vulvar pain at some point in their lives, with more than 90% reporting many years of pain. It is estimated that six million women may currently be suffering from the condition. According to this study, the incidence of symptom onset is highest between the ages of 18 and 25, and lowest after age 35. (Harlow BL, Stewart EG, JAMWA, 2003 and Jantos M, Burns NR, J Reprod Med, 2007). Once considered to be a condition that affects primarily Caucasian women, recent studies have shown that African American and Hispanic women are just as likely to develop vulvodynia.”

Please give us feedback after you’ve looked through the tutorial.

Unable to work…. Unable to continue care?!?

As of late my world has been turned upside down. In Oct 2006 I had a hysterectomy at the age of 21 and since that time I have not be able to work and found out this July I was fired and my medical coverage for me was over 1,000 a month and I don’t even make that on my disability through work. So, I had to take the chance and stop my coverage which means I had to stop all of medication and treatments. Now, the pain is back with avenged.

I have applied for government assistance, SSDI, and adult basic but the lines are so long I am unsure if I will ever get help.

Then also the man that I have been spending the last 9 years of my life left me because I was unable to have a child (yup, that one that won over so many people and doctors because he ‘cared’… hell he was interview for this book). So, on top of that I found out that he has been cheating on me since I was unable to please him with my conditions. And has a child on the way which was conceived when he and I were together. Now, I am trying to rebuild my life, but being alone with all these problems and unable to really take care of my self medically my life has been changing.

I am really glad that this site is up and maybe I am able to find someone out there that knows what I am going through.

The Beauty of Medicine

Surgery is an ugly thing. Years ago, at a very young age, I began developing severe pelvic pain and female related problems, which is hereditary in my family. On my eighteenth birthday my doctors recommended I undergo a laparoscopy, a surgical procedure used to test and treat many conditions. The dilemma with having this surgery was that the laparoscopy was the only way to eliminate certain diagnoses: like endometriosis. Nervous about going under the knife a third time, I avoided the issue figuring the pain wasn’t that intolerable and an x-ray or sonogram would suffice.

Three years later, I became ill. One morning I woke very worried due to extreme abdominal pain and vomiting that reminded me of food poisoning. Except hours passed, and the symptoms continued so I decided to visit the St Josef’s Candler Immediate Care facility on the south side of town.

After checking myself in, I sat in the waiting room for thirty minutes, only to wait some more once my name was called back to see the doctor. I discovered over the next six months the waiting period was often the worst part of a doctor’s appointment. You are one of hundreds of patients to this doctor: a dot.

The doctor’s test results that day revealed blood in my urine and assumingly this was causing the abdominal pain. I was then prescribed some antibiotics and the nurse drew my blood for further testing. Having my blood drawn became like second nature during my illness too, seeing that I ‘donated’ enough fluids to fill a truck.

Disturbed by the news, I phoned my local gynecologist for an appointment and took the advice of the doctor at immediate care. To no surprise, it took one month for an office visit with my OBGYN specialist, so, for the next month I tried to ignore lower abdominal pain. Two weeks later, after a couple glasses of wine, the following morning I experienced the same shooting pain as I had two weeks prior. Wanting to forget my doctor’s advice three years ago, I tried very hard to smother the fact this could be female related.

Another fourteen days later, my specialist appointment date arrived and a series of tests were performed, on numerous occasions, including pleasant things like ultrasounds, x-rays, sonograms, pelvic exams, blood tests, and many, many medical bills. When the doctor read my file and spoke with me about my history, she strongly advised I quit smoking cigarettes, drinking caffeine and consuming large amounts of alcohol as soon as possible. I was also asked to limit any sexual activity until the test results returned.

A few days later I was called back to the hospital for a visit with the doctor to personally discuss my results. Suddenly, I became very nervous and wished I had just received my letter of good standings in the mail like all the years before instead of this phone call. My specialist sat me down in her office and said I had Polycystic Ovarian Syndrome, which in short, is a disease that overproduces activity in a woman’s reproductive system which can cause symptoms like pelvic pain, irregular periods, infertility and cysts. She also showed me ultrasound photos that exposed many small cysts and lesions around my right ovary.

At this point, I needed to visit the urologist and gastronologists specialty office as well to eliminate other causes of pelvic pain, since the cysts were not life threatening. Another month of waiting, like one of hundreds of millions of people in the world who suffer in pain while waiting to see the doctor or to be healed.

