Solitude, laughter, sanity and support amongst the pain and frustration of chronic illness and chronic pain.
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Yes to Prop 2--Yes to Cures
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About The Body Chronic
What gives me the right to have this blog? Well, I live with numerous chronic conditions and chronic pain on a daily basis. When I began being diagnosed with these things--and even before--there was no place on the internet that helped me adequately research everything. Instead, I was forced to piece information together myself.
Being a little older and a lot wiser, I decided that no person should go through what I went through to get the basic information and support necessary to navigate the waters surrounding chronic illness. I started this blog in the hopes of creating a support network for those who have a daily interaction with The Body Chronic.
I am always looking for contributors, guest bloggers and other opportunities. Feel free to contact me at: thebodychronic@gmail.com
A Perfectly Cursed Life
If you like this blog, you'll love my writing blog, A Perfectly Cursed Life. I've always had a knack for writing things about my life that people find entertaining, so I figured now is the time to try and really get that stuff out there. Currently I only have recent writings, but I plan on uploading some older stuff as well as time goes on. APCL will be more personal and intimate. Check it out!!!! http://perfectlycursedlife.wordpress.com/
The Community of Support--Blogs and Sites for Those With Chronic Illness and Pain
The hype around certain deficiencies and in intolerances is usually something to take note of with a grain of salt. The big thing now is celiac disease, and while a good number of people have it, I'm sure doctors are seeing a rash of people who believe they or their children have it as well.
So when this whole Vitamin D deficiency thing came out, I had to say I was skeptical. I'm using skeptical in the most serious way because I think that it's too loose a word. To say that I didn't believe it for a minute would be more accurate. But some bloggers I respected urged on about it, so I figured it couldn't be too bad.
So, even though I was skeptical, I went out and bought some.
I have been taking the supplement regularly (or at least fairly regularly) for about three weeks now. At first I thought I noticed drastic changes, but over time those faded. (The changes included less fatigue, greater strength and less muscle weakness. ) But I have noticed some benefits that have lasted. For a time, I was a little less moody (when aided by my Prozac which I missed for over a week because of a lapse in prescription) . The fatigue thing faded some. I don't think it's a cure all, but I think it did help in this area.
So have any of you tried a vitamin D supplement? What were your results? Am I just making up benefits that weren't really there?
To live with the conscious knowledge of the shadow of uncertainty, with the knowledge that disaster or tragedy could strike at any time; to be afraid and to know and acknowledge your fear, and still to live creatively and with unstinting love: that is to live with grace.- Peter Henry Abrahams
Well, in those few areas of the country that allow for medical marijuana use, the fear was always that though the state or municipality allowed such use, the federal government did not. Theoretically then, the federal government could have come in at any time and penalized someone using marijuana medically, regardless of the safeguards or other laws in place.
But today, the dialog started to change on marijuana. Perhaps it's the realization that so many Americans support medical marijuana availability. Perhaps it's the fact that we are realizing the war on drugs is a crock. Perhaps it's the fact that we know there are bigger fish to fry and using government dollars to go after small time marijuana users just isn't worthwhile. Perhaps people are starting to come to terms with the fact that marijuana is actually less dangerous than alcohol and nicotine.
Whatever the case, today at least there's a little more breathing room (pardon the pun) for those with a chronic illness/chronic pain who use marijuana as a treatment option.
I don't know what to peg this on. I could say that the impending purchase of a home and a closing date in less than three weeks gives me heartache. I could say that work has been busier than normal. I could blame it on the heat. But none of those seem entirely true. Yet at the same time, I don't know what caused this relapse.
In the past week I've had the following symptoms attributable to at least one if not more of my chronic conditions:
fatigue
pelvic pain
vulvar pain
irritable bowels
back pain
headaches
frequent urination
It's as if my body's defenses have taken a summer vacation and left me to rot.
Though I'd like to end this post with some sort of creative way to get through a flare up like this, I don't think I have one. In fact, I'm planning on vegging out on my couch tonight for the better part of the evening. Maybe I need more of that. Maybe I need less. In any event, I don't know what else to do when all else fails.
Progress is a funny thing, isn't it? You don't always know what it truly means until it's eroded.
