Where are all the 60's? [Archive] - ICN Support Forum - Interstitial Cystitis, Overactive Bladder, Pelvic Floor Dysfunction

Annie2

10-13-2007, 06:05 AM

Hi, Sue, and :welcome: to the ICN! Glad to see another senior around!

I'm with you. My IC began very suddenly after I stopped hormone replacement therapy. I experienced a very premature menopause (began at 35!) and was on HRT for over 15 years...until all the warnings came out about it and then stopped suddenly. IC struck quickly after that....no previous bladder problems at all. I tried re-starting HRT but to no avail, though I didn't stay on it very long. It seemed to me the horse was out of the barn and couldn't be put back in. I'm encouraged to hear you have had success with it and would very much like to hear what type of HRT you are using.

I, too, am amazed by the strength and determination shown by the younger members here who are raising families and working while also dealing with IC.

Again, welcome to the ICN family. There truly is a great group of understanding and supportive people here. Hope to see you around frequently!

Joanie

10-13-2007, 07:13 AM

I just turned 59 and was diagnosed a few months ago, but too had symptons long before that. I am currently using an estrogen patch and trying to get off of it, so I am amazed that most women feel that IC is better when on HRT. Maybe I shouldn't get off.

I too feel so much compassion for the young working women and moms. I truly don't know how they cope. I have just signed up to volunteer 1-2 days a week at our local medical center. I think that I will feel better if I keep busy and try not to think about how I feel. The ICN family has been a tremendous help and learning experience. Thru this group I have learned coping methods and about natural products, like Aloe Vera and Cystoprotek. I am early in my treatments, but very hopeful of remission, since reading all the wonderful info. from sufferers.
I just read a wonderful article in my local paper about a man dying of cancer, who has been fighting it for a very long time. (an continues to do so, even though he is on the proverbial downhill slope). The women writing said that his story and courage has made her remember that each day is an opportunity to enjoy something and love life, so I am thankful that I have so much to be grateful for and to be happy. Age is just a number and the number could have stopped long ago.

Thanks to all the ICN family and have a great day.

SharonA

10-13-2007, 09:29 AM

Is 58 close enough????

sedavisoes

10-13-2007, 09:48 AM

I'm on the Climara patch and Prometrium capsule. There was a doctor, who has IC, at one of our support group meetings and he feltI should keep on taking the HRT. After along talk with my nurse practitioner she agreed. Of course it's controversail but I wont go back to how sick I was before I resumed the HRT. My quality of life is back to normal. I think my hydro distention started me on my road to recovery and of course Elmiron and Elevil have helped too. Sue

Agape

10-13-2007, 11:32 AM

I'm with you! I haven't been around too much lately, but hope I can be here more often now.

I just turned 60. I'm not crazy about this new age category. I prefer the old all-inclusive 50 and over category. There aren't that many 60 and above who post regularly. I think separating decades above 50 isn't wise and is limiting the responses you receive.

I agree with you. Once you are past 55, you are considered a senior citizen, so why not just say 50's an older. Do we have to be reminded that we are in our so-called "golden years". They say age is only a number and since the main reason we are on this forum is IC, that is what gives us something in common regardless of age. I just turned 60 too, but hate to admit it. When I am feeling good, I sure don't feel 60.

Agape

10-13-2007, 11:40 AM

I'm also in my 60's and have had IC for about 6 years, although I think I probably had it for many more years. Luckily I've been in remission for about 5 years. I think mine started showing symptoms when I stopped my hormone replacement meds. I am now back on them and will just deal with the reprecussions if they occur. I'm on the smalled dose possible and no symptoms. I think us older gals probably deal with our IC differently than some of the younger patients. I cant imagine having full blown IC and trying to raise a family or work. Hope we can get more seniors interested in this forum. Sue

:) It is such good news to hear that you have been in remission for about 5 years. I think I've probably had IC for about 11 years, but the symptoms were off and on and I was never officially dx until this August. After only being on Elmiron since then, I am feeling 98% better and hope this is remission and will last. I am gradually introducing foods back into my diet to see if that affects the way I feel or not. Hopefully I will be totally back to normal in all ways very soon and can put this horrible condition out of my mind. Oh, I know I will probably always have to take medication, but like you, I will just have to deal with the reprecussions should they appear. I use Vagifem for hormone replacement twice a week and sometimes Estrace cream vaginally too.
I pray for the young girls who have many years to deal with this and who have small children to take care of also. I teach preschool and know how hard it is for me to deal with them several hours each day when I am having a bad flare. I can't imagine having a toddler or baby to take care of 24/7.

sedavisoes

10-13-2007, 12:54 PM

feresp497

10-31-2007, 04:37 PM

Hi, I just saw this thred I am also in my sixies, I have had ic for about 15 years maybe more. I am on topamax and tofranil they are new medicines to ic my doctor said and they are helping me. I hope you are all doing well. This ic is terrible. I am feeling better now so everything is well. Violet

Kip

10-31-2007, 04:41 PM

Agape are u greek by any chance?

Agape

11-01-2007, 10:00 AM

Agape are u greek by any chance?

