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View Full Version : IC AND Endo--


keriwallace
11-18-2007, 04:11 PM
Hello, My name is Keri and I have been just diagnosed with IC about 2 weeks ago. My Story started 1 1/2 years ago- when I first noticed pain.

In May 2006, I came down with a terrible UTI. My doctor denyed me of my pain for weeks saying it was a mild infection that would cure itself over time. I was finally sent to the ER with tremendous pain in my back to later find out, my UTI had spread to both my kidneys. I was given 3 shots of anitbiotics and had to take a pill 3 times a day for 8 days.
The following months after that, I stopped having periods but continued to have horrible pain during the times I was due for my period. I was very concerned and was seen by the doctor once. After much testing, pregnancy was ruled out. (I was on the patch birth control, and so I was put on a lower dose birth control in hopes my periods would return). My pain got worse and still no periods. Not only did I have abdominal pain, I had pain with every activity that I did. Jumping hurt, running hurt, going to the restroom hurt and of course sexual intercourse hurt. In that time, I was seen by a total of 11 doctors that ranged from GYN, gastro docs, and even caner docs. I had numerous biopses done of my uterus (they found it to be swollen) but all came out negative.
In December 06, I had a laporoscopy preformed but the doctor said he found scar tissue, perhaps from an infection I never knew about. So he "cleaned it up" and told me that I should be pain free and resume my periods by the following month.
Again, the following months passed and I still didnt have periods AND the pain was worse!! I began a search on specialty doctors who could get to the bottom of this. I found a Doctor in Mesa, who is my saving Grace, that insisted in seeing me right away. Within a week of seeing me, he wanted to perform another laporoscopy so that he could see if there was anything going on inside.
Much to his surprise, He explained that He found Endometriosis in such a state that its the worst hes ever seen. He found my left falopian tube was completly closed and my right tube was "in the stages of closing" and the scar tissue that was caused by Endometriosis, not an infection, had in fact spread to my bowls, bladder, liver and kidneys, which explained the severe pain and absence of periods.
When I was well enough and had healed from the surgery, He suggested I be put on the Lupron Depot shot in hopes to slow down the scar tissue formation and to hopefully save my other tube from closing. I am now in my last month of treatments, and what a rollar coaster that has been!
Now, I still had terrible pain even though I was on Lupron. It was intill 2 weeks ago, that my doctor suggested to me that maybe the Luron just wasnt working. But once I explained in detail how my pain symptoms felt, He immediatly set me up with a PST (potassium sensitivity test) to test for IC. The following week I had my PST preformed and was told the terrible news that I was diagnosed with IC as well. So, just as a got my endometriosis under control, I am now trying to figure out how to tame my IC! My insurance is having trouble keeping up with all this so at this time, I am unable to start Elmiron right now but I have found Prelief to be such a miracle. Now remember, I have had pain every day since May of 06, and within minutes of taking my first Prelief pill, the pain has gone. And now a week later of taking prelief- I am still pain free and am able to do all the activities that I've missed so much like hiking without having to take a break! Prelief in AMAZING!!
So Im just curious--Is there anyone else, which I know there is, But I would love to talk to someone who has been diagnosed with both Endometriosis AND IC-- But I hope that I too can help people with their questions and I hope to be able to give some great and helpful advice back. Good luck IC population-and remember- dont let your happenings destroy your happiness! We can overcome this so dont let this overcome you!:hi:

GriffsMommy
11-18-2007, 04:39 PM
:welcome: to the IC network! A lot of us here have both endo and IC, including myself. My dr said they are referred to as the evil twins due to the fact that they often occur together and their symptoms can be very similar. My new dr just suggested that I try the Lupron to get my endo under control and then in turn hopefully that will calm down my bladder. In my case my endo was actually discovered when a mass was found in my bladder that turned out to be endo. I'm so glad the prelief is working so well for you.

Dora
11-18-2007, 05:07 PM
Welcome! I have Endo as well! :welcome:

leelee88
11-18-2007, 05:47 PM
Hello and:welcome:

I am another one that suffers from IC and Endo...

keriwallace
11-18-2007, 06:00 PM
Thank you all for pointing out you have endo as well...now my question--how do you cope? I mean, i have my good days and bad days...Good days when i want to go out hiking, shopping and just live life!! then within an instant-it seems like reality hits and pain as well...then i remember about all the medical bills i have pileing up, and with the reacurring pain, im unable to be social in the world and end up "couch bound"--how do you cope? also--i use to be a full time nurse at a rehab facility but was unable to stand and work for so long-now ive resorted to home health nursing, which ables me to sit if i need to..but now ive had to cut down my pay rate...what im trying to get at is --is there away to get disability or something in that nature to help with the costs of not working as much? HELP--this is just all so much to take in!!:help:

Berkshire Road
11-18-2007, 07:53 PM
Sure, most states have short term disability for all wage earners, but you have to be not working at all. Social Security Disability Insurance is available to people with disabling IC. You can be making up to $900 per month and still apply for SSDI. You might want to look on the Social Security forum further down this page -- go through back threads and you'll find tons of information. Also, www.ssa.gov is the Social Security Administration's website, and it's surprisingly well organized and informative. You can find out pretty much right there whether you have a chance of qualifying, and what your benefits would be.

