Delayed pain after urination

[kate5all]

I'm new to the forum, and I could sure use some advice! I experience a pinching sensation after I urinate--it usually takes about 1-2 minutes after I finish to set in and it lasts for about 10 minutes. It's been going on for about a year. That in itself wouldn't be so bad, but for the last 5 months, I've also had urethral pain during intercourse. I haven't been able to successfully sleep with my fiance for months. We try maybe once every 1 or 2 weeks, but it's too painful. So that's not fun.

I went to an OB/GYN who did a urinalysis and a vaginal exam. Both showed no infection. He told me to start taking cranberry tablets and using lube. He wouldn't listen to me when I told him I was already doing both. A nurse recommended seeing a urologist, which I did. Without examining me, he diagnosed me with IC. I delved into the information on this network and the more I see, the less I'm convinced that I have IC. It doesn't hurt before or during urination, and my bladder doesn't hurt when full. I don't have the urgency or frequency. Urethral inflammation seems to be my problem.

I've learned far more on this site than I have from my medical visits. I know that many people with IC also have urethral pain, and I know that IC patients take things into their own hands and learn the condition inside and out. So I'm hoping someone can share some insight into what might be causing this. Are there any tests I should request from my OB/GYN? He's expensive and my health insurance doesn't cover non-preventative visits. I'd like to avoid going back until I exhaust my options for figuring this out with labwork.

If the lab won't cut it, I'd at least like to go in there prepared to make the appointment as efficient as possible. No more of this "take two cranberry tablets and call me in the morning" junk!

Thanks!

[MelindaP]

Hi Kate,
That pinching sensation may be bladder spasms in your lower bladder. I have had them before & they are horrible! Have you tried an over-the counter anti-spasmodist likeAzostat? It turns your pee bright orange, but it might help. You could have IC, or it might be some kind of bacteria? I would have your gyno do all the swabs for infections to rule it out. But it sounds like he has done a lot already. I have IC, but it is mainly in my urethra. Before I had full blown IC, I would get what I described as a "stingy" sensation after I urinated. It would go away as soon as my bladder started filling again. It would always appear a few days before I go my period & then disappear within days of getting my period. I think you should go see a urologist, make sure it is someone who is familar with IC. Also, check out the IC diet in the meantime. For me, the biggest irritants are coffee, tea, sodas & wine. I know, coffee is a tough one. Since I am in a flare now I have just had to give it up. The first few days are the worst! Please check back & tell us how you are doing.
Melinda
ps ice packs after sex are the best!

[kate5all]

Hi Melinda,

Thank you for responding to my questions! I met with another gynocologist to rule out a few types of infections, and (as I feared) I'm completely normal. I'm out of ideas, so I've been running off the assumption that it is IC. However, I'm not having any luck with getting rid of my symptoms! I've been on the strict diet for several weeks and have felt no improvement. I've avoided Azo, but last night it got so bad that I took one. The weird thing is that the Azo didn't seem to have any effect. It has helped immensly with UTIs in the past, so I don't know what to think.

My doc gave me a prescription for Amitriptyline. I'll probably start taking that this weekend if I'm still feeling no benefits from the diet. I was hoping to go the natural route, so I've been putting it off. But I'm starting to lose hope for the diet.

I have to be honest, I'm pretty low. I'm getting married in 6 months, but I really don't want to go through with it if I can't manage my symptoms. If I had to deal with this level of pain for the rest of my life, it would suck, but I could do it. But I don't think I could doom the love my life to a sexless, childless marriage.

[sailawaygrl]

Hi Kate,

Welcome to the ICN. I understand your wanting to not have to take meds but for many people the low dose amitriptyline works great. Try taking it and give it time to work. You may find that it makes you drowsy in the beginning but try and give it time to wear off. If it does work for you how wonderful would it be to just have to deal with one med and feel so much better.

Please keep us updated as to how it works out for you.
Sandra

[MelindaP]

