new and confused

[wisewol]

Hi well I am one of the many it appears newly diagnosed and very confused, Here is my story, I will try to keep it brief.
Having moved to the USA last march (08) I found my periods getting heavier and heavier and having tried many things in the uk including birth control etc the decison was made to go ahead with a partial hysterectomy done lap / vag. Now this is where I believe my problems started. after the hyst I had trouble passing water and started getting pain, I assumed as everything was settling down so would it this was sept 08, everything seemed ok is and although it still hurt to pass water occassionally I just tried not to think about it, forward just 5 months when a trip to the emergency room fo severe abdominal pain showed up 2 large ovarian cysts on my lonely ovary and an irritated appendix, had both the appendix and cysts removed leaving ovary in place, found out 1 week later the appendix had a carcanoid tumour in it, I have been very lucky it was caught so early. After this surgery is when the real problems started. After the catheter was removed I had trouble passing and was referred to a urologist. several weeks later he did a cystoscopy in his clinic and noted an inflamed area in my bladder, he biopsied it with no diagosis and basically gave up. Unfortunately I was then getting more abdominal pains and my general surgeon and gynae decided to take me to surgery for the 3rd time in 8 months !! after a much more detailed cystoscopy under a GA and extensive adhesions removed a diagnosis was made if IC, this was just 3 weeks ago. It has taken till now for me to accept it and I am finally trying the diet but finding it very hard as I already have a restricted diet due to a dairy allergy and diabetes. The final surgery also gave me terrible probs with passing water and I had to be re cateterized after surgery as my bladder was so full and I just could not pass it.

I really believe that having 3 surgeries has brought this on and I have a couple of questions for the experts out there.

1. My pain is mostly as my stream finishes and my bladder contracts is this a true symptom ?
2. I have a lot of pressure type pain on my lower left side especially if my bowel is full, the largest area of inflamation was on that side of my bladder so could this pain be part of IC
3. This is a silly in many ways but chinese food is my favourite, will I ever be able to eat it again ?????:mad:

Ok well if anyone is still actually reading this massive post , I really appreciate your time and any feedback would be gratefully received.

Sue
44 yrs old
Married wit 1 beautiful 21yr old daughter who I so very proud of.

[SharonA]

:welcome: to the IC Network, Sue. :):):)

1. My pain is mostly as my stream finishes and my bladder contracts is this a true symptom ?

There are many here who say the same thing and feel the pain is caused because, like a balloon that is deflated, when the bladder is empty, the sides seem to come together and is very painful.

2. I have a lot of pressure type pain on my lower left side especially if my bowel is full, the largest area of inflammation was on that side of my bladder so could this pain be part of IC

It might be caused by the pressure of the full bowel on the full bladder. Think of it this way...That same balloon is completely inflated and you decide to put pressure on it by squeezing on it's sides. Eventually something has to give and, because it is a balloon, it eventually pops. I don't think your bladder will pop, but you get the idea, right?

3. This is a silly in many ways but Chinese food is my favorite, will I ever be able to eat it again ?????

There is every reason to believe that you will once again enjoy Chinese Food. What we as ICers have to watch out for mostly is MSG, Soy and Soy Sauce, plus that hot mustard and wasabi. Those ingredients are a major part of Chinese Food. If you go to a Chinese Restaurant, talk with the owner and chef and explain that you cannot have MSG in your foods nor can you have soy. Ask them what they serve that might not have any of these two things in it. Or, you can ask if they will make your meal fresh and without them. I also have to ask that there be no onion or garlic in my food. You may have to order off the menu if at a Chinese Buffet, but your food will probably taste even better because it is fresh. There usually are many spicy hot dishes on the menu. It is probably better for you to not order them. Many of us can not tolerate heavy hot spices. Like me, for instance.

[valerie michele]

"I really believe that having 3 surgeries has brought this on"

I am all new to ic too. Last November I passed a large kidney stone and my bladder has never been the same since. I have read that shock or trauma to the pelvic area can also cause this. Surgery to the pelvic area, car accidents, kidney stones too. The pain I have is in the lower left abdomen. The same side that the kidney stone passed through. I am very frightened because I still have two more kidney stones in that same kidney. To compound the problem I was drinking large amounts of freshly squeezed lemon juice to keep my urine acidic to hopefully break up the remaining kidney stones and to stop the formation of new ones. I was told to keep my urine as acidic as possible and now this. I really hope you feel better soon and I think you are right to think surgery/shock and trauma to the pelvic area contributed to your ic. The very morning of the day my kidney stone went through I had tobasco on my home fries... like i always did and never had any pain. It all completely changed that night after the stone went through.

[Briza]

Hi Sue,Val:) :hi:
welcome to the board! I am sorry for what brings you here but you have definitely found the right place for the most understanding and compassion you will find anywhere, as well as much good advice and suggestions based on the experiences of the thousands of members of this board who have suffered the same as you, but even more importantly found success with diet, meds, treatments, self help stuff, which the majority of us do!

Sue, what Sharon responded to your post is what I and many others would have responded. Her responses reflect the experiences of many here. Such great responses she gave :) I really don't have anything to add, as I would say pretty much the same as she did!

Val, yes, many of us can pinpoint a specific food or meal that we previously had eaten without problem many times, and then that very food/meal sticks out like a sore thumb in our minds as being what made us very aware that there was a problem going on and possibly being diet related (as a trigger for symptoms, not necessarily a cause of IC). My ahhh haaa:idea: diet moment was when I ate some salted peanuts from vending machine at work.

Wishing you both the best and hope you find the answers you are looking for here and also hope that you have a good dr or team of drs to support you and assist you along the way. There are better days ahead for the vast majority once starting on the road to treatment and recovery and hopefully remission!:)

[NancyB]

Dear Sue -

You might want to get your estrogen levels tested to see if you have low estrogen as a result of perimenpause and/or your surgery. A lot of your symptoms can be the result of that.

Hope this is helpful to you.

NancyB:)