Anyone stopped sex completely??

[momw/ic]

I was having almost continuous UTI's and always after sex I would get an infection no matter what we tried to prevent it. So...hubby and I decided together to stop sex and just see what happens. Immediately I started getting better and have not had a UTI since. So, my question is has anyone else tried this? I would love to try again but am scared to set off that cycle again. Hubby is ok with it but I just feel so guilty. Just wondered what other experiences you all have had.

:headbang:

[green_the_fish]

Well, I might not be the right person to answer this, since I'm too young for the sex stuff, but I have heard other members of the boards using antibiotics for your problem. They use them as a preventive medication. You could try asking your doc or uro about having low-dose antibiotics to take after you have sex. I remember when I had my cysto/hydro, they gave me those kinds of antibiotics to prevent a UTI, and they worked. I hope that a member who knows more about this subject can come along and help you out...

[vm]

I got UTIs after sex until I started taking one antibiotic pill afterwards. I haven't had a UTI in over a year now - and I was averaging 4 or 5 a year.

Prior to the antibiotic solution we were showering before and after, drinking water before and after, scrubbing up like surgeons going into surgery, etc. and none of it seemed to help.

[kmmk]

just curious...with your frequent urinary tract infections after sex..
did you have the urine actually tested and come back positive for bacteria?
a day or two after having sex i feel like i have a mild uti..but the dipstick says no bacteria..but positive for leukocytes..
so i guess there is inflammation..but no infection.
some part of me feels like there is some low level infection going undetected and causing the symptoms post sex.
uro says its urethritis/ urethral syndrome.
i think there is some bacteria that dr.s are not aware of or picking up yet..for many of us suffering with this.
just my feeling...knowing my body.

[vm]

Mine were actually cultured infections. At least one was pretty lowgrade, but they treated it anyway. The others were full blwon.

I have had the dipstick test miss a couple of my UTIs. The at home ones have never detected my UTIs - I would go on to have a culture done and lo and behold I did have a UTI.

I got to the point that when I was having my urine checked I always asked that they culture it even if the dipstick or under the microscope didn't show anything. Sometimes we have to have a culture to know for sure - that was the case for me.

Now there were times I just had a plain old yukky flare after sex, but I got to the point that I could pretty well tell the difference.

[kmmk]

was curious..what do you feel and where when in a flare..and how long does it last?
thanks alot ..
any responses appreciated.

[emilyrose197377]

I feel Like my bladder is on fire with a lot burning and stinging. My lower abdomen swells up and the muscles in my pelvic ache . I experience sharp stabbing pains in my pelvic area. I also feel like someone is pulling on my pelvic area .

[Leslye]

momw/ic, my questions are the same as kmmk? I have ALOT of problems in the Sex department, but I really like it:)lol so My husband & I have tried different things. Because if my Vulvadynia at times when my husband ejaculates the semen makes me feel like my vagina is literally on fire, like someone has just lit a match. Thank God this is not ALL the time. When this happens I have to go right into a bath. Alot of times after sex before we found several position that I can handle it felt like I had a UTI for days afterward. I have also found that the key with me is to RELAX. We use positions,K-y(not the warming) this tends to set me on fire also & not in a Good way.lol My gyno also gives me Lidocaine Jelly to use,this helps deaden the Uretha & some of the other very tender points. My husband also has to be very Slow & Gentle every time. If we tend to get A little rough boy I do pay for it. Positions Are Very Important!! Although this might not help for your peoblems as we are all different but I do Hope that something will work out. If you ever need to talk are have any more questions(that are maybe a little more detailed please feel free to im me or e-mail me) This does not mean that I can have sex all the time without a flare but it has cut down on the amount of flares & the Severity of them. Good Luck!

[kmmk]

do you feel anything in the vaginal area..inside?
alot of my discomfort feels like urethral and vaginal ..but not itching.
gyn checked and said no infection
i do feel like a stinging sensation in my urethra...on and off..
and even hypersenitivity in the clitoris. (geez...lol !)
whatever this is..it is awful..one day feels fine..some days feel bad..
even changes different times during the day.
and it doesnt seem to correlate to anything in particular .
have not had sex for over a week..
thanks for listening and responding.

