Hi, everyone, finally discovered the cause of my bladder pain

[ICLori]

First I would like to thank everyone here including the board creator and moderators for their wonderful support and all they have done for me over the years. I wish very much for healing and a life free of pain for all of you.

Before I share my story, I would like to say that this is only my story, and may not apply to anyone else here on the boards at all.

I just had a total abdominal hysterectomy and removal of ovaries three days ago. During the procedure, the surgeon noted that I was "full of" endometriosis, from my ovaries all the way down through my bowel and finally all over my bladder. The endometriosis was just covering the outside of my bladder to where you couldn't hardly even see my bladder through it. The surgeon, who has been an ob-gyn for 40 years, said he'd never seen one person with so much endometriosis. He said he removed it all.

Even with the foley catheter in, when I woke up from the surgery, I noticed immediately how very comfortable my bladder felt. Here I am day three and doing okay (sore around the incision though) with just tylenol and at home and really just amazed by how comfortable my bladder is, and how I only have to go to the bathroom once during the night and a few times during the day.

What a difference! I wish so much that the doctors had realized, when they first diagnosed me, that it was endometriosis of the bladder rather than IC.

It would have saved me a lot of pain and frustration and would have saved them a lot of time and frustration with me, too. I still have hurt feelings that the doctors would think I was crazy because I didn't respond to the IC meds, instead of re-thinking their original diagnosis of IC where I was concerned.

Well, the most important thing is that I am now finally free of the bladder pain and frequency that had been part of my life for over a decade. In recent years, it had become less and less severe (guessing because my hormones were declining as I got closer to menopause - I'm turning 50 this summer) but it was still there, especially right around my period.

I am so glad to finally have an answer as to what was causing my pelvic pain, and to finally be free of it.

I hope that each of you soon finds relief from your pain as well!

Blessings,
IC Lori

[ICNDonna]

I'll cross my fingers that you continue to be free of bladder problems.


Donna

[sderossett]

Kidney problems

Hi Lori!

I saw your posts from years ago about kidney problems. I have what I believe to be IC, and have been diagnosed with renal insufficiency (GFR: 58). My creatinine runs from 1.1 - 1.2. I'm wondering if your kidney issues are have improved. Has your creatinine been stable over the years? My concern is that my creatinine will rise if I try medications for the IC. Sometimes I don't care much about kidney damage b/c the pain is so bad, but I other times I feel I can handle it and don't want to risk the kidneys. Any comments you have would be greatly appreciated!

Wishing you good health,
Shari

[ICLori]

Thank you, Donna and Shari!

Oh, Shari, I know it's so hard with the bladder pain. I went through it too and it was awful. I know how you feel. But you don't ever want to risk harming your kidneys in any way, trust me on this. You might discover tomorrow that this medicine or that works to stop the bladder pain. Or you might even discover that it's from endometriosis, like mine was. I mean, anything could happen. I have to believe you won't always have this bladder pain! And when the bladder pain lifts, you will want to have those healthy kidneys so you can enjoy life for as long as you can!

My kidneys improved to 1.5 creatinine levels, but not any better than that. There was permanent damage from the Cyclosporine-A and I now have Stage III chronic kidney disease. (Chronic renal insufficiency is another way of putting it.) I don't know what the future will hold. I am hoping my kidneys will hold up long enough so I will get through the rest of my life without needing dialysis, but there's no way of knowing how things will go.

Things have been interesting the last few months for me. Three months ago I was in the ICU at Walter Reed fighting for my life from Guillain-Barre Syndrome (got GREAT care there, by the way) and I've just about fully recovered from that but then I pretty much had to have a TAH/BSO because the monthly bleeding had turned into hemmorhaging. And once they opened me up they saw the severe endometriosis and confirmed that my decision to have the ovaries pulled too was the right one. The problems I was having were because I had adenomyosis uteri. Basically endometriosis of the muscle of the uterus. Anyway I'm glad to be rid of that problem, just kind of waiting now until I'm all the way healed up (9 days post-op now, doing really well but feeling a bit of cabin fever the last couple of days.)

