Bladder Endometriosis? IC?

[k.ozer]

For the past 2.5 years, I have been suffering with "bladder symptoms" (frequency, feeling like I still need to urinate when I have just done so, pressure near bladder, sometimes urethral 'burning' after peeing - burning is a strong word though!) Anyway, I DO have Stage 4 Endometriosis as confirmed by a laparoscopy 3 years ago...At that time, I had NO IC symptoms at all. Just extreme pelvic pain 24/7 for many years. Four months after the lap, I got pregnant. About 5 months into the pregnancy, the IC symptoms showed up. And all my Endo 'pain areas' as I call it. The scar tissue from the Endo, on top of the bladder pain was unbearable during the pregnancy. After the pregnancy, the pain was still there, but I'd say 50% less. I lived with this on and off for the past 2 years post pregnancy - I was on Elmiron, Elavil, and a handful of other herbs and supplements. I could never tell if they worked as I'd go through spurts of feeling crappy and then it'd disappear. Funny thing is, it seems like these "IC symptoms" only show up when my Endometriosis is flaring. I know it is the Endo because I know where the Endo is growing. I've never had JUST IC symptoms alone. Some of my doctors think that it's not IC and that the endo has invaded my bladder now and that's what causing the "IC" symptoms. I am having excision surgery this week to excise all the endo out of my pelvic region and I HOPE HOPE HOPE they find it on my bladder so it can be removed and I can be free of these symptoms. I don't want it to be IC. Endo is a lot easier to manage. I mean, IC would be a lot easier to manage without the the Endo in the first place along with it...but IC is hands-down the worst of the two.

The first lap I had that I mentioned, he did take one surgical picture of the top of the bladder and nothing was there. However, I had no IC symptoms/bladder endo symptoms at the time so I don't think he dug around and looked closely. This new doctor knows of my issues and is planning on taking a close look....

I'm just very nervous and I'm trying to not get my hopes up too much that it could be this simple...

Does anyone here have/had bladder endometriosis? Did you have it removed? (Excised, not removed by laser...There is a big difference...Excision is a newer procedure that only a few doctors do in the country and has a huge success rate in treatment)

I'm just sick of the pain....I want to rip my bladder out!!! :mad:

[Snowden1]

I had severe endometriosis for 17 years. I had a hysterectomy to remove all the diseased organs. I wanted to keep my ovaries, but the doctor said when she saw them they were too bad. Anyway I had a complete hysterectomy with my appendix (it was also covered in endo). I have explained before on the board with my complications with infections following my hysterectomy. I also still wonder if there might not me more endometriosis or if it has gotten into or around my bladder. I don't think so - but I still wonder. I don't know if another laporoscopy would be worth it (I had 3 prior the the hysterectomy).

Can you PM me with your Dr. name, because all the doctors here talk about is lasering off endo.
Teresa

[icbeauty]

I had endometriosis over my bladder, but it did not invade the bladder. When I had my second surgery (excisions this time) for endometriosis, they also did a cystoscopy to look to see if it had gone through the bladder wall. They found IC instead. Excised endo that had grown back in other spots though. Had a 3rd surgery 3 years later to excise endo again. Excision is good, but endo sometimes grows back in some women. I don't understand why.

Anyway, if they're doing a cystoscopy along with the laparoscopy, you should have answers. Personally, I was scared about having endo invading my bladder because I'm able to control IC right now by my diet most of the time. It took a long time to get to this point though.

Good luck. Keep us posted. Oh, and you will feel better after excision. My first 2 surgeries were only 7 months apart. Lasering off the stuff just didn't help. But I went 3 years after excision before needing another surgery. And it's now been more than 3 years since the last surgery. I feel great still. No need to even think about having it done again. :)

[momw/ic]

I was dx with endo 20 years ago at the ageo 19. I have had a total of 7 laparoscopies to excise the endo for pain control and to get pregnant. I finally had a hysterectomy when I was 30 with excision again. After my hysterectomy my endo came back because I was taking supplemental estrogen. It was during this time my IC symptoms began. Six months after the hyster and terrible bladder symptoms I had another surgery. The endo specialist found endo all inside of me and did a cystoscopy with hydrodistention and found the IC. I did have endo all over the outside of my bladder and the surgeon had left a portion of my left ovary inside of me and it had attached itself to my bladder on the outside. My specialist said he thinks the trauma to the bladder can cause IC and that is probably what happened in my case. So now I have traded the endo for the IC and I regret it. I would have endo again in a minute.