[kmmk]

also..one more thing..if i am sitting and put pressure on the vulvar / urethra/ clitoris area...it hurts..
anyone else have this.?
does not feel like my bladder....feels lower down near the exits.

[Leslye]

YES, All of the things that you have metioned are my symptoms. It kind of feels like A REALLY BAD yeast infec. with NO itching. I have to wear my overalls & lounge pants.lol Lounge pants have become part of my everyday attire. When this first started I thought I had a yeast infec. used Monistat & vagina felt like I had just set it on fire. Because of the Vulvadynia, I am SOOOOO sensitive to EVERYTHING!! You are not alone there are alot of us in this web who suffer from the same symptoms. How long have you had IC? Not to be too graphic but when you have sex does it feel like He is hitting your bladder?

[kmmk]

i was totally fine until march 2005... believe it or not..i was not in a relationship and did not have sex for almost two years! no problems..no uti's...nothing at all.
then we had sex...very very intense sex i might add..lol.
i am very small..he is very big..lol.
two days later felt like a uti..went to dr..gave me cipro..after two days felt the same.
gave me bactrim..then i felt fine...
had a cervical polyp removed...and then resumed sex a while after...and sure enough like a day or two later..symptoms of mild uti returned..burning, frequency..discomfort.
like my urethra was sore and swollen.
during sex im fine for the most part..no pain..unless he goes really deep...and like i said..he is big and i am small.
sooo i thought i had another uti..but they said the urine dipstick was only showing trace bacteria..not a real uti..
gyn told me its like honeymoon cysititis and to take uristat.
but it seemed to keep happening...and finally all my drs taking my urines were saying they were normal and to see a urologist.
so i did..and she took my history and did an in office cysto and saw mild inflammation of my urethra consistent with non specific urethritis or urethral syndrome.
said antibiotics dont work for this..
to take uristat for it......
i went back one more time..and she said.come back in six months..
and to avoid acidic things.
i just never had this..and wonder why all of a sudden?
ive had sex before plenty of times and maybe would get an occasional uti..but not this . anyway..this is where im at...this sensitive urethra..sensitive clitioris.. sorry to be so graphic...and feels like a mild burning in the vagina.
i dont really take anything for it...not even the uristat...
just hoping it will go away eventually...just like it came on.
doc says it is very common in women..and can last months and months.
well..one day at a time.
thanks

[momw/ic]

To answer all of your questions:

Yes to the antibiotics. I have tried several different kinds for after sex - usually 3 doses and nothing has helped. I also took a new low dose antibiotic for about 3 months straight every day - also no luck. Hubby and I are like scrubbing in for surgery and that doesn't help. We have also tried NOT washing and that didn't help. Every position in the book and even some that probably aren't in the book - still to no avail. So, that's my story. My doc has worked with us also and it is frustrating for all of us. Hubby is extremely supportive and is probably bothered the least by this. On those RARE occasions I did not get an infection it would set off a flare that lasted usually weeks - never less that at least 2 weeks. I really just have been curious if others have had similar experiences. Thanks for your responses everyone!

[Yogajo37]

I can completely relate! I have IC and found out I also had vulvodynia and clitoradynia. Upon examination my doc found all my glands in my vagainal canal were also inflamed which is why when my boyfirend came or I got lubricated it felt like fire. In essence it was... the vaginal canal and clitoral/urethral area were so inflamed that it was like pouring acid on an open wound. I went without sex for 1 year. I have been in treatment for the last year and a half. First we startedwith Estrace cream and lidocane..ouch made it MUCH worse..although my (male) doc told me it was in my head...I now have a great doc...(yes a woman..but I believe men can be ok just not hat man!) Anyway my treat now consists of Traumeel injections. Traumeel is a hoeopathic med. (My doctor is an MD and uses this) I started with injections 1 time per week for 12 weeks then have progressed to shots 3 times a year. It is a g-d send. I actually had sex 3 time in one night. Now I will tell you.. I am just gettting over a UTI from sex. The first in 3 years. But we were very very acrobatic :biglaugh: and were not careful. Also, we use a ton of lubricant. But I use a completely natural on cause all the over the counter stuff make me burn. So fret not....you will be able to have sex.. you just have to find the right treatment. Also, (just thought of this) if I am bad on my IC diet I notice sex is uncomfortable as well. My vulvodynia./clitorodynia respone to diet as well...at least for me.

