View Full Version : Not diagnosed yet..please help (m)
08-19-2004, 01:32 AM
A little about myself....this all started during the process of trying to have a baby. I am 40 years old and my husband is 42. We have been trying to have a child since we married in 2002. Well, after a lot of troubles, 1.5 years of trying and laproscopic surgery for endometriosis...we finally ended up going with in vitro fertilization. I have one canceled cycle of IVF, one cycle of IVF with a biochem pregnancy (early miscarriage) and one failed cycle of IVF. But I started getting UTIs after each cycle. This last one has been especially troublesome. My RE (fertility specialist) gave me some macrobid and it didn't work, so my gyn gave me some cipro and it didn't work. I am waiting for my appt with a urologist on Sept 1. I think I don't have a UTI at all but I have IC. The only way I can sleep at night without a thousand trips to the bathroom is if I take a benadryl. During the day and work it is more troublesome. I have good days (like yesterday) no problems until I got home from work. But today it started up as soon as I got to work. It is terrible sitting in meetings!
I don't know what to do. I've called the uro office a few times to see if there have been any cancellations and so far none. This is the uro I have been referred to and I really want to see her....she is supposed to be excellent for female issues. I should also say I have Hashimoto's thyroiditis and my endocrinologist is currently adjusting my synthyroid...she has upped the dosage. Is this the problem? I don't know. I am so stressed out about the symptoms.
Can someone help me? I have been trying to watch what I eat. I've cut out tomatoes, caffeine, citrus. It has helped a bit but I am still experiencing a feeling of pain at the opening of my urethra and I sometimes experience stabbing pains at well. Would hot packs or cold packs or something help me out? I am supposed to go through another round of IVF in Sept/Oct and this is killing me.
Thanks for letting me tell someone. I have felt so alone about this I just feel like crying.
08-19-2004, 01:54 AM
I am so sorry for all you are going threw. I'm too new at this to offer any suggestions, so all I can do is lend a caring heart and a shoulder to cry on. You are not alone in this at all. This is a very nice message board with alot of supporting and very caring people. Good luck and I wish you well. God bless you.:pray:
08-19-2004, 02:02 AM
Oh no... I'm so sorry you are having these symptoms!!! :grouphug:
First off, :welcome: to the ICN. You've come to the right place; you will find a lot of great information and a lot of support here as you go through the steps of getting a diagnosis. We all know what you are going through, because we've all been there before!
I definitely understand how difficult work, and especially meetings, can be when you've gotta pee every 10 minutes! It's also difficult to sit when your urethral opening hurts. I went through all of that too and can really sympathize.
It sounds like you may well have developed IC, but I'm glad you are going to a urologist to find out for sure. Once you know, your uro can prescribe all kinds of things to make you more comfortable. It's possible that the hormones and things from the Synthroid and the IVF aggravate your bladder (many of us find hormone levels really affect our symptoms, so you are not alone with that). However, if it is IC, there are probably things you can do to keep things under control so that you can still keep trying for a baby, etc. That is something you will need to discuss with your uro when you go.
Anyway, DEFINITELY try both hot and cold packs and see which you like better. Some of us like hot, others like cold -- I personally like heat on my abdomen for discomfort there, but I like ice on my crotch/urethra when it is burning down there. This is one example of how everyone with IC is different. You're going to hear that a lot. Basically, things are trial and error with this disease, and it can be frustrating at times, but don't give up :) You WILL find something that works for you!!
In the meantime, try reading our Patient Handbook at http://www.ic-network.com/handbook if you haven't done so already... there are a lot of helpful tips in there, and it describes the diagnosis & treatment of IC nicely too!
Good luck, and keep in touch.
08-19-2004, 02:12 AM
This may or may not be IC. The symptoms you described do sound like some of the ones I have. Especially the stabbing pain. I do not have them as much as I once did, but it would feel like someone stuck a knife up my urethra and into my bladder.
The best advise I can give you is to try not to worry about this and not get stressed out about what might be. I know it is difficult to do. I have found that stress is a huge trigger for me. I am still learning how not to let my brain run over all the negatives all the time. You have made some wise choices already by watching what you eat and making an appointment with a uro.
Check out the information available to you here on this Website. Just go to the Home Page and click on the titles. Take your time and do not try to do it all at once. It can become overwhelming. Check out the IC Diet. Many of us have found relief from not eating or drinking anything that can trigger a flare.
Yes, heat can sometimes help with the discomfort. So can cool packs.