:rolleyes: Nope...sorry. My dad has a German background and my mother English. I was born in the south..Georgia. I chose the pen name because of my spritual background. I guess that is what you were referring to.

feresp497

11-01-2007, 05:50 PM

Joane, Topamax is for nerve pain I have a hunners ulcer in my bladder that is sending pain to my labia though a nerve. Tofranil works for burning in the urethral and for bladder pain . They are both helping me very much. Also they help for frequenay. Violet

Zygala87

11-01-2007, 11:27 PM

Hello. I am 64 as of 19th of OCT. I have had IC for over a year now. I must say it is a total life changing experience. Who would have thunk it! Suddenly one is doing the normal retirement, Grandma thing when they get hit by a train and life is never the same again. I must say I am doing very well. Few flares. I have gained weight, and have belly bloat. I'm afraid to travel far from my Doctors and eatting out is no longer fun. A HYDRO was the most help for me. I take Elmiron and I'm very careful with what I eat. I live in fear that my IC will return to point "A" a 10 in pain and frequency. I am lucky to have good Doctors. Thanks for the 60's post. I enjoy talking with people my own age. I also find every post interesting. Hugs, Ziggy

sedavisoes

11-02-2007, 10:20 AM

I didn't know about Topamax. I also have Hunners ulcers and although in remission I can keep that in mind for the future. I know some people have them surgically removed but I hope that I dont have to face that. I still take Elmiron and a low dose of Elavil. This has worked for me so far. Sue

Judith67

02-01-2008, 07:35 AM

Hello 60's sisters. I just found this site. I've had IC for two years. Mine is PAIN. I stopped taking Estrogen after being on it since my hyster. at 40yrs. I am 69 now so that was a long time. My IC problems started right after that. I had Kidney stones for a year before that. I've had all the tests they keep talking about for the diagnosis and Uro's, Primary and Nephrologist Doc's and now for two years experimenting with everything I can get hold of and read on this wonderful site. What a life saver this has been.

I've been taking Algonot+ for about a year and have read so much about Cystoprotec helping so many of the gals and thought I would change but wanted to find out how much Quercetin is in it. I take 4 of the Algonot daily and it says it is 600mg for the four. And want to have the same amount.
Any ideas????

Bless us all....Judith67

sedavisoes

02-17-2008, 03:54 AM

My story is much the same as yours. I developed full blown IC along with Hunners ulcers at 62 after going off my hormone replacement meds. Thanks God I've been in remission taking Elmiron and Elavil plus I did go back on the Hormone replacement at a lower dosage. It sweems so many of us have other urinary problems. I've had multiple baldder infections and kidney stones. One of my kidneys only has a 10% function so you wonder if this all adds to our IC problem. Glad to see you write the forum. Sue

Agape

02-17-2008, 02:24 PM

It's great to hear from so many "older" ladies with IC and to see what is helping you with your symptoms. I don't like the idea of always having to take Elmiron in order to protect my bladder, but that is what I've been told by my uro. I do know that I am in the percentage that has experienced hair thinning because of this and I hate it! It's awful that I must suffer one loss in order to have a "healthy" bladder. Fortunately, food doesn't seem to bother me much. I must avoid caffeine, cranberry and other acidic juices, but the rest seem to give me few if any symptoms. I am thankful I am doing so much better than 5 months ago. However, I broke my ankle Thanksgiving and have been on pain meds off and on since then. These pain meds may be helping with my IC symptoms too, so once off them my symptoms could return. I sure hope not!!!

sedavisoes

02-18-2008, 02:10 AM

My hair has also been thinning but I think it may be more age and hormone related than the Elmiron. I'd rather wear a wig than have the pain I originally had. This is a horrible disease that makes us have to make choices between IC and other problems. I dont like taking hormone replacement but I know without it I'd be right back at the beginning. sue

barb 1

06-30-2008, 06:55 PM

Hi everyone.

Barb 1.

I am sixty two.

Good to know there are older people around with these problems

hope to hear more.

:angel::)

sedavisoes

07-01-2008, 01:57 AM

So glad to see you here. There doesn't seem to be alot of action on the 60's chat but we are here if you have any questions. I think we are unique because of our age but certainly have the same problems. These are supposed to be our golden retirement years and we're fighting this terrible disease. sue

ICNDonna

07-01-2008, 02:18 AM

This senior citizen is doing pretty well.

:)
Donna

SharonA

07-01-2008, 03:11 AM

The gray hair is trying to take over, but I am doing well. :)

sedavisoes

07-01-2008, 06:11 AM

It's very encouraging to hear so many are doing well. I've been in remission for 5 years but sure can remember the dark days. We need to keep; the 60's board up and running. sue

lindavk

07-05-2008, 05:58 AM

-- it is just great to see other 60's with this crummy IC on this forum - I am 66, taking Elmiron and still on HRT - think I will be on both forever - am having hair loss but that's preferrable to the pain of IC - sending all the good vibes to all of you!!