[kmmk]

yogajo..what does clitordynia feel like?
i have a weird sensation there ..like super sensitive.and it feels related to the urethra sensitivity as well..no surprise they are so close together.
sometimes even walking or sitting..or my pants annoy me there..
or even light touching..
anyway..glad you found things to help you...and hurrah for sex three times in a night..
i miss those days and nights..!
this is all new to me..and very depressing.......
hopefully one day my body will get back to normal..
one day at a time.
glad to hear there are others who have this too..
it is not all that common that i know of.
and i do know its not in my head!
thanks

[Yogajo37]

kmmk,
When my clitoradynia was flairing I could not even wear pants. My girlfriend who has IC/vuluadynia and Cd and I used to laugh because she would cut the crotch out of her tights she wore to work! Anyway, please realize that we all have these up and down days,weeks.....I am in a flair as we speak and majorly pisse about it but I only have so much control. There is a book out there my doc had me read...I will get you the name of it. It is about pain and sax. It talks about how when you have any type of pain or trauma during sex you get into a pain response cycle and we have to break it. In some ways it is like being post traumatic. I believe (my humble opinion only) that when I was able to say f--- it and take back my body and praise it for the good and bad my infections and flairs got less. I know my stress level directly affects all my stuff. As I re-read that it sounds corny but when I get down and angry I only get worse... I still am really mad that i have this crap but I only have 2 choices right? Anyway, I would be happy to chat more about other poeple strategies...we talk in the waiting room at the doc. Boy now thatis an X-rated scene :biglaugh: Joelle

[SrMaggie]

I've given up sex, but not because of IC. I'm a nun, so I don't even have to make a choice, now. After 33 years of not having it, I don't feel like I'm any less of a woman, less loving to those who need me. Ist's possible - I mean it doesn't kill you, alhtough it may fell that way. Have a blessed day.
maggie

[vm]

SrMaggie - I was just in NC for my grandmother's funeral. My uncle is a priest in Charlotte. Are you near there?

[MarthaF]

To those of you with urethral symptoms I suggest reading a post by Jill on here: http://www.ic-network.com/newsroom/796.html This was posted years ago and no one talks about it anymore, but it is possible to have infection in the paraurethral glands (female prostatitis). One doctor in NYC, Dr. Attila Toth, is using antibiotic injections directly into the urethra to treat these infections. It is possible that patients actually have an infection in the glands and are diagnosed with IC instead, or have both. Many of us are convinced "IC" is actually an infection but is not diagnosed because the culturing is not extensive enough. We are working on research to prove better culturing will find bacteria - it is just slow growing. A broth culture has been around for a hundred years but is not practiced because it is time-consuming and expensive.

We need to talk to doctors about the possibility of infection in the glands. (They won't listen to "IC" as an infection yet). After all males have infections in the the prostate and the female glands are very similar. There is very little information on the internet about the paraurethal glands and infection and Dr. Gittes has retired. We need to question the medical profession more about this diagnosis. "Urethritis" is too non-specific. There has to be a cause and infection makes the most sense. It can be diagnosed by an exam through for vagina for tenderness along the urethra.

Does this make sense to any of you?

Martha

[massagedoula]

When I went to my urogyno she ran her fingers along the paraurethra glands and there was no pain.
However I still do have problems with penatration. It is because of my pelvic floor muscles clenching up (possibly a reaction to early sexual abuse and years of very mean sexual partners), and then I conciously relax then and my husband waits. After I feel secure then I am able to have sex. i still get a flare afterwards, but I am fine during it unless he hits the bladder by mistake!