The poverty of our century is unlike that of any other. It is not, as poverty was before, the result of natural scarcity, but of a set of priorities imposed upon the rest of the world by the rich. Consequently, the modern poor are not pitied... but written off as trash. The twentieth-century consumer economy has produced the first culture for which a beggar is a reminder of nothing. -John Berger
I have gotten a good deal of feedback (all positive) about our guest bloggers on TBC. My only repeat-guest-blogger (at this time anyhow), Alexandra Carmichael, has been instrumental in the creation of the new site Cure Together. I was lucky enough to get a sneak peak at it last month and am excited that I'm now able to write about it to you. Cure Together is self-described as "a place where patients and researchers work together, doing open source research to find cures."
I can say many things about this site, but I'm going to be brief to allow you to mosey on over there and check it out yourself. This site is sorely needed. Too often there is a disconnect between the researchers and the people affected by the research. On Cure Together, as a patient, you can track your health, connect with other people that have your condition, and not only participate in research, but help fund it as well. This is just a brilliant platform! Now when we have the opportunity to donate, we can donate directly to the research affecting our lives.
So stop reading this and click over there today. Sign up and get involved! The only way we can hope to achieve progress is to make that progress ourselves.
There is nothing more difficult to plan, more doubtful of success, nor more dangerous to manage than the creation of a new order of things..... Whenever his enemies have occasion to attack the innovator they do so with the passion of partisans, while the others defend him sluggishly so that the innovator and his party alike are vulnerable.- Niccolo Machiavelli
Sponsored by Life With Vulvodynia. Check it out. I was really planning on making it, but it looks as if I might have double booked myself. But I encourage you to go there and I give a standing ovation to Quinn for setting this up.
The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles but to live in the present moment wisely and earnestly. - Buddha
Back in May we heard from Alexandra on her journey with vulvodynia. Alexandra is the author of earth-change.blogspot.com, a serial bio-IT entrepreneur, and Taoist Tai Chi instructor. She lives with her husband, two daughters, and vulvodynia, in the San Francisco Bay Area.Recently she helped launchCureTogether a site where patients and researchers can work together on issues of chronic health. -----------------------------
I feel like I've been cured.
I guest blogged recently about my 10-year journey with vulvodynia. Only 2 months later, I am enjoying a 95% pain-free life, including, yes, SEX! For the first time ever, penetration actually feels good, something I thought I would never get to experience and something I could not even imagine before. I found my G-spot recently and have been feeling such intense pleasure overload that we have to take it easy some nights. :) The remaining 5% of my pain comes from a bit of scar tissue from the silver nitrate burning I mentioned in my last post - I may be able to have it surgically removed if it bothers me enough.
So how did this incredible change come about? It was really a combination of things, but mostly it's the story of a wonderfully gifted naturopath who helped me finally figure out what was wrong with my body, and a graduate student in Australia.
After realizing my estrogen levels were sub-menopausal, my naturopath started on an estrogen cream therapy, 1g of estradiol per day, compounded specifically for me and applied vaginally. The first time I put it on, I almost passed out from the pain, but I committed to doing it for a whole week before giving up. By the end of the week, the pain had subsided enough that I thought I could try for another week. And by the end of the month, the raw, blood-red vulvar tissue had become soft, pink, and receptive. I couldn't believe it. I also started feeling much more interested in sex, which was a nice surprise for my husband!
At the same time, however, I went through a grieving process that I had suffered so much for so long, and it could have all been solved for me by a simple cream, if I had only known about it before. Here's where the Australian graduate student comes in. While browsing the website of the National Vulvodynia Association, I came across a study called Revive, which provided the emotional healing and relationship rebuilding that my husband and I both needed. Revive is a web-based treatment program designed specifically to assist women with sexual dysfunction, and it involves written/communication and physical/sensory exercises for both partners. Lisa Jones is the visionary behind this program, and I am so grateful for her work developing it as well as for her support and encouragement throughout. I highly recommend it for anyone struggling with painful sex.
Then, with both physical and emotional healing happening, my husband and I decided to build a website to help others like me find answers faster and reduce their suffering, perhaps by many years! It's called CureTogether, and it brings patients and researchers together to find cures for chronic conditions. People can post and review resources that have worked for them, and eventually we will be able to make discoveries and connect people with similar health profiles so that they can learn from each other and feel better sooner.