The urologist’s office was awkward because once you’re admitted; patients are required to travel around the facility with urine cups in the presence of other strangers. Usually at the hospitals and specialty offices, I was one of the youngest women in sight and this always made me uneasy. I felt like time was passing me by. The urologist prescribed six weeks worth of antibiotics to heal the constant problem of red blood cells in my urine; it hadn’t ceased since my first day ill in case of infection. An awful procedure called a cystoscopy was performed as well, where they insert a scope and camera through one’s urethra into the bladder to look for disease or damage. Thinking back on that morning, I remember being horrified by my doctor’s suggestion I watch the television screen that was receiving images from the scope inside my bladder to ease my anxiety. And ironically, looking at the monitor made me want to faint. Somehow, watching surgery and the internal organs of a person on television just didn’t prepare me to gaze at my own inner self.

To my demise, I didn’t ask beforehand about local anesthesia for the cystoscopy so I endured the procedure without sedation, which I do not recommend to anyone such as myself who enjoys their personal space. Always ask your doctor questions beforehand, seek out detailed information about each procedure and medicine, and learn to practice deep breathing and try to remain patient through an illness.

Now that the urologist had ruled out any troubles with my urinary tract and I was feeling a bit violated and disturbed by my first physical from a male doctor, it was time to submit my body for more examinations. A gastronologist was necessary to investigate my gastrointestinal tract, and the word alone made me feel uneasy. This whole affair thus far felt invasive, but I attempted to be cordial since I admire the medical field and how hard they work. Be reminded, there are those who taint the medical profession, and like everything else they is always a bad seed to pollute a good crop.

My gastronologist appeared honest and sincere. He was very direct and thorough, and his staff was organized and helpful. Even the two procedures, an endoscope and a colonoscopy, were all right, despite the circumstances of my health. I remember laughing on the table before they put me to sleep thinking they were nice people. But perhaps this will due to the sedation and the drugs that made everything seem alright.

During all this melancholy illness, I was prescribed an abundance of perscriptions from three gynecologists, at least fives trips to the minor ER, the urologists office, the gastrnologist’s office, two visits to the emergency room and an internal specialist. I refused to swallow most of the pills, and I felt like many physicians were distributing medicinal drugs in substitution of service and healing. Just numb the problem, and give us your money, we’ll fix you eventually. I was taking pills for nausea and possessed three forms of pain pill narcotics for the unbearable pain that continued to worsen. It was difficult to think in such pain, almost impossible to converse sometimes and life felt miserable as my head and my body was now feeling poor. But you must not get so discouraged when undergoing a time of sickness; it only prolongs the healing process.

Eventually, all the drugs stopped working and I began taking a higher dose of medicine as prescribed by the doctors. But then, I began to feel anxiety like never before and sleep was at a minimal. I lost my appetite completely. Trying to swallow saltine crackers sometimes made me gag. My weight, went from a mere 122 lbs to 114 lbs in a little over a week. I then began losing about two lbs a week. And taking into account I’m only 5′5″ in height, the weight loss was showing and the pallor was white and dismal . But even after extreme weight loss, my gastronologist didn’t seem to have any answers or aide to my dilemma; instead, he sent me to an internal medicine doctor. When I arrived the internalist asked me if I knew why I was there, and assuming it had been for my tests I realized I truly didn’t. The doctor suggested the pain was all in my head, and that often he and other doctors like my gastronologist work together to treat patients such as myself. That I was one of many depressed people. He felt that I had no real physical problems, and didn’t look like a candidate for Polycystic Ovarian Syndrome because I was underweight and my problems were purely psychiatric, despite any medical records that contested his theory. I left that day with a free month worth of anti-depressants that went directly to my trashcan.

I cried on the drive home from the doctor that day to my boyfriend’s house who was helping take care of me at the time. I weighed 110 lbs, weak as ever, and in constant pain that aggravated my life, my job and my school. I had already been to the emergency room once before and they had also limited any possibilities as well in regards to my vomiting, nausea and anxiety. The only issue discovered during my first trip to the emergency room was my allergic reaction to morphine that I was given through an IV. The only time I was without pain was after being given medicine through an IV, and even that was difficult because I had thin veins that were dehydrated at the time causing bruising and hematomas.