[Leigha]

I previously stopped all sexual activity due to the to the immediate uti problems that I got every single time. Then I put together a regimen that if I follow carefully saves me from the sex related utis. I hope its not too personal but maybe it can help someone.

You all probably know by now what those little antibacterial handi-wipes are. The kind you use at the urologists office when you are leaving a urine sample to clean the vaginal area before you peepee in the cup.

I have a couple of those stored away with the birth control, its really super simple. I swiftly clean the vaginal area and his area as well :lmao: (they are cold... its good for a laugh). We also use an extra sheet for our hands due to handling the birth control. It really only takes a moment. I make sure to drink a fair amount of water before hand and afterwords I make sure to use bathroom. Then I take one antibiotic pill. I now have my sex life back.
:woohoo:

It may seem like a lot but compared to not having sex, or having utis those few moments of disinfecting and water drinking is super simple. :)

One other thing I added recently are female condoms. They cover the urethral opening so there is no bacteria getting into my bladder from friction and no strange lube or spermicide ending up there either. Spermicide is my mortal enemy, big ouchies. I have not found them to be painful, if you can tolerate sex you can definitely tolerate female condoms. They are much more sensitive too and apparently safer then condoms. (Or so they say...)

[ICPrincess]

My fiancee and I use condoms so (knock on wood) so far so good. By having a barrier such as a condom, you might cut way down on the UTI's. Its been rough though because we had a very active sex life. Since this nightmare came on back In November of last year, we've had very little sex. I have been so afraid of the pain. Its awful feeling like this but when we do, its condoms. The pain is bad enough as it is. I think I would lose it if I had to deal with a UTI so Condoms it is for now. We use the ones WITHOUT Nonoxynol (that is irritating). We do other things but I miss the sex and whats even worse is that I loved it rough. I know that sounds terrible (lol) but for me, this really is a living hell because we loved to play games a little rough and pain I can handle to a degree but not this kind of crap....this stuff is not dungeons and dragons kind of pain. This is over the top awful. When they finally locate Bin Laden, they need to give him IC and then let's see how many more attacks we get here...lol....now thats suffering!

[Romans8:28]

Boy do I understand! The pain during sex used to be off the wall and tried so many things. At one point I said that isn't happening anymore! My husband also used condoms but after I got my own test strips I found that everytime I would go into infection. Besides all the sanitary things, I also take an antibiotic before and after now. I wash and use ice after too! We have also found that MSM gel from Jacob's lab has helped to restore out relationship! Some other things that we learned were causing me problems. One I have a latex allergy. Secondly we were using lidocaine. I seem to be allergic to the preservatives in it and would get much worse, once the numbness wore off!

[bjw712]

Leslye, I read your message regarding sex and the importance of various positions/ speed and found them to be possibly very useful. I am marrying soon and haven't been very successful with being intimate with my fiance' I am afraid that our relationship will eventually suffer. Don't get me wrong,...he is a great guy and has been there throughout my entire illness but once we get married I want nothing less but to keep him happy. What are some ways for me to overcome my insecurities regarding my inability to perform and do you have any personal stories you can share?

[Sherry5]

There are a lot of things you can try, as you can see, when you feel up to it. I am glad your husband is O.K. without sex. I hope you are making it up to him with lots of cuddling, and taking care of his sexual needs in other ways. This will go a long way in stemming any resentment that can build up when you go without sex for long periods of time.When he says he is O.K without sex, I am sure he means it, but there are things you can do tomake it easier on him.

I hope you find something that works for you eventually! Good Luck!

[Leslye]

bjw712, Sorry I am getting back to you so Late. I do not mind at all talking with you about this subject. I will help you with advice & ideas as much as I can. Before I start though Just a few questions. When you say that you have not been successful with with being intimate, is it because of the pain during sex? What are some of your problems & insecurities with sex? If you do'nt mind me asking?