LynnInDC

07-05-2008, 09:19 AM

sedavisoes

07-05-2008, 09:50 AM

Hi Lynn, I never had an IC symptom until I went off my HRT. Although my doc isn't thrilled about it I insisted she put me back on the hormones, I do my annual pelvic and mamogram but will not go off the HRT. Sue in Maryland

LynnInDC

07-05-2008, 10:08 AM

Thanks, Sue. I think you might be very right. I went to a wonderful Women's Clinic recently and the nurse practitioner said that the HRT research was very controversial. Given how much better off I was on HRT than embedded in this miserable IC condition, I'll take my chances and have yearly tests and hope for the best.
LynnInDC

sedavisoes

07-05-2008, 10:44 AM

I think we have to take control over what we think does and doesn't work for our IC symptoms. There's a trade off with all the meds we take. I;m glad that you are getting relief. sue

Agape

07-06-2008, 09:34 AM

Just read the posts from the 60's crowd. I went off HRT a few months ago and I'm now dealing with full blown IC. Maybe THAT is the missing link here! I am definitely going to ask my doctor about that. I had no trouble getting off HRT... I did it slowly over a few months... no hot flashes or anything. Now I'm in lots of IC pain and I'm getting one flash after another. I'm also on the IC diet and because of other stress I've lost about 23 pounds. I'm very worried about my bones... legs aching and I'm exhausted all the time. A long, sad saga... I'm looking forward to regaining my health!
Anyone with similar problems.. I'd be so glad to hear from you...
Hugs to all of you...
LynnInDC

One of my symptoms after being dx with IC and going on meds was "aching legs". It gradually got better and now I appear to be doing fine except for the hair thinning problem. At least my bladder is doing so much better and the frequency etc. are under control.

I was wondering how old most of thed 60's were when they were dx with IC?

yvonnef

03-09-2009, 04:58 PM

Several years ago I did post on the 60's thread and met some nice "girls" I dont know where we all went but I think we feel a little different than the younger IC posters. Most of us are at a different place in life and our careers and families. I sometimes feel I have less to contribute. Also, being in remission sort of seperates you from others that are suffering so much. Not that we all haven't been there and I worry about going back to that awful time in my life. You're right about not feeling our age I often wonder who that old lady is in the mirror. Sue
Hi Sue, My name is Yvonne, I am in my early sixties, andhave had this curse for approx. 27 years, but never diagnosed, I had a male urologist tell me that I need a phyciatrist, I knew I didnt, but it made me very unhappy, I was officially diagnosed last year, joined this ICS which has been a life saver for me and I am really appreciative of this support. I am using the ICD diet and a few other remedies and at the moment I am feeling quite good and hope to stay this way?I do not know of any others living nearby and it would be great to talk with them and not feel so alone with this.& yes being 60 isnt so bad, we have been there and done it, so its onto the next stage of fun, love and laughter.

Rocklandgal

03-16-2009, 09:00 AM

Hi Ladies,

I'm not 60 yet, but getting very close! I was diagnosed about eight or nine years ago. I had hydrodistention, but only felt better for several months. I really want something more permanent. I have been doing the diet for the past three months and have had some very awesome results from it. If I am very careful, I feel nearly "normal" most of the time. But, it is so nice being retired and being able to stay home if you need to. You can take a warm bath whenever you feel like it, or just rest on the couch! If I was still at work, I'm not sure if I could handle it. If I had small kids and a job, it would be tough to say the least. The elimination diet is hard at first, but worth it. I am doing more cooking than I have in years. I make my own bread and rolls, and also my own soup. That way I know what is in there. If I was in agony and twenty years old... Wow, I can sure see why some of these "kids" are feeling sad, depressed and panicky. So many women seem to develope IC around menopause. That is what happened to me. I was fine most of my life. Could eat anything at all. But I always wonder, if it is involved with menopause or hormones, what about all the young people with IC. And from looking aroung these forums, there are plenty of them. I continue to pray that a "cure" will be found soon. We must stay hopeful. Wonderful to talk with all of you. I agree, once it is past 50 or 55, just have one category.
Karen

yvonnef

03-16-2009, 02:52 PM

thanks for your reply Karen, I have had IC(undiagnosed) since I was 35, and yes it`s depressing. I have had hydrodystention and it worked so well for a few months, but now I find I am up 2 or 3 times per night (broken sleep). I guess I have gotten used to all the symptons,and when I catch a cold or virus, I am up 5 to 6 times per night. I dont like it but I guess that is my lot in life, along with many other sufferers. I find the diet very helpful, and sometimes I feel so healthy its marvelous, then I crash again. I find that I must keep myself warm, no draughts, cant go swimming (I watch everyone else), keep out of airconditioning, etc. I live in a hot climate, so it is difficult, there is aircon. everywhere, so I am continually asked, "why are you wearing a cardigan etc.?"when I am in a shopping centre. Same people,same response. I find they are ignorant,dont understand even when told continuously. So I just smile,change the subject.I am resentful of this illness.As a younger woman,I worked,looked after a family, and it was difficult, going to work with my head in a fog, dashing off to the loo, and uncompassionate co-workers, who made sex jokes. But its in the past, and I am more accepting, it could be worse, and a sense of humour, friends and activities help. do keep in touch and thankyou for your reply. Yvonne

sedavisoes

03-17-2009, 07:07 AM

I thank God everyday that I didn't have IC symptoms while raising a family. I too developed mine after menopause and going off of my hormone replacement. I've been in remission now for over 5 years. The only thing I haven't added back to my diet is Caffeine. I use Euromild and that's a good substitute. I know my remission will come to an end but I'm traveling and enjoying my life while I can. It's so hard for the younger women to get across the terrible thing they are dealing with. I keep praying for a cure. Sue

Goldfinch

03-17-2009, 08:49 AM

I'm not so sure I liked lumping the 60's in a "60 and older" category. It sounds like a throw-away group. Like, whoa Nellie! Is 60 old? Is 70? Only from the perspective of a 20-something is it high enough to quit counting. I keep telling my mother that 90 is the new 80. She's taking her grandkids to Florence for her 91st birthday! But I guess if there aren't that many of us it makes sense to have an inclusive bundle!

