A newbie,endo & IC! Bad pain!

[Jacqui P]

Hi All,

My name is Jacqui and I am 20 years old. I am at university and have just started my training to train to be a Peadiactric Nurse.

I registered on this site a couple of years back when my drs and myself thought I had IC.
Two years ago I had a cystoscopy and bladder stretch and the urologist who did it told me my bladder looked fine but the biopsies showed inflamation!
I never got a follow up appointment to see the urologist again and left it as I am fed up of getting poked about as I have extensive endo and suffer horrendous pain with the endometriosis.

This past year I have reoccuring UTI's, Kidney infections but there has been alot of times when I have been to see my GP as I thought I had another urine infection and on dipstick testing my urine shows blood and protein but then when my GP sends the sample off to the lab the majority of samples come back showing no infection even though I have blood and protein on dipstick and have all the signs and symptoms on a urine infection.

My GP is wonderful and I would be completely lost without her. She always takes me seriously and never fobs me off. She feels that endo causes alot of my pain but she really feels that I have IC aswell.
She went to a conference a few weeks back given by a Gyne who has a special interest in endo but he spoke about IC to and said how common IC and Endo are together.
She says I have alot of sugns and symptoms of IC and I spoke to her again today and she is going to refer me to this Gyne who gave the conference that she went to as she thinks he will be a good guy to see as he seems very clued up on both endo and IC. So she is sorting out a referal to this Gyne for me, apparently he works with a multidisiplinary team aswell.

At the moment I have a wonderful endo specialist who I have been seeing for 3 years and I really trust him but I feel very stuck at the moment and I am really struggling to deal with the pain.

I have dreadful burning when I wee at the moment, I am having to go to the toilet frequently and at night my sleep is disturbed as I am up and down to the toilet. I am in dreadful and very severe pain in my lower pelvis, pubic area and vagina and I am really worrying as my pain is getting worse and I feel so stuck as theres nothing I can to do stop it. I have just started a new BCP so hoping that will kick in soon.
I really do not want more surgery at the moment, I have had alot of laser and excision surgery for the endo but I have just started at University in October and have just finished my first term at uni and I really do not want to have surgery at the moment. I am at university training to be a Peadiatric Nurse.

Is a common for IC Sufferers to have blood and protein in their urine? Any ideas I can do until I see this new Gyne? I am reallystruggling with the endo pain and the bladder problems pain! Do any of you wake up in the night with your pubic area in spasm and the only way to shift the spasm is to get up and go to the toilet?

I look forward to getting to know you all. Thankyou in advance for your help and support.

Take care and best wishes, Jacqui P xxx

[work it]

Jacqui, wow I am so sorry for all that you have been through. I usually show a lot of blood in my urine when I have a UTI. I also take the over the counter medication AZO for some releif with frequency until I can get into the Dr office. I hope you are able to find some relief soon, keep us posted on your progress.

[Annie2]

Hi Jacqui,

I am so sorry you have suffered so much! It sounds as though you are being referred to an excellent doctor who is quite knowledgeable of IC. Hopefully, you will soon have answers to your questions and will receive appropriate treatment.

In answer to your question regarding blood in the urine, yes, it is fairly common for IC patients to have blood in their urine. There are a couple of tests used to diagnose IC. One is the cystoscopy with hydrodistention done in a hospital setting under anesthesia. It sounds as though that may have been the test you had done previously. The other test used by some urologists is the potassium sensitivity test. This can be done in a doctor's office and there is no need for anesthesia. During this test the patient is catheterized and solutions are instilled into the bladder. The first solution is merely sterile water and should make the bladder feel full but not cause pain. This is drained and a second solution of potassium chloride is instilled in the bladder. The patient then describes the degree of discomfort to this solution. If the bladder lining is damaged (as is typical of IC), the patient will feel burning and discomfort. The potassium solution is then quickly drained and a soothing lidocaine solution is instilled to stop the reaction from the potassium and numb the bladder. This test takes only a matter of minutes and requires no anesthesia. Neither test is 100% accurate so it is a matter of the doctor's preference as to which test is used to diagnose IC. You might want to ask the new doctor if the potassium test would be appropriate for you as it is rather quick, requires no surgery or anesthetic and recupperation time is minimal.

In the meantime, one of the best self-help tools ICers have is the IC Diet. I would recommend you put yourself on it immediately. For the vast majority of IC patients, the diet brings a great deal of reduction in symptoms. You will find information about the diet and descriptions of the diagnostics tests as well as info on treatments and frequently used medications in the IC Patient Handbook on this website at http://www.ic-network.com/handbook/ This is an excellent resource and I highly recommend you spend some time reading it.

Good luck to you! Please keep posting and let us know how you are doing. We're here to offer you support in any way we can.

Annie

[Babs RN]

Jacqui,
Welcome to the ICN and congrats on your choice of nursing. I have been a nurse for 12 years. Also had endo and now have IC. Just wanted to say hi and that all of us are here for you.

Hugs,
Barb :welcome:

[Sarojini]

Just wanted to :welcome: you to our site... and yes, with my IC, I often show blood in my urine even when I do not have an active infection. That is pretty common in IC patients, actually. So you are not alone at all.

I hope you're able to find some way to control the pain... have you checked out the self-help suggestions in the patient handbook at http://www.ic-network.com/handbook? Also, you may want to talk to your doctors about prescribing something to control the pain... you shouldn't have to suffer with severe, debilitating pain for an extended period like this!

Good luck, and keep us updated!!!

[traceann]

Hi Jacqui! I had to say hello too, and say welcome to a really wonderful place. Sounds like you already have been given great advice, so I will just say, hope to "see" you around and keep us posted! I hope you are feeling better soon!!!

Hugs,
Tracey :)