Interstitial Cystitis

[lisathuler]

I was recently biopsied during a cystoscope. My urologist said after the exam that there were absolutely no signs of problems with my bladder, that it looked fine. He performed the biopsy of the detrusor muscle because my nephrologist insisted. The Biopsy returned positive for interstitial cystitis and that there are white tissues in amongst muscle tissue. My nephrologist suspects that these are mast cells and is going to have the biopsy tested for this.

I am hoping for a doctor's opinion as to if this is very common, that the bladder will appear normal and healthy and yet the biopsy proves that it is not. Can anyone answer this riddle for me please?

Thanks!

[AmyKat]

I have had the same experience. I was went through the same test, and it was positive for IC, then a few months later had exact same test, at the Mayo Clinic, and it was negative. I was still in horrific pain. Went through one urologist after another and just happened upon the guy in San Diego, who has been researching IC and doing clinical trials. HIs name is C. Lowell Parsons, his website is http://drlowellparsons.org/.

I have been diagnosed by him and treated by him and through him have found the most relief. With oral medication (Elmiron) and bladder installations which he talks about (it is heparin, sodium bicarbonate and lidocation installed by syringe through a cathater as much as three times per day) and through pain medication e.g. opiates, which a lot of urologist disagree on, my life is somewhat normal. I still cannot work or have a healthy sex life. But I am not curled up in a ball with ice packs and heating pads either.

I've read about the theory on mast cells etc. There is a huge debate within the urological community about the causes, etc. of IC. But I continue to do online research about it and I encourage you to do the same. Always question your doctor and be as prepared as possible. Don't be afraid to argue or disagree with them. Sometimes online research can be extremely helpful, and is, as always with online research, can also be confusing. Dr. Parsons is the best urologist I've encountered. And I have been to so many and have been treated badly by many. Mostly doctors who don't understand IC and don't want to deal with people like us. I had one urologist who wanted to do weekly urethral dialations. How crazy is that? He said I had IC, but this was his treatment? Just cause me more pain than is necessary!

I wish you the best of luck.

[lisathuler]

AmyKat, Thanks for your opinion! That was very helpful. Yes, I´ve been reading and investigating what I can about IC and the mast cells. You see, I´m also under investigation for Systemic Mastocytosis, and fortunuately my nephrologist has been absolutely marvelous as to all of this. She was the one who was supportive of me when I told her of my suspicions and she has done all she can to find the source of the pain and issues. When she suspected IC, I insisted upon the biopsy and she backed me up because the urologist didn´t want to do it. He was afraid of me becuase of the high risk for anaphylaxis with me. Yet, thanks to her, we found out what´s causing the pain. As to what to do about it, that´s yet to be addressed, however, when I feel the need, the back to the internet, and perhaps even to contact your doctor I will go.

As to badly behaving doctors, I´ve been through a ton of them! I am finding that the doctors would rather be psychiatrists becuase a great many of them have been extremely subjective in my case. So many of my symptoms came up suddenly after my hysterectomy and because systemic mastocytosis is such a rare disease with some really rare symptoms most of them said it was the hysterectomy causing psychosomatic problems or emotional problems! Yet, since Gynechologists are the best judges of women patients, mine backed me up to the hilt and helped to defend me and kept behind me until we have finally found a competetant doctor to work with me. Yet, boy, has it been a fight! And I could have a lot of fun sueing a few doctors, if I wanted to, however, it is against my ethics to sue a doctor for being human. He´d have to have a very obvious case of neglegence for me to take him to court and it is my belief that we have been led by the insurance agency mafia and greedy lawyers to fall into the trap of sueing a doctor for being human. I do not accept their bad behavior, however, I can not blame them for not recognizing the signs of a very rare disease either! God help me if someone started sueing me for whenever I make and OOPS!

Yet, it´s been the constant researching and seeking out answers and pushing for what I knew was right that has helped me find not just the answers, but the right doctors to find them and treat them! So, you are very right and I think that more patients should be as agressive as you and I have been! It might help keep those doctors on their toes a bit more instead of taking the easy way out and saying it´s all in your head honey! The amazing thing is, they certainly do NOT treat the men this way!!!! And that goes off to another subject!