I'm a living example that it is possible to heal and live almost pain-free! Thanks so much to Body Chronic for providing a forum for us to share our stories - it's so important for us to learn from each other, and if we all work together, we can help ease pain and suffering for the millions of us out there with vulvodynia.
Wishing you strength and perseverance on your own road to healing. Alexandra
---------- If you are interested in telling your story or developing an interconnection between chronic pain and chronic illness and outside forces or influences, please e-mail me at thebodychronic@gmail.com.
People often remark that I'm pretty lucky. Luck is only important in so far as getting the chance to sell yourself at the right moment. After that, you've got to have talent and know how to use it.-Frank Sinatra
Quinn is the author of Life With Vulvodynia. She has inspired me with her quest to make her workplace more accommodating of her chronic pain and I asked her to share her story here. Her site is hosting a live online support group on Thursday, July 17 at 8 p.m. EST. Be sure to check it out.
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Two years ago, I started my first adult job.I had to dress up, I had to show up on time, and I had to work at a desk all day.I had no idea how much this exciting lifestyle change would exacerbate my condition.
I have vulvodynia, pudendal neuralgia and the occasional bout of vulvar vestibulitis.I don’t really have a “body chronic,” it’s really more of a “vagina chronic.”
Sitting has become my enemy.I absolutely cannot sit in a normal chair for more than two hours without beginning to flare.My biggest problem is pudendal neuralgia, which is commonly described as pain with sitting.Unfortunately the pain doesn’t stop once you get off your butt.On the contrary, that pain can stay with me for weeks.
It became impossible for me to function at my desk job.I needed to make some changes fast, but I didn’t want to draw any negative attention to myself.I tried a number of cushions and doughnuts, but they made no difference.I had to do something drastic.
My mother suggested I try a kneeling chair.She thought it would help alleviate the pressure on my inflamed nerve and allow me to continue to work at my desk.Before I made the purchase, I wanted to know if that kind of chair would make a difference in my pain.I called my pelvic pain specialist, but he had never had a patient use one.
I then turned to the internet and consulted pudendal.info.This is a wonderful resource for women with pudendal neuralgia and I recommend that women who have been diagnosed with vulvodynia to take a look and learn the facts about this condition.It could be the ultimate source of your pain.
There was an entire section on seating and I learned that a number of people endorsed the kneeling chair.I decided to give it a shot, but I didn’t know how I was going to pay for it.
Very timidly, I approached my boss and asked him if he would finance the purchase of a kneeling chair for me.I explained that I had a chronic pain condition that was aggravated by sitting and that I needed an alternative.
He told me to contact the Disabilities Service Office (DSO) and see if there was funding available for the purchase of special needs equipment.
I work for a very large university that is expected to be an equal opportunity employer.I was intimidated by the thought of navigating the vast bureaucracy, so at least for the time being, I decided it would be best for me to buy the chair, and find out if I could be reimbursed later.
The chair helped, but there was still a limit to how long I could use it.But it was certainly better than nothing.That is, until it broke.
One day, I was leaning to pick up something on the floor and I heard a crack.The kneeling pad broke in half.On top of being a blow to my ego, the broken chair presented a very serious problem.I didn’t have a way to work at my desk.
I started kneeling on a regular desk chair and standing bent over my desk.It was miserable.I had to find a better way to function in the office.
I contacted the Disabilities Service Office and asked for advice.I was told to have an ergonomic evaluation to determine my office needs.The gentleman who preformed the evaluation was very sympathetic and recommended a height adjustable workstation.That sounded perfect.I could then alternate between sitting and standing to take pressure off my troublesome nerve.
When I followed up with the Disabilities Service Office, I learned that it was my boss’s responsibility to finance the purchase of special needs equipment.I was told that he should have paid for the chair and he must pay for the new workstation.
Apparently, the Disabilities Service Office acts as an enforcer.If an employer is reluctant to comply, they function as an employee liaison to inform the employer of his obligations.