[kmmk]

martha..
i agree with your theory of possibility of infected paraurethral glands.
that is mainly where my symptoms are..the urethra..and it gets very irritated after sex...usually a day or so after it flares and lasts a few days to a week!!!
geez!
anyone else have this?
i also read about this possibility of infection in skenes glands on a urology message board on the net.
i had been celibate for two years..no problems at all with urinary issues, burning etc.
then once i had sex..all of this flared up ...and continues whenever i have sex.
kind of depressing.
also makes it nearly impossible to have sex every day or so...if i am suffering from the first round!
feel like i need at least a week between to let my body recover.
anyone else feel like this?
my uro said i have urethritis / urethral syndrome..showed mild / benign inflammation.
thanks

[tawnhet]

I think I posted this on the wrong place last time--I'm new here.....

Anyways, I have been diagnosed with Vulvar Vestibulitis....anyone else have this?

[Briza]

Hi Tawnhet and Welcome!:hi:
A lot of us with IC also have some form of vulvodynia. I do.
This thread is kind of old. You can start your own thread by clicking on the vulvodynia forum, or any other forum you are interested in, and at the top of the list of threads click on New Thread and you can start your own if you want to. Of course older threads still have relative and valuable information, but sometimes it's good to start your own thread to get input on something specific that you want to know. Hope this helps!:)

[Fluffy2]

Kmmk- I think I have what you have. I kept having urethral discomfort every now and again (after sex mostly) but yet it wouldn't burn when I urinate. I always assumed it was my version of a UTI. In September I had a yeast infection and back again was the sore urethra/burning. In the past physicians would treat me with antibiotics without doing a urinalysis. Usually worked to get rid of it. Many times they would just do a dipstick test which indicated white blood cells. My doctor's replacement did do a urinalysis which was clear so she didn't treat me. I had been suffering with the symptoms for so long it started to feel normal to me. Not to mention my husband & I have gone almost 2 months without intercourse hoping this would pass. Finally a couple of weeks ago I went to a walk in clinic. The doctor there did the dipstick test to find red and white blood cells. Wierd. She started me on a week of macrobid. Yay! It started to get better after 3 or 4 days, but I finished the antibiotics Friday and today it hurt after I peed this morning and I feel some pressure. I am praying that it is gone. I have never had any bladder pain. I am going to the GP tomorrow to ask for a referral to a Urognecologist. Any thoughts from anyone?

[DoulaSue]

Hi, My major symptoms happened the morning after my husband and I had very intense sex. Actually, for a day or two leading up to it, my clitoris hurt so bad that I couldn't even touch it, it literally felt like it was cut (sorry, ewww). At the time, I also had a yeast infection. The next morning, I woke up urinating very bloody urine, I freaked thinking I had a bad UTI. For several weeks the whole area was uncomfortable, along with frequency and urgency, but most of the discomfort seemed to come from my urethra (no burning during peeing though). Fast forward, after 6 weeks I was just diagnosed with "mild" IC, put on Enablex, and my symptoms are SO much better, I actually feel normal again. A friend of mine works for a Uro/Gyno, she explained all of my symptoms to him, and he actually said that he would guess that it's an infection which has gone undiagnosed. At first, I had a hard time believing this, because 4 urine cultures came back negative for bacteria, plus I did take the 7 days of macrobid. He suggested 1 1/2 months of macrobid to kick out anything that might be left in there. So far, I haven't taken his advice because I'm feeling better.

We haven't given up sex, it doesn't hurt, but my urethra does feel inflamed afterward, and the next day as well. I actually think it has something to do with the Skene's gland (G spot). I think that touching the gspot is pretty much out of the question, now, LOL.

[Fluffy2]

So great great that you feel normal again. Isn't Enablex for overactive bladder?

For 2 years I have had these urethral occurences and about a year ago I noticed that I have urinary frequency 24/7. I usually have to pee at least once during the night which was never the case. I also play sports and excercise a lot and have experienced stress incontinence with high impact periodically. With this latest episode, I think I went too long without treatment and now it may take longer to get rid of this. Before I would see the doctor within a day or two of symptoms and it went away quick. It takes sometimes months to see a specialist here where I live so I hope I can find relief fast. I have to see the doctor this morning and will ask about Enablex.