[AmyKat]

I had never heard of a nephrologist until now. You have enlightened me! Thank you! I have an appt with a supposed urologist who specializes in interstitial cystits at the University of Rochester/Strong Hospital in October. I will let you know how that goes. I will bring up Nephrology with him. No urologist I've ever seen has mentioned this field before! Urologist are a different "breed" of doctor, that I have experienced!

I hope you are feeling better. Let us stay in touch!

[lisathuler]

Thanks again, Amy for your reply. A nephrologist is the clinical version of a urologist. I live in Brazil, although I am an American, I´ve been living here for the past 20 years. Here, the men go to urologists while we women go to our gynecologists. The urologists do for them what our gynos do for us. Yet, when there are any kinds of urinary issues, then that´s when the nephrologist comes into action. Then, if there are any kind of physical issues that need to be addressed, that´s when we run to the urologist. Years ago, when I had a bladder infection, I ran to the urologist first, after seeing my gynecologist. However, knowing I was working with a urinary infection and a vaginal infection at the same time, that is why I went to the urologist. Well, he was rather surprised that I came to him and not to the nephrologist! It rather shocked him because he was accustomed to working with men and not women. Yet, after he helped me with the infection, he sent me on to my nephrologist and I´ve been working with her ever since. It was when I had to do the cystoscope that he came back on the scene.

You know, it only makes sense for us women to work with a nephrologist becuase we do have the gynecologists who also keep their eyes on that area as well since it is so interconnected. However, as to IC being dealt mainly with urologists, this makes sense becuase we are talking about the physical changes of the bladder and not just the clinical aspects of the disease. So, although you are having to work with urologists, I don´t think a nephrologist will be of much use to you with the IC. My nephrologist is learning all kinds of things with me, but then she´s also a GP and loves to learn more! As to a specialist in IC, well, I may be up the creek without a paddle for that one because I don´t know how much the Brazilian doctors are updated with that, at least not in my little town. However, I do live near Rio de Janeiro and those doctors are right in line with all of the international doctors, I`ve just not had to go that route yet with my situation. I´m too busy working with the mastocytosis still!

Yet, Amy, would you be able to do me a great favor, please? Ask your doctor if he might not know about IC without having the inside of the bladder look like IC? If you want, here is my email address so that you can contact me. [moderator note: e-mail address has been removed] Write to me.

Thanks!

[AmyKat]

As I told you, my appt with the IC specialist at the University of Rochester is not until October 9th. I will ask him for you!

Right now I am taking potassium citrate, which is a prescription med, which is supposed to help make the urnine less acidic and allow you to eat foods, like tomato sauce etc...all the things they tell you to avoid with IC. I'll let you know if it helps.

I'll stay in touch and let you know what I find out! Take care of yourself!!!

All the best,
Amy

PS How did you end up living in Brazil???

[lisathuler]

Thanks Amy, I would appreciate hearing what your doctor has to say! It would be nice to hear what a specialist has to say about it all. As you know, it's one thing working with doctors who kind of know, but a whole different thing working with one who loves and studies the disease!!! Night and Day! So it you could , if you could, I'd appreciate it, but it not, don't worry. I know what it's like to wait and wait to see a doctor. By the time you do, you've got a ton of questions and to have to keep all of them in your mind is not easy. Yet, here's a tip, see if your doctor will give you his email address so that you can ask him things over the internet. I've got contact with most of my doctors this way and it has helped them and me in keeping an eye on my issues. Doctors, as you know are funny creatures. If you know how to use the email properly, they will respond to your emails and make your life and theirs a lot easier. This way you can keep your doctor updated on test results without having to take up his office hours. It also helps him to know how you are doing long distance and if there's any need to bring you into the office. So, see if he'll give you his address - I hope he will for your sake!