But you know, those medical problems I've gone through recently were NOTHING compared to the bladder pain I put up with for a decade. I finally got to where my symptoms improved a few years ago (I think what happened is my estrogen started decreasing towards menopause, and that made my endometriosis not so bad anymore) and d-m*a*n*n*o*s*e seemed to work for me to soothe my endometrial tissue (or maybe it just fought the germs that sloughing endometrium inside the bladder would naturally feed?) so it wasn't bad at all these past few years, but I DO remember the seven years before that, and those seven years were NOT fun.

I guess what I'm trying to say is, once you go through this bladder pain stuff, every other medical problem in life seems pretty easy to handle.

But kidney disease isn't anything you ever want to have to handle. Work with your doctor to make sure you keep those kidneys healthy! I'm not saying don't try various treatments, just saying, choose your doctor really carefully and really do everything you can to make sure no damage is happening over time to your kidneys or your liver.

I just wish I would have realized years ago it was endo of the bladder. I had one doctor who felt it was endo of the bladder rather than IC, a urologist, but he was the dissenting doctor and all the other doctors thought it was IC so I just went with the majority opinion. I sure do wish I knew where to find him so I could tell him he was right.

Endometriosis can cause a lot of pelvic pain, including bladder pain that mimics IC if the endo is bad enough on the outside of the bladder. I will have to go look up a link about that and post it for anyone who is curious.

P.S. Wishing you both good health too!

[ICLori]

One article about endometriosis of the bladder (for those who are curious.)

http://www.articlesbase.com/health-articles/common-symptoms-of-bladder-endometriosis-143678.html#axzz1QmtxQOvA

[sderossett]

To Lori

Lori, I appreciate your response. I cannot imagine all that you have been through. It is wonderful news that you are not having as much pain. It's very encouraging for us to hear that there is hope for the pain.

It's amazing how bad mine gets right before I start my period. I even had a filmy, weird look to my urine at that time. That had me VERY scared thinking it was protein from the kidney disease. My tests show that I do spill protein, but it's not an abnormally high level. I still have hope that the nephrologist will say there is a chance I could live to be 80 (42 now:-) without needing dialysis. My dad went on dialysis at the age of 55 and went through much suffering before passing away at 65. I know there are no guarantees in life, but I am a person who needs reassurance that there is a possibility. The ironic part is that when I watched my dad go through the side effects of different types of dialysis, I told my friends how bad I felt for Dad, and also how grateful I was that his dr's said it wasn't hereditary.

The earliest blood test my dr has is from 1997 and my creatinine was 1.0 back then (no mention of any possibility of problems at that time). Over the past three months it has been 1.09, 1.01, and 1.16. (I'm a math teacher, thus the interest in numbers:-) In 1997 I had just given birth and hadn't been exercising at all. I would think my muscle mass would have been low. Now I exercise a lot. My hope is that the neph will say that because I'm tall and fairly muscular, all those numbers are normal for me. But if they are not, I wonder how long I can stay in this 1.0 -1.2 range. Do you know how long you have been at 1.5 level with creatinine? I saw in an earlier post several years ago that you were hoping it would go back down to 1.5 from 3, and it sounds like it did.

I'm sorry for the long message, but I have so many questions, and feel obsessed with having some hope about the IC and especially the CKD.

Hugs and health to you!
Shari

[Engtch29]

Blessing to you, Lori!

So, would you say that a biopsy is the way to diagnose endo of the bladder? I'm undergoing a hydro soon...did you have one years ago?

I'm so glad that you have found your long deserved relief!

[Briza]

Hello Lori
Long time no see!
I'm thrilled to hear you are doing better, and that you now know the source of your bladder pain!
I'm wondeirng how the endo was missed before? Did you never have a pelvic laparoscopy over the years?? Wouldn't that have shown the endo growing on your bladder?
Hoping you can give us some more details. Thanks!
I hope you continue to see improvements.
Bri

[sofirus]

Hi . I am so glad that you are pain free now ! Wow this is just Amaizing ! Why they didn't understood about the endo earlier ??? I am interesting also about did you had some diet sensetivities or no ?

