What causes all these problems that are so hard to live with?

[Guest guest]

What is your age? Are you on birth control? Have you had a hormone panel done?

I had docs tell me I did not have candida, but I went on the candida diet anyway and my pain cleared up. I started eating a lot of gluten and processed sugary foods and it came back. The only way true way to see if it works is to try it. Keep a food/symptom diary and see if see a pattern. You must read all food ingredient labels for this to work. Diet coke has wheat in it. Many things have corn in them. It is best to eat foods in their purest form. Coffee increase burning for me too and I love a good Starbucks!

Did you start jogging or any other physical activity that was new to you? Physical therepy works for some too.

It is very frustrating trying to figure out how it starts.

I went on the birth control pill at age 38. It was a very stressful period of my life as well. I was told I had BV and took antibiotics for 9 months. Then I developed a rare yeast. Then I developed adrenal stress fatigue..it seems one thing leads to another! I was tested and my testosterone and DHEA were on the LOW side of their so called "NORMAL" chart. Chronic fatigue can lead to low FREE testosterone. I was also tested on borderline gluten intolerant. I can't eat ice cream or drink cow's milk either without my stomach bloating out like a balloon. The over the counter creams did not help either. They made things worse. I also was a sales rep at the time and had a lot more office days then normal..so maybe sitting on my butt contributed to it too. I

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[Guest guest]

I used to be very health. No health problems till November of 2005.

Here is my story in a nutshell.

• November2005 –A urinary track infection that was cured but

started going to the bathroom more often than before but it was not

very noticeable at that time, no pain.

• August2006-December2006- period of time when I had to go to

the bathroom very often when my feet got cold(main symptom) , didn't

matter if It was summer or nor…2-3 days a week when I had to go to

the bathroom more than 20 times a day(not at night). NO pain.

• January2007-April2007- Pains, burning (vulva) started around

that period of time .I had 2-4 days when I was in pain and pressure

coming the urethra as well as urinary urgency( not at night)

• May2007-Present- The condition progressed to the point that

since May of 2007 I have been in pain 7 days a week, burning, pain

(Vulva) urinary frequency and urgency 7 days a week as well( nights

were ok). Cold feet make the symptoms worse.

What has been done:

June 2007-June 2008

• June 2007- Gyno Appt – Pap smear done and checked for various

problems Stds etc- ALL the results were negative

• June2007- Urologist Appt. – The doctor thought it was stress

since I didn't have to go to the bathroom during the night. I

disagreed. I ad CT Scan-The scan didn't show anything abnormal

• August 2007-Urogyno Appt.- new doctor " assumed " I had

Interstital Cystatis based on the symptomps. He did installations

till the end of 2007but there was no relieve. He also noticed that I

might have had Lichen Sclerosis.( I was going back and forth each

week)

• Prescribed Gabin didn't help

• January2008 –Another Urogyno consultation( different doctor)

Urodynamics Test- Her conclusion was that I don't have Interstitial

Cystatis but Pelvic floor dysfunction( assumed , not sure) prescribed

Cymbolta didn't help. Vesicare didn't help.

• January 2008- Dermatologist – Lichen Sclerosis confirmed by

biopsy. Steroid treatment gave minimal improvement.

• January2008- Gynecologist-checked for abnormalities and

ultrasound preformed ….Everything turned out normal

• January 2008- May 2008 going back and forth to the

gynecologist, urogynecologis and dermatologist – No improvement .

• May 2008- new Gyne seen regarding Lichen Sclerosis ….

Clob , Testosterone and Estrace- No improvement

My observations

I have lichen sclerosis and urinary urgency and frequency. I don't

know if the conditions overlap each other or one is the result of

the other???

The skin is often inflamed, swollen, burns and hurts . There is

discomfort coming from the urethra and pressure.

I feel a bit better when I don't eat carbohydrates or things with

gluten …..Cranberries don't help.

I feel worse when my feet get cold (which happens every day) I have

poor circulation in my feet or perhaps pelvic area too.

My questions :

• Does anyone have similar problems? Steroids, T and E have not

been the answer for me .

• DO I have Celiac Disease or Chronic Candida? How would I

know? I have heard that the tests are not very reliable.

• Why cold feet = more trips to the bathroom + more pain in

vulva?

I am puzzled and have not found the answer to my problems yet.

Thank you.

[Guest guest]

Hi,

DO I have Celiac Disease or Chronic Candida? How would

I

know?