As to my being in Brazil. I'm originally from the Washington DC area (yes, a real native) I met my husband in Pittsburgh, PA. He came to the States to study and I went there to go to Art School. We met in the same church. As it turned out, God gave us both a few twists in our lives, brought us together and then sent him back home with a brand new wife. This was in 1988 and we've since founded a church and a school and have 3 beautiful children to show for it! How's that for a story?!!!

Yet, the wonderful thing is that I'm very, very happy and I live in a country of lovely people! Have you ever heard much about Brazil, Amy? Most American's think that Brazil is like the rest of Latin America and it's not! Brazil was founded by the Portuguese and they have a very different temperament than the Spanish.

Well, got to go! Tell me a bit about yourself, Amy. Where are you from? And how did you find out about your condition?

Lisa

[AmyKat]

Oh Lisa, my life isn't as so interesting as your's sounds! What a great story you have to tell!

I am not a prejudiced person so I don't have the usual misconceptions about people and their cultures. I was raised to be very open minded...or rather raised with an unawareness; people might look different or speak differently, but we were all just human beings. I've traveled some, but not enough in my book. My husband was in the AirForce and has been all over. He has very interesting stories and perspectives about the world.

I've always been very curious about Brazil and would love to visit...its on my list!

I'm 42 years old, have been married for 10 years...first marriage...married rather late really. But I had a child at 18 and raised her on my own without the father in the picture. She turned out great! I was lucky enough to have found a man who is wonderful. My soulmate. And he is so supportive with my health issues. I have a 19 year old step-son too. I helped raise him since he was 10 years old. I'm from Dallas, TX. But moved to San Diego when I got married. My husband is an engineer and works in the communications industry. Moved back to Dallas in '05, stayed 3 years and now we are in Rochester NY of all places!

Most doctors in the states don't want you emailing them. I understand why. I cannot imagine the complaints etc they would get. Although I've heard of some who encourage it but only with established patients. My pain managemet doctor in Dallas was great and has been very supportive throughout my relocation. He knows it will take me some time to find the right doctor and is refilling my pain meds until I can get in to see a new doc. My family picks up the prescriptions, has them filled and FedEx's them to me. What a pain for them!

I am encouraged and very curious about the new doctors I have appts with. I pray, after waiting over a month to see them, that they will be the right ones for me. I am wanting to pursue alternative treatments for my chronic pain conditions. I currentlly have a spinal implant stimulator which is supposed to help with my pain and reduce my need for pain medications. But my body is not agreeing with it and is rejecting it. It does help and I will be very upset if we have to remove it. The whole process of getting one is horrendous. You have to go through counceling and then they do a trial. The surgery to put the permanent one in is excrutiating as you have to be semi-awake when they do it. They are adhering leads to your spinal cord while awake...its not pleasant and to go through all of that and give up on it makes me cringe! I'm not ready to give up though! And it has helped. Having it puts a lot of limitations on you though. Things you are so used to doing you cannot do. Like stretching etc. No lifting heavy objects e.g. over 15 pounds. It really stinks and I've probably screwed something up because I am too stubborn to give up my independence. If you followed all the rules you are basically completely disabled.

So, that is that. I'd love to hear more about you. Your life sounds much more interesting! Write if you feel like it and send it to my email address! Its [moderator note: e-mail address has been removed].

Take care,
A

[lisathuler]

