Interstitial Cystitis, maybe

[chibelle]

My doctor has told me that I probably have Interstitial Cystitis, but is not sure. But some of my symptoms don't make sense with this diagnosis. For instance, the pain I have been feeling is in one specific spot on the left side of the pelvic/abdominal region and is not in my bladder. I'm not exactly sure where it is anatomically, but I'm wondering if it could be around a female organ. When I push on this spot, I can feel pressure inside, and when I stand up, I can feel the blood rushing to that area and hurts. Many doctors thought it was a UTI and gave me medication and none of which worked except for one, Sulfameth/Trimethoprim. I had all the symptoms of reoccuring UTI, yet doctors kept telling me the wrong thing about whether the test was posititve or not. Because they assumed it was one, without even looking at the test. I also have a twisted colon on the left side as well and sometimes when my bowels are too full in that spot, the pain and urination is more frequent. I'm not sure if that has anything to do with it. I'm doing all the right things, water, rest, no acidic food, keeping the area clean, etc. so I already know that. I'm kind of tired of people stating the obvious, so if you have something valuable to say then that would be great.

[MSKshelly]

Most people who have pelvic congestion syndrome have had several children, HOWEVER I MET ANOTHER YOUNG LADY WHO NEVER HAD ANY CHILDREN, ALSO HAS INTERSTITIAL CYSTITIS LIKE I DO, AND SHE HAS PELVIC CONGESTION SYNDROME BADLY....
They said on exploratory surgery it was very obvious with her, and she is only 24 and has not had any children. ( I have contacted the Female Patient and ask them to consider doing an article on it since I can find soo little info on it.)

Unfortunately this could be why your doctor has not picked up on it but you can still have it!!  I would really still encourage you that a Pelvic Pain PT might be able to help you more the anyone else.  I also just bought a new book called Heal Pelvic Pain, by Amy Stein, it is more for pelvic floor dysfunction but does help to rebuild the pelvic floor safely... I think the book is a good companion, to use a long with getting a pelvic pain PT!

Hope that helps you!
Shelly

[chibelle]

One question for you shelly, isn't PCS caused after becoming pregnant? Most info I've been getting says that. Well I've never been pregnant before so that confuses me a little. I also notice that lately, when I stand up I can feel the blood rushing in my head and the left side of my pelvis throbs for a minute. It also really throbs when I have intense sad or angry emotions. I have to stop myself when I think of things like my mother passing away because my urine will have blood and gets cloudy.

Thanks MD Burks for stating the obvious, It doesn't sound like you read what I put at all...

[David A Burks, MD]

Hi,  To meet the definition of Interstitial Cystitis you have to have urinary frequency, urgency and pain/pressure/discomfort in the bladder/urethra or vagina.  Most patients with IC have pain associated with bladder filling and your urine culture must be infection free.  You can have abdominal pain from various problems, but if it is not associated with bladder filling or voiding it probably is not IC. Colon problems can cause abdominal pain on the left side.  You should probably see a colon specialist to rule out irritable bowl syndrome.  You'll probably need a CT scan.  If these tests are negative, you could have IC and will need to see a Urologist or Urogynecologist who specializes in IC.  Good Luck.

[MSKshelly]

Chibelle,
  I am glad I was able to help!  Hang in there. Honestly if you get to a good PT, you might get a new lease on life!!  I hope so, and I hope that this information results in you getting the treatment you need!

aprila,
   Thanks for your comments!
I have a great urologist and though he has not done the urodynamics, which is what it sounds like is what they did, I have MSK with both kidneys full of stones so they frequently have IVP's these also check my flow etc. and it is OK>.,he did an extensive exam too since I told him my bladder dropped but they couldn't see it in a normal pelvic.. honestly he did a pelvic and made me stand so he could check... no fun and embarrassing honestly, (made my IC flare horrilbly), but he was able to tell I did not need surgery.  Only my urethra is prolapsed.  I do get a lot of urethral pain and he does have to dilate it about once a year.

MY bladder also shut down and I had to self cath for quite a while.  He put me on flowmax and that has "kept things moving".  Though it is FDA approved in men,he has found many women like me who can not go or it takes a long time etc, the flomax helps to relax the syfincter (sp) so that I am able to go without a problem.  I can not go off the meds. though.  You might consider asking if he would let you try this?

Hope you get some relief soon!
Shelly

[aprila]

Hi, I am so sympathetic to you, I too have been suffering since March with the same symptoms as you describe and so far I have been through a lot of investigations and had numerous people look at me.  Ranging from gynaecologists (as I had a hysterectomy nearly 5 years ago, could have been a problem from that), numerous, xrays, mri, ct scans, constant antiobiotics and finally I go my doctor to agree with me that I needed to see a urologist..................gasp, its been a frustrating journey and painful to say the least.  Sex is out of the question as is standing or prolonged walking is impossible.  I am constant discomfort and I cannot seem to get my point across to any physician or surgeon.

Today I went to see a urologist and at first he poo pooed it all and said because I had back surgery it was probably nerve damage and indicated that there was possibly little that could be done.  Then he examined my insides, I told him the pain was on the left side of me and low pelvic pain, radiating to my left hip and burning sensation pretty much all the time.  He said I looked fine !! Then I burst into tears and really felt I could not go on anymore with it, this is private health too !  He then performed a peak flow urine test, which showed that it took nearly 2 mins for me to empty my bladder and he said my output was appauling !!, he has now agreed I have a problem with my bladder and he is going to operation in January to stretch my urethra, something I have had done before 3 years ago.  Whilst out he is going to check the position of my bladder as I feel it has slipped into my vaginal cavity as after the hystrectomy there is more space for internal organs to relocate !!  So I will now hopefully get to the bottom of it, 9 months on !!

Have you had any such tests carried out?  To be honest I think sometimes we know about our own bodies and after 17 operations in 5 years I consider myself to be an expert.

Good luck sweetie, just dont give up until you find someone who takes notice........X J

[chibelle]

Thank you for your support. These symptoms of PCS sound very similar to mine. It makes sense because my pain feels connected with blood flow and stretching or using those muscles. It is really affecting my life right now, and sometimes I just feel like I can't handle it. Sometimes it feels better to hear from someone who isn't a doctor.

[MSKshelly]

I have been diagnosed with Interstitial cystitis, however, the pain you describe, sounds more to me like my Pelvic Congestion Syndrome symptoms.  PCS is like varicose veins in the pelvic region.  The pain increases when your on your feet a lot, or if your constipated or have hard bowel and strain etc.

Because I have IC, and also MSK with both kidneys full of stones, and chronic infection.  The symptoms of PCS were missed until I was soo bad during one CAT scan that they could see the blood vessels enlarged on my left side.  This condition is usually hard to diagnose since when you lay down the blood flow decreases to the pelvic region and off course all CAT scans and MRI's are done laying down.  I was really blessed to finally have found this.  MY doctor's wanted to do a hysterectomy but a specialist my GP sent me to explained that unless they treat the veins this will not always solve the problem.  I was blessed to find a Pelvic Pain Physical therapist that treated both IC and PCS, she taught me to use the lymph system to move the blood flow out of the pelvic region when the pain starts.  This really helps.  She also diagnosed that I had PFD, and to the surprise of my doctors, that what they thought was pelvic muscle strength was actually that my pelvic floor was in a constant state of spasms.

Though I am not a doctor, I would highly encourage you to ask about the possibility of this with your doctors as well as ask for a Pelvic Pain PT referral!  They really are awesome and even the ICA and Dr. Moldwin are recommending using them with patients now early in their diagnosis process!

Hope that helps you!
Shelly
IC Support Group leader for MO and ARK (USA)