You must have both.

If you have reoccurring candida, you have a candida

problem. Candida and Gluten cross react. They go

together.

There is no such thing as borderline Celiac. Either

you do or you don't. There are only borderline tests.

I have heard that the tests are not very reliable.

The blood tests are not reliable at all. The stool

tests at Enterolab are foolproof.

I am puzzled and have not found the answer to my

problems yet.

Maybe you have. )

I don't know why the doc did those bladder treatments

for IC without looking into your bladder and

diagnosing it as IC?

Arline

[Guest guest]

Among other things you may have a cystocele - bladder prolapse. Ask your gyn to

do an exam while you are standing (on your knees) because it does not always

show up when you are examined lying down. It happened to me. I knew there was

something wrong but the doctor did not discover it because he always examined me

while I was lying down.

There are various ways to correct it and if you do have one that would take care

of the urinary frequency. Also you do not have the urinary frequency at night,

possibly because you are lying down and there is no pressure from your bladder.

The cold feet could be a result of poor circulation which should be checked.

Ora

[Guest guest]

pelvic floor contracture and pudendal neuralgia, likely. Frequent urination during the day as in interstitial cystitis, but not so much at night is a symptom of pudendal neuralgia. Cold feet are a possible symptom of nerve issues. Also, when we get cold, we contract our pelvic floor which makes our muscles spasm which also causes pain.

Where do you live and have you looked into physical therapy?

love, Molly

Also, you may consider joining the group happypelvis to learn more about PT.

What causes all these problems that are so hard to live with?

I used to be very health. No health problems till November of 2005. Here is my story in a nutshell.• November2005 –A urinary track infection that was cured but started going to the bathroom more often than before but it was not very noticeable at that time, no pain.• August2006-December 2006- period of time when I had to go to the bathroom very often when my feet got cold(main symptom) , didn't matter if It was summer or nor…2-3 days a week when I had to go to the bathroom more than 20 times a day(not at night). NO pain.• January2007- April2007- Pains, burning (vulva) started around that period of time .I had 2-4 days when I was in pain and pressure coming the urethra as well as urinary urgency( not at night)• May2007-Present- The condition progressed to the point that since May of 2007 I have been in pain 7 days a week, burning, pain (Vulva) urinary frequency and

urgency 7 days a week as well( nights were ok). Cold feet make the symptoms worse.What has been done:June 2007-June 2008 • June 2007- Gyno Appt – Pap smear done and checked for various problems Stds etc- ALL the results were negative• June2007- Urologist Appt. – The doctor thought it was stress since I didn't have to go to the bathroom during the night. I disagreed. I ad CT Scan-The scan didn't show anything abnormal• August 2007-Urogyno Appt.- new doctor "assumed" I had Interstital Cystatis based on the symptomps. He did installations till the end of 2007but there was no relieve. He also noticed that I might have had Lichen Sclerosis.( I was going back and forth each week)• Prescribed Gabin didn't help• January2008 –Another Urogyno consultation( different doctor) Urodynamics Test- Her conclusion was that I don't have Interstitial Cystatis but Pelvic floor

dysfunction( assumed , not sure) prescribed Cymbolta didn't help. Vesicare didn't help.• January 2008- Dermatologist – Lichen Sclerosis confirmed by biopsy. Steroid treatment gave minimal improvement.• January2008- Gynecologist- checked for abnormalities and ultrasound preformed ….Everything turned out normal• January 2008- May 2008 going back and forth to the gynecologist, urogynecologis and dermatologist – No improvement .• May 2008- new Gyne seen regarding Lichen Sclerosis ….Clob , Testosterone and Estrace- No improvement My observationsI have lichen sclerosis and urinary urgency and frequency. I don't know if the conditions overlap each other or one is the result of the other??? The skin is often inflamed, swollen, burns and hurts . There is discomfort coming from the urethra and pressure.I feel a bit better when I don't eat carbohydrates or things with

gluten …..Cranberries don't help.I feel worse when my feet get cold (which happens every day) I have poor circulation in my feet or perhaps pelvic area too.My questions :• Does anyone have similar problems? Steroids, T and E have not been the answer for me .• DO I have Celiac Disease or Chronic Candida? How would I know? I have heard that the tests are not very reliable.• Why cold feet = more trips to the bathroom + more pain in vulva?I am puzzled and have not found the answer to my problems yet.Thank you.