[ICLori]

Hi, everyone! Shari, I've been stable for 4 years now, and I don't know what the future holds but I have heard of other people with stage III CKD being okay for decades so hopefully you will be okay the rest of your life. The nephrologist said he couldn't predict my future. We just have to hope for the best I guess. I know it's scary.

Hi, Briza, good to see you again too! I don't really understand why the other doctors didn't see what the one doctor did. The one uro said he thought it was endometriosis of the bladder. The first team of doctors who originally diagnosed me took a couple of biopies of tissue, but I guess those particular pieces of tissue didn't have endometriosis. The endometriosis was primarily on the outside of the bladder, not the inside, but the way pelvic pain is, the nerves are kind of like a big ball of spaghetti and endo pain can actually feel like it's bowel pain or bladder pain or what have you. It can kind of "refer" from one area to another. The chemicals put out by endometrial tissue are extremely irritating, too. I did notice that my pain seemed to wax and wane with my periods but I guess regular IC can act that way too. So I just didn't know.

The article (the link is up above in another post) said something like 70% of all women who have endo of the bladder have it misdiagnosed as IC. Don't know if a similar number of women get diagnosed mistakenly with endo when they have IC. I guess the two conditions feel so much the same that it's really hard for anyone to tell them apart unless the biopsies show endo.

I'm still totally pain-free and I've been off the pain meds (except for Tylenol) for a week now. My bladder seems to be very happy now, without the endo and hormones. Hopefully it will remain happy. I'll check in every now and then to let you guys know how it goes.

Anyway that kind of explains why the IC meds didn't seem to work very well for me. It was really endometriosis pain that we were trying to fight and the treatment for endo is done with hormones or surgery primarily.

I never really had the dietary sensitivities others had - I thought I had a very odd case of IC, and now I know why it was so odd - it wasn't IC at all. I was sensitive to many medicines, though, but I think that the medicines might have been inflamming the endo tissues or something, that's probably why I had increased pain with certain medicines.

That's also why Cyclosporine-A, even though it killed my kidneys, helped me. Endometriosis causes incredible inflammation and cyclosporine-A is an incredible anti-inflammatory among other properties. So it worked for me while I was on it just because it kept the endometriosis inflammation in check. Lupron worked for me too, it took away a good 75% percent of the bladder symptoms anyway, but you can't stay on Lupron forever and the doc who put me on it said I shouldn't get a hysterectomy because that would make my IC worse. And I knew he was right about that because of the stories I've read here. So I thought, well, I can see it gets worse with hormones but I will just have to wait for menopause and then things will get better hopefully. And I was going to wait for menopause and not have a hysterectomy but I was having problems with the bleeding getting really bad so I pretty much didn't have much of a choice.

I think the only way the docs could have known I had endo, would have been to open me up and take a look, because it was on the outside of the bladder mostly. The biggest growths of all were on the bladder flap, and the growths that went into my bladder were probably just microscopic. But you can bet that if the outside of your bladder is covered in endometriosis, you are going to have some bladder symptoms that mimic IC. It's just not a healthy situation to have the outside of your bladder covered in endometriosis.

I did tell every single doctor about my medical history including two surgeries for endometriosis but it just never seemed to register with the doctors, except for that one really smart doctor who was right about it being endo. And I was too stupid to listen to that doctor. I put my trust in the several other doctors who thought it was IC.

Well, I have to just be grateful that the problem is finally solved and not be angry about the past. Doctors are human just like we are. They don't always know everything or see everything or think of everything.

Hope everyone is feeling okay today and I hope that your bladder pain goes away entirely!

P.S. I am kind of confused why they didn't see the endo on my bladder when they went in to scoop out the endo. The first surgery for endo, I didn't yet have the bladder pain (it happened a couple years later) so maybe the endo just wasn't there yet. Maybe it grew over time. I did have one other endo surgery though where they removed my belly button because it was breaking open and having a period every month from the endo (gross I know) and the doctor said he removed about a pound of endometriosis and scar tissue in total. He apologized and said he was sorry that he didn't get clean margins (meaning there was still some endo left inside). Maybe because it was a laproscopic surgery or maybe because the primary emphasis was on my belly button area...maybe that's why he missed it. I just don't know. It does seem puzzling to me.