It was like no one knew how to work the machines, give a diagnosis, or stop the pain. I even began to wonder if I was losing my mind. I phoned my gastronologist to speak about my concern at the internalist’s office and express my disappointment that he sent me to another doctor who suggested my problems were psychiatric. My specialist then told me if the internal medicine doctor felt I was crazy, then he would be prone to agree, and could no longer serve as my gastronologist, but would be happy to transfer my records elsewhere. I was outraged. I felt small being so young and sick with doctors who didn’t help you even if you were thinning away. I was discouraged and had trouble connecting with anyone. Generally, these kinds of female problems occurr in women 30 and older, young adults my age were more concerned with themselves than the health of another, or they didn’t’ know how to respond which was frustrating in itself.

Five days later, I was vomiting green bile for hours and took a second trip to the Emergency Room. Dreading a twelve-hour wait like before, to my benefit no one was there at 5:00 AM and the nurses got me hooked onto an IV in no time. Four hours later, after many repeated tests that several doctors had performed before, I was told I had an additional cyst on my left fallopian tube and to desist taking any narcotic pain pills, as I was allergic to them. Suddenly, the allergic reaction to morphine made sense and the next day, late in the afternoon, all my vomiting and nausea desisted and I only had to battle my stiffening pain.

Finally, after six months of waiting, my laparoscopy date was scheduled for August and I began to feel scared for the first time about my surgery. I had to force myself to deep breathe and remain calm and patient during the last few days prior to operation. The pain was consuming my thoughts and in a way I was looking forward to the procedure because the surgery meant the removal of pain. The morning of the big day in the operating room, I remember being very cold and disorientened like in a fog or a dream, lying on a hard table, with at least eight people running around with tools in their hands, speaking in medical terms and bright lights overhead before me shadowed everything together like and a tunnel of light and I fell asleep. I woke about two hours later, in a recovery room with two incisions, no cysts and void of pain medicine to dull the wounds.

Almost two months now past my surgery date, I feel near a hundred percent recovered, and one step behind. Every now and again while I’m dancing, working out, shooting pool or resting, the pain returns and my abdomen feels tender. But this is apart of the healing process, and I’m grateful for finding doctors who treated my problems and relieved my pain. Although, I must now learn how to cope and tolerate with Polycystic Ovarian Syndrome and manage pelvic pain from time to time. Some of my symptoms that were a bit more personal were not explained by the cysts in my reproductive areas. My doctor and I anticipated the possibility of Endometriosis, but she also warned me sometimes women’s pain in unexplainable. Fortunately, there was no evidence to indicate such a problem, and I am blessed not to have Endometriosis, which is a painful chronic disease. Nonetheless, I fight the urge to feel disheartened and cheated by the fact all my questions were not answered and the pain will never be fully gone. It will just have to become apart of me.

I wonder now how I would have managed to pay for all this without medical insurance and the financial assitance of my family. Somtimes thinking of all those who cannot afford to seek help makes me doleful. And it took me all this grief to remember that overlooking problems is always ineffective, and ignored troubles will surely seek you out. Looking at the statistics, most women who undergo these problems range ages 30 and older, which stripped almost a decade of ‘good health’ away from my youth. Even though I was forced to change some habits of my lifestyle, and must tolerate a condition from now on, I am grateful that my health was not far worse. Keep in mind the human body is not indestructible, no matter the age or gender, and sometimes illness may arise to those we least expected. Cherish your health, preserve your body and mind and take care of the skin you’re in so not instigate misfortune of health.

Dr. Echenberg’s successful
Panama City conference

Recently, Dr. E was the keynote speaker at a pain conference in Panama City. He was extremely well received. Here are comments from a few of the participants:

Finally I had the time to write. First of all, my personal thanks for your excellent lectures. I enjoyed each one very much and be aasured that your words of wisdom won’t be forgotten.

Second, I wanted to make sure you arrived well. I didn’t have the
opportunity to say farewell but I was assigned to the delivery room the
final day and… well, you know what that means.

I will try to keep in touch and let’s hope we can work something out
between our services to improve even more our knowledge on the subjects
discussed on your time here.

Thanks again.

Dr. Osvaldo Reyes


I’m very sorry I couldnt say a proper Goodbye and Thanks to you for all you taught me me. I’m very happy for the opportunity to meet you because you are an excellent doctor with great knowledge and a lot of energy to make a change. A change in every aspect of the “wrong medicine” we see every day. You really inspired me and I will do my best to follow your steps in many ways here in Panama.

