Post # 1
I had a horrible bladder infection early this year which my body has never recovered from. While I’m still waiting on a diagnosis of Interstitial Cystitis, which I’m pretty sure is almost a given, I saw a vulvar specialist in the meantime, who has diagnosed me with vulvodynia.
Anyone else here suffering from that, and if so, how do you cope with it? She said it’s treatable, but the treatments are expensive and not covered by our health care system in Ontario. They are also not guaranteed to work. I’m almost afraid to try them for fear they won’t work and I’ll be out thousands of dollars.
Right now I’m coping quite well. I still work five days a week even when I can’t sit. I still drive, I still go places, enjoy vacations and sporting events. The four things I cannot do are 1) swim in a chlorinated pool 2) have sex (more than once a month because any more than that irritates like crazy) 3) wear jeans and 4) dance.
Apparently vulvodynia is very common and people just don’t talk about it. Is there anyone here who knows what I’m going through?
Post # 3
@childofthe1980s: I’ve never even heard of it. Wow, that sounds pretty poopy. 🙁
Post # 4
I’m sorry for your health problems. I have IC as well. The Elmiron helps immensely.
Post # 5
For the lazy, this is the wikipedia article.
“Vulvodynia is a chronic pain syndrome that affects the vulvar area and often occurs without an identifiable cause or visible pathology”
I’m really sorry to hear you’re diagnosed with this… it sounds really, really awful. Some of the causes are scary, too. It can also be a masking diagnosis that is really being caused by something else, so I’d really investigate this or maybe get a second opinion to be sure.
Treatment seems pretty non invasive and the surgery treatment has a high rate of success, so these are all good things!
I hope you find something that works for you, and I’m sending you all the well wishes I can muster.
- Over the Counter Care: Wearing cotton underwear (no synthetics); avoidance of vulvar irritants (douching, shampoos, perfumes, laundry detergents); gently wash the vaginal area and labia with cool water only – using a washcloth is most effective – but do not use soap; cotton menstrual pads; rinsing and patting dry the vulva after urination; using a pad when sitting to alleviate pressure.
- Lubrication: (for intercourse or used daily to minimize irritation) If you have problems with yeast, or are worried you will, avoid lubricants with glycerine in them, which acts like a sugar and will only add to your problems. Neem oil is a good topical treatment for irritation that is also anti-fungal so very safe if you are prone to yeast, and water-based lubricant are often suggested by doctors. Vitamin E and olive oil can also create bacterial growth so avoid using them topically.
- Diet: Following a low-oxalate diet may help those whose urine oxalate levels are high and may be causing or exacerbating irritation. The level of oxalates can be tested by taking a 24-hour urine sample. Those following a low-oxalate diet often take a calcium citrate supplement. There is no evidence that this diet helps sufferers with normal oxalate levels in their urine.
- Alternatives to Penetration: Sufferers are often encouraged to explore sexual activity besides penetrative intercourse, which is often a major source of pain. Patients may seek the assistance of a sex therapist to learn specific techniques and ways to maintain a positive image of sexual intimacy and one’s body.
- Education and accurate information about Vestibulodynia: Gynaecologist-led educational seminars delivered in a group format have a significant positive impact on psychological symptoms and sexual functioning in women who suffer from Provoked (caused by a stimulus such as touch or sexual activity) Vestibulodynia.
- Medications: Patients have found variable success using topical creams and gels including estrogen and/or testosterone, often specially made through a compounding pharmacy; oral medicines including testosterone, antidepressants also used for pain disorders (e.g., nortriptyline, amitriptyline), and anti-anxiety drugs; and injectable medications including anesthetics, estrogens, tricyclic antidepressants compounded into a topical form or systemic, local steroids.
- Biofeedback, Physical Therapy and Relaxation: Biofeedback, often done by physical therapists, involves inserting a vaginal sensor to get a sense of the strength of the muscles and help a patient get greater control of her muscles to feel the difference between contraction and relaxation. Sessions are linked with at-home recommendations including often Kegel exercises (e.g., hold for 9 seconds, relax for 30 for 10–15 sets) and relaxation (breathing deep into the gut). Other physical therapy involves direct manipulation of the muscles; the therapist may go inside the vagina and physically press on and stretch the muscles. (One may practice stretching along with Kegel’s at home using a dilation kit or series of different size dildos. This is a common treatment for those suffering primarily from vaginismus, but may also help individuals with vaginismus that results from and worsens preexisting pain.) Other therapists encourage strengthening one’s core muscles, believing that the pelvic region overcompensates for the work the core muscles should be doing, causing strain and pain.