[MarthaF]

There are many of us who think our bladder/urethral symptoms are due to infection - usually undiagnosed. The typical agar plate culture for 24 or 48 hours is not very extensive since some species of bacteria do not appear on agar or they are slow growing and take days to appear. There is a more extensive culture, called a broth culture, but labs do not know about or do this type. It is more time-consuming and labor-intensive and they the doctors do not know about it or realize that there is bacteria being missed. Unfortunately there is only one lab in the world that we know of that will do a broth culture - United Medical Lab in McLean, VA near DC. (703-356-4422) Any one can call and get instructions on how to submit a specimen. They will do a sensitivity test to tell which antibiotic is best. Usually treatment can take months since it is not a "typical" UTI in which a week of treatment is enough. There are high tech molecular tests under development, but not available, that will be able to find more bacteria. That is probably the wave of the future in testing since commercial labs are not going to do broth. You can ask your doctor to ask the lab to let the agar plate grow for several days and some types of bacteria may grow.

It is not well-known that the Skene's glands along the urethra can become infected. They are similar to the prostate in many ways. There is little information on these on the internet, although there is one interview on this site with a doctor who believed these glands could be infected. (See the interview with Dr. Reuben Gittes on "Female Prostatitis".) It hard, although not impossible, to culture these glands, but an exam can determine tenderness. Uro-gynecologists should know about them.

I have posted more about an infectious cause of chronic bladder symptoms under the thread, "Antibiotics". Many species of bacteria can cause bladder infections in some, but the testing is not geared to find them. The agar plate test looking for 100,000 colonies of E. coli is 50 years old and it is time for new methods of detection. Unfortunately one dose of antibiotic per day is not enough to get rid of an established infection. Feel free to email me for more information on this approach to diagnosis and treatment if you think you may have an undiagnosed infection.

Martha F (mfmidlo@aol.com)

[Fluffy2]

I do believe I have an undiagnosed infection but you would think certainly there would be some familiarity from doctors/urologists about these types of infections from experience. From that would they not know what best antibiotic to prescribe for these non-specific urethral symptoms. Are they common or rare?

And how do we prevent them again once we are predisposed to these types of occurences? Any thoughts?

Thanks for your informative reply as well!

[DoulaSue]

Now I'm wondering if I should actually make an appt. with the uro/gyno that my friend works for. Without even knowing me, he just listened to my symptoms and said that he would immediately treat with longer term antibiotics. I liked the Uro I went to, who diagnosed mild IC, but I gotta tell ya, my bladder does NOT hurt, all of the discomfort seems to have originated from, and continues to come from my urethra/skenes gland/clitoris area. However, the enablex really seems to have calmed down my symptoms, so possibly it is in my bladder, it's just so confusing!!!

Hubby and I fooled around yesterday, no pain or discomfort during, but once again, today my urethra area seems hypersensitive, to the point of annoyance.

I just feel like something else might be going on, and that it's related to sex. All of this began with sex, and my symptoms which calm down when husband is out of town seem to come right back after we are together.

[Fluffy2]

I am finally referred to a Urologist!! The doctor I saw yesterday said that the Macrobid works for bladder infections and would likely not be the right antibiotic to treat any infection of the urethra. My swab was negative for everything(chlamydia, gonorrhea, vaginosis, yeast etc.etc) so at least now I feel we are starting to rule many things out. This is when you realize that many doctors are real die-hard scientists and need to have concrete evidence before they classify things. I started on Cipro yesterday and am already feeling better. This doctor seemed more informed about my symptoms are confirmed that they are in keeping with IC possibly.

I know it could be worse, but I keep wondering if I will have to deal with this for the rest of my life. I have already been on so many antibiotics lately and that scares me. It has taken a toll on my marriage as my husband can be a little childish when it comes to sex unfortunately although he tries to be patient. We fight and I try to educate him about this but it is hard when even you don't know that much yet. And I don't need to have sex near as frequently as he does. I like sex but I could go 2-3 weeks without it just fine. He hates that fact( but don't most men). My sister is a Clinical Sexologist and I know for a fact that generally speaking men and women do not share the same desire levels. Men are goal oriented and women are more in for the journey. Sorry to get off topic- but it kind of plays a role with all of this.