Hope we can see each other again,

Ernesto Alvarez Durnov MD


Dr. Echenberg, let me just say that it was an honour to meet you, and that hopefully in the future I’ll be half as good a doctor as you are! Please don’t be a stranger to our country, come back at any time, and bring the family too!

I am planning a trip on march, not sure yet between Spain and CA, but if I go to the US I’ll try to make it up north so I can pay you and your hospital a visit, and see what I can learn in a few days!!!! Our reality is that you are not one of our teachers, but at least some of the ones we have are trying to learn new stuff and most importantly are trying to put them in practice.

Take care

Respectfully

Roxana

Finally - a Real Study on IC and Related Conditions

After all these years, researchers are finally admitting that there are numerous symptoms that intertwine with Interstitial Cystitis, and now, a five year study is being funding by several of the National Institutes of Health (NIH) and the National Institutes of Diabetes and Digestive and Kidney Diseases (NIDDK). The full-scale, multi-year study will begin in 2008 and will receive a total of $7.5 million.

The name of the program is the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network. Some of the conditions covered are chronic pelvic pain syndromes associated with the bladder and prostate gland, fibromyalgia, irritable bowel syndrome and chronic fatigue syndrome.

It is possible (and I sure hope so) that vulvodynia and migraine may be included. To read more about this study, click here to read the ICA newsletter.

As a footnote, Dr. Echenberg plans to apply to participate in this study. These are the very issues suffered by his patients. Dr. E has also worked with male patients who experience pelvic pain.

Men experience pelvic pain & IC too

Recently, we received an email from a man who wondered why no one talks about male pelvic pain. My experience with male patients with IC and pelvic pain has not been extensive but we have had good success with those we have seen.  The national statistics show that IC gender ratio is about 8:1 regarding female to male prevalence of this disorder.  However, it is likely in my opinion that it is higher in men than currently believed.  The book, “Headache in the Pelvis,” was written by urologists from California. They describe how so many men are diagnosed incorrectly with “prostatitis”
who really have pelvic pain symptoms from IC.

Symptoms in men can be very similar to those in women and include urinary frequency, urgency, night-time awakening to void (nocturia), and otherwise unexplained pelvic pain including sexual pain.  I have several young men who have erectile pain, ejaculatory pain, and deep myofascial pelvic floor dysfunction with “gripping” sensations throughout the deep pelvis as well. We treat them very similarly to the women.  Most of them have already seen at least several urologists and family doctors and have not improved following the treatments for prostatitis or urinary tract infections as their
cultures are negative.

Medications for IC such as Elmiron, Hydroxyzine, low acid diet, Prelief, and neuropathic pain meds such as Neurontin and nortriptyline can be used very
effectively.  In addition internal release and pelvic floor physical therapy can be prescribed by therapists trained specifically for these pelvic “high
tone” disorders. Men with these chronic symptoms that don’t clear with the usual approaches (just as women) need to seek out specialists that know something about all these approaches in both women and men.

Our web site was developed in large part to start raising awareness to as many people suffering from these disorders as possible.  We are attempting
to educate patients so that they can find the legitimate resources that are available out there in their own communities to find the help that you so
desperately need.

On the road

Note: I’ve posted this both in the Editor’s Corner and Random Thoughts.

My Interstitial Cystitis has now interfered with my relationship with my son. It’s funny, when I started on this path to writing our book, I thought the only relationships affected by pelvic pain were sexual. Then I interviewed women who described issues with their children. Horrible, I thought. So sad. But I couldn’t relate. Now, I feel the pain of that.

One of my symptoms is a chronic need to, well, pee. I’d like to be more politically correct, but I’m just not going to write urinate two hundred times in this post. And now that I drink a lot more water, which, by the way, has made an improvement in my condition, I need to pee just as much, but thankfully, it rarely burns and stings like it used to. (I’ve written about drinking water in my post, Water - The Healing Elixer.)

My son, who is nearly 17, is in the school’s marching band. Sam and I have been going through a rough patch, which is very painful. He’s moved up the street with his dad. As the parent who has done most of the raising, I am pretty devastated by the situation. My son and I have always been so close. It’s not only humiliating that he’s not here all the time (”what kind of mother must she be for her son to move to his father’s house?”), but hits at the core of my being because he’s my baby (hmmmm, you don’t suppose that might be part of the problem?). “For goodness sakes,” says my husband, “he’s not dead, not a runaway, just up the street with his father. It’s normal for a teen to want to get close to his dad.”