Well, Amy, my life isn't that interesting really, I just live it like you do, one day at a time! It seems to me that life is an adventure in itself, no matter where we live it. Thanks for writing to me about sIt’s being good for me to see what you are going through because the IC situation is new to me and I’m needing to learn more about it. Yet this is only recently. You see, my real issues have to do with systemic mastocytosis and although my symptoms came up suddenly after major surgery, this rare disease is known to have been provoked by traumas like surgery. And my surgery must have stirred up the hornets nest and caused the disease to go into overdrive becuase I never had bladder issues before a year ago! It may have been developing, but this is all very new to me and I'm having to learn how to adapt to not only my new body, but educate myself as to every aspect of it. In my small town, I've not been able to find one doctor who knew the disease. And fortunately my nephrologist was also a GP and open to learning with me. If she had not been a hearing doctor and sensitive to her patients, we would not have stumbled upon the keys to this illness. Once we found the keys, then she was willing to be guided by my research and by the suspicions of the other doctors. You see, I went through the suspicion for a rare tumor called a carcinoid tumor and once it was ruled out, it pointed a big fat finger too systemic mastocytosis. Once that finger was pointed, then my doctor, knowing that things were very rare and strange with my case, then allowed me to raise my own suspicions while she investigated them. This is how we found out the IC diagnosis becuase although I've got the symptoms of IC, I've not had this complaint long enough for the urologist to suspect it. And since I'm a high risk patient, he was afriad to do anything that might trigger an anaphylactic attack. He didn't want to do the cystoscope becuase any invasive procedures can trigger anaphylaxis with me. Yet, we got the proper protocols for these specific patients and it was done in the operating room with the anesthesiologists all on board and so he couldn't refure. He was shocked because all appearances are of a healthy bladder, but the biopsy revealed that it is IC afterall. Now we need to stain the biopsy slides for mast cells and see what it reveals. However, in this whole process of having to learn about my body and how to deal with it, I’ve been having to learn more about mastocytosis and I’ve begun speaking with some patients from the Canadian Mastocytosis Support group because that is what my real issues are. The IC is a recent development in my symptoms and I’m only now embarking upon the pain issues that it’s been bringing up. In reality, my real problems are due to systemic mastocytosis. Systemic mastocytosis is a blood related disease where the mast cells are mutating and over producing and invading different tissues of the body. They are not well understood and it is a very rare disease, one that makes most patients just basically extremely “allergic”. It isn’t real allergies, it’s more that the mast cells are misbehaving and making the person react as though they were allergic. Yet, doctors are studying the links between mast cells and the other things that go on in the body like Interstitial Cystitis. There may be a link, but until they can crack the nut as to what the mast cells do and how they work, they can’t figure out what goes wrong with people like me. So, these researcher go to the extremes of diseases, studying people like me in order to figure out the bigger picture with people like you and those who have asthma or allergies, endometriosis and other problems with the body, etc. If they can find out what is wrong with mastocytosis patients, then they know what the mast cell in itself does and then they can go to all of the other areas that mast cells act within the body and see what it is doing or not doing there. This is why detrusor mastocytosis is cutting edge science, because only recently have they found out about mast cells invading into the bladder and the damage it is causing there. It really is fascinating stuff, if you look at the science of it. Yet, for us, it's the living with it that is the issue.

