I don't post often... but just needed to "talk" with others who understand.. I hope

[Arabelle Amara]

Sorry for the somewhat long winded post.... I guess I just need to vent...

I got IC shortly after being married... I'm 25 now... I got married in the year 2002, but I might have had this condition for years before... I had been going to doctors before for abdominal pains, that I had been told were "all in my head"... the classic response many of us might get.

I still have nightmares or flashbacks of the day in the hospital when I got diagnosed with IC. It was one of the most painful experiences of my life... I'll save the details as I had written it before a while ago...

Everyday is like living in a prison. I don't feel like I can leave the house or do anything. I have the constant urge to run to the bathroom, and some days I just stay in there, on the toilet, letting myself dribble every few seconds. I've had my monthly cycle for about 2 months now. It just won't stop. It's making the symptoms feel worse. There's also cramps involved with that... I'm living with the heating pad and pain medication. Most days I feel drugged. I don't like that feeling at all... I miss being active. I was always very active... There are some days when I can't sit down... other days when I can't bend my body in any direction even to put on or take off a jacket without feeling like I'm tearing apart my bladder wall area...
My memory and concentration levels are failing me more and more...

Family and friends don't really understand. Some think I'm just being "lazy"... I'm far from that. Nothing drives me crazier than being unable to do things in life. I had aspirations of being an animal trainer... specifically horses. I can't ride horses anymore with this. If I go on long car rides I'll notice my bladder bleeds a bit...

This morning I got up and tried to use the bathroom. My bladder was -very- full but it just wouldn't empty. I had to push to make it come out... I know you're not supposed to do that, but I had no choice. I'm worried in the future if this keeps going on the urine will end up backing up into my kidneys because it's not emptying. I also have IBS too...

Just recently I got another rare condition known as Rosacea Fulminans... my entire face just filled up with cysts... sinuses leak out of the skin... the whole face swelled up. I couldn't sleep due to laying on my face at all... I'm undergoing treatment for that as well... it's mostly gone with some scarring... hopefully the doctors can take care of it. Of course no one knows what causes that either.... and to top it off with all of this... and a past history of severe abuse... I've been feeling incredibly like ending my life but there is no professional help I can get because I live in Germany and I moved there without expecting to getting any of this... no counselor can speak english and my german isn't good enough to talk to them.... *sighs* My only option is going for inpatient treatment for months or years. I can't do that to myself... further putting myself into another "prison" and then being away from any friends or family. I'm just so frustrated with everything. I don't know what to do... and my husband can't come to America.. and he just lost his job so we can't really afford any treatments for me anyways... but so far they weren't doing me any good... so for all this negativity... thanks for those who took the time to read it... :(

[emilyrose197377]

I understand what your going through. I am doing some what better with my ic since I have found the right combo of meds. I know this week my bladder is bothering me and I have bladder spasm s because I have uti right now. It does get better.The patient handbook helped me l:welcome: to the icn.

[Trishann]

hey there, One thing about this network, people really do understand. When I hear people so despair of needing help to understand about this IC, and trying to find a way to make life better, it breaks my heart. But I am glad you found this place, it will help you understand and hopefully you will find answers.

I hope you can find a doctor that knows about IC. Sometimes, we have to take one day at a time. I know people that don't have IC can't even begin to know what you have to go through, but you can help them understand maybe by printing information about IC and giving it to them.

Also this place gives you some great information about IC diet and other things that can help you.

If all possible, I definitely would try to find a doctor. The bleeding for two months don't sound right. Also for some of us, the monthly cycle does make IC worse. I really hope you can get help. Don't ever feel bad because you need to talk, that is how we get help.

I hope you get better, Trishann

[blendno14]

Hi there,

I'm sorry that you feel so bad..
I'm active in the german forum and we have a database with good doctors for IC. If you PM me where do you live, I can ask the other woman for a recommendations.

I hope you feel better soon,
Christina

[vm]

I'm so glad you saw this, Christina. Hopefully you can help connect her with some resources there in Germany.

Arabelle - I find that sometimes reaching out, like with your post, is the start of the universe lining up help for me. It's often that first step of things being rearranged and brought into your view so that you can get the help you need to enjoy life again.

I was so sad reading your message. have you been to the doctor about all the bleeding? That can't be helping anything - and you must feel drained from that alone! How is your current doctor at treating your IC? Do you feel like you're being helped?

[Allylou]

I do hope you find something to help you...I don't know if this is even feasible for you, but regarding you Menstruating constantly for two months, the pill helps many get more regular...also I take it consequetively for three months usually, then break for a week when I get my prescription filled. All my doctors know I do it, and they say its fine. They actually have one on the market now, ("Seasonal" or close to that) that is specifically for that. I find (as others will attest) that the week of getting a cycle can be the worst for IC patients, so the less times a year, the better, Just a thought. Yours could be more serious though and this option may not even work in your case, but it may help others out there who find that Menstruating is a pain (literally!!).

