can anyone relate

[hazellin31]

Ok I know this is a little personal but I had to ask. My issue with the sex aside from the penetration issue is the fact that I don't even want my boyfriend to touch me because it hurts for me to get turned on. It's like a really painful pressure in my bladder (at least I think it's there). I tried to explain this to my uro but I don't think he understood. I've been taking Uristat before sex which helps a lot. Like most of you, I'm lucky to have a supportive boyfriend, but at the same time feel guilty for not being able to be spontaneous and do things normal gfs would do. Can anyone else relate to this problem of issues even before penetration? I try to relax and just enjoy it but I'm so nervous about the pain that it's all I can think about!

[Katrina]

I had that problem with endometriosis.....It was painful just to desire sex or do even little things. If your uro isn't helping you I think you should talk to a gynocologist....maybe some hormone treatment will help. I hope you get the help you need. :grouphug:

[Cricketmk3]

I can relate! I don't know whether it hurts me to get turned on or not because I take an antidepressant and it would take all the Chippendale dancers plus Brad Pitt to get me turned on. I don't even know if that would do it...sorry Brad!

[bunnymoomoo]

it's not painful for me to be "turned on" ... but, it's kinda hard to describe, it feels like it's too much ... like i'm too aroused ... i do get easily aroused, and have noticed a slight difficulty in having an orgasm (i've read that these can be symptoms of PFD) ... sometimes i'm scared that it (being aroused/having an orgasm) will make my symptoms of frequency/urgency worse ... so that anticipation may have something to do with it. often doctors say you just have to relax *scoffs* yeah, i know that >_<

~ bunny

[ibtracy]

Hi, after my husband talked to a member of the boards whom I'm very close friends with, we learned to experiment with different positions, use plenty of lubrication and have gentle slow penetration. Immediately after sex, take a warm shower or bath (your choice) and let the heat of the water help take away some of the pain after wards, taking a pyridium afterwards is also a great idea and then my hubby always brings my ice pack to bed to use immediately after my bath. This has been working for us, so it's worth a try. Explain that it needs to be gentle and let him know what areas hurt or what feels good, I've found that sex with an IC patient involves patience and communication with your partner. Men are "fixers" so if they can do something different or help you feel better afterwards, they feel like they're "fixing" the problem.

It's worth a try anyway, okay? :)

Tracy

[ChefGrl84]

I used to have some pain, but now ive learned that you have to make sure that you are comfortable when you are going to do something.. my big thing is that i have to be very relaxed.. right after a shower or bath is usually the most relaxing. if i am too tense i find that it hurts. Also.. you might want to consider getting some of those adhesive heating pads, those work miracles (at least for me they do). The other advice people have said (go slow and lots of lubrication) are good pointers. Also, I find that the pain sometimes depends on how "large" the guy is. I tell my bf that he is lucky that hes not too large because i would have to get rid of him..lol...this problem is a good thing for guys that people say are small.. the smaller they are (not too small though..lol) the less it will hurt. And try other ways for you and your bf to be intimate, there are many things you can do that do not include penetration. If you really want to be intimate with him and you know that your bladder hurts then you might want to consider some of the other options.

Also.. I have found that having orgasms actually makes my bladder feel better. I spoke to my doc about it and he said that when you have an orgasm it is almost like imjectings tons of oxygen to that region, therefore helping the permeation of your bladder and in turn making it feel better.


good luck.. PM me if you want to talk more or email me scrofani@rider.edu
I saw that you were 22 in your profile, I am 21 in march and also live in NJ.

:angel: Rachel
Diagnosed Jan 2004

[tsglittergirl]

I have the same problem. It's like I don't enjoy sex because of my IC. Penetration is very painful and the only thing I can do to help it is relax before penetration, or take a hot bath before so my muscles are relaxed. I feel your pain! tsglittergirl@yahoo.com

[kelly McC]

I do have this problem with hubby. Its been about 3 years but he's very understanding we try different things and a lub recommended by my specialist. I take pyridium plus first and shower and use a ice pack after.
Kelly

[tsglittergirl]

Do you get kidney pains when you take pyridium? I do. They are very painful to the point where I can not breathe. But they don't last long, but a few minutes. Anybody else? tsglittergirl@yahoo.com

[broken_smile]

Hi tsglittergirl,
Every time I have tried Pyriduim Plus I get pains in both sides of my back that makes me feel like someone is squeezing my kidneys. I have to get my husband to massage the pain away. I quit taking it as it makes me very nauseated to. I am not sure if it is the kidneys are the intestines that cause this painful spasm as I also have IBS. It seems like it might have something to do with the dye in the medication not sure though but I know what you are describing. Try using Prosed DS or Urised as I find these do not cause that same problem. Hope this helps and good luck!!!

