IC or Endometriosis? Should I have surgery?

[hollipop]

:hmm: Okay, this one is probably “out there”, so I hope someone can respond with some insight into this madness.

Today my husband had a vasectomy, as I have found birth control hormones to cause great bladder pain for me. What a trooper! I was so proud.

Well, while I was in the doctor’s office going over my husband’s discharge instructions, he told me that he was aware of my IC problems and wanted to give me a free consult, as he was told by my hubby that I never go to male doctors. He asked me some questions and came to an unbelievable conclusion that I probably don’t have IC. I’m sitting there like, “Huh???”

Here is his theory: Since I’ve not been officially diagnosed by cystoscopy, because I don’t have pain urinating, have no frequency or urgency, have more pain when my bladder is empty, irregular periods that have days of spotting before my actual menses, and hormones completely kill my bladder (pills and patch), that I most likely have endometriosis. I’ve been through all kinds of fertility treatments, miscarriages, preterm labor and delivery, and complications with each pregnancy, which almost makes sense to me that this is possible, so why the heck hasn’t my current uro, fertility doctor or gyn suggest this?

While I probably should check this out with a laproscopy, my question is (but I didn’t think to ask while I was there because I was in shock!) why do foods and drinks (especially diet coke) affect me? Why does msg, soy sauce, and coffee cause pain?

I think I’m going to find a new gyn that can do a lap and a cystoscope…he recommended a few to me that are female, but there is no uro/gyn in the Houston area, but he feels that he could do both.

I don’t have a problem going to him as a man, because I just want to get better at this point, but does this even make sense? What do you think?

[Katrina]

First of all....hormones have affected a lot of IC patients. Have you tried a kind with progresterone only and had the same effect??? (although for my endo I found progesterone only to still be bothersome but to some people it is an effective endo treatment)

Does getting arroused increase your symptoms?

There is no one way that diagnosis IC...even the hydro is loosing its Official ness since the test itself can cause inflammation and lack of visual dammage does not mean no IC.

Those diet things that bother you I don't think would effect someone with endo only.

How about fatigue/tiredness. When my endo began I was sleeping 17 hours every single day....didn't leave me enough time to research what was wrong with me grrr.

Do car rides effect you?

Has any IC treatment helped you?

Also...a laproscopy isn't that bad....and if there is a chance that you were misdiagnosed it can't hurt to look into it.
My frequency isn't extrmemely high....although I always notice how much I drink....and wonder when I flare where all this liquid is coming from??


Do you have more pain after you go....or when your bladder is truly empty (like after a catheder emptying)
I am asking because possibly PFD is part of what is going on.....and it the muscle action to go is bothering you. Urgency is really a muscle thing...if you have IC and your bladder is irritated you may irritate your muscles....and spasm.

My own opinion is that you probably want to be more sure if your instincts are telling you to doubt....but I would trust your instincts.

The thing is that there is no one perfect diagnostic tool for IC and what you said does make me think that you don't or that endo is more likely aside from the spotting and irregular periods.

I hope that helps and that somehow you are on the path to relief!!:grouphug:

[hollipop]

Thanks, Katrina. Have I told you that I love you today? :grouphug:

There are other reasons that I think I have endo. I had excruciating right flank pain when I was pregnant that caused them to do u/s while I was pregnant with my twins, and I was unable to conceive without in vitro. I have lower abdominal pain when having a BM sometimes (like a menstrual cramp), pain during intercourse when on my period, I cannot drive the first day of my period because I have a shooting pain from my abdomen to my right thigh. I don't have an increase in bladder symptoms from the car, though...I drove almost 300 miles doing photoshoots yesterday with no increase in pain.

I don't know what to tell ya about the empty bladder thing...I've never been cathed. I can hold my pee all day, though. I only go about 5-6 times a day, and I drink at least 70 oz of bottled water daily.

Also, for the past 3 months, I've had a weird burning sensation "down there" when I sit on the sofa, especially working on my laptop, and now I have to sit at my morning area table to work so I can get comfortable. I sit on my feet a lot to keep the pressure off. Funny thing that shopping always makes me feel better, because I'm not sitting anymore. It's tough being a graphic designer for a living and working on the computer all day.

I'm afraid that I might have endo, IC and VV. This really sucks.

I'm also tired, but that's mostly because of the elavil, although I've never had a whole bunch of energy. I have always liked to get 8-10 hours of sleep each night, so taking care of a baby is almost unbearable at times.

[Katrina]

:grouphug: Anyone ever tell you if you had a tilted uterus? My endo pain was way worse on the left...because my uterus was tilted.


If I were you I would want to have a hydro and lap....because if pain is your main symptom it may be related to hunners ulcers ....and that may be why some of your symptoms are mild but the pain isn't!

I don't like having multiple diseases...but knowing what all is going on helps you do the right things to treat them....and your not alone no matter what...you will always have us!!! :grouphug:

[hollipop]

Thanks, sweetie. I sure wish you could get well so you could become a doctor to help IC patients. You are a wealth of information.

