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**KellyL** · 04-11-2003, 08:11 AM

Hi...I have both IC and Vulvodynia, so it's definitely a possibility that you might have both. I was treated for vulvodynia first and then referred to a urologist by my gynecologist. They work together in some ways and share many patients. Do you see both types of doctors?

**shelly1** · 04-11-2003, 10:11 AM

Not yet Kelly, but I'm sure thats the next step. We just moved here last summer so I'm "collecting" new Doctors! So far I have a Heart Doc, and Internist and the Uro. Spose I may as well get a gyno too. Darn town is so small, there aren't too many to choose from!

**KellyL** · 04-11-2003, 11:30 AM

Do you live in Michigan? I thought I noticed on your post. You might have some good luck here.

**shelly1** · 04-12-2003, 12:07 AM

Yes, I'm in East Tawas. Was in Clarkston. I know there are some good Doc's down there but its too far to go all the time. Especially since they close some the the rest stops all the time!! I may end up needing to go to Saginaw though.

I had to stop sitting on my home made cushion now, cuz it messed up my back! ugh! I'll have to order the one from ICN.

Do you have trouble sitting because of the Vulvodynia? What do you do for it?

**KellyL** · 04-15-2003, 12:27 PM

Ok, you are in a small area! I'm in Lansing, so I thought that might work. I don't have problems sitting, unless I'm in a flare, so I'm not sure what to suggest. My meds include: Elmiron and Detrol LA -- very good, lasts 24 hours and really helps with the frequent urination, and then my gyn prescribes Desipramine. It's an anti-depressant for the pain. We've tried a lot of different ones that are mentioned on the site, but this is one that has helped with my pain, including intercourse.
Good luck!

**FredR** · 04-15-2003, 02:57 PM

Check the Cystaq web site on Vulvodynia, Check the clinical trial that shows that Cystaq will help the symptoms and the pain.

**Julie Smith** · 04-15-2003, 03:31 PM

Sitting is the absolute worst pain for me and you are the first person I read who also has. I would rather stand and lie down. This disease has drained me, the pain, frustration, loneliness, never ending trips to potty. I've been away from work for 3 months and my life is gone as I know it. Thanks for sharing and allowing me to blow off some steam.
Jules

banghead

**poetgirl** · 04-16-2003, 02:06 AM

I have both IC and VV. It is hard sometimes to tell where the discomfort is originating from (or if it's a combination of both flaring up) because the discomfort radiates throughout the entire area.

I bought the IC cushion for my office chair at home, and it does seem to help the VV-based discomfort some. My office chair at work actually isn't too bad -- the rest of the time, I try to find reasons to get up and walk around. Sitting for long periods of time tends to put too much pressure on the vulva, causing the rawness and burning to flare up more. Walking helps relieve some of those symptoms, especially the associated spasms that cause urgency. It seems to help the muscles relax.

I use Urocit-K to reduce urine acidity -- that has helped reduce the burning/raw feeling in the vulvar region a lot. I'll rinse off with cool water if I do feel some burning and that helps too. I'm still trying approaches to see if I can get full relief.

**shelly1** · 04-16-2003, 02:47 AM

Thanks for the info. I'll read up on the meds you all suggested.

I ordered the cushion and a couple of the water bottles to wash off with. I found myself sitting all crunched up so could avoid the pain of sitting and now I have really messed up my back! haha If it ain't one thing, its another!

Julie...sorry to hear this is your problem too. Maybe you should try one of these cushions. Hope things get better for you soon. Feel free to blow off steam anytime you need too! Your among friends who understand what your going through.

Thanks!
shelly

**SunnyMcCall** · 05-07-2003, 09:19 AM

I am trying and have been trying for years to figure out what the hec I have. I have been to several doctors but have never had an particular or formal tests. Or "cure" for that matter.

