Endometriosis or not

[lizgordon24]

Hello. I am so frustrated with not knowing what's going on.  I started to have pains in suprapubic area, lower right ab and thought it may be a uti.  Uti came back negative, but microscopic hematuria was found. I was still given antibiotics just in case, but still had pain. Went through ct scan, ivp in which everything came back normal including pap smear. The urologist did a Cystoscopy procedure in which he said that my bladder looked very good.  Does endometriosis cause symptoms in which may bother the bladder?  It feels like once my bladder is full my pain worsens, and at night I always have to go at least 3 times. My pain is intermittent for the last 6 weeks now and at times is dull but as the day goes on it is a lot more intense.  My periods the last few years have been painful in which they never were before. My ct scan did say someting about fluid but nothing unusual. My gynecologist is having me go in for an ultra sound on the 18th of March, and I am hoping to get some answers. Also is pain hard to pinpoint the exact location when it comes to endometriosis? Any advice will be greatly appreciated.  

[Hayley723]

My periods changed also. Some brownish and thick/dry, then most just extremely heavy/clotty. I went to gyno today and she said she doesn't think cysts as small as mine can cause this kind of pain. She prescribed me stronger birth control to try, and if I still have the pains, then we have to do a laparascopy. She thinks I either have endometriosis or adenomyosis I think it's called? I also have thinning of the posterior vaginal wall from giving birth, but can't have it fixed until I'm done having kids! The cysto pain got much better~thanks for your info on that!! I also got my period today after having just a week and a half ago~loovely!! I'm very frustrated as well!!!

[lizgordon24]

I'm so sorry that nothing was found out, but at least you can rule out your bladder which is probably a good thing. I completely understand you frustrations because of not knowing myself what is wrong.  After I had the cystoscopy, I didn't have any burning or hardly any discomfort.  If you can barely pee now you might want to call and ask about the burning part and if it's normal.  I started my period yesterday, and my cramps hurt so bad that all I wanted to do was sleep it off so I didn't have to deal with it.  I'm starting to get lower right back pain. I usuallty wear tampons, but it hurts to leave one in ever since I've developed these pains.  I believe I either have some cysts that need to be removed or maybe endo because of my periods being so painful the last couple of years. I don't go back until the 18th which seems like so far away. My period seems so different flow wise as in it's more thick and dry like and a lot darker.  My last period was really rusty color towards the end which I don't think is normal.  

[Hayley723]

Also, after you had the cystoscopy, how bad was the burning afterwards? Or how long did it last? I can barely pee now it burns soooo bad!

[Hayley723]

I'm so upset now...everything with my bladder looks fine she said (which is great) but she basically told me it's a gynecological problem and my ob/gyn should have been watching the cysts this whole time. She said I have some vaginal dryness which can cause the uti feelings. Which I'm surprised the ob/gyn didn't figure out, I just dont understand this...where is the blood in my urine coming from then and I'm calling my ob/gyn back because now I;m just pissed at all of them. I've wasted 3 months not knowing and basically being at the wrong doctor. UGHH!!!

[lizgordon24]

I am so happy that I found this forum becauase it's comforting to know people can relate and understand what I'm going through.  Isn't it just so frustrating being a women and going through these problems. The cystoscopy is not bad at all to go through, and only takes a couple of minutes. I go to the gyn the 18th of this month, and if I am having an ultrasound done and I just hope they find something. The symptoms are frustrating because it's sometimes so hard to figure out where the pain is coming from exactly, but know it's in the pelvic area, lower right quad, and sometimes feels like my bladder has a uti.  Something is putting pressure on my bladder because of feeling like I have a uti.  I'm sure that you have been researching like I have because when I heard that I had blood in my urine, I was freaking out because it just didn't sound good.  Once I started to research then I realized it usually not a concern, but because of having pain I don't know what to think.  Do you get worse as the day goes on? Or some days I don't feel as bad as others.  At times when I have been feeling fine, I was so hopeful that I was ok afterall but then before you know it, there's the pain.  Whatever you do you keep going to the doctor's until you get an answer. When I went to the urologist he made me feel so stupid and uncomfortable because he acted as if nothing is wrong and it's all in my head.  Have you been to the gynecologist since this has been going on.  I found an excellent practice here in Michigan where it's the best practice I've ever been to. I will definitely let you know if they find out anything which won't be until the 18th. I assume that if they don't find anything from the ultrasound that they will do a vaginal one next to get a closer look.  Please keep in touch, and if you ever need someone to talk to then I am a good listener especially since you and I have the same symptoms.  