Broken_Smile :grouphug:

[janelle77362]

Peneration is not the only form of pain IC patients have with sexual contact. Urethra pain and pelvic makes any contact "down there" uncomfortable and painful. Oral sex for me is a big no-no. I can't even stand the thought because of the resulting pain. What I have found helps me is taking a Tylenol or pain pill right before and right after. Also a warm shower with the partner helps you get relaxed, reduce the pain, and (for me at least) get in the mood.
;)
Janelle

[DetroitMel]

Hazellin,

I saw you mention that it's hard to be spontaneous, and for me, that's the hardest part of it all!! When the fiance comes home from work and is being all sweet and romantic and I have to say sorry, now is not a good time, my urethra is hurting me - it's such a bummer! But we've learned to take advantage of the times when I feel 100% good to make up for it!

My issues mostly relate just to penetration. You may want to talk to your gyn about vestibulitis ... a condition that can cause the entire vulvar area to be very painful. I've found that many IC patients also have vestibulitis (like myself). But there are treatment options for it, as well, that can help...

I hope you find relief soon!

Mel

[dawn42007]

I can totally relate! Not only is sex painful, but if my husband even touches me or does anything to arouse me at all, I usually begin to hurt. Then if we do have sex, I usually end up crying or sitting on the potty groaning, and then he feels so guilty for hurting me. We have only been married a year and a half, and I feel somewhat disconnected from him in some ways because I feel like I am always pushing him away. He is very understanding, but that makes it no easier for me to deal with this. We have been wanting to try for another baby, but at this rate, it would be a miracle! I sure do hope things get better for you, and wanted you to know you are not alone in this!
Jessica

[Flarin-up Vicky]

I can totally relate!!Before the ic my sex drive was through the roof,literally!!Sometimes I think that's why I got ic,too much sex,as silly as that may sound.Me and my partner hardly ever have sex now and when we do it's great but afterwards I'm paying for it,Ouch!!!!!!He's such an understanding guy but even though I feel guilty for depriving him of pleasure.It's funny because when I'm in the mood he starts feeling bad and gets all worried because of what I'm going to be going through afterwards!!I find taking a warm bath is most helpful.

[babygirl694]

I know how you guys feel. I feel like im a total failure when it comes to having sex with my husband. I cry because it hurts so bad and i know it has to upset him. As understanding and as patient as he is, he still doesnt get why i cry and why i hurt so bad. I literally have to pull him out of me and kinda push him away because it just hurts so bad. Sex just started hurting for me back in december. I mean after i would have sex before that i would just go to the bathroom and it would burn but it would go away after a while.. for the past 2 months i cant even bear to have sex. I cant even think about it. It hurts me too much. When we DO have sex, it hurts like hell and i have to go pee and sit there forever and i have to put a warm washcloth down there for a long time and just rub and rub so it doesnt hurt anymroe.. but i suffer for days afterwards. We had sex today and my back is just kililng me from pain and my stomach just hurts soo bad. :(.
I'm just glad that theres someone else out there that understands what im going through and im not alone. Thank you everyone for your support and encouragement. It means more to me than you guys will ever know.

[broken_smile]

Hi Babygirl964,
Since this has just started happening in December you might want to go see gynocologist and urologist to make sure something else has not developed. If they find nothing wrong it might be you getting worked up because you know that you will feel bad later. You could be tensing up your pelvic floor muscles more lately not even realizing it. Talk with your doctor about giving you a muscle relaxer and some pain medication to take before sex and see if that helps. You could also try using KY-Jelly or Astro Glide to keep you from have alot of friction upon penetration. Afterwards try taking a very warm bath not using any soap or if you just have to use soap try Dove or Pears soap something with out perfume. I think the doctors could give you something to help so please don't give up. Everyone of us experience some flares but I have found things that help me personally so it is not such a problem. Let us know what the doctors come up with but please go and see them. If you need to talk you can send a private message to me. I will help you as much as I can.

