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  1. #1
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    Question Questions on IC diagnosis and vaginal bleeding

    I've been seeing various gynecologists and a urogynecologist about a bunch of symptoms, all of which started at around the same time 6 months ago: mid-cycle vaginal bleeding (starting around ovulation and lasting a week), entry pain during sex, chronic abdominal pain, sporadic pelvic pain, and sporadic UTI-like symptoms triggered by sex (the first few times these cultured positive, the last time negative). I had a laparoscopy and cystoscopy w/ hydrodistention last week, and although the laparoscopy showed no abnormalities, the cystoscopy showed pinpoint bleeding that the doctor says is indicative of IC. He wants to start me on Elmiron. He also diagnosed me the week before the surgery with vestibular adenitis and given a two-week course of Cipro. By the way, I have also had a normal endometrial biopsy and two normal pelvic sonograms.

    I am very upset about the IC diagnosis and at the same time am concerned that it really doesn't explain all my symptoms anyway. I have appointments with the gynecologist and urogynecologist next week but wanted to self-educate first (especially because I can't really focus on anything else). So, my questions are:
    --Does the pinpoint bleeding during cystoscopy definitively diagnose IC, or could this have other causes?
    --Are there conditions linked to IC that could cause the vaginal bleeding?
    --Does it make sense to start off with Elmiron treatments, or are there other things to try first?
    --I don't really have frequency or urgency problems, except during the UTIs and the one time I had symptoms similar to the UTI but with a negative culture. And the bladder/urinary pain is pretty much only present during or during the few days after sex, or after a pelvic exam. Is this consistent with IC?

    Thank you!

  2. #2
    ICN Member Katrina's Avatar
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    Pin point bleeding is usually considered a possitive diagnosis of IC if other things have been ruled out. I haven't heard of anything else causing it. Usually a diagnosis of IC does involve ruiling other things out. Did you have blood work done?

    You were already tested for Endo which often goes with IC and could cause the vaginal bleeding so not sure on that one.

    Your description of your urgency and frequency does describe beginning stages of my IC.

    Elmiron is usually one of the first medications doctor's try for IC. It is the only oral medicaiton FDA approved for IC so it makes sense docs begin there.

    Entery point sex pain can be IC pain if your urethra is tender.

    I must add that you do sound like you have IC to me. I don't know what else you may have if anything. Vaginal Bleeding can happen because of hormone changes and often hormones have caused many flares in people with IC so that may be why they happened together.

    I hope you get the answers you need and feel better soon.
    Faith, Hope, and Love,
    Katrina


    I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back! My hope story http://www.ic-network.com/patientstories/katrina.html
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  3. #3
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    Katrina--
    Thanks very much--it's not what I wanted to hear (I really wish this was just some kind of infection that could go away quickly!) but you're probably right...
    If anyone else out there has experienced IC as well as abnormal vaginal bleeding, please let me know!
    thanks,
    SB

  4. #4
    ICN Member vm's Avatar
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    --Does the pinpoint bleeding during cystoscopy definitively diagnose IC, or could this have other causes?

    There are instances when "normal" bladders have pinpoint bleeding, but combined with your symptoms of pelvic pain and some urinary symptoms it does sound like it could indicate IC. The pinpoint bleeding is usually the telltale sign of IC - but it can happen in normal bladders, too.

    --Are there conditions linked to IC that could cause the vaginal bleeding?

    I don't know that there is any connection between IC and vaginal bleeding - but I could be wrong.

    There are some other conditions that sometimes seem to run concurrently with IC in some people - fibromyalgia and IBS are two examples.

    --Does it make sense to start off with Elmiron treatments, or are there other things to try first?

    Many doctors try to start with the least invasive treatments first. The oral drugs are usually tried first. If you check in the ICN Patient Handbook: www.ic-network.com/handbook you can read up on the different treatment options. Elmiron can take up to 6 months to help symptoms so if you are in a great deal of discomfort you might want to ask your doctor about trying some other things while you wait for it to kick in.

    Also, make sure you try the diet. That is so key for many of us and is one of the simplest (yet not always easy) things to do to help your symptoms. It is discussed in the Patient Handbook, too.

    --I don't really have frequency or urgency problems, except during the UTIs and the one time I had symptoms similar to the UTI but with a negative culture. And the bladder/urinary pain is pretty much only present during or during the few days after sex, or after a pelvic exam.

    Sex is a big "trigger" for many people with IC.

    It does sound like you may have IC.... But there are other things that can mimic symptoms. If your hydro showed the pinpoint bleeding in addition to these other symptoms it probably does point pretty strongly to IC. Sorry...

    The good news? MOST people with IC do go on to find treatments that help them feel much better. I feel pretty "normal" most of the time now. So, while the diagnosis is depressing, it also means you are on the road to finding relief from your symptoms.
    Kim

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    My IC story: http://www.ic-network.com/patientstories/kim.html It's very outdated now. I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

    *****************************

    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

  5. #5
    Support Leader Sarojini's Avatar
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    I agree... it sure sounds like you have IC. It's unlikely that pinpoint bleeding in the bladder would be anything else. AND, your symptoms are pretty consistent with IC --you don't have to have constant symptoms of frequency, urgency, and pain to have the disease. Unfortunately, it sounds like you're having sex-induced flares (VERY common in IC patients, including me).

    As for the Elmiron, yes, many doctors try that first. However, be aware that it can take the drug at least 6 months (sometimes nearly a year) to reach full effectiveness, so you may want to discuss shorter-term options with your doctor. Check out the Treatments section of the Patient Handbook (http://www.ic-network.com/handbook) to get some idea of what kinds of medications are out there, and perhaps print it out and bring it to your next appointment to discuss with your doc. There may well be something in there that will relieve your IC episodes faster than Elmiron alone!

    Good luck and keep us posted
    ****
    Jen

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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