[goldilocks]

I can relate with all you guys. I'm 26 and have been suffering with IC for about 2 years now. Before all these health problems occured my fiance` and i used to have an awesome sex life. Over and over again and i would not get sore. Boy well thing have changed since then. When we do risk having sex i usually always get a yeast infection. on top of that the pain durring sex is horrible, alot of the time i just bite my lips and and hope he will soon be relieved so we can stop.

i don't think i can even remember the last time i enjoyed it through the whole session. Many times it's been so unbarable i had to stop and communicated why, with my fiance'. He is supportive but at the same time he get's really frustrated. He has a strong sex drive, and worries if we cant' have sex how will i ever get pregnant. He put's alot of stress on me at times because of this battle with sex.

we try many positions ,lubs ect. some days it doesn't matter what we try i am just to inflamed. Other times i'm confussed :confused: why it hurts so much. I going to try taking pain killers before hand but why does something so special like making love have to hurt so bad? My partner has complained he misses that closeness we used to share that bond durring sex. I miss it too. Finially after a few months last week we attempted the good deed. at first it was great but before i knew it i felt like someone was shoving a hot poker up there. After i didn't feel to uncomptorable until the next day i was in a flare with the heating pad. The heating pad has become my utimate best friend. At least reading through all these entries i know i'm not alone. I'm going to see my Uro next week so maybe he can give me some advice or phiscribe lidocaine jelly. Or anything that could help. Best of luck to you guys, and if you have any suggestions fell free to respond back!

[Fluffy2]

Goldilocks- it is validating to hear other stories for sure. It may help to try to change his mind on what sex really is. Harder than it sounds I know.He sounds like he is trying hard like my husband is. My sister (the sexologist) has a couple of patients with IC and she understands how difficult it is for them to enjoy sex once they associate it with pain and misery. Sometimes she recommends trying different approaches like between the thighs instead of intercourse. Many women are afraid of receiving oral sex for fear of infection but she said to try using cellophane as a barrier. Definitely work with the urologist about how you can enjoy sex. Sometimes they won't approach it unless you do (even though they should) same goes for the GPs. I'm lucky to have her as a resource even though more than anything I wish I could go back to the old healthier me!

[ihurttoo]

Leslye, I read your message regarding sex and the importance of various positions/ speed and found them to be possibly very useful. I am marrying soon and haven't been very successful with being intimate with my fiance' I am afraid that our relationship will eventually suffer. Don't get me wrong,...he is a great guy and has been there throughout my entire illness but once we get married I want nothing less but to keep him happy. What are some ways for me to overcome my insecurities regarding my inability to perform and do you have any personal stories you can share?
Reading your post reminded me of my own fears about sex prior to marriage, since I had severe vulvadynia and vulvar vestibulitis, (only I wasnt diagnosed at that time, and had no idea any other woman suffered with it too.

Anyway, I wrote my story for MassageDoula for a class she was in. You might find it interesting. In it, I talk about my first attempts at sex, and my actual first time, and then the first time I was conscious for. (I was drugged the first time, to be sort of raped. I say "sort of" b/c I told my husband to do it b/c I couldnt tolerate it while conscious.

But, my story has a happy ending, a surgery so that I no longer have pain "down there." If you're interested, take a look at the link below. My apologies in advance on it's length, but I felt the detail to be necessary so people would understand EXACTLY how bad it was, before the surgery, so they could appreciate the miraculousness (sp?) of my being able to have pain free sex now (except on rare occaisons).

I hope this helps you and others. If you (or anyone else who might read it), have any questions about anything I discussed, feel free to post or pm me. I will be more than happy to answer them.

I wish you the best of luck with your marriage and hope that you are able to figure out something before your wedding night.

This is the link: http://www.ic-network.com/forum/showthread.pcp?t=24537

Hugs,
Amy