This site is a wonderful place to meet people who understand what you are going through. We have been, or are still, where you are right now. You can feel safe here. I hope somone will come in who will be able to help with your questions about the meds you are on. :)
08-19-2004, 02:23 AM
:hi: and :welcome: to the ICN family. I'm sorry you are having systoms Hope you find some answers soon so you can start treatments.
that are safe for you and hopefully soon baby to be.
sending you hugs and prayers
08-19-2004, 02:37 AM
Donna, some immediate relief for while you are at work (and while trying to sleep!) is over-the-counter Uristat. It's for bladder pain. Your dr. may have given you a script for it when you had UTIs. It really helps me when my urethrea hurts. I can take just one in the morning (rather than the 2 every 4 hours) and the relief is wonderful. The benadryl is a good idea too. Can you bring a heating pad to work? Sitting with it across your abdomen might give you some relief. And these boards are wonderful!
08-19-2004, 08:29 AM
:hi: and :welcome: to the ICN. I am very sorry you have theese symptoms Donna...I know it must be ruff. I have endotmetriosis as well. :grouphug: I hope you find out everything you need to.
IC Pain Relief Methods (This list put together by Katrina) Remember I am not a doctor and you should always check with your doc before trying theese.
This list is for when you are already in pain
• Ice/Cold (I believe alternating between hot and cold is best)
o Ice packs
o Cold spray water
o In a water bottle
• Drinking almond milk
• Drinking baking soda and water mix or alka selser (about 1 teaspoon baking soda per glass)
o Marshmallow root (althaea officinalis) helps sooth irritation and inflammation due
o Licorice (glycyrrhiza glabra and g. uralensis) good for inflammation and anti allergic but should only be used short term
o Uva Ursi (arctostaphylos uva-ursi) is an antiseptic of the urinary track also used as a diuretic, also for inflammation…also only for short term use
o Black Cohosh (cimicifuga racemosa) not good for me since has similar effects to the hormone estrogen. Is used as a sedative and to relieve menstrual cramps. May have anti inflammatory effects. Avoid large doses.
o Catnip (nepeta cataria) eases menstrual pain, soothes the nerves, and as a sleep aid.
o Chamomile (Matricaria chamomilla) mild sedative, creduces inflammation, relieve menstrual cramps, http://www.ic-network.com/cgi-bin/ustorekeeper.pl?command=goto&file=Foods-Tea.html
• cornsilk tablets are unreal!!!!!
• Drinking a burger king milkshake
• Resting/relaxing (some goes as far as to say laying down….at times I could only lay on my side)
• aroma therapy (either in a warm wash cloth across face, in a bath, inhaled from a bowl of steamy water, vaporized on an oil burner, sometimes candles, applied to the skin, or taken orally)
o almond oil
o lemons oranges
o all essential oils
• physical therapy
• Yoga mine see , ICN: (http://www.ic-network.com/shop/)
• Prilosec OTC or something...not so much for pain but because it is newly non prescription acid reducer
• Water (drinking plenty of water helps with burning pain and helps dilute urine so that it is less harmful to the bladder wall
• TENS unit Ask your doctor for a TENS unit. A TENS unit is believed to work by providing another source of stimulation to "divert" the brain from paying attention to your bladder. It's based on the spinal gate theory. Some patients find TENS very helpful while driving, or in situations when a pain medication isn't appropriate.
• Migraine Ice Patches
• Tylenol with 4 Prelief (many non prescription meds can hurt the bladder….be careful and watch out for what bothers you) http://www.ic-network.com/handbook/nerve.html
• Topical analgesic…Menthol example ICE Blue Gel
o Thermal Care Heat wraps
o Heating pad (http://www.ic-network.com/shop/)
o Thermal care adhesive body warmer (http://www.ic-network.com/shop/)
o Spraying heated water
o a microwaveable pad (http://www.ic-network.com/shop/)
• Extra Prelief (http://www.ic-network.com/handbook/prelieffactsheet.html)
• Taking a shower or Tums if your desperate
• Warm Baths (NOT HOT!!!!) No bubble bath or strong soaps, please! Soft soaps, perfumed soaps, bath salts & bubble baths can be very irritating to an IC patient. However, you can put baking soda in the tub for extra comfort. SITZ Baths Definition: A sitz bath (also called a hip bath) is a type of bath in which only the hips and buttocks are soaked in water or saline solution. Its name comes from the German verb "sitzen," meaning "to sit." I recommend: (a tub divided into two …one half is filled with hot water and the other cold. With part of the body on one side and than switching and back again in quick succession)
• Foot baths
• Visualization [relax your mind. Make sure you are warm and comfortable, and practice deep long breathing, concentrate on the rhythm of your breathing, as you breath imagine the air going in and out of the painful area (such as the bladder), As you inhale, imagine a warm glow healing the pain, and as you exhale, imagine the pain being expelled. Next imagine your pain as a red ball, now take that wipe it with your washcloth, as you wipe the ball gets lighter and lighter in color, keep whipping until the ball is white.] That was 2 examples do what suits you best.