I'm 61 and came out the cooler side (I felt like a limp noodle for 3 years!) of menopause in my mid-fifties. It wasn't until a year and a half ago that I had my first IC symptoms. I went into a complete spontaneous remission for part of that time, but then the symptoms returned with a vengeance. I was diagnosed in the fall and have been on Elmiron since December.

I find it heartbreaking that so many 20-somethings--my daughter's age--are being diagnosed with this disease. What a burden to be saddled with at so young an age, in college, navigating new relationships and, (shame on us in this country!) approaching or already at the age when they are no longer covered by their parents' health plans and don't have jobs that provide any insurance either. Many of the drugs we take are completely out of the question for those with bad or no coverage. That's criminal.

Rocklandgal

03-17-2009, 08:50 AM

Yvonne,
When you said "sometimes I feel so healthy it's marvelous", it really strikes a cord with me. When I feel great, I tell myself that the IC pain isn't that bad, and that I can take it. But when I get pain again, I ask myself what the heck I was thinking! It's the type of pain that is just hard to ignore. Like, you can have a headache or something and just go about your day. But the IC pain just takes all the joy out, doesn't it? As for keeping warm, I have never thought of that angle before. One of the reasons why IC is so tricky is that if you have a hundred different people, you have a hundred different causes, cures, and types of pain. But it is all IC and it is such a mysterious thing. I went out to eat with my cousins a few weeks ago. I was trying to order some pork chops and explain that I just wanted them plain. We finally got through that and I ordered some vegetable, and I had to explain that had to be plain too. Then I got a baked potato and that had to have nothing on top. By this point, the waitress obviously thought I was a royal pain, and my cousins were starting to laugh at me. Now, I know my cousins love me, and they didn't mean any harm, but they just don't get it. They are sitting there eating spicy chicken wings, chicken parmigiana, and their glasses of wine. They are happy. I'm the one examining the menu with a microscope. I remember the days when it was so much fun to go out to eat. Just pick up the menu and go with whatever you were in the mood for. Now it is like a huge chore. I do admit that it is getting easier, and there are quite a few things that we can eat. But, I'm sure that you know what I mean. I'm not a big drinker, but when everyone has a glass of wine in front of them, I want one too! But there is one thought that I saw on one post here a few weeks ago. We have to start to try to think how lucky we are in many ways. What about the poor people who just got a terminal cancer diagnosis??? IC? I'll be thrilled to take that diagnosis anytime, won't you? So, keeping positive will help. I believe it. Also, if alot of us seniors get to stay home (not all of us are retired, I know), that is a huge blessing. I usually have to get up at night about five times. But I am lucky in a way too. It usually takes me ten seconds to get back to sleep. What if I was one of those people who can not ever get back to sleep! I'm lucky. The sleep deprived are really suffering. I just gotta believe that a real cure is coming. Diseases that were incurable just a few years ago are getting a cure in recent years. So one day we are just going to read that there is a cure. Also, I think that it is really coming out how common IC is. Some doctors never even heard of it. We used to think that there were only a few of us in the whole country. I just read somewhere that there could be a half million to a million with IC, and possibly many many more. I think the word is getting out. I just can't get it out of my mind how I read so many people get IC when they enter menopause or stop their HRT mececine. It just sounds like there is a big connection there somehow.Sorry that I rambled on for so long. I can type pretty fast, so once I get going, the words just seem to pour out. I have found this site to be such a big help. Just to talk with someone who knows what you are going through means so much. I try to tell my husband how I feel. He's a nice guy, but he doesn't know what it is like. You do know. It makes a difference. So nice to talk with you. I am in the New York area. Did you hear about our amazing "miracle on the Hudson" where the plane managed to land in the Hudson River with no injuries? I think that I am going to try to locate some sort of a group in my area(if there is such a thing) with other people to talk with. It does help to talk.
Wonderful to hear your take on things.
Karen

nottoc4

03-17-2009, 08:52 AM

I am 66 years old and was DX last May. Still having some problems with burning just inside the vagina,I'm on Steriod cream right now for it bur have been on Micalog and yeast meds. having a hard time finding something that works. I use Premarin vaginal cream nightly as my tissues have really thinned.

yvonnef

03-17-2009, 04:12 PM

Hi Karen, I was a typist, so I can type faster than I can think and I run away with myself sometimes too. I want to thank ICS and all the wonderful ladies with their input, to know someone is "sympatico" with this problem. from reading all the posts, it seems that this problem is connected to Menapause, hormonal changes, but mine started with glandular fever when I was 35, I was proprietor of a seven day (&night) mixed business , couldnt stay home and rest as advised by doctor, kept working until collapse and ended up with 7 months out of circulation, a poor immune system and IC (undiagnosed until 2008. I have an underactive thyroid(Hashimotos disease),controlled with thyroxine & urologist seems to think that it is all connected and IBS as well,though I dont have that. Oh yes, Osteoporosis too, so I conclude it has a lot to do with mennapause, hormonal changes , but still do not want to take HRT with the risk of cancer. I suppose everyone has to have an illness of some sort at this age in life, so THIS is it, I can still walk, get around and (line dance). and laugh..So chins up and keep going forward. Yvonne xx
Yes I did hear about the plane landing in the Hudson, amazing,they were lucky and so are we (I think) There is no group here, I live in a small town in Australia, the big cities have the groups etc. I wouldnt know where to start or how to do this here. Most people would think I was a hypochondriac. that is often the reaction of others who dont have this problem.