Hi Kate,
Please don't despair! I know it seems like you will have this forever, but there is a good chance that you can get it under control & go into remission. I know that feeling that you think it will last forever, I know, I have been there myself. For me it was doubly hard because my IC became full blown right before I got pregnant via IVF, so for the first few months I couldn't do any treatment! And to make matters worse, my hormones definately influenced my condition & the high doses of hormones they had me on made it so much worse! It felt like I had a match in my urethra, 24/7. I did go on Elmiron after the first trimester & did do bladder installations. I had the nurse drag the medication down my urethra. I think they helped some, but I didn't really start to get better until I had my daughter & weaned her off breastfeeding (which I did for a year based on my other son's allergies). I literally slept with an ice pack between my legs for a year & 1/2!
Did your Uro offer you anything eles besides the amitryptline? It does help me tremendously. I take a derivitive of that, Nortryptlyn, because I felt that the former made me feel hungry all the time! The Nortryptline works just as well without the hunger! I take 20mg at night. Also, you should definately try Urelle or Prosed DS. It turns your urine blue but it might help a lot with that pinching feeling. I am surprised your Uro didn't offer you that. Definately get that as AZO did nothing for me either. Lastly, you might want to talk to your uro about Elmiron. I have been taking that for over 5 years now & I think it definately offers my bladder/urethra protection. But it take awhile to start working, so the sooner, the better.
I am in a flare right now that is SLOWLY getting better. I too did not think I was diet sensitive in the beginning because it hurt all the time, but once it subsided I could tell what irritated my urethra. When I am flaring I avoid anything acidic (ie tomatos, coffee, tea, sodas, ect). When it gets irritated it just takes TIME to heal. Unfortunately there is not a quick fix. I flare at least 1x a year, and I am not sure what sets it off. I am beginning to think it has something to do with the change of seasons, but I am not sure. Please just know that in all likelyhood these symptoms you are having will subside, but just stick to the diet & get some Urelle! I bet you you will be feeling much better before your wedding. Feel free to send me a private PM too if you would like.
MelindaP

[kate5all]

Thank you both for the advice! I will definitely give Amitriptyline a shot. I plan to give my urologist's office a call today to ask about Prosed or Urelle. Thank goodness there are other options! I'll stick with the diet, too--at least I'm used to it now.

I can't tell you how comforting it is to know that you've gone through this with the same symptoms. I'm so glad you're able to spend the majority of the year pain-free. I'm sure it was a long road. That pregnancy + Flare experience sounds so rough!

Thank you for the support and encouragement. It's helped tremendously!

[sailawaygrl]

Kate,

Just wanted to make sure you are aware that you shouldn't take the AZO with your Prosed or any other of the meds in the same family. I am sure you figured that out, just wanted to post for you or anyone else that reads this in the future. Many times you can just talk to your pharmacist and they can handle the change in meds with your Dr. There are quite a few with essentially the same chemical make up.

Melinda,
Many people with IC do flare more during the change of seasons when allergies are flaring as well. I, with my Dr's approval increase my hydroxizyne during allergy season.
It might help you as well.

Sandra

[kate5all]

OK, so it's been a while and I'm in pretty much the same state as the last time I posted. After the Amitriptyline failed to help, I went on a treatment blitz:

• I started physical therapy to rule out pelvic floor disfunction. My PT thinks that it's all due to tight muscles, but the therapy hasn't helped. Unfortunately.
• I stopped my birth control after hearing that low-dose estrogen pills can cause urethral pain in some people.
• I stuck with the IC diet for some months and then switched to the Alkaline diet. Similar concept; different approach. The alkaline diet was maybe a little more effective than the IC diet, but both of them only helped with pain after urination (not the general urethral irritation that has plagued my intimate life).
• I started using gentle soaps, baby laundry detergent, etc., in case the problem is caused by harsh chemicals. No dice.

Oh, and although I did really appreciate the tip, the Prosed didn't help, which is too bad.

So I'm going back to my urologist this week. He's doing a cystoscopy and wants to try urethral dilation. I've heard that dilation can make the problem worse and when I asked him about that he got a bit defensive. Ugh. I don't like him. So what do you think? Dilation? Yes? No?

Crossing my fingers that he finds something during the cystoscopy!

[aquilinag]

I wonder if perhaps we are in similar boats. It burns when I pee, and then it's sometimes a stabbing pain afterwards. 3 weeks ago, I satrted the diet and Ive been very strict. I also take marshmallow and quercitin. It's helped alot but I flared up on the weekend. It still hurts after sex and maybe half the time I pee.

I'm seeing a naturopath who's doing accupunctre as well. She encourages me to be optimistic, that healing takes time...

My uro was a total freaking jerk. So useless. I've been referred to another one and I am hoping that maybe they will have some suggestions.

I had a cystocophy and they found a pollop but I was otherwise normal.

I don't generally have frequency or urgency but I did one weekend and it was absolutely awful. It's what made me do the diet. So - again, sounds like we're similar.

I can sympathize about the damper on your sex life. Not only is that frusrtating and hard to be close to your partner, etc etc, but it's hard to be at all in the "mood" when you're stressed about your pee. I just suggest exploring other fun sexy things then normal intercourse.

I feel your pain... I really do.

Seems like we're in a similar spot in the process. I'd love someone to talk to more frequently - if you want, private message me and maybe we can get set up on gchat.