[Hayley723]

I have the same EXACT thing!! I randomly feel like I have a uti but get neg. cultures and have microscopic hematuria. I get the pains randomly and my bladder feels full easily and if it gets too full it hurts! I have had a CT and US, so far no answers besides 2 very small cysts which they said were normal(?) and some free fluid. I'm having a cystoscopy tomorrow and will hopefully get some answers as to what is going on. This has been going on since the beginning of Jan. Let me know if you get any answers!!

[lizgordon24]

I am so happy I found this forum. IC is one thing that the urologist never even tested me for.  My gynecologist mentioned from my last appointment asked if they had tested me for it and said that they wouldf.  The urologist never once mentioned that my symptoms could be IC.  I did have the cystscopocy and he said that my bladder looked really good so I figured that maybe he ruled it out because of that.  I know that my gyn doctor will test me for it I'm sure since the urolgoist didn't.  That urology place was such a bad experience that I will never go back there because it was nothing but a factory of people for them to make money.  Thanks so much for answering all my questions and for the great advice once again!

[juliesmom]

As for when the endo pain occurs, for me it's very random...I'll have a couple of days that are virtually pain free and then out of the blue it's back.  Sure, when it's time for my period it is worse, as a matter of fact, it's a lot worse, but it's all month long and at times it comes and goes and other times it's constant.  There's no rhyme or reason to it.  Did the urologist mention interstitial cystitis?  Your symptoms are very similar to IC...google it and see if you can find out more about it.  They can do a potassium tolerance test to check for IC.

[lizgordon24]

Thanks so much for taking the time to reply Shelley. It's so greatly appreciated.  I had a culture done which showed up negative for uti. I thought for sure that it was going to be something to do with my bladder or some kind of urology problem since the pain seems like it's coming from the bladder area and because of the hematuria.  The urology place was a complete nightmare, and it was just a bunch of men who just don't have a clue on what us women go through especially the pain part. They always run behind, like over an hour after the appointment time which was aggrevating. Way too many patients go there, and I had to wait over a month to get looked at.  I left crying because I thought I was going to get a diagnosis and start feeling better real soon.  I know that I will never go back there again because they didn't want to take their time and listen because their in such a hurry to get to their next patient.  When I tried to explain where the pain occurs at, all he could say is how weird it was.  I have a great gynecologist practice here in Michigan that is the best when it comes to listening and they care.  They have me down for an ab ultra sound first then if that doesn't show up anything then the transvaginal sound. I may just ask like you said because when my bladder is full there is a lot of pain and pressure.  I also was thinking about cysts as the other problems because of my symptoms.  One reason I think that it could be something other than endo is because my pain is intermittent but has occurred everyday for the past 6 weeks, and from what I understand is endo usually occurs 2 weeks before menstrual and during cycle.  Sometimes it bothers me to sit.  Thanks so much for all of your help, and I'm sure that I will be contacting you again if something else comes up.  Thanks Again Liz

[juliesmom]

When I'm have a bad day with the endo I hurt from just under my ribs all the way down to my knees, so yeah, it's hard to pinpoint.  When you tell someone that you're hurting in that entire area they just look at you like you're full of ****.  Since endo can effect a wide array of organs it's possible to have pain in various places, endo on the bladder is pretty common and it will effect urinary frequency so it makes sense that it could be endo that's causing you to have to get up so often in the night.  I have had adhesions all over the place, some have been treatable and others not, it depends on where they are, if they're causing a problem with the organ they're attached to and weighing the risk of removal versus leaving it.  When they did your UA, did they do a culture or just a urine dip?  Sometimes the bacteria doesn't show up until they culture it.  That will also help them determine if they're giving you the right antibiotic if it is in fact a UTI.  When you go for the US, it's probably a good idea to get it transvaginally instead of just a normal pelvic ultrasound...it's more uncomfortable and more embarassing, but you get a better picture of the ovaries that way...maybe you've got some small cysts too.  Need anything else just yell, good luck!
Shelley