- Injection: This may be performed under CT, flurosocopy/C-arm or ultrasound guidance where the pudendal nerve is identified in its canal (where it is commonly compressed). Usually cortisone and local anaesthetic is injected and in rare cases, the nerve may be destroyed (ablated), if the pain is severe and unrelenting. In the latter instance, the trade off is permanent vulval numbness.
- Surgery: Vestibulectomy. During a vestibulectomy, the innervated fibers are excised. A vaginal extension may be performed, in which vaginal tissue is pulled forward and sewn in place of the removed skin. The success rate of a vestibulectomy varies from a low of 60% to as high as 93%. There are over 20 studies citing a success rate greater than 80%.”
Post # 6
@childofthe1980s: I have it. Haven’t found any good ways to treat it, either. My OBGYN switched me from the Depo shot to oral BC because she said the estrogen would help. I’ve heard topical estrogen cream can be helpful, but haven’t tried it myself.
I also have numbing ointment to use during sex, but honestly it’s easier and less painful to just find alternatives to penetration. Of course, I have deep pain from endometriosis in addition to the shallow pain, so it’s doubly painful for me.
I only use Dove soap because any other kind can be irritating.
Post # 7
Hi, I had what the gyno suspected was vulvodynia or something similar (it went away after a few months of treatment, so may not have been vulvodynia – but the lack of cause and symptoms were the same).
For a while, it hurt to walk. I remember wearing skirts in tempertures below freezing, as pants or pantihose were too uncomfortable. I personally found changing my underwear multiple times a day was really helpful. And I totally get you on the jeans thing – I can finally wear them again, but never for 2 days in a row. I also found a painkiller helpful if I knew I was going to do a lot of walking that day.
I am really, really sorry you have to go through this. 🙁
Post # 8
I just wanted to post a positive story for you because I know that the thought of IC and related issues can absolutely be depressing and change your whole world.
I had a bladder infection that affected me for ~8-12 months afterward and no one could figure out what was wrong with me. Even after the infection was “gone,” I continued to have frequency, abdominal pain, and pain when urinating. I was a senior in college and was unable to enjoy myself, sit comfortably through class, be intimate, etc. I was tested for millions of things to no avail, and I finally stumbled on the IC network site, and after reading a few things, it seemed that was what I had. I was pretty constantly reading the site and becoming more and more depressed about my situation. I booked appointments with two different urologists who didn’t help much honestly.
No one diagnosed me with interstitial cystitis, which I don’t know if I have to this day and am in remission or if I just did not have it. Still, 3 years later, I am generally symptom free and have had two bladder infections in those 3 years that have not affected me long term like the last.
One thing that really helped me was doing the IC diet, pretty much religiously. I stopped consuming caffeine and alcohol and didn’t eat chocolate or tomatoes. It was horrible but those things really do affect your bladder. Per my urologist’s suggestion, I started taking supplements to make sure that I am “regular,” because having any…thing… in your bowels can irritate your bladder depending on how your body is situated. The urologist put me on an antibiotic for I believe 60 days, and when that was done, I also had a prescription for the antibiotic that I usually take for UTIs and would take one pill after doing anything sexual so that I wouldn’t get a UTI during this time. Somewhere along the way my symptoms improved.
I can’t speak to the vulvodynia, but I just wanted to let you know that I do understand what its like to suffer from something like this, and I hope that you can keep hope that one day you will heal or at least find a treatment that will make you feel better. Feel free to PM me if you have any questions.
Post # 9
Vulvodynia is a pretty broad diagnosis, so what I have been through may be different than you. What I had was chronic itching with no infection- nothing. I was constantly put on YI treatments. The doctor would come in with test results saying they were negative, but they would prescribe it to me anyway.
Eventually, a doctor told me about a low oxalate diet, which completely cured all my symptoms.
There are pH soaps you can get from shoppers. I use provacare (i think it’s called that) we use non-latex condoms, and glycerin-free lube. Anything I can do to be non irritating- I use it.
It is reallllly hard emotionally to deal with. I wish you all the best. Feel free to pm me
Post # 10
I was diagonsed three months ago and had a partial vulvectomy last month…this is after two years of excruciating pain during intercourse. About eighteen months ago, I had to tell my SO that I just couldn’t bear the pain anymore. Hopefully, this surgery has worked…One more week until I can “take a test drive” and see.
Post # 10
MrsMeowton: How are you doing now? The surgery scares me!