Rocklandgal

03-18-2009, 08:30 AM

Oh Wow, Yvonne. Australia! What a thrill to be able to talk to someone from so far away! My husband grows tomatoes (and many other things) from seed under lights. The whole lower part of my house is filled with shelves, lights, and plants. I have to weave my way through it all to get to my laundry room. He trades seeds with people on seed forums (like this one, but only for seeds), and he traded quite a bit with someone from Australia. They traded pictures and everything. That's the cool thing about the internet. You could be talking to your next door neighbor or some thousands of miles away. I would never have asked you about the airplane on the Hudson if I knew where you lived! Wow, that is really amazing to me. We heard alot about all the fires there. There was one video going around on our news about some guy (maybe a fireman?) who came across a koala bear and was feeding it water out of a bottle, and it was drinking it like crazy. One of the cutest things that I have ever seen. Oh, and another thing, I have the same thyroid problem that you have and also take levothyroxine! I think alot of problems in this general area are inter-related. There is a natural doctor that has a talk show on a radio station in my area, and he takes calls. I got accepted to ask him about IC. He talked about diet and such. He also said (I'm paraphrasing as best I can) that the colon and the bladder and other things have nerves bundled all together which run to the spinal column. He said they are so interconnected that pain transmitted from the colon send pain messages that can affect the bladder as well. He said that is why if you eat a solid food, you might wonder why it hurts my bladder if it is not liquid. He said that is the reason why. Makes sense to me. Of course, I'm not a doctor obviously, so I can't judge his statements. Your horrible collapse sounds terrible. I feel bad for anyone who has this. I would also love to take HRT, but I'm just afraid to. I used to have some hot flash issues at night which were really annoying me. Of course, now it seems like the least of my problems. Just like I said, at times we just don't know how good we have it! It was so nice to get to talk with you a little. I haven't travelled very much, and have never even been on a plane! Now, with the internet, I sort of am travelling a little. I pictured myself going places a bit after I retired, but it is so hard to travel when you have to go to the bathroom so much, and you have to find food you can eat. I worked in the Post Office for 35 years. Thanks for chatting with me.
Karen

sedavisoes

03-18-2009, 08:43 AM

I was interested in the post from someone who is cold all the time. I always have the fireplace going and gloves with the fingers cut out on.My poor husband is sitting here in short sleeves. I figured it's either ELmiron or Elavil as that's all the IC meds I take, I did go back on hormone replacement. I actually discussed it with a male doctor who also had IC. His opinion was something was going to kill me sooner or later and I wanted relief from IC symptoms. I talked it over with my urologist and my primary care physician and they supported my decision. I have been symptom free for five and a half years. This is a very personal decision and we all have to do what's right for us. I wanted to travel and enjoy lifewhile I could. I have a mamogram and a pelvic/with pap smear more often to try to keep on top of any problems. Not trying to convince anyone else to do this but it works for me. Sue

Agape

03-20-2009, 03:10 PM

It's good to hear from so many of us "older" gals. However, even though I'm older, I still work and teach young children, so in a way I have some of the same problems that the younger girls do. I was dx almost two years ago. I think my IC problems started when I had to have pelvic surgery for organ prolapse. All of it kind of went together. The gyn I was seeing at that time never mentioned IC to me even when I explained all my symptoms. It took going to several different doctors over many years before I finally was told about a specialist in my area. He did the test and the rest is history. I do pretty well now that I am on Elmiron, Elavil, Vagifem and Zoloft. I can eat almost everything with few problems. I do avoid caffeine and citrus. We must stick together. Keep posting!!

sedavisoes

03-21-2009, 02:02 AM

Glad to see eveyone here. It's very helpful to talk to others experiencing what we're going through. I remember when I first found the ICN website I spent hours reading everything written. It was very comforting plus educational. We all are in different places in our IC journey and I've learned so much from others. There is a local, 2 hour drive, support group and that was wonderful to make contact and actually talk to some doctors who were involved in IC research. I've been in remission now for quite some years but my Uro reminds me it wont last. For now I'm enjoying every painless minute I can. I will never forget those awful days and nights when it was such a struggle to cope much less get on with my life. Sue

NancyB

03-21-2009, 07:09 AM

Just wanted to check in and say "Hi" to everyone over 60. There seems to be a number of us.

I was diagnosed with mild IC during perimenopause 14 years ago, but have been on HRT ever since and have been fine. If you want to read my "Success Story" go to the thread I posted in December 2007 entitled, Estrogen as an IC Treatment.

Hope everyone is having a pain free day.

NancyB:)