I have a big strike against me having a noticeable chronic health condition.When I have a serious flare, I may have to miss time at work in order to see my specialist.I always bring a note, but I have been told on more than one occasion that my absences are understandably problematic.If I’m not at work, I can’t do my job.Naturally this is a frustrating for an employer.
I didn’t want to make any waves or ruffle any feathers.
Nervously, I asked my boss if he would support the purchase of a height adjustable workstation.I showed him a printout with a picture and the price.He asked again if the Disabilities Service Office would pay for it and, very softly, I told him no.I had no desire to tell him that he was expected to pay, and fortunately, I didn’t have to.
After considering the price he said, “if it was going to cost $3,000, I would say no, but because it’s just $300, that’s ok.”
I felt incredibly relieved.After paying almost $300 for the kneeling chair, I didn’t want to have to purchase the workstation as well.My contact at the Disabilities Service Office strongly encouraged me to pursue a refund on the chair, but I think I need to choose my battles.
I feel like I’ve won and I don’t want to fight any more.
As women with chronic pain it is important to know that we do have rights, but it is also important to realize that exercising those rights can cause an antagonistic relationship with your employer.Despite the laws in place to support our needs, it’s very easy to work around those laws to find ways to fire a difficult employee.
I’m extremely fortunate to work where I do, and to have a boss with some amount of compassion.Please don’t interpret my story as a call to arms.I’m not encouraging all women to go out and demand better work equipment.I do, however, want you to know that you have options, and it is possible to make your work environment physically tolerable.
At the spa, the signature treatment will be a $150 gynecological exam — in which a client contracts her pelvic muscles around Dr. Romanzi’s fingers — to determine by feel whether muscle tone is weak, moderate or strong.
And the treatment goes on:
Dr. Romanzi likes to call the vaginal workouts she prescribes “personal training.” Clients could also use an in-office electrostimulation machine to improve pelvic muscle tone or buy a device for home use. Dr. Romanzi said that such treatments are intended to improve bladder control; she said pelvic training may also lead to more intense orgasms.
This sounds a lot like my physical therapy to me.
I disagree with this statement wholeheartedly:
The advent of the pelvic spa, however, takes body fixation to a new level, furthering the idea that there is no female body part that cannot be tightened, plumped, trimmed or pruned.
And instead I agree with the doctor:
Dr. Romanzi said her goal was to teach women how to properly perform Kegel exercises, intended to strengthen the sling-shaped muscle that supports the bladder, vagina and rectum. Gynecologists sometimes suggest such pelvic physiotherapy for minor vaginal laxity after childbirth or for mild urinary incontinence.
But Dr. Romanzi believes all women might benefit from such exercises.
How true!
I believe the main focus of the project is diminished with this part, however:
The spa will also offer cosmetic laser treatments intended to tighten the skin of the vulva in post-menopausal women.
“The outer layer can become almost scrotal, very wrinkly and lax,” Dr. Romanzi said.
She treats pelvic skin using a combined laser and radio frequency device that is designed for facial skin and has not been studied for safety and efficacy when used on the vulva, she said. But she said the laser does not penetrate deeply enough to affect internal organs like ovaries.
See, that's where the line should be drawn--all women should have a pelvic health plan, but changes for cosmetic purposes only should be discouraged.
So I guess it's not a good thing in its entirety. As many things go, there are good parts and bad parts, and we have to wait and see whether the good outweighs the bad. But I'll welcome the advent of new thinking and hope that it leads to a more open and welcoming environment for women going through pelvic floor issues.
New ideas come into this world somewhat like falling meteors, with a flash and an explosion, and perhaps somebody’s castle-roof perforated.Sarah Bernhardt
I meant to put this up on Friday, but the holiday really messed with my internal calendar. In any event, it is with great pride to let you know that I am a featured guest blogger on Fighting Fatigue. You may (and well should) have read Fighting Fatigue's owner, Sandy's post on Friday here on TBC. I was featured on her blog on Friday right here.
Also, as a head's up, look for a great piece from Quinn at Life With Vulvodynia on Tuesday about work accommodations and chronic pain.