Broken_Smile :angel:

[rhea]

Ugghhh...my poor husband, lately it seems that just the thought of sex sends me running in the opposite direction. Thank goodness he is very understanding about it. We have been at this a long time and have learned that there are other things besides intercourse when it comes to sex. Good luck!

[babygirl694]

Hey Broken smile :) Thank you for all the advice and help. I really appreciate it.

The problem with going to the doctor is that i dont have insurance anymore. I got married in november and got off my parents insurance. Me and my husband dont have insurance yet and we dont make enough money for me to go to the doctor. We barely make enough money to get by.

I do have some Good news though. My mother went to my urologist last week and told them about my situation. How i've been having reallllly bad flare ups since december-Like nonstop ones-That last for days. The nurse at his office said that i could come in and just put a "down payment" down of like $10-20 and then just pay it off. Which is a good idea but its like i dont have the time to go to the doctor because i work.. * i just started working.. im a housekeeper*.. which is a good job becuase you can go to the bathroom ANYTIME you want to!! :bunny:

Anyways,the nurse gave mom some papers for patient assistance to get my medicine .. which isnt much but it costs more then me and my husband can afford right now. *286* for my elmiron a month. I personally think that i need more medicine then that because it doesnt seem to be helping... but i also feel ilke nothing helps.. maybe thats just me. Maybe i've just been getting really depressed lately because of all my flare ups. I dunno. Anyways, I applied for medicare- walgreens discount program and they approved me and they said they would send me a card.. so they'll be giving me a down payment type thing of $600 which will pay for 1 month of my zyprexa *for depression* and my elmiron.. and then they will be $30 all together a month after that. Thats good.. but i am going to try to see if i can go through my doctor and get the medicine free. :hmm:

About the Sex.. It might be something else but i also think that i do tense up because i know it's going to hurt like hell afterwards. My husband is really patient with me when it comes to having sex.. but he doesnt really understand why i hurt and how i can hurt that bad and why i cry over it. :mad: We've tried to KY-Jelly 2 times and it didnt help. Actually it might have been the way we tried to use it the 2nd time that didnt work. We kinda Poured it in me because i cant really get wet anymore and i guess it irriated it because i started BURNING baddddd :help: and i just cried and cried because it hurt so bad and i just wanted it to work so bad. The first time we tried it, we just put it on him and it didnt burn me as much but it still didnt help at all. Someone on here suggested trying some other kind. Where do you get astro glide at? How much does it cost?

My husband bought me some Prelief 2 weeks ago and i take 2 pills 3 times a day.. usually when i eat and when i'm about to go to bed. I hope they start to help more. sucky thing is that i dont have my medicine right now. I ran out.. so i'm waiting on the discount card to get here so i can get some..

I think im going to do what the nurse said and try to get an appoinment and just pay a little bit and pay it off as i go because I REALLY need to go to the doctor. Its been sooo bad lately that my boss actually sent me home because i got to work and was in tears because i was just hurting soo much. I've been sleeping with a heating pad, i've been taking hot baths and showers, i've been eating right, i've been trying not to stress about things, i've been taking my medicine *until i ran out monday*.. i just dont understand why its been so bad. Maybe when i go to the doctor i can do as you said and get a pain pill and muscle relaxer. Maybe that'll help because me and my husband had such a GREAT sex life when we were dating and when we first got married. I just want that back :mad:


Rhea--- what do you and your husband do besides have "sex"? I would really like to know so i could figure out some things to do besides have sex that wont hurt me as badly. Thank you :)

I'm sorry you guys for rambling. I just had alot on my mind and i needed to get it out of me. Thank you for reading this if you have. I really appreciate it. If you guys have any more suggestions please let me know. Like what food bugs you and what you do to control your flare ups and what medicine you guys are on and how you pay for your medicine.. all that stuff. I just need some advice as to how to cope. I feel like i dont have anybody here at home and i know you guys go through the same exact thing that i do. Thank you so much. :grouphug:

:toilet: ---- love that cuz thats where im at most of the time!! LoL.