Zygala87

03-22-2009, 01:20 AM

Hello my Sisters. I am 65 and have no regrets about my age. Hydrodistentions have helped me greatly. I am on Elmiron and did lose my hair but it grew back. I went through the change at the young age of 45 but only came down with IC 3 years ago. I take the smallest dose of estrogen possible. Cold bothers me awful but I don't know if it's IC or just my age. Most of us have a retirement coming in and don't have to be afraid of job loss or losing our homes. There certainly are exceptions. One friend of my own age loss everything she had in the stock market! So sad. Young people today seem to be going through the worse times I have ever seen in my life. My only Granddaughter will graduate college this May and I fear she may take years to find a job. I enjoy the company of people my age. We have much in common. Most of my days are pain free but as us all we could go down-hill at any time. When I eat out I quietly tell the person who waits on me that I have health issues with food and would they please make sure onion & tomatoes are not in my food. So far they have gone out of their way to help me. When I do get depressed over IC I do like most do on here, think of many other conditions that could be worse. I have IC it does not have me, is my motto. Hugs and good days to all. Ziggy

yvonnef

03-22-2009, 05:32 PM

Hi Ziggy, I have just read your email. I feel the cold too, something awful. I upset others because I close windows,doors. etc. I line dance which I just enjoy doing, but I (we all) get very hot and sweaty. I have to turn OFF the overhead fan which is above me, as I end up freezing cold, the fan striking back on my wet perspiring body with me ending up with a chill in the bladder and a cold. Others just shake their head at me, not understanding, but I can`t help this situation. It is only 1 fan, there are still 7 other fans operating, so I dont feel this is too much to ask. I dont understand why I am like this. I have had countless tests etc. over the years. not one doctor can tell me why? maybe it is part of this IC? Its great to hear other stories and not feel like a hypochondriac. Best wishes to everyone. Yvonne

barb 1

03-25-2009, 05:48 AM

Hello again to everyone.

Sorry I have been very lax in my replies.

I had my stim replaced last summer and they could not remove all the old wires and was not feeling good.

Then my 17 year old granson passed away on 13th December and I have been a "basket case" ever since.

Now it is time to try to get back on track. I try to remember all the very best times. They had just enrolled him at the University and he was looking forward with great happiness.

But it is so good to read from other sixty plus.

We are not alone but I think our generation were taught to "keep things private" you just did not talk about "such things".

Thank goodness the world has changed and I love reading how others cope, feel, and different things they have tried.

Especially the diet ideas.

I can also drink the lime gatorade but the others do not go well for the bladder.

I just feel so for the very young women with these issues as they have to cope with their growing families, husbands, work and all the other modern stresses and cope with these issues as well.

When I was working it was our huge joke about the speed at which I could move to the bathroom and then it turned into just how long I could go without "peeing"!

I also had no bowel control so our laughter was a great healer.:biglaugh:

Thank goodness for the device, but not for the after effects.

Smile and move on.

When my energy runs low I think of all the groups that I try to do things for and fighting for the homeless here in our fridgid -40 winters.

I knit twice as fast for the Mission and we try to put pressure in the "right places" for others.

There but for the Grace of God. And with this recession there are a lot more people who are going to need our support.

The days when the pain is out of control are the hardest, the nights when you just can't sleep, just get up and read all of your messages and it helps so much.

So God Bless you all for being there for us all even when I did not post, you were there, day and night.

Then, of course, I forgot my password, so many kind thanks to everyone that got me back onto the site. :hmm:

Thanks to you all

Barb 1 and :cat:

:angel::pray::kissing::grouphug:

jane2

05-14-2009, 12:27 PM

Thought I would drop in and say hello to everyone. Just arrived here at this site last week and have learned allot. Probably had the startings of IC in my early 40's at least that is when the bladder infections started. No telling how many real infections I had, until recently when I went in to my doctor and my sample was clean. My doctor knows my history and sent me to see a URO. I have been on elmiron for 3 weeks and have had 2 dmso instil so far. I have some hope that what I have learned here about diet and with the drugs, I can also be in remission. right now, my life and diet have changed. Not bad, I've lost 4 pounds. Eating better.

I live on the texas coast have 5 grandkids who live on both coasts, guess I'm the one centrally located. Have 2 sons and wonderful daughter in laws. I just call them daughters. Fun! Husband & I love to travel and learning how to take care of myself while doing that too. This summer will be the real test with IC and traveling. wish me luck.

Guess that is my intro, glad to met all of you. Wishing each of you a pain free life, with blessings.

jane2

yvonnef

05-14-2009, 09:04 PM

good to hear your story Jane. I am so pleased we have this site, to communicate with others having similar problems. keep enjoying your family and life, its not so bad when we see others who have health issues worse than ours, and yes I intend tp travel as well. we have a caravan and want to feel the freedom of stopping and starting , coming & going as we please. Keep happy, dont think about things just do it, our illness is always with us, so we should enjoy every moment. best wishes to you Jane.

sedavisoes

05-15-2009, 03:00 AM

Sorry you have IC but glad you found us. I have been pleasantly surprised with how easy my traveling has been. I've been in remisssion for a few years and am trying to get in as much traveling as possible while I'm feeling good. We love to cruise and will soon be on our thrid of this year. This seems to be best way for me to travel with IC.

Zygala87

05-15-2009, 11:48 PM

Barb 1 you have the most positive outlook on life. After reading what you have said I decided to get off my butt and get out there and try to help others that don't have the essentials one needs for a comfortable life. To update my last blog. Our Granddaughter found a wonderful job and started working the week she graduated which was Mothers Day. I hesitate to mention this as I can not imagine what you are going through losing your Grandson. I am so deeply sorry I'm at a lost for words. Thank you for your uplifting post. You are a very special person. Hugs to all my 60's friends. Ziggy

jane2

05-16-2009, 04:14 AM

Barb, I want to give you hugs, and love for I know that losing a grandson has got to be one of the hardest things to go through. I have lost so many people in my life starting at the age of 9 1/2 when I lost both my parents...too long of story to tell, ended up in an abusive foster home. I just kept telling myself I could make it 6 years, till I graduated. I been the hospice & legal guardian for friends that have died as well as my dear mother in law. Each time there was a deep depression and mourning period. Guess eventually we decide to live again. Besides to is too depressing to be depressed. Eventually instead of crying when I saw something that reminded me of a loved one, it turned to a kiss instead, now when I see something that reminds me of a loved one, it brings me joyfully memories.