Today's guest blog is from Sandy, author of the site Fighting Fatigue. More is about her at the bottom of this post. ---------------------------------
When I first became severely ill with ME/CFS, I was only 21 - that was 18 years ago. Back then there was very little information available on ME/CFS and I was fortunate to be diagnosed by the second doctor I saw for my symptoms. The problem was he lost his medical license due to insurance fraud and I had to find a new doctor to treat my illness. That is when I started on the long and frustrating search for a doctor who believed I was truly ill.
While I suffered for many years, shed a lot of tears, and received a lot of really dumb answers from supposedly "intelligent" doctors, I always knew that I was truly ill. I think that is the important thing for undiagnosed patients to remember. Never forget what you truly believe and always follow your gut. I would have times where I would think that maybe it was just depression or maybe it was just from being overworked, but I continued to fight back and say that wasn't it. My instinct and what my body was telling me always won out over what the doctors were telling me.
It seemed like once I was diagnosed with one chronic illness, the ball started rolling and more health issues followed. Over the last 18 years I have been diagnosed with Fibromyalgia, Interstitial Cystitis, and Benign Essential Tremor. I have also had two foot surgeries for tarsal tunnel and both hands operated on for carpal tunnel. It has been a long uphill battle but I never give up. I refuse to let a doctor or anyone tell me what I have experienced everyday for half of my life is not real. I do have times where I get depressed but I always know that I was chosen for a special purpose. God wouldn't lay all of this on one person if he didn't feel I couldn't use it in some way. That is why a little over two years ago I started my FightingFatigue website to offer support, my personal journey, and the latest information available on ME/CFS, Fibromyalgia and Interstitial Cystitis.
Besides believing in what your body is telling you, it is also wise for chronically ill patients to learn as much about their illness as possible. It's okay if you know more than your doctor does about what's going on with you. Be willing to fight and don't just accept your illness. You have to learn to live with it but it doesn't mean that your illness has to define who you are. Always know that no matter how bad it seems, there is a light at the end of the tunnel if you just look for it. Have faith, pray a lot and reach out to others for support who understand what you are going through.
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Sandy Robinson is a stay-at-home disabled mom who has spent the past two years faithfully writing about Chronic Fatigue Syndrome, Fibromyalgia, and Interstitial Cystitis - illnesses she has suffered from for almost 20 years. Sandy is the author of the popular website, Fighting Fatigue, and is also the author of two other health blogs: Chronic Health Blog & IC Disease. One of Sandy's goals through her Fighting Fatigue website is to let people know that being physically disabled doesn't mean that life has to end. She continues to strive and learn everyday new ways to deal with her illness, enjoy life, and share what she has learned with others.
So I take pleasure in the details. You know... a quarter-pounder with cheese, those are good, the sky about ten minutes before it starts to rain, the moment where your laughter become a cackle... and I, I sit back and I smoke my Camel Straights and I ride my own melt.-Ethan Hawke as Troy Dyer, Reality Bites
The lovely owner of Life with Vulvodynia has started an online support group for those of us with vulvodynia. The first "meeting" (chat room) is Thursday, July 17 at 8 p.m. EST. Check it out here.
A new study shows that my Inflammation Theory is more credible than ever now.
DeLano and his collaborator, Geert Schmid-Schonbein, a professor of bioengineering at UCSD, have been working with a widely used laboratory model of disease, a rat bred to have high blood pressure.
They have found that proteases, whose function is to clear away molecular debris, can go awry and split apart a number of different cell wall receptors. If insulin receptors are damaged, normal metabolism of glucose is not possible, and diabetes can be the result. Proteases can also damage receptors that are vital for the functioning of infection-fighting leukocytes.
And there's more...
The researchers also found that protein receptors on the surface of cells are clipped off as the rats develop high blood pressure. "Many receptors in blood vessels cause them to relax," DeLano said. "Many proteases we see in the animals cleave receptors responsible for relaxation." Giving the rats doxycycline, an antibiotic that is also a protease inhibitor, brought down their blood pressure and restored normal immune system function.
What does this all mean?
"This is really an important observation," said H. Glenn Bohlen, a professor of cellular and integrative physiology at Indiana University Medical School, who wrote an accompanying editorial. "It ties in information that high blood pressure and insulin resistance have the same cause, damage to receptors."
And the real kicker:
The newly reported studies might also help explain why antioxidants such as vitamins C and E help against inflammation, he said.