I don't have trouble just "sitting" or have urgency or frequency (which look to be associated with IC?/)

Symtoms are as follows:

1) Painful sex, especially upon entering. It has always hurt with sex but different levels. The sex pattern is such that it hurts VERY bad when we (even with TONS of lubricant) start gets overridden by pleasure when I'm going to orgasm and then if I try to start having sex again or when he trys to pull out, it KILLS. The only sort of sex I can tolerate is non-friction kind, when he is deep inside me. Also, after I have sex and urinate it BURNS. Sometimes, but not frequently...my muscles inside start to bulge out, especially if I haven't orgasmed. most
2) Often, after I urinate, (BUT NOT ALWAYS) I have a pain that feels like a bladder infection (low grade)that passes within banghead 20 minutes. It only hurts AFTER I urinate, never before. Almost like it is triggered by going to the bathroom. I
don't feel that I go to the bathroom more than the average person and have absolutely
no urgency either. I typically get up once in the night to pee, but am not so great at stoping drinking 2 hours before bed and attributed to that. The pain I feel is not consistent however, except that it pretty much always hurts with intercourse.
I can remember have both these problems as young as early highschool (when i started the pill and having sex)
3) Discharge - Seems like I have it often.
Medications I'm taking:
-Birth control pills (Have been taking quite consistently since I was 15 and
I am now 30. Went off once or twice throughout the years.
-Prozac (Only been taking for 2 years and my symptoms have been there much
longer.)

Doctors:
I have been tested for Sexually transmitted diseases and nothing comes up. So has my
I have been tested for UTI infections and nothing comes up. The doctor
wasn't sure and sent me to Physical Therapy which hasn't helped.
The last time I went to the doctor they put a catheter in me and I had some
urine left in there that I didn't get rid of.
The thing is, I have been self-managing this for years but the SEX part has become a problem in my fiance and my relationship. I know I need to figure this out but it feels like such an uphill battle.
Are there certain tests you can get to be certain, you have one thing or another?

ANY ideas or help would be much appreciated!!
Thanks
Sunny
PS - A doctor at Stanford thought I might have, Pelvic Floor Tension Myalgia? I had been seeing a Physical Therapist for a few months but haven't seen any changes or do not feel confident that she "gets it".

**poetgirl** · 05-08-2003, 03:16 AM

Sunny,

It sounds like you have vulvodynia, possibly vulvar vestibulitis. Your symptoms sound very similar to what I have. Please ask your doctor (or get a second opinion) to examine you again, using the diagnostic approach for confirming vulvodynia or VV. My former gynecologist just thought I had vaginitis and prescribed a topical cream to deal with the irritation. That was about a year ago, after having intermittent symptoms for even longer than that. Had I been correctly diagnosed earlier, I might have had some remission in my symptoms by now.

Good luck.

**KellyL** · 05-08-2003, 09:31 AM

Sunny--Your symptoms do sound similar to mine, but more like vulvadynia. I've had both for 10 years and it's mostly manageable, but the sex has been the most problematic. For years, I've been taking a Vicodin about 1 hr pre-sex. This helps me to relax and helps pain-wise. My pain has been getting better with the use of desipramine. It's an anti-depressant and I've tried many others for pain. It's not a common one for vulvadynia, but I'm finding that sex is less painful and the pain doesn't last like it did before for 2-3 days. Hang in there and keep doing your research--the sex issue is definitely a hard one to deal with. I know my husband has really had a hard time dealing with it too.

**Kelly R.** · 05-19-2003, 08:52 AM

Sunny,
I highly agree with the others. You need to be evaluated by someone with expertise in vulvodyina. The National Vulvodynia Association can give you a referral. <http://www.nva.org/> There is a lot that can be done.

Once you get a diagnosis, and some treatment, there are ways to make "relations" easier. Position and lubrication make a big difference - without changing our approach to both of them, I don't think I'd be able to function, so to speak.

Hang in there - a good doc and some lifestyle changes can make all the difference in the world.

**Ginny Doll** · 06-02-2003, 12:55 PM

Hi. I can certinly relate to these comments as I have had vulvodynia and IC now for three years! Sitting is my biggest challenge. Too long and I am in a flare for sure. No jeans unless they are hanging low and loose. No crossed legs. I use the IC cushion and do best ehrn leaning a bit back, no frontal pressure. My pain is basically uretheral making intercourse impossible. Have to be creative! I take Elmiron , Ditropan XL, and neurtonin. The neurontin helps so much but leaves me with a very bad short term memory. Like I am trading my mind for my bladder most days. But the relief has been great. I am hoping someone has tried neurontin and found something even better for uretheral pain. Please share! I also take 10 mgs of oxycontin just at night before bed. Then I don't wake up in a flare and can sometimes sleep straight through the night. By night time I need something to take the edge off the pain. Seems the more I go, the more irritated the vv and IC become. I would even be willing to cut back on neurontin if I could find something else, another antidepressant for the pain. I had no luck with Elavil! Thanks for the ear and any advice! Hello to Teri, and Sue P, and Melanie! Hugs, Carolyn

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