I guess in some ways I feel that about IC. I was completely overwhelmed when I learned about my conditon. Still waiting for that long promised relief, hate doing the instil with DMSO. I know that Elmiron is supposed to help, and again I have that waiting period. I hear some many that have remission and I hope for that. So I mourned about my new life with IC. I know it is a crazy anology. I am a fighter, once I get over the immediate response of " this is happening to me". I have a friend probably much like you who gives all she can through Birthright an organzation she stared. She has MD is wheel chair bound but can do more things with her mind and heart than anyone I know. Made me feel like a "wuss" when I realized how lucky I was.

Sorry for the ramble...I have IC, but I do have a life to live..thanks for everyone one this thread as well as this site which has given me so much information.

blessings to all
jane2

Goldfinch

05-16-2009, 08:11 AM

Hi Jane, just want to say welcome to the ICN from another 61 yr old. My IC came on suddenly about a year and half ago. Until then I really didn't have any bladder issues or history of UTIs. So it goes.

Be patient with Elmiron; sadly not everyone is helped by it, and it can take months to start working if indeed it does help. But I'm having good luck with it after 5 months. I've been almost asymptomatic for the past three months and don't have any serious side effects at this point. And I am starting to experiment with a broader range of foods--in small amounts--not to tempt fate. I can sit through a two-hour movie now! And I can take hike without feeling like my bladder is being bumped around inside me.

I too have spent my fair share of time mourning for the days with no health problems. My husband and I were pretty healthy until the last year or two when we've both had a variety of issues. We've both been to as many docs and appointments in the last 2 year as we have the rest of our entire lives put together. I just hope our docs remain healthy!

jane2

05-16-2009, 03:26 PM

I think I have found a home on this support forum. you have all made me feel at home, and given encouragement.

Funny, last year I was healing with a knee replacement as was thilled with my new abilities. Thinking this year would be so much better. No doctor appts except the regular wellness ones. Wrong. I've been going to doctors since febuary. Now that I know what is wrong is bit of a kindness. I'm a bit impatient to get moving again. I keep repeating "baby steps" for now. some days are good, maybe once in a while great, most days not so great, some down right horrible. The horrible ones seem to last a couple of days. We had baked ham and that sent me into a horrible flare. I think I was either icing or heating. Lost a couple of days that week. Doesn't make me want to try that food again.

I'm beginning to be a big label reader. My dh has been wonderful, he still eats chocolate and drinks coffee by the ton, but other wise eats what I fix. I don't think I've eaten as much cottage cheese in my whole life, and I don't care how expensive blueberries are. LOL I've been on the diet for only 3 weeks and I was told to not introduce anything new, until 2 months. so far food hasn't been to much of a problem. I'm a bit worried about the trip we have planned for my grandson graduation, and then we are picking up the two younger ones for a month. It is eating at their house I am worried about, once home I at least know what is in something, believe I will ask. thank goodness my daughter in law is wonderful and will be understanding. I' not looking forward to the traveling part either. But we have a camper van, with a toilet, that is a plus, it's the riding I'm worried about. any suggestions?

Thanks for all the hope, and stories that I hear, I really need to hear how you are doing because it helps me a great deal.

blessings to all,
jane2

Zygala87

05-16-2009, 11:55 PM

Hi Jane 2. I often must travel to Boston from Maine. A four hour trip and few places off the pike to rest. I learned to take a pain pill just before I leave. (My Husband drives of course) so when I arrive I am not in great pain from sitting in the car. When we think about it, everything below the waist and above the waist are pushing on the bladder not to mention the seat belt. I'm not a constant pain pill taker. My Doctor who knows us well and wants us both to enjoy life as much as possible said "go, take a pain pill and enjoy all you can" Pain is like a snow ball rolling down hill. It just gets worse and worse and every muscle tightens up making it all much more uncomfortable. I would never drive while on a pain pill. Well this works for me. Maybe you could ask your Doctor for advice. What works for one person does not work for all. Go, live and have a great time. Hugs & Blessings, Ziggy

nottoc4

05-17-2009, 10:28 AM

I always wear loose fitting capris or lightweight sweat pants when we are traveling.There is nothing worse than a jeans seam crawling up "you know where." We take frequent rest stops,stretch and potty if needed.

Agape

05-17-2009, 10:34 AM

I always have a pillow in the car for my back, because that is where most of my pain was during my worse flare. I, too, save my Ultram pain pills for special occassions like trips etc. Don't drive if they affect you in a bad way. I have driven while taking one, but only short distances. I say do whatever it takes to be able to enjoy yourself and still be a part of living as you want to.:woohoo:

jane2

05-17-2009, 10:34 AM

I will see the doc tomorrow for 3 dmso, and will ask him @ pain meds. I used to love jeans and shorts, but the seams in them kill me. I'm loving skirts, and wear biking shorts when walking or biking at least they don't have that center seam. I thought I might even wear a sundress while traveling. Can always change if neccessary for camping purposes. don't want anything showing. LOL I will ask hubby if we can have some short breaks so I can walk around. You all have been very helpful. Thanks so very much.