[Arabelle Amara]

Thank you for the welcome... and... wow. I am so amazed to see the quick responses to my post. I feel like you are all :angel: lol

Initially when this started for me... I could not get a urologist to help me to figure out what was wrong. I'm pretty sure everyone has a similar experience. I diagnosed myself with IC, and I mentioned it as a possibility to the urologists. They insisted it was an irritated bladder or overactive one. I knew it couldn't be... which I figured out based on my inability to drink cranberry juice without a lot of pain... I thought it was more likely that I had a bladder infection since IC was so rare so I decided I'd help it out with the cranberry juice... Oh, that wasn't so bright!
Then with a lot of research, I did find a doctor, in Germany, who specialized in IC. (I think I actually found her through researching off this site...) She's the one who diagnosed me through the use of a biopsy and everything... (very painful week in the hospital...) and she let me know I wasn't crazy, and she told me based on how my bladder looked, it looked very painful.

(I even ended up diagnosing myself with the rosacea fulminans... as no doctor seemed to be able to figure that out... went to the hospital and got that verified as well).

For the IC... The treatment option I had was to put some sort of medicine into my bladder with electricity, and I had to use a special catheter for them. I do not get along very well with catheters... my body rejects them (pushes them back out) somehow... and on other occassions... when they do get them in to take samples... often nothing comes out. The nurses find it odd that at times they can't get a urine sample from me.
Anyways... the treatment options tended to put me in more pain than I could bear for even longer periods of time.

Christina, I live in Bardowick about an hour south of Hamburg. I was going to Flensburg for treatments in a hospital there. If you know of other doctors that have other treatments options that would be great. :woohoo:

As for the nonstop bleeding.... I initially had very very heavy bleeding as well as irregular cycles... and a severe loss of blood so I got on this shot (depo provera) to stop it (and it did)... later on I decided to get off of it. But then I got the IC and realized the pain only intensified... so I did try the pills which only made the bleeding worse... even heavier. I went back on the shot to stop it..... but it just won't stop bleeding. I'm about to get a hysterectomy... but I know the possibilities of making it all worse with that.... but I'm definitely going to be seeing a doctor soon. Thank you for your replies... and taking the time to listen. :)

[AmyMichelle]

Just want you to know you are in my prayers.. Don't give up!!

[Silverfern]

((Arabelle))

Hopefully the hysterectomy will help you. Please don't think that every pelvic surgery makes IC worse, as I'm sure that that's not the case. In your situation getting rid of that excessive bleeding and cramps could really make a difference. Sometimes we just have to take a punt that something is going to be helpful.

Warm hugs.

[blendno14]

Hi Arabelle,

so i posted a few questions in our forum & wait for the answers.If your husband has time,maybe he can order the book: "Blasenentzündungen, Blasenschmerzen, damit müssen Sie nicht leben!" (You don't have to live with bladderpain and cystitis) by Dr. Iris Ehmer. It gives an excellent overview and explanation about the currently available therapies in Germany and elsewhere. In fact it's a must read for every german IC patient, the author is an IC patient as well and she's a doctor. This could be a great help dealing with the doctors, as they often still know nothing about IC or better don't want to know because we're too expensive as patients....

I hope I have some information for you soon. I saw you had EMDA in the past, how often did you receive it and did you get any relief? I must admit that "we" (as in the women in the german forum) have mixed experience with EMDA, I personally never had it as I'm getting uropol. Did you ever get Uropol or Cystistat??

Viele Grüße, Christina

[Sandra]

Dear Arabelle -

I truly sympathize with you. It helps to know that you are alone and that IC is actually very common and many women do not know they even have it. I feel the same frustration as you. I don't think people realize the pain (both physically and mentally) that this disease causes. They just think you have a bladder infection and it will pass. Unfortunately it does not. Somedays, I get really depressed because of the IC and all the other diseases I now have from it. I guess it's normal to feel this way since there is no cure. Please know that my thoughts and prayers are with you and all the women/men on this website. I'll tell you, it helps to have the support of so many kind people. Hopefully we can work on things to help us feel better. I really need to look at the IC diet and other medications (Elmiron) that I have not tried. Best wishes,
Sandy

[Arabelle Amara]

Thank you again for more of your kind responses. Have you ever had those days, where you just try to pretend you don't have this condition and then you pay for it later by trying to have one normal day of life? That a big no no to do. :tsk: (Is guilty)