I’m going to give you the name of a doctor who studies mastocytosis and Interstitial Cystitis. His name is Dr. Theoharis Theoharides. He is one of the researchers into Systemic mastocytosis but he is also researching into IC and the function of the mast cells in the bladder. He is one of a group of doctors who believe there is a link between systemic mastocytosis and detrusor mastocytosis. However, this is all so very recent and there are not definite studies being done because they are still trying to figure out Systemic mastocytosis, they've not yet begun to branch out to the other areas that could be connected. And since there are lost of patients with IC who do not have any symptoms of Systemic mastocytosis, they are not concentrating specifically on the connection. It's just that they have found that a lot of masto patients have IC, but not the other way around. There are not many IC patients who show masto symptoms. So although there may be a correlation for masto patients, there is not for IC patients. But this study into the mast cells is what they are concentrating on and it may end up bringing relief to the IC patients because of this research. You see, mast cells are responsible for not only the immune defense, but they also are involved in the building up of blood vessels and nerves, etc, and they are also found to be involved with inflamations. That’s why when they find that the mast cells have invaded into the bladder that they call it detrusor mastocytosis. However, even though they call it mastocytosis, it is not the systemic version of the disease that causes so much trouble. Yet, because you are working with mast cells, they are going to react to emotions, stress, heat, cold, physcial activity and many other things that will trigger a response. To put it simply, mast cells are basically like suitcases, they have contents inside of different chemicals, a major one being histamines. When something triggers them, they open their bags and let out the chemicals, or degranulate. That degranulation is what causes all of the trouble and it may be exactly what is behind your pain and grief. You may want to speak with this specialist I’m telling you about because he may help you with medication to control the mast cells and not just the reactions you are having. Dealing with the source of the problem is what you also want to do, not just the affects of it. They are also finding out that leukotreins are being released in the urine, and this may be another thing, controling the leukotreins. I suggest you read about mast cells. Yet, if you really want to learn about how mast cells function, then google Mastocytosis and you will find all kinds of literature about the mast cells and how it functions within that disease. It will give you an idea of how the mast cell itself works. Then also google mast cells and IC and see what you can find out before you meet with your doctors. It’s cutting edge information we’re talking about and you may find that your doctors really are not up to date on some of this. Yet, I must say this, I’m no doctor and I really don’t know what all of your issues are, however, I’m a patient just like you trying to find out why my body has gone crazy and try to help figure out how best to deal with the craziness. The more you can learn, the better off you are! I can’t blame you wanting to find other ways about it all! It sounds to me as though you’ve been living with a lot of torture. But you should be proud of yourself for being so aggressive and doing all you can to help yourself! Yet, to confront that kind of surgery and then to see it go to pieces, I can’t blame you for wanting to keep with it. Yet, if you are seeing the writing on the wall, then I can’t blame you for wanting to find alternatives to that as well! Yet, if you ask me, I think I’d take the bit of the “invalid” option to that of seeing all that work rejected! You see, I understand your frustrations because this illness I have also is limiting. So many things can trigger me and whether I like it or not, there’s no way around it! Last Summer, in January, I went to the beach with my family. I grew up with swimming almost year round as a kid. I’m a fish out of water and love swimming as much as I love horseback riding, etc. I was a bit of a tom boy and very active. When I went to the beach I couldn’t stand being in the waves for more than half an hour. The water was cool, but not cold. It was like going swimming in the Gulf of Mexico! Yet it was cool enough to cause my body to trigger and almost send me into anaphlaxis! I can’t ride horses because the exercise will trigger anaphylaxis! I can’t play dodgeball with the children of my school because it will trigger anaphylaxis! I’ve got to be the quiet old lady but I’m only 47! It’s not easy and it’s not in my nature, but that’s what it’s got to be! So, there are times that even though we don’t want to and don’t like it, we must hear what our bodies are saying and do what we are being told or we pay the price for it.

Yet, in order to learn how to best adapt to our limitations, to be able to not get so frustrated with our situations, we need to understand more. And if our doctors can not give us the time to educate us and explain how our bodies are going crazy, then they must not complain when they find their patients having to educated themselves! Ignorance is not bliss, it's downright dangerous! And the more we can learn, the better we can protect ourselves.

Well, I guess I've given a bit of a lesson on Mast Cells here! ha ha ! That was not quite my intention, but I am aware that others read these forums and perhaps I'm helping someone else find the keys to their own body. I only wish I understood more about this situation of mine, but I have a feeling, Amy, that I'm going to have to seek out a specialist in Rio in order to help me with that. And that is a whole different challenge in itself!

Enough for now! I do appreciate your feedback! Let me know what you discover about your situation!

By the way, Amy, did they test for mast cells with you? Do they know if you've got Detrusor masto or not? You should ask for your biopsy slides to be tested for mast cells! It would be important and could make a difference. Also, have you had any doppler sonograms to see inside the pelvis for any kind of veins or fibrosis going on? I guess they would have done this with you. But they should test for the mast cells for it may help.

Good luck!

[lisathuler]

I was wondering if there was a Doctor from the Urology Channel who might be able to answer my original question as to Detrusor Mastocytosis, Interstitial Cystitis and the fact that to my pathological biopsies revealing that there is indeed interstitial Cystitis, however, to the naked eye all looks fine. Doctors, have you often heard of this occurring? I would appreciate a professional opinion as to this situation. Thank you.