Blessings,
jane2

Agape

05-17-2009, 11:06 AM

Jane2, according to my IC doctor, you are very fortunate that you can bike without having pain and discomfort. I know I went biking last summer for the first time in a long time. When I mentioned this at my dr. visit last summer, they were amazed that I rode a bike without pain. Good for you!

jane2

05-17-2009, 11:52 AM

I haven't rode my outdoor bike since my dx. I have two incumbents bikes, one outdoor and the other indoor. I usually ride my indoor almost naked. MY gyn said to just put some vasaline on libia and ride. LOL. Now I sit on a ice pack while riding. (just call me ice queen)Yes I do have tennis shoes on and usually a sports bar. That picture alone should make all of you laugh, especially with a almost 62 year old body. ( I'm laughing) :smile tee
I asked the URO doc about biking because that was what was what my knee surgeon said was best for my new knee. Uro doc said I had strong pelvic floor muscles so he said go ahead. I also read somewhere on this site the recumbent seat was the best. The Uro did say he had plenty of male IC bikers. So I know it's not great. Outdoors really beat up my bladder with all the bumps, the indoor doesn't have that. I do miss riding with my hubby. But I'm learning with IC you change things up a bit.

The ice helps calm the bladder and I don't ride more that 30 miles a week. That is about 3 days of 10 miles. I try and walk twice a week. sometimes don't make that. I do Pilates, but the ab work seems to increase some of my IC pain. Asked the Uro about that & he said he had no idea why that would bother me. I ordered the Pilates tape from the store here, anyone tried that.?

Agape

05-17-2009, 12:32 PM

Two things I wanted to comment on in your post. First, I'm so glad you have strong pelvic floor muscles. I don't and have had surgery three times for prolapse! Oh my. That is really how I found out I had IC. Second, I see you are from Texas. I lived in Texas for many years and loved it. One of my best friends is still in Texas (San Marcos). I am a Southerner too, from Georgia.
You must stay really fit with all that exercise. I wish I could be faithful with mine and lose some weight.

jane2

05-17-2009, 02:50 PM

Agape,
I love to exercise, used to body build, love biking but being in my 60's I am finding I can't do what I used to. I used to ride my bike at least 5 days a week. Then I found I had piriformis syndrome, it's a butt muscle & mine flares up a lot, so now I bike and walk. I like Pilates but with fibro I seem to get just so far and no farther. I tell my family with fibro you have a energy basket and once it is empty, your through for the day.

Glad you didn't make fun of me for riding my bike while sitting on ice. Hope I gave you a laugh! Actually Georgia is my second favorite state. We spent 6 months there at Warm Springs giving tours of the Little White House.

I never really gave my pelvic floor muscles much thought. I'm sorry you have had so much trouble. I still do kegals and I think biking helps a bit in that area too. With that big seat on a recumbant, you don't have any rubbing. It is like sitting in a chair. Believe me I'm not skinny, I'm 5"6" weigh 151. Would like to lose 20 pounds, but when I lost 45 I had lots of saggy skin. So think I will keep what form I have.

You must be a loving person with a name like Apage. LOVE!

southern hugs,
jane2

yvonnef

05-17-2009, 07:54 PM

[]I
Hi Jane, yes I too have trouble with jeans and tight pants, its very frustrating, when I travel I always wear skirts or track pants and sit on a pillow. I do line dancing, the uniform is jeans with blouses tucked in and belts. Its so difficult to look good when we are doing a demonstration, everyone with their tight jeans and me with baggy ones, a size too big, the backside could fit 2 of me in them. I get comments, "your jeans are too big" . I feel frumpy. Oh well at least I can line dance and I do enjoy it. Sad, you have the same problem, but at least i`m not alone. Bless you all. xx

jane2

05-18-2009, 03:57 PM

I was really dreading my treatment today. But it went well, yes I burned & sat on a iced water bottle for the 20 minutes I had it in. but once I voided it was like I was good, no pro longed burning like before that lasted 2+ hours. MY husband did the last one and didn't want to do this one. Last time he pulled the cath out to fast. He said he would do the next one as he & I will be kind of sharing the duties for my last two while on the road to S. C. I talked to the nurse who then talked to the doctor before treatment. I told her that last time I hurt so badly I couldn't ask any quesions. They are faxing a script for urelle and then Weds they will bring from their main office 2 months supply of freebies for me. So I will have enough to carry me on the trip. Also got a lite pain killer Ultram of which I am able to take without getting constipated. All in all I was pleased. I had to chair a meeting tonight and everyone probably thought I smelled like garlic, but the meeting went well.

I'm glad today is over.

Thank God for ice and heat.

Blessings to all,
jane2

Gloria J

05-18-2009, 04:56 PM

I am 64 and was diagnosed with IC 10 years ago although I had it for sometime before being diagnosed. I have Hunner's Ulcers also and PFD. Frequency is one of my main problems and urethral burning. I take 2.5 mg of valium night and morning for the pelvic floor, sometimes half that midday if I am having a bad day. I have DMSO at 25% once a month to 6 weeks. I use a Vagifem pessary twice a week for my low estroegen levels and this has helped me. I also take fish oil and a proboitic each day. I follow the:kiss: IC diet religiously.
I walk for 30 minutes most days, do yoga three times per week and do stretching exercises from the book "Heal pelvic Pain" most days. I try to live as normal a life as possible.
This site has been a God send for me and although I don't post very often I check the site most days.
Thanks everyone
Gloria xx