[babygirl694]

Bad news.. i called the medicare place that was gonna give me my medicine cheap and they said that i'm not qualified because i dont have a medicare card, just a medicaid card. :(. I was so upset... but i have a doctors appointment tomorrow morning at 9:15.. so hopefully i'll be able to get some medicine! :o). Thanks for all the help you guys! I apprecaite it.

[debzx]

My problem is that whenever we have sex i get an infection ( I have tried all the tips ect and hey i still get infection!! so after 4 days of A/Bs it looks like it may be leaving ( Untill) we get so desperate for closeness that we do it again LOl.

It really isnt a laughing matter eh!! its causing alot of stress


debzx

[traceann]

Babygirl694: Are you on the IC diet, I mean strictly? When I first started it about 3 months ago now, I was super strict for about 3-4 weeks, and then after things calmed down I started adding in new foods. Believe me I can UNDERSTAND the money/medication thing, I am a single woman, and the elmiron is the cost of one of my entire paychecks! LOL. The diet can be soooo beneficial, and you gotta eat anyway, so it's something you can do for yourself that won't cost too much extra out of your pocket. I didn't think it was working at first, as it seemed no matter what I ate, I was in pain, lol. It took about 3-4 weeks to really see a difference, now I have my bladder to the point of where I can usually tell what food is the suspect! Plus I take vistaril (hydroxyzine -- antihistamine) and ditropan, those two are fairly inexpensive, as I too have no insurance. The ditro runs me about 20.00 a month and the vistaril runs about 20.00 for a 3 month supply for me, about 7 bucks a month. Adn it seems to me that there are some here on the board that do well managing the IC with just the vistaril (hee hee, don't quote me on that, lol) and the diet. Might be something to check into while you are trying to get your ducks in a row for the pricier elmiron.

I also use AZO Standard or Uristat (the OTC pyridium) as needed when my heating pad isn't cutting it. And I use OTC Motrin, seems to work well for me, it can calm the "constand-need-to-pee" feeling sometimes. I have frozen water bottles in the freezer for when my urethra is acting up, I half sit on it and it can work wonders! :) Also taking a couple Tums works for me when things are spasming/burning, or 1 tsp of baking soda in a big glass of water works the same as the Tums for me too. And I use my pain/voiding diary religously, it's my mainstay. I record everything, when I peed and a pain rating, what I eat, when I eat it, my meds, my home remedies used and success or failure with them, my sypmtoms -- you name it , I enter it, lol. It's helped me discover things I hadn't thought of. I found that Wonder Bread white, notches up my frequency, when I looked at it more closely, I noticed soy flour in it. And here, I had been eating it for quite awhile, never thought anything of it, it's just white bread, boy was I wrong, lol. I've become a better food detective. Seemingly harmless things, were bothersome for me, go figure. And some things I was terrified to try, haven't really affected me, it's crazy. But my diary helped me with all those things.

Sex, hmmm. At first diagnosis, that was a big N-O! LOL. We started out slow when I was starting to have the occasional better day, (and that was tough, since he's only "home" on weekends!! ack!), no penetration, and very gentle type activites. Then, as I have been feeling better and better, he finally got to quit being a member of the "none club", lol. And I have had no problems. But it was abstinence in the beginning, the thought of sex was even horrifying, :) lol. Lots of lubrication too, we both like the Astroglide, way better than the KY we were using. And just taking slow, and only doing what I was up for. It helped my relaxation factor just to know I had the ability to say "nope, not that right now", if something started was not going well, no fear, so then I was less anxious.

Hope some of this helps you out!!!

hugs,
Tracey :)

[babygirl694]

sorry its been awhile since i could get to a computer to reply. i went to the doctor 2weeks ago and he put me on pyridium. It seems to be working..i think..and i found some other medicine that i had thought i lost that turns your pee orange. Not sure what its called. I forgot. and i've been taking my prelief and following the diet as best i can..not eating things that are for sure going to bother me. :o).It has been helping.I havent had as many flairs lately. :). So thats good. and i found some elmiron that i had from a LONG time ago and started taking it. Hopefully i'll be able to get my medicine free though. talk to you guys later. :).