Who can relate...similar situation???

[britbrit2311]

Hi Everyone---I am new to this site, I have been browsing but just recently decided to join and post...I feel as much dialogue as possible about IC is the best way to find a cure!!!!

My story:

I was 22 at the time I was diagnosed with IC (back in January '08). The first time I noticed something was wrong was actually during intercourse back in December. Upon deep penetration, I was in excruciating pain. The symptoms of a UTI simultaneously started to develop. I went to the doctor, was prescribed 3 different antibiotics to treat a UTI, and none of them worked. I still had the urgency/frequency problem, as well as growing lower abdominal pain.

I was soon referred to a urologist, who ended up diagnosing me with IC, after treating me with heparin, sodium bicarbonate, and lidocaine instills. I got major relief from these, so she determined IC was the issue. I was getting the instills once a week for the first 3 months, and then I progressed to only needing one once every 2 wks. I started Elmiron late January and have been on it ever since.

In the past couple of months, I have been able to go almost three wks btwn instillations, but definitely putting up with some discomfort. I have very little abdominal pain, its mainly still the frequency/urgency and never really feeling fully relieved.

Recently, I have started to experience the burning while peeing to a much greater degree. I don't know why all of a sudden that has become an issue. In addition, I just started Atarax a couple of days ago, and I can definitely tell it is making a difference....but now the painful urethral burning as begun in place of the bladder discomfort!!

I am not very good about sticking to the IC diet, because foods don't usually irritate it to the point of intense discomfort. I do shy away from acidic items, alcohol (as much as possible), soda, coffee, and chocolate.

I have a few questions for anyone out there who would be so kind as to respond:

1) What can I do for this burning senstation? I have heard urelle works well.
2) I just started Atarax...how has it worked for you if you have tried it.
3) Deep penetration during intercourse is incredibly painful for me...I am a very sexual person, and this has been a very depressing issue for me. Shallow penetration is fine, but deep and especially doggy style basically hurts badly!! Can anyone relate in any way??? Please respond if so, and how you have dealt with it!

Thank you so much for reading, I look forward to posting and responding a lot more!

XXXBrittany

[Roandro]

When I have burning I do this:
1.) Observe carefully (in terms of other symptoms) if I might have a UTI or not.
2.)Baking soda helps a lot with burning but you can over do it. 1/4 to 1/2 teaspoon in a bottle of water every 2 hours or so until the burning stops.
3.)Homeopathic remedy, cantharsis 30 x is great and cheap, too. It works in an hour or so.
4.) The "wash" or "pour" bottle - I keep it by the toilet. Right before I have to "go" I fill the bottle up with water - not hot, nor cold - just right As I begin to urinate I start to pour the water over my whole urethral area and continue until I'm done. Very soothing and calms any burning.
5.) Something new I've started to do is - when I begin to urinate - I spread my legs WAY far apart -as far as they go and sort of lean over a little bit. Oddly enough - it seems to de-emphasize any burning or pinching down there.
Hope you feel better!

[mbhbarb]

Hi.
I do that legs spread, leaning forward urinating, too. I swear it helps me though when I told my doctor this he said it couldn't be making any difference. I do it anyway - he hasn't tried it so how does he know. It also helps me void completely.

As far as sex is concerned, I've also found that there are positions I used to be able to do that I can't do any more, and "doggy style" is definitely one of them. I know it hurts, but sometime when you are fresh and not hurting yet, maybe you could experiement with different positions (altering your angle slightly each time) to be fully penetrated. You may be able to find a way to get your bladder situated where that won't hurt. It took me awhile, but when I'm not having a flare, I did eventually find positions that worked for me.
barb

[aleet7]

Hi Brittany!
Your story sounds a lot like mine! I started having pain during intercourse too. I went to the doc and was prescribed antibiotics which did not work. I believe that I've been wrongfully diagnosed several times with PID(tested negative for all STD's) because they couldn't find the source of my pelvic pain! I usually get the bladder pain and burning during and after intercourse( oh and frequency and urgency).

I use AZO Standard(OTC) for the burning and I take warm baths. I usually urinate immediately after intercourse to avoid a UTI. Also I had to experiment with different positions to avoid going into a flare.
Best Wishes,
Aleet7

[bluetart]

The only time it burns when I pee is if, I had somthing ridiculiously spicy or if I havn't drank enough water. The more water I drink the more soothing it is to come out.

As far as deep penetration goes.. Is your partner strong. When I get picked up durring sex, facing him, I get deep penetration, and no pain whats so ever. You could try leaning on a wall, holding on to somthing or sitting down on something like the back of the couch. Another suggestion is, if he is on top place your hands on his hips to let him know how far you want him to penetrate you. So your still in control because he may just be reaching a little to far without guidence. hopes this helps, sorry if its a lil graphic.

good luck :)

[carla_2004]

I do see a difference taking the atarax. My previous uro (one with limited IC experience) had me on too low a dose. I finally went to a respected IC research university and the uro there tripled the dose I had been on. I noticed improvement.

When I have burning, I take Prosed DS, which I believe has a numbing agent.

I can tell the difference between IC and a bladder infection. For me, with a UTI, I get a spike of burning pain at the end of the stream. With my IC, there is no pain at the end of the stream, just a sense of relief.

Pain during intercourse- Yep! One suggestion I would have would be to make love with you on top. That way you can control the depth of the penetration. I also used to get urethal burning, so I used a lidocaine prescription to help that out.

Good luck!

[sleekgirla]

for the urethra pain burning (something I have constantly and is very painful), I take pain pills, sometimes just IBprofen or Aleve, drink almond milk a lot, drink lots of water, take azo, sleep with a heating pad between my legs, I also take cornsilk pills as some women have had help with urethral burning when they take them.

the atarax helped me a year and a half ago, but no longer helps me.

sex. wow, how I hate that this condition keeps me from doing so with my husband. if I am not in a lot of pain I will put a lot of lidocaine jelly inside me as my bladder is very tender up inside my vagina, and take a pain killer about an hour before we are going to have sex, and use lots and lots of lubrication. stay lubricated so there is not chance of friction happening which will bother the bladder. also, if deep penetration bothers you, you may have pfd, as doggy style is one of the better positions for me. so, maybe ask your doc about pfd. also they sell special pillows called 'the liberator' I believe the prop up your lower half during sex so you are in a position where he would not be directly hitting the bladder at all. I put a really thick couch pillow under myself when we do it, and it helps a lot.

[smcclafferty]

I also am having the sexual problem right now....I just got a major flare-up of my IC after doing rather well for the past year....I don't necessarily recommend this, but I hadn't had sex in the past year that I was pain-free! Luckily, I have an understanding partner, but I am also very, very, discouraged that my pain/frequency/ etc. was most definitely brought on by the sexual intercourse...I am in a lot of pain right now and it has been about 1 week since this has happened....I am actually so afraid to ever do it again....