[purpleviolet]

some questions

Hi IClori (and anyone else reading this)

I thought I would tell you what my uro said when I asked about endo on the bladder. First she said since I am past menopause that I could not really have endo now. She told me the only way to see if there is endo or adhesions is by laproscopy, that imaging cannot see any of that stuff, and that even if there is surgery to remove it, then it grows right back, sometimes worse. So it does not seem that I'll ever find out if I have that. What I was wondering is did any doctor ever mention anything to you about menopause or suggest that this stuff could grow back again? Just curious.
Thanks, PV

These past few days have been good for me. Don't know if it is adrenal health herbal formula or just luck.

[ICLori]

Hey PurpleViolet, hope your bladder continues to be happy!

Well, usually menopause gives some relief to endometriosis sufferers because the estrogen levels go down to almost zero, and it's estrogen that makes the endometriosis grow and be inflammed.

Also, the endo can and often does grow back, before menopause, but I've never heard of it growing back after menopause. One theory they have is that it's retrograde menstruation. If that theory is correct, then without menstruation, there can't be more endo being "planted" in the abdomen.

I don't know. As long as I don't have ovaries (and don't take hormone replacements of any type) I should have remission from the endo. And especially so since the surgeon cleaned me up so well from all the endo when he did the surgery. I got one of the best surgeons, probably the top ob-gyn type surgeon in the Army.

It's true that they can't tell if you have endo or not unless they go in and look.

[sofirus]

Thank you for your reply. I relly was wondering if you had problems with the food . And it seems pretty reasonable that you had not .I also do not have a lot of triger foods , but if I eat citrus than for sure I will have increase in my symptoms. My symptoms are only urgency and frecuency and mild pain , not the pain that many IC-rs do have .

[Annie2]

Well, hi, Lori!!!

I'm not around here much anymore, but happened to stop by, saw your post and just have to take a second to say hello. It's so good to "see" you again!

I am just thrilled to learn you finally solved the mystery which caused you ever so much misery. How wonderful you are out of pain and have a normal life again!!! Sounds like you've had quite a time of it with other problems recently, but hopefully the worst is over and now you can get on with living a happy and healthier life. How kind of you to come back here and share with others all you learned from your experiences. That's the ICLori I remember.... always there to help others!

We finally put our house on the market, sold in just 2 months (a miracle by today's standards) and moved to a wonderful community about 30 miles outside Austin, Texas. We've been here 2 years now and love our new community. It's a tad bit "warm" here now and nothing but more triple digit temps ahead for quite a while, but we don't have to shovel it and we do have to stay inside once in a while to get a few chores done. It's winters that I truly love here, though. They're nice and mild, cold temps only last a couple of weeks and winter is over. It's beautiful here on the edge of the Texas Hill Country! I found a wonderful, compassionate female urologist in Austin who is extremely capable helping me manage my IC. Retired life is good here in south central Texas.

So good to hear from you. Sending you wishes for continued good health and happiness.

Annie

[ICLori]

Hi again dear friend! I am so glad you have settled in now to your new home! I have driven through that area and I remember it as being very beautiful country! Lots of beautiful wildflowers in the spring!

I'm glad you have a good doctor who is helping! I hope things are getting better and better for you!

I am thinking this might be a challenge for doctors, how to distinguish IC and endometriosis from each other. The symptoms seem to be so very similar, and I can see why doctors and patients both wouldn't want to go doing exploratory surgery, but that misdiagnosis rate I read about in the article just seems too high to me to be ideal. What that article tells me is that I'm not the only one out there who got misdiagnosed and I just hate to think of someone else going through years of frustration and pain with the medicines not working for them. I wish there was just some blood test or urine test or something like that, where they could tell if it's IC or endo or something else entirely. I guess we're just not quite there yet.

Anyway, I've decided I'm just going to be grateful that I won't be struggling with the endometriosis and adenomyosis any more.

I hope my experience might help others! Or that it might help any doctors who read this forum to realize that there is a problem with misdiagnosis between IC and endometriosis.

It's good to see you again!