• Trying things to distract you
o Listening to music
o Watching a movie or TV (some choose to have tapes ready for late night flares)
o work on a craft or project
o spending time online
o writing letters
o Working around the house (Do what feels comfortable to you. Don't push it.)
o Being constructive and helping others
• Venting here or to friends
• Staying positive….believe the pain will end
• Meditating (http://www.ic-network.com/handbook/meditation.html)
• Ask for help if you need it (family, friends, doctors)
• Instillations (http://www.ic-network.com/handbook/instill.html)
• AZO for Urinary Pain Relief or URISTAT
• Ask for a foot message from your spouse or partner (actually I think it is the receiving one that helps with the pain :)
• Pain meds patch
• Pain meds oral (Remember, the earlier you catch a flare and pain, the easier it is to stop and the less medication it can take to stop it. So, don't wait until you are crying and desperate... because that allows that pain cycle to get firmly started. Try to catch in early!) (http://www.ic-network.com/handbook/painmed.html)
o Oxycontin (Pain med’s are recommendations from other ICers)
• Cold water in a balloon in vagina
• Taking slow deep breaths/other breathing therapies (http://www.ic-network.com/handbook/breathing.html)
• Practice relaxing the muscles near the bladder
• Put some work into lessoning your stress
o Use art to help visualize and express your stress…you can even use it to visualize and than erase your pain
o Spend time with your pet!!
o Play with your children or with children (if you have none of your own)
o Sing (you don’t have to let anyone hear you)
o Listen to a guided relaxation audio tape to relax your body. Commonly available at book stores, we recommend the tapes by Potential's Unlimited (Barry Konicov). If you can't find those, try the Health Journey's series of tapes. [http://www.ic-network.com/shop/]
NOTE: AS WITH ANYTHING BECAREFUL….AND IN RISKY THINGS ASK YOUR DOCTOR BEFORE TRYING NEW PAIN METHODS!!!!
You aren't alone anymore, OK? :kissing: You have found a unique and wonderful source of support right here at this site. We're all in this together.
I would suggest reading as much as you can in the ICN Patient Handbook prior to seeing your urologist. That way you will already be familiar with common diagnostic procedures and treatments. It helped me so much to already be familiar with the terms and some anatomy before I saw my doctor. I didn't have to spend time asking for explanations ----- the time we get with doctor's is precious enough.
The other thing that helped me was to construct a diary of my symptoms - when they started, what treatments I had tried, when they seemed to get worse, etc. This REALLY helped my doctor and it showed him that I was serious about beating this thing.
Good luck and be sure to update us after you have seen your urologist. :)
08-19-2004, 09:10 AM
Thank you all so much for all the words of comfort. You probably understand when I say that just hearing that I am not some freak, that this is a disease makes me feel so much better.
I used to be so healthy...I cannot believe what has happened to my body in the last year. I have been under sedation 6 x times in the past 8 months for stuff relating to infertility. The Hashimotos + synthyroid makes me have heart palpitations and now this. THank you all so much. You have made me feel no alone...and that is a BIG step!!
08-19-2004, 09:46 PM
Hi Donna :hi:
Good luck on the pregnancy!
08-20-2004, 01:46 AM
I have just been diagnosed and I know how difficult that journey can be. I do find that Tylenol PM and a microwave heating pad help at night if the pain is not too severe. This is the best place to find support. I only discovered it a week ago and when I did I cried I was so happy to know someone understands what I am going through. Good luck, wendy
Hi - It sounds like IC, but diagnosing IC can be kinda tricky. Have your urine studies/cultures come back negative? The urologist may want to do a cystoscopy to take a look in your bladder. I know how frustrating it is to have such horrible pain, and have not answers (I went 5 or 6 months without a diagnosis). Go see your urologist, and be sure to tell her all your symptoms, what makes it better and what makes it worse. Be sure to mention the frequency at night, since that is a key indicator of IC. I hope you find answers, and I hope you are successful in all you are working for.
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