Funny you mention the tilted uterus. That's the reason they gave me for my inability to become pregnant. My IUIs and embryo transfers were excruciating because of my cervix and uterus not lining up well. They had to use that pinchy tool to get the catheter through my cervix. I thought I was going to die of pain. Of course, one I delivered my twin girls, my frozen embryo transfer was completely painfree. Funny that my labor was easy both times, considering what I had to endure to just get pregnant.

Then last summer when my daughter was only 5 months old, I ended up pregnant on my own, so I figured my uterus must be back in the right spot. It ended up being a blighted ovum, though, so I had the dreaded D&C, which I attribute to my IC symptoms. I never had these problems until right after that. Hmmmmm....

I'm still on the antibiotic treatment, but not feeling confident about it now. I feel better than usual, but still have the burning when sitting for a while (it stops when I stand up), and just "awareness" of my bladder, mostly like little needle-like pain. Could be a spasm, I guess.

[Kara Isabel]

Hi Holly!

Sorry to hear you are having such a rough time lately! I hate to be the black cloud rollin' in on the thread, but it is quite possible that you have BOTH Ic and Endo!

I do!

And I hate to say it, but my bladder *issues* got worse when my DH got a vasectomy and I went OFF of birth control........In fact, looking back, I think that's when my frequency/urgency issues arose...... I've always had painful periods and my uterus is *tilted* back...which accounts for the radial labor like pains I have during my period. I guess it is lower back pain/pressure and cervical pressure is the best way to describe it.

You may just have a mild case of IC or hopefully NO IC at all! :woohoo: I hope you don't have it, but I would surely wonder if you get symptoms after diet coke and wine! :hmm:

The lap would be a good thing, if you need to confirm endo, and want to clean it up a little. Unfortunately, endometriosis is a pesky lil' disease.......it keeps coming back! ugh! But the lap might give you some relief for a y year or so?

Logically, drinking coffee and eating products w/ msg shouldn't bother endometriosis....so I would be leaning towards a probable mild IC/sensitive bladder theory on top of the endo!

You've just had a whirlwind of stuff going on the last few years, chica! Take care of yourself, sweets!

love ya!
Kara

[hollipop]

Oh Kara, you are not a black cloud...I'm pretty sure you are right. Oh well...maybe they'll just do a hysterectomy so my tummy will be flatter! lol

Love ya back! :kiss:

[Mrs. Burschman]

Hollipop,

You'd weigh less, too, with one fewer organ.

(sorry, I couldn't help myself!)

Amy (Mrs. B) :bunny:

[hollipop]

Thanks, Amy! :woohoo: :smile tee

[Kara Isabel]

LOL Holly!!!! :biglaugh:

I just HOPE that losing the artificial hormones/birth control will help you! I want to say "rosesitty" had the same thing happen, her flares were pretty manageable (staying away from alcohol and carb. beverages) until she stopped BC and it all worsened, like me! Maybe she'll pop in here....(My apologies if I misquoted, Stephanie)

I wouldn't mind a hysterectomy either!!!! Sign ME UP! I'll gladly give up those tampon soaking fest! (as I get older, I find myself having much harder/more painful periods!) yikes!!!!!

Oh and happy Mother's day! :)
:kissing:
Kara

[MelindaP]

Hi Guys!

I just had to pop in to say that I too, believe that going off my BCP brought on my IC symptoms. I was on Lo-esterin for years & I actually never got my period while on it. My symptoms popped up a few month after I went off of it to try to conceive. My symptoms are burning urethra 24/7 & some mild bladder discomfort off & on. I am nursing my daughter now, but was thinking of trying to go back on it when I am done nursing.

Kara, did you try to go back on the bcp without luck? I am hoping it will help me!

Melinda :)

[natalie2006]

Katrina Did you have a total hystercodomy? Did it bother your IC? Did the hormones make your IC worse or better?

[momw/ic]

I had severe endo - stage 4 - with a lot of the same symptoms you have described. Infertility, pelvic pain, premature labor, pregnancy problems, ovarian cysts and the list goes on. However, I never once ever had any bladder symptoms or problems. I was told I had endo on the outside of my bladder and it was removed several times but I never felt any symptoms from it. I had my uterus removed in 1999 and they laserd the endo by of course it came back. Three years later I had my tubes and ovaries removed with TONS of endo. Within 3 weeks my bladder symptoms started and never let up. Six months later I had another laparoscopic surgery (different doc) and he found that the previous doc had left part of my left ovary inside of me. It had a large endo cyst inside of it and had wrapped itself around my left ureter and latched onto my bladder. He removed that whole mess and then went through and literally cut out every piece of endo tissue. There was a lot in there still. Since then I have had no endo problems anymore BUT during that surgery the doc did a cysto w/hydro and diagnosed IC. I will always believe that my IC was caused by that whole process but exactly how I don't know. Anyway, that is my story and connection with endo. The thing with endo is that is will always come back if the top layer is just lasered off. The entire tissue and surrounding tissues have to be physically removed to keep it from coming back.

Hope this helps you find some answers!