[aquilinag]

PS

castor oil pack. It's a big hokey but it seems to help, so why not.

[kate5all]

It does sound like we're having similar experiences. pain after urination (at least it's not the total pelvic pain of most IC patients--sounds awful!) and off-putting urologists. So they removed a polyp and it didn't help?

I think I'm going to steer clear of the dilation for now. I found a very interesting article (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1303542/) yesterday that I plan to bring to my appointment. I'd actually read it before, but not very closely. This second pass was very interesting. I'm going to ask my doc to try examining my paraurethral glands to check for an infection and, if they're irritated, I'm going to ask for the antibiotics mentioned. Apparently traditional UTI antibiotics won't help if the paraurethral gland is the problem; you need something with "tissue penetrating agents."

I don't know how receptive my urologist will be, but I'm hoping we can at least cross this off the list of potential diagnoses.


Oh, thanks for the tip about the castor oil pack--definitely something to explore!

[healingthoughts]

kate5all,

Let us know how your appointment goes. I have the same symptom (pain and increased urgency after urination) and I don't see many posts about that.

Thanks,

[MelindaP]

Hi Kate,
Sorry to hear that nothing seems to be working for you. I did end up going back to dr. Moldwin for a urethral stretch again in may. He was slightly dubious that it would help, but since it helped the first time he agreed to do another. The first few pees is brutal, but it is better now. I am back to eating/drinking almost everything within reason & I do take prelude. I do find that my urethra is more irritated after drinking coffee/ beer & after sex. But I feel like I know it will pass within a few hours & I guess I am just living with it for now. I do try to drink a lot of water to flush out my bladder during the day. It does put a damper on the sex life though! It has gotten better though, as I no longer have to do the ice packs afterwards. I just plan on drinking a lot of water to void after sex. Dr mold win did give me an amitrypltlyn cream that he has compounded at a special pharmacy in ny. You are supposed to put a pea sized amount of the cream in your vagina, up near where the utethra area would start ( base of bladder). That is where I experience my discomfort. He said he is having good success with it. I have not really tried it because I was waiting to see if my urethral problems would die down on their own. I remember when I flared a year ago last spring, I was not feeling "normal" again until almost winter time! I might give the cream a try, so I will let you all know if it works. My heart goes out to all of us to deal with terrible chronic illness!
MelindP

[kate5all]

Back to square one

Hey Melinda!

That cream sounds very interesting. If you end up using it, let me know how it works!

My appointment was a disaster. The doctor flat out laughed at the article I brought in and said that the examination detailed in the article (which he didn't read, beyond the first page), was a standard part of the cystoscopy. He said my urethra and bladder look perfectly healthy. I asked him if my urethra even looked irritated and he said no. So I'm at a complete loss, because I still have all of my symptoms. Before he rushed off to his next patient, I tried to ask him for some next steps or possible treatment options, but all he recommended was taking hot baths. Fabulous.

So now I'm not sure what to do. Obviously managing this thing through diet and physical therapy hasn't helped. It's so frustrating because I can't have intercourse at all! It just hurts too damn much. I've even tried powering through and ignoring the pain, but after a few minutes it becomes just too unbearable.

I'm thinking about going back to my last gynecologist. I really liked her, even though she seems out of her element with my symptoms. I wonder if she can recommend a topical cream or something... I'm willing to try anything!

I might also ask her to do the examination from the article, because when the uro did it, it didn't feel like the "careful pinpoint palpation" described in the article. He just literally knocked around in there--side to side and against my bladder. Thanks for that, Doc! One thing is certain: I'm never seeing that doctor again.

So sick of this! It's been almost a year since the painful intercourse started and almost a year and a half with the urination pain. Please tell me this isn't how I'll be for the rest of my life!

[MelindaP]

I am so sorry Kate! It is so frustrating when you have doctors that don't seem to care! I wish they could experience this level of pain & then see if they would change their tune! Was this Uro a specialist in IC? If not, I would definately find one in your area. I think this website has a listing of them. Also, there are threads here for different parts of the country. You could post on that & see if their are any doctors near you. I think it is important to see an IC specialist because a general uro may not know that urethral symptoms are a complaint of some IC sufferers. You could try to go to your gyno if you liked her but ultimately I would recommend a specialist. I will tell you treatment & time it DOES get better. You just have to find the right combo that works for you. I know for me triggers are coffee, diet sodas & citrus fruit. Of course, I do drink a little coffee so I pay for that later. Drinking a lot of water does help. I seem to be much better in the winter, so I wonder if mine is also allergy related. Please let me know how everything works out for you.
MelindaP