Wow, where do I even start? I'll try not to make this into a novel. I was diagnosed with IC when I was 19, in 2002. At that time I was having vaginal burning (inside) that would last anywhere from one hour to a few days at a time, but would go away for long periods - months. Then it went away completely for about 4 years....
Fast forward to January of 2007. Six months after having my son (first/only pregnancy), the pain came back a THOUSAND times WORSE. Except this time, it was a severe burning in my BLADDER, not in the birth canal. Severe burning, frequency, and urgency. Feeling of not emptying completely (had tests proved I was emptying completely). Bloating. The pain was a lot worse than the previous burning I had before. And not only that, but this time it would last for a month or two straight, and only let up for a month or so at a time. I've had every test done you can imagine, including std's and the like. Ultrasounds, PFD test, Retention, Prolapse, Kidney stones, etc.. etc.. Also had hydro distention done twice, both times which nothing abnormal was found, bladder looks healthy and holds MORE than average. Since then, it has progressed more and more as time goes on. At this point, I am in severely debilitating pain everyday. I only have 2-4 days out of the month when I feel ok. It;s constant. Never ending. I always feel like I have to urinate. Before urinating, after urinating, all the time. I always have that "twinge" as I call it, in my bladder that feels like it's still in there, and it's SO uncomfortable too. Its not just like a few drops are left and I can barely feel it. Depending on the severity of the frequency and urgency on a given day after I void sometimes I feel like I didn't go at ALL, sometimes like I went a little but not much, sometimes like it's mostly gone but still a bit left, etc.. Usually the worst option though. And when I press lightly on the suprapubic (sp?) area I can feel the intensity of the urgency rise. Sometimes I ca barely make it to the toilet without some getting out. Along with the urgency/frequency there is the burning. Mostly the burning of the actual severe urgency feeling. Other symptoms are bloating, full feeling in belly, heartburn a lot (though this could be from my meds), a lot of the time my urine will have a bad smell to it, or be dark yellow when I drank a lot of water so doesn't make sense. Also slow urine stream sometimes. Pain is worse when I walk and alleviates a bit when I sit or lay down. Like I said, the pain is everyday. A few days a month where I'm alright. This has ruined my life. Period. And the most important part of this is the fact that now I have gotten a new symptom. I have my period normally, regular, never missed. Very mild cramping, normal flow, normal 5 days. Well, for the past three months, I have had sex about six times, and every single time (literally), I will BLEED two days later. Not the same day. Not the day after. But always two days later. Not only will I bleed, but I will have the most GOD AWFUL indescribable burning you could ever imagine. The burning is constant. HORRIBLE. Can't sleep. Can't even MOVE. And it is always THROBBING. Actual throbbing. I can feel it. In my bladder or somewhere close to it. The throbbing intensifies as does the burning right at the end when I urinate. It's so bad I drop to the floor before I'm even completely done, and sit on a towel and just bawl my eyes out all day and night. This feeling and the bleeding ONLY happens after having sex, and only the TWO days AFTER, like I said. The bleeding itself is not my period, because each time it happened I had already had my period for the month on the normal period date (I'm pretty regular). However, it mimics the flow, color, and length of time of my regular period. No pain related to period like cramping or anything. This excruciating burning and bleeding lasts usually for 3-4 days and then subsides and goes back to my "normal" pain until I have sex and it happens all over again. I've obviously stopped having sex now that I know it's definitely from that. I've been with the SAME guy for ten years so it can't be him. He doesn't cheat. And yes I know for sure. Also I've been tested for std's several times and all negative. I have been seeing a urologist for this since it started in 2002 with my IC diagnosis. But now with this new issue with the bleeding, it has changed to a gynecological problem. I haven't been to the gynocologist in a couple years, and stopped seeing the one I used to see because he is a jerk and makes me uncomfortable, so I have an appt now with a new guy that my urologist knows so they can compare notes or whatever. So, with ALL that said....is there ANYONE out there who knows what this COULD be? Guesses? Similar stories? Words of wisdom? Lol. I'm desperate!
My thoughts first went to intersticial cystitis so I'm glad to see you posted this in that forum as well as here. I don't really know anything about IC but do know of someone who is brilliant at it, will send you a PM with that info. If you don't get any info from the other forums you've posted to, please follow up with the link I'll send you. Good luck, I hope you find some answers soon!
This really sounds like a bladder infection or a UTI but from what you said everything has been all checked out. Is there a medication that you are taking that might have a side effect? Hope you find some relief :( Keep us posted.
Nope, I've been on the same medications pretty much since this whole thing started with the "new" IC symptoms in 2007, which are Elavil, Elmiron, and Hydroxyzine. All of which have never given me side effects. I don't even know if they work because IC symptoms are so sporadic anyway, but I stay on them "just in case". I never get side effects from medications, and I never get sick either. That's why this whole thing is a mystery to me.
I thought I should also note that every time I take an at-home UTI test it comes out positive for leukocytes (white blood cells), but negative for nitrates. Literally EVERY time I take one it shows up positive, with the deep dark purple, which I don't know if that means it's more severe than if it were the lighter purple or pink positive? Anyway, doesn't the positive for leukocytes mean that my body is trying to fight an infection? Even when I go to the doctors same thing with the leukocytes but never anything else so I don't get prescribed antibiotics usually. But when I do have them prescribed, they never work.
Also I should note that my ph is highly acidic. But before you start saying "Oh, now wonder!", remember I have other symptoms too that have nothing to do with that, like the bleeding two days after sex, the horrible burning seething, throbbing pain two days after as well, the belly bloating, etc.
I had tested my urine and saliva on the ph test strips about a week ago and that's what showed the highly acidic urine and saliva. Then I did it a few days later just to be sure and same thing. Had my friend do it too just to make sure the strips weren't faulty and his showed normal / alkaline for both urine and saliva.
What is it that makes the urine or ph or whatever highly acidic? I don't eat acidic foods. I only drink water. And this can't be the cause of all my pain and problems, right? Because of the bleeding and sexual problems and bloating, etc?
I recently purchased Alkalife drops which I got in the mail today. Its supposed to alkalinize water. I don't know if it will make a big enough difference to "cure" me but figured it's worth a shot. I'm just so confused and irritated and so so so incredibly exhausted from all of this. Something's gotta give.....
PS. thank you sherriep I am going to take a look at it now.
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