Good luck with your surgery! I hope they are able to get you some relief!

[Natsy]

How did the surgery go? I hope that you will be able to notice some relief from your symptons once you get over the operation.

I'm going to have an excision lap in a couple of weeks too. One area from where they'll be removing it is my bladder. It is very deep there. But I don't think that this causes all my bladder symptons. I think I have IC caused by sexual cystitis. My bladder responds to antibiotics, alkalinizers, and it seems elmiron too. When my endo is really playing up it definitely puts a pressure like feeling on my bladder.

I hope your operation went well.

x Natalie

[Snowden1]

Momw/ic -
Your story is similar to mine. My IC started 8 months after my hysterectomy - but pelvic pain never when away after the hyster. I am like you I would trade endo any day for this. The thing is I argued with the doctor if I needed the hysterectomy or not (I thought menapause would help) and the depo provera was helping too. I never even imagined you could get something like this - it has turned my world upside down.
Teresa

[mindee]

Reading your storys makes me want to cry because i also had my uterus taken out in april 2008 and than in july 2008 they took out my cervix and my left tube the second time they were in me that is when they messed around with my bladder to look for endro and to remove my cervix and tube. When i woke up the second time i knew something was way wrong. That is when i got ic. I wish i never had the second surgery and took time to talk to a diffrent obgyn. My endro is also on my bladder and all over my colon they can not remove the endro on my colon because it will kill me if they do because there is so much and how deep it is in the colon.

[anewday]

I'll share my story, maybe it can help.

I started having bad symptoms in my 2nd pregnancy in 2005 (delivered 2006)- I never felt like I recovered from childbirth, I knew something was wrong, however convincing doctors was hard because I had just given birth and breastffeeding and shouldn't have endo. During a lap in 2007, they discovered endo pretty much everywhere, along with endo-filled ovarian cysts (the way I finally got the lap). 6 months later I had the same symptoms but worse, so I had a partial hysterectomy and both ovaries/tubes removed. My ovaries had wrapped around my tubes, endo was worse than before (despite not having periods because of ablation), was on my bowels, and had adhered my bladder to my abdominal wall, but was not in my bladder.

I felt good for a few weeks after recovery, then 2 months after surgery, blinding pain again. I was like you- I had myself convinced I had bladder endo. I had been to see a uro about IC in 2006, but since my bladder emptied normally he didn't think I had it:rolleyes: However, my gyn didin't believe it was bladder endo but was IC, and sent my to a different uro.

Upon in-office cysto, he found red spots and said he pretty much thought I had IC, but wanted to do a hydro dystention. He did, I had hunners ulcers. A little over a year later, I had done the diet, tried conventional and unconventional meds, instills, yet nothing but pain meds helped- Botox in my bladder helped urgency/frequency. I found another urologist who changed my life. She sent me to physical therapy for pelvic floor dysfunction. I think (and she agrees) that my PFD cause me to hold in urine that caused or aggrevagted IC and caused pain. I went from taking narcotic meds 3x a day every day to taking Ultram once in a blue moon, and maybe a 1/2 a pain pill if it's really bad. I think that the endo pain and some emotional/stress issues from my marriage that I was in caused me to tighten everything down there and cause the PFD- and it just got worse and worse from there. I'm a different woman now :)

[Snowden1]

What did they do to help you? I had PT for about 8 weeks, but it did not seem to help much. Are you taking HRT? I thought estrogen was making me flare worse so I stopped. I am not sure if I should go back on it or not.
Teresa

[anewday]

I went to PT 2-3 times a week for months. For the first weeks, I would flare pretty bad after. It took time to feel results but it was amazing. I also got a stim unit (similar to a TENS) to use at home. I also do exercises at home- I think strengthening my abdominal muscles helped the most, honestly.

I am on hormone therapy- it's not an option for me, IMO, at 28 not to be on it.