Just IC or something else?

[princesscm99]

Hi everyone. I've been lurking and infrequently posting on here since February when I had the onset of my symptoms.

It started with a very intense UTI, and I was given Septra which had no effect. By day 3 the pain had become unbearable and had spread to my kidneys and put me in the hospital. After major antibiotics the frequency and urgency died down quite a bit, but intense pelvic pain remained. I was tested several times for infection after this, and always came up negative.

I found a urologist who did a cystoscopy with hydrodistention and he diagnosed me with IC at the beginning of May. I had pinpoint bleeding all over the surface of my bladder, and could only hold 500cc under anesthesia.

The treatment after that was 6 weeks (twice weekly) of heparin cocktail instills, which completely removed all urgency and frequency by treatment #3 but I have been left with the intense pain in my lower right pelvic area.

I went back to my PCP and she had an ultrasound done (no abnormalities), and a CT scan (no abnormalities), before referring me to a gynecologist to explore endometriosis as a possible cause.

The gyn did a diagnostic laparoscopy and found large adhesions attaching my large and small intestines together and to my pelvic walls. She removed these and everything else was perfectly normal. Problem solved right?

Hardly. It has been a month since the lap. and the pain in my lower right pelvic area has not decreased one bit. It hovers between uncomfortable and unbearable and is especially positional - I can't lay on my right side at all. I have been practicing the diet since March and have not identified any foods that cause me pain besides caffeine drinks and alcohol and I eliminated those completely at the beginning.

I am out of doctors and out of ideas. The gyn. says she thinks the pain is all caused by IC and that I should search out a pain management clinic to learn to live with it. My urologist recommended the Interstim device, but I have ruled that out as it doesn't seem to have much effect on pain in most people. My PCP is stumped and has no recc. for me.

I am afraid that there is something else going on as the pain is definitely on my right side - not where my bladder is. Also, the urologist told me that IC is never positional unless you have Hunner's ulcers which I do not. Add to that the fact that I am not diet sensitive, and I am very confused.

Any ideas or help?

[Comer6]

I too have been lurking - I have been reading for days, weeks even and one thing that everyone seems to agree on is the need for pain medication! I fight it and then when I finally give in and take I am so relieved. I take Tylox (tylenol with codeine, 500 mg) and it does the trick for me.

Good luck.

Vicky

[NewLife]

Perhaps you could get evaluated for pelvic floor dysfunction and also see a neurologist?

[Mothergoose]

When I started the diet, I elimimated foods, but I was flaring all the time so I had a really hard time figureing out which food bothered me, I thought only foods that cause severe problems, bothered me. I now know I was wrong their are lots of foods that only bother me somewhat.
I found I really had to eliminate all foods that even remotely may cause a problem, and then re introduce a new food one at a time slowly, this way I was able to find the foods that bothered me, but not really bad, but bad enough to keep me in a constant flare.
I am not assummeing you didn't do the diet right, but some people don't realize food can bother you to varring degrees, so if you are eating something that only bothers you a little, but eating it all the time, it can be the problem.

[princesscm99]

Thanks. I did bring up the topic of Pelvic Floor Dysfuntion with my GYN after the lap. and she said that it would be almost impossible for me to have PFD being so young and not having any children.

I was a bit surprised to hear her say that, but obviously I'm not a doctor so I didn't argue.

[mbhbarb]

Hi. I also have pain in the lower right part of my pelvis. In addition to IC I have IBS and endometriosis. The endometriosis has caused adhesions that have not been removed. My bladder and cervex are attached, my uterus was attached to my intestines, and I belive my intestines are also attached to my bladder. Like you I have undergone much testing without discovering what is causing my "spot pain." But I can tell you some things I have figured out. First, I can feel the pain in my bladder but I am pretty sure it does not originate there. I think this because once when I was getting a sigmoidoscopy, the doctor passed the sore part with his instrument. I think my pain often originates in the intestines or colon and because of adhesions, the intestinal spasms are transferred to the bladder. That translates into the moderate to severe lower right pain that sometimes shoots down the urethra and causes what feels like bladder symptoms.

The other idea came as a result of my hydrostension cystoscopy - there is an abnormality where one of the ureters enteres the bladder. My doctor said that could cause localized pain.

I share all of this to acknowledge that the source of pelvic pain can be difficult to discern, to let you know you are not alone in this, and to ask you if you ever find out what is causing that pain to please share it. I'd like to find out, too. One thing that does seem to help me avoid my particular pain is to be sure I take a fiber supplement every day.

I hope you find an answer and some relief soon. barb

[carla_2004]

It sounds like you can certainly explore appropriate pain management. You also might want to schedule an appt. with the Gyn for a pelvic exam and to discuss why the pain is still there.

The field of pain management is pretty complex. Sometimes our brain perceives pain along a given pathway, it becomes well worn, and even persists in the absence of a physical reason. The pain is valid and needs to be addressed. Thus said, I would follow-up with the Gyn to rule out a physical cause such as a cyst, other adhesion, etc.

Good luck!

[ak49]

Pain location can differ with different people. My pain radiated up my left side and into my back. Initially, I was diagnosed with ischemic colitis, then with a partially obstructed bowel. I think it was a combination of Irriatited Bowel Syndrome and IC, espicially after four CTs with contrasting dye. One of the side effects of the dye is UR inflammation. I had a great surgeon, who said no surgery. I don't know what it is, but its not a blocked colon or bowel. Watch your diet, up the fiber, use heat and gentle walking helps me. Hope it works for you.

[Mothergoose]

I have had lower right pelvis pain for years since my 20's. I was haveing a procedure done by a uro who while awake he put a camera in my bladder and then up the ureter to kidney, he was taking exrays and injecting dye to see if he could find a kidney stone to retreive. when he went from bladder to ureter, it caused the same lower right pelvis pain, but that was not the problem then so he wasn't interested in it, he did find the kidney stone but he did find that the dye leeked out a hole in the ureter into my ab. never said anything about that either. I don't see this uro any more.

[ICNDonna]

It's not unusual to have IC pain on the right side. Fortunately my IC pain is easy to identify because it's definitely in the bladder area and down the insides of my legs almost to the knees.

I do think it would be a good idea to stick with the diet for at least six to eight weeks. It just might be something you're ingesting that's keeping the pain going.

Donna

[nottoc4]

The hidden ingredients in foods is what trips me up. If it's packaged and processed,it has soy flour or soy oil,vinegar or citric acid or dye. All of the above cause me frequency or pelvic burn or urine burn or Urethra spasms. I have a small notebook and every day write down everything that goes in my mouth including medicines and write down every symptom I have and highlight it. It is amazing how after a few days or even weeks I can go back and figure out what the heck was bothering me. In the back of the notebook I write down every food or med that causes me a problem.I am presently on Elmiron and have had 9 bladder instillations with an Elmiron "cocktail" of ingredients. I stick to the IC diet and and take no pain meds except for my arthritis. I was diagnosed 3 months ago.I feel very fortunate that I have had such quick relief from most symptoms, but my Doctor really stressed how important the role food would play in relieving the symptoms. He was right! It's not always convenient and I have had to be creative in fixing meals that I could eat and not penalize my hubbie too much. It's worth the effort to me. Jo