View Full Version : Ku's IC Management Diary.
11-20-2011, 02:56 PM
I thought it might be helpful, both for myself and others, to start keeping a diary here noting improvements, treatments tried and anything else that comes up so people can see what an IC journey looks like from my POV. If you have any comments, helpful tips or experiences please feel free to share them with me here too :)!
Status: Unconfirmed Official Diagnosis
Currently: Still in flare
History: Repeated UIs after serious kidney infection. Blood and white blood cells found in urine but no infection found in the labs. 1 year undiagnosed, 3 months constant symptoms, 4 weeks suggested diagnosis (via urologist).
Constant abdominal pain: An Achey / Pressure /Bruised feeling around lower back and sides (left usually worse). Spikes of sharper pain in the groin area randomly throughout the day.
A near constant 'warm' or tingling feeling around the urethra. Burning or uncomfortable clenching sensation after urination.
At its worse I also have pain under my ribs (diaphragm area) and around the tops of my thighs.
I can rarely be stood for any true length of time (15mins perhaps at most) before feeling uncomfortable in the groin area or start to get abdominal pain.
At a flare's worst I feel completely drained, energy levels are often so low that doing small tasks such as the washing up are massive achievements. I can rarely be awake longer than 6 hours at a time, taking daily naps that last between 1.5 and 4 hours.
I can feel nauseous, especially in the morning, for no reason. This could be a side effect from the regular anti-inflammatory pain killers.
I get sore throat's in the mornings for no apparent reason. I can also sometimes wake up with a headache. These could be a sign of night fever, side effect from pain killers, or just my body protesting that something is wrong (throat and head are weak points for me normally).
11-20-2011, 02:57 PM
My vaginal muscles are quite seized and I now find wearing tampons very, very uncomfortable.
A few days before I start my symptoms are always worse. Before everything became constant I noticed that the 'UI infections' I got always seemed to appear around this time. The pain is quite severe, a throbbing hammering sensation on my sides with the spikes sometimes so bad they take my breath away!
I have had pain so bad during an un-treated pre-menstrual flare that I thought I was having contractions (despite not being pregnant) and was rushed into the emergency room.
Sex and Contraception
My libido started to drop off several months ago and now is non-existent, I am unmoved by even the steamiest of True Blood novels xD.
My abdomen, tummy and groin are very sensitive to the touch and cold hands near them is like an electric shock, not sexy at all!
As with tampons even fingers have a hard time, I feel clenched inside. Penetration hasn't even been attempted!
I am on the copper coil and am half convinced that it is causing me trouble, if all my muscles in the lower half of my body are becoming contracted it stands to reason that a little bit of plastic popped there will be causing some sort of interference. Many reports I have read also report libido drops due to the coil also. I have taken the decision to have it removed and will keep you posted as to any improvements I see!
Things are difficult between myself and my partner, he is finding it very hard to be celibate since I have no drive and feel so uncomfortable all the time. I have a lot of guilt over this, feeling I should push myself to help him feel less frustrated and fear our intimacy is slipping away :(
11-20-2011, 02:58 PM
Hot water bottles. Mine originally cost me £2 (primark) and has a soft fluffy cover. It stays warm for around 4 hours. I have a large handbag it fits into and am seriously considering investing in a mini-bottle to keep in my handbag permanently. It is one of the few things that give me instant and lasting relief (for as long as the bottle stays warm)!
Hot baths. Same as above. I feel wonderful when in the bath but I do find prolonged soaking makes me quite stiff after I get out. The relief from a good soak (20mins or so) lasts a few hours.
Sleeping. Though I hate to loose the time in the day I have found that when the pain gets bad and I am feeling low a nap (in 90min cycles) will nearly always allow me to wake up feeling refreshed and in less pain. They enable to get on with the rest of the day/evening.
Supplements. I take Quercetin with Bromelain twice a day with food. I think it has made a small improvement though it is a little too soon to tell!
11-20-2011, 03:01 PM
The IC Diet
I have been on the IC diet (also don't eat meat unless its organic due to moral reasons. Have been vege for years which is cheaper than organic meat!) for about a month now. I only eat from the green lists. It doesn't seem to have helped stop the spasms but I think it may have lessened them slightly. It has certainly made me feel a bit more energetic.
Favourite IC Foods:
Vanilla Fudge (Tesco's own £1.25 per box)
Potato waffles (birdseye / Tesco's own)
Quorn 'bacon' s strips
A sizable helping of fresh vege (most of my meals are so dry and plain that adding a nice amount of crunch and taste via vege has been a great alternative)
Cheese on toast (Mild cheddar)
3 Things I miss the most:
Dr Pepper and other fizzies
Fruit (Raspberries are my favourite food!)
Sauces (i.e. mayo, vinegar, BBQ sauce)
Currently saddest about: Missing out on Christmas treats!
11-20-2011, 03:01 PM
I take Ibuprofen when I get sick of the pain, though for the most part I try not to take too much of it as I can often feel quite low while on it and I have been taking it almost daily for months so am trying to avoid stomach ulcers! I have found one tablet every 4 hours helps.
Co-codomol. (Paracetamol and codeine) I take this when things really are too much and I cannot cope, when I need to go and do something and cannot face the pain at the same time. Occasionally I will take one so I can sit through a night out with friends, a trip to the cinema (or anything that doesn't involve sitting on my chair in the house) without the constant niggle of pain.
Ditropan (muscle relaxant): I was put on this less than a week ago when I, quite literally, cracked. I was miserable, the pain was barely controlled and I felt like a zombie most of the time. It is a relaxant that targets the bladder and out of everything I have done to help myself this has been the most effective. It helped almost instantly. I was even almost completely pain free for a few days (spoiled by what I think maybe the onset of my period!). I no longer feel the need to sleep all the time and have the energy to actually do things! It has quite simply taken the edge off and i've had to be careful about wearing myself out because I feel able to push myself to do things (like packing to move house) and sometimes come out the other side exhausted and in pain again!
11-20-2011, 03:02 PM
Things I have done to help my mental well being: (to be added when I have the time!)
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