So, in an effort to be close to Sam, instead of driving, I decided to go with the band last weekend to their competition in Inverness, FL, about a four hour drive on the bus. The bus left at 6 a.m. and we were scheduled to get back about 3:30 a.m. the next day. His dad was also going on the bus. He and I are sometimes good friends (it’s complicated), but of late, I am completely jealous of the fact that he has my son and has immersed himself in the band, where all the kids and the instructors find him cool, making him oh, so popular. I needed to do something to compete with his “Band-ing” with Sam. Thus, I had the additional thrill of spending the next 24 hours interacting with my ex-husband.

Sam had informed me numerous times that going to the bathroom on the bus was “not allowed.” But his dad said that was not true. And certainly, I thought it wasn’t possible that no one went on the bus. Still, when I showed up at 6, I had a kernal of anxiety balling up in my stomach. I needed to confirm the bathroom edict. So I asked two of the parents who are “regulars.” And indeed, my worst fear was realized. “Oh no,” they both blurted out in unison, looking horrified. The fatherly one went on, “you can’t go to the bathroom. Once that toilet is flushed, even if it’s ‘#1,’ it’s too awful. The stench. Oh no, you just can’t.”

Now, I was stuck. My anxiety grew from a kernel to a watermelon. I know this isn’t good, but I forced myself to pee three times before boarding, and was on the verge of a panic attack the whole trip up. They did stop twice, once for lunch (over an hour, thank goodness). But with IC, you just never know when the urge will strike again.

I was afraid to drink water.

At the competition, during the waiting times, the bathroom was five minutes away. Three stalls, 10 bands, hundreds of girls and female chaparones.

I think the very worst part was when we boarded the bus to go home. One of the mothers in charge announced that the driver would not be stopping on the trip back. I freaked out. It was embarrassing. They looked at me like I was from Mars. I just couldn’t bring myself to explain that I had IC, so I simply said … menopause. Luckily, they changed their minds and we stopped halfway.

But the trip wasn’t a complete disaster because my son was actually glad that I was there. He didn’t say it, but his demeanor showed it. He joked with me right in front of his friends. Let me take pictures and, once in a while, I even detected a smile when he glanced my way.

So was it worth the anxiety? Absolutely. Anything that brings me closer to Sam is worth the effort. And the fact is, all that worrying was for naught because it worked out fine. Still, I cherish my freedom to choose. So the next road trip … I’ll be taking my car and stopping at every rest stop I can find.

Thank you

I wanted to thank you for this site. When I discovered it (through an IC Help Newsletter) I almost shouted Hallelujah, it’s about time.  Someone, somewhere, someplace is validating what I have been experiencing for years and have had no answers.  I discovered when I got married at 27 that intercourse was painful and I didn’t know what was wrong with me. The doctor couldn’t see anything upon physical examination (as have any doctor’s since then). When my husband left me at 35 one of the things he told people was that I was frigid.  He didn’t understand I experienced real pain and of course that would affect my feelings toward sex, even though I continued to try.  I am now 47 and have been married 8 years to a wonderful man who is very understanding.  The problem is that he doesn’t want to hurt me so if there is any sex I have to initiate it and I really want him to initiate too.  And yes, it still hurts.  It wasn’t until a little over a year ago I was diagnosed with Interstitial Cystitis.  I never had any Urinary or Bladder infections to link this too.  I was one of the lucky ones in that it only took a year to get a diagnosis. This last spring I was diagnosed with Fibromyalgia, although I think I have had longer.  Several years ago they were at a loss what was going on so the doctor said I had Chronic Fatigue. It only recently got to the point that I can no longer work at home or on the job.  Oh, and yes I also have IBS.  That’s a bit of my history and I guess my point is that I too thought all these things were some how related.  (I was shocked when the Urologist was diagnosing me for IC asked if I had painful intercourse…my heart skipped a beat and I thought I might be healed…but no answers or help was provided).  The Gynecologist has only provided Estrogen Cream.  I have scoured the internet for every site I could find.  While I have found helpful info on FMS, IC and IBS there is very little info on this issue of painful sex and vulva pain.  I am so glad I have found you and my hope is that through this there will be an acceptance and awakening to this issue (just as the ICHelp.org, Interstititial Cystitis Network, has really been working to bring IC into the light, although most people still have never heard of it, they are getting funding for research).  My greater hope is that I will find comfort here and hopefully some answers someday.  THANK YOU!!