Christina, I had a treatment that was an installation into my bladder with electrical signals used to intensify the medicine. It's been a long time since I have done them... is that what EMD is? I was always referred to my treatment as installations. It was the only treatment my doctor gave me as an option to try. It was excruciatingly painful, but I was told that it would be painful the first time and it would get better on the second time. The second time I went it was even worse.... that's when my body somehow managed to "kick" the catheter out of my urethra. lol
After those treatments my husband would accompany me to the bathroom so I could cry on his shoulder as I tried to pee. I vowed never to do them again after that.
The nurse told me she didn't like doing it because she knew it hurt me. She was a nice nurse... Plus, the second time I did it, I ended up with burn marks on my skin where the connectors for the electricity were. I told them at the time it was burning my skin, they looked and claimed it was fine, but afterwards I had red peeling skin and slight scarring...
That could have also occurred (in theory) because I live with the heating pad, so I already had some burned skin marks where the heating pad was.
The doctor I was seeing is supposely an IC specialist at a urology hospital. I had to drive 3 hours to see her, and driving at all isn't that easy on the bladder much less the 3 hours there and 3 hours back. Everytime I did an installation, I had to stay overnight at the hospital...
I'll definitely take a look at that book and find out about Dr. Iris. I was given no other treatment options and I really would like to be able to try something else that might help me in some regards.
Thank you so much. I am so glad I made a post when I did so I could learn of other possible treatment options in Germany.
Thank you also Sandra for your encouraging words. It is nice to not feel alone. I wish others could understand how demanding this condition is physically and mentally. It's like a full time job. lol
Best wishes to all of you and *hugs*

[Arabelle Amara]

P.S. I am just so amazed I made the message when I did... and to find someone else from Germany to help. What are the odds of that? This is truly a great site!
I am so heartwarmed by all the replies I got. You are all such wonderful people and certainly non deserving of such a condition.

[1967donna]

Today 10:16 AM
Arabelle,

Hang in there my thoughts and prayers are with you. I can totally relate to the fact that friends and family don't understand.

Best of Luck!

[icsonja]

Most all of us have had days when we feel much as you do now, that we cant take it one more day, but thru faith, and the amazing strength of a woman to live we are still here. It can be a true test of what you are really made of and for me I am amazed I have survived thru all I have been thru, the will to live and see a cure in my life time is a strong motivator.
Hang in there and realize we all have bad days, and it is ok.
Sonja

[Silverfern]

Arabelle

You're so right when you say living with this is like a full time job!! I so agree with that. :rolleyes:

:grouphug:

[blendno14]

Hi Arabelle,

Unfortunately it is a tiring to find a doctor in Germany that either believes that IC is an illness, and not a psychosomatic problem , and then to find one that will treat you, as it is in the USA. Anyhow all I can recommend is that you keep trying and dont give up hope!

I found one address in our database:
Dr. Stephan Thomas, Ratzeburger Allee 111, 23562 Lübeck, tel: 0451/5041020
Unfortunately I don't know how old this entry is, but you might want to phone him and ask if he still accepts IC patients. I also sent a PM to a member of the forum from Lübeck, - I'm still waiting for an answer.

In the meantime here is some information:-
Elmiron is available in Germany BUT it's not paid by the medical insurance. It was somehow forgotten during the reform of the health care system (no joke) in 2004, until then it was paid.You can buy it over the counter without any prescription as "SP54 Pentosanpolysulfat", but it costs 25 Euros a pack. There are two options to get it cheaper: you have to find a doctor who prescribes the so called "ICA-Mix", recommended by the ICA Germany. This is a prescription that contains 97 mg Pentosan and 3 mg Amitryptilin (Elavil in the USA) per capsule. As the health insurance has to pay the Amitryptilin, the whole prescription is paid for . You need to find a doctor with a bit of courage to get this prescription. My first doctor refused, but the doctor in Mainz where I am now sees no problem.
I don't know how good your german is, but maybe your husband or a german friend ca take a look with you at this link: http://www.ica-ev.de/50450795b80b05901/504507960e0b77c09/index.html

The second way to get it cheaper is ordering it via Internet (this is not the product elmiron of course, but the extact same active ingredients). If you consider taking it , I can PM you the address. Actually 5 or 6 women in the german forum use this method, most of the others are taking the ICA-Mix.
I told my doc that I can't take the Mix because Amitryptilin causes urgency for me, and I told him I get it via internet and he sees no problem. I wanted him to know just in case I need his help in case any side effects need to be discussed.
. The second most used medicines is Uropol-S (not available in the USA) by Pohl Boskamp. You can google Uropol-S and the product information. As Uropol is cheaper than Cystistat doctors tend to prescribe it more often then cystistat. Interestingly both products seem to work differently, my bladder didn't like cystistat much but I can tolerate Uropol-S quite well. It is important to get it at least 4 times or more often weekly, then bi-weekly or once a month. I was lucky and got it about 10 weeks in a row, then bi-weekly as long as I wanted.

cystistat is also available, but more expensive so the docs and assurance don't like to pay. Almost all women in the german forum get Pentosan, Uropol or Cystistat. Actually some woman have big trouble with their assurances, as they refuse to pay either Uropol or cystistat. The situation is so complicated that I cannot explain it detail. In fact, some of us have NO problems, some have lot of trouble (and a lawyer to get the medicine), some docs refuse to prescribe it because they are afraid (or cowards, as I call them).

Arabelle, I have to leave now but will writ some more tomorrow, I just wanted to let youknow that I havent't forgotten to write...

In the meantime, of your husband can help this is the german forum: www.ic-forum.de
If you want, we can also talk on the phone, I can PM you my phone number if you wish to talk...

Sending you best wishes & I hope you can enjoy the brilliant weather at least a bit...
Christina