"The next approach probably would be to treat an inflammatory state," Bohlen said. "There is something going on that we can interact with. There are many commercially available methods for blocking proteases."
In addition to antibiotics such as doxycycline, drugs such as ACE inhibitors are protease inhibitors, DeLano said. Protease inhibitors are also used to control HIV, the virus that causes AIDS.
The state of health care in this nation is abysmal at best. Our older citizens can't get basic health care and have to choose between eating and taking medecine. Those with chronic illness go ignored and untreated. And now this...this shocking evidence of the mistreatment of the mentally ill.
As many of you know, I'm a big mental health advocate. I believe in the mind-body connection, but more importantly I know firsthand what a mind gone awry can do to your life. So it is even more staggering for me to see this: a woman ignored and left to die in a hospital waiting room.
Of course I don't know the background or the setting really, but the story is upsetting. More likely than not, this was the only option this woman had--and she paid for it with her life.
Say what you may about socialized medecine, but people with socialized medecine don't die in waiting rooms.
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Chronic Glossary
Note: The information on this site is intended to create a support network amongst those living with chronic illness and/or pain and their loved ones and friends. It is not meant to be nor should it be used as an alternative to medical advice.
celiac disease--Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, and barley. chronic fatigue syndrome----CFIDS is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period.
chronic headaches/migraines--By definition, chronic daily headaches must occur at least 15 days a month, for more than three months. The signs and symptoms vary depending on the specific subtype: chronic migraines, chronic tension-type headache, new daily persistent headache and hemicrania continuua. fibromialgia-- Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day. Common signs and symptoms include:widespread pain, fatigue and sleep disturbances,irritable bowel syndrome (IBS), headaches and facial pain, heightened sensitivity. It's common for people with fibromyalgia to report being sensitive to odors, noises, bright lights and touch.
insulin resistance--Insulin resistance and pre-diabetes usually have no symptoms. You may have one or both conditions for several years without noticing anything. If you have a severe form of insulin resistance, you may get dark patches of skin, usually on the back of your neck. Sometimes people get a dark ring around their neck. Other possible sites for these dark patches include elbows, knees, knuckles, and armpits. This condition is called acanthosis nigricans.
interstitial cystitis/painful bladder syndrome--Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. Symptoms may include an urgent need to urinate (urgency), a frequent need to urinate (frequency), or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties. Women's symptoms often get worse during menstruation. They may sometimes experience pain with vaginal intercourse.
irritable bowel syndrome --Irritable bowel syndrome is a disorder characterized most commonly by cramping, abdominal pain, bloating, constipation, and diarrhea. IBS causes a great deal of discomfort and distress, but it does not permanently harm the intestines and does not lead to a serious disease, such as cancer. Most people can control their symptoms with diet, stress management, and prescribed medications. For some people, however, IBS can be disabling. They may be unable to work, attend social events, or even travel short distances. pelvic floor dysfunction--Pelvic floor dysfunction, or obstructed defecation, results when the external anal sphincter and/or puborectalis muscles do not relax appropriately when defecation is initiated. People with pelvic floor dysfunction strain excessively in a feeble attempt to eliminate stool from the rectum.
polycystic ovarian syndrome-- If you have polycystic ovary disease, you are likely to have some of the following symptoms: Abnormal, irregular, or very light or infrequent menstrual periods; Absent periods, usually (but not always) after having one or more normal menstrual periods during puberty (secondary amenorrhea); Acne that gets worse; Decreased breast size; Development of male sex characteristics (virilization), such as increased body hair, facial hair, a deepening of the voice, male-pattern baldness, and enlargement of the clitorus. Diabete; Increased hair growth; body hair may be in a male pattern; Infertility; Poor response to the hormone, insulin (insulin resistance), leading to a build-up of insulin in the blood; Weight gain.
vulvodynia--The International Society for the Study of Vulvovaginal Disease (ISSVD) defines Vulvodynia as chronic vulvar discomfort or pain, characterized by burning, stinging, irritation or rawness of the female genitalia in cases in which there is no infection or skin disease of the vulva or vagina causing these symptoms. Burning sensations are the most common, but the type and severity of symptoms are highly individualized. Pain may be constant or intermittent, localized or diffuse.