I don't have endo but I am still struggling with IC pain. I wish prelief did for me what it does for you! For me it just helps keep my bladder from reacting badly to foods and drinks. That's wonderful that you've found such a simple method of coping!

GriffsMommy
11-20-2007, 02:00 AM
I will say that coping with IC and endo is hard. I have the same problem you have, I also have PFD which makes my pelvic muscle so week sometimes standing for more than 10 minutes really makes my upper thighs, hips, pelvis and lower back just kill me! My dr gave me vicoden and w/o that I wouldn't be able to work and take care of my 3 year old that's for sure. I don't know much about disability so I can't be of much help there but I hope you start to feel better soon. :grouphug:

keriwallace
11-20-2007, 06:55 AM
How do you get tested for PFD? i know what it is, but how do they tell if you have that or not? Ive been on lupron for almost 6 months now for my endo-i have one more shot left! WHOO!! :woohoo:(i cant wait becuase ill be able to have normal hormones again and lose the wieght that i gained while on lupron) anyways, so i still had pain-down there- the whole time ive been on lupron so we all thought the medicine was not working...now that we've realized that IC has ALSO caused pain down there, we've realized now that the medicine may in fact be working (cross my fingers) and can now focuse on controlling the IC--The docotor wants me to figure out how to "tell the differance" between the pain-ya know-between uterus pain or bladder pain!! but how the heck can you tell!? there so close!! BUT i can definatly tell WHEN i start having pain--based on food...i can actaully control it by diet..NO CAFFINE OR ALCOHOL--i ve knicked those out of my life and its been over a week now with no pain at all!! plus of course, taking prelief in the morning helps to to dilute your urine from the night-I think im getting this whole thing mastered finally!! :smile tee

GriffsMommy
11-20-2007, 07:40 AM
PFD is just diagnoised by doing a pelvic exam by usually a gyn or sometimes a uro who knows what to look for with PFD. I am seeing a gyn who is a pelvic pain specialist and he did the exam he said my pelvic muscles were really really tight. He had me start physical therapy for it, I actually have my second appointment tonight after work.

keriwallace
11-20-2007, 09:04 AM
Well i hope that apt goes well...now do you take medication for that? or just do the therapy? from what i've heard from other subscribers on here..its pretty painful! I have only been diagnosed for IC 2 weeks or so..and havent heard from my doctor since! i go in on the 29 for my last lupron shot and im hoping ill get a chance to talk to my doctor about "whats next"--my insurance co is having a hard time covering My Elmiron for me--so thats been put on hold..i had a perscription last week for it, but when i went to the pharmacy- i found that my insurance co had only covered $47 dollars of it!! TOTAL!! so imagine what that pretty bill came out to! it was like my whole paycheck!:cussing: so i said no to it and called my insurance co--and that was a week ago when i last heard from them too! so right now--i guess im just "on hold" haha!! not that the thanksgiving holiday will bring any releif, just means that i will have to wait even a few more extra days before im able to tlak to anyone cuase places like that seem to close for the holiday. today has been a painful day for me despite what im eating--this is my first "pain day" for over a week--so i had a nice vaction from it-but i see its back!! im having lots of spasms-not so much constant pain--so i can deal with it! let me know how your apt goes! whats he seeig you for? just a check up? good luck Griff!:flower:

mbhbarb
11-20-2007, 05:15 PM
Welcome!

I also have endo and IC and I often cannot tell what is hurting me. I know when my bladder hurts inside, but when I get a certain kind of pelvic pain I don't know what hurts; it feels like my bladder and my bowels (and my uterus when I had one). I think it could be caused by the endometriosis and adhesions.

I am curious about Lupron. Is that a drug that induces menopause?

It sounds as if you have finally found a responsive doctor who is working with you to find a solution. That's great about the Prelief. It's helped me a lot with reflux, too.

barb

keriwallace
11-20-2007, 05:52 PM
Yeah, i can tell if its sharp pain in my bladder and thumping pain in my uterus...but sometimes its BOTH!!! anways, about LUPRON-- i was very scared to start it cuase i heard horror stories about it..""Menopause? im only 21~!!"" ANYWHO--Its a shot that you get in your butt cheek...eaither 2 shots in a 6 month period or 6 in a 6 month period...i chose to get 6 shots in 6 months since i had to go to the doctor every couple weeks anyways to check on my endo (its very advanced..its on everything on me inside and i have one falopian tube left) anways, it doesnt induse menopause in a way...it "medicaly" and temporary puts you in menopause for the 6 or 7 months of the treatments. Soon after your Lupron injections are finished, you will come out of the 'menopause' and gain all those hormones back..The reason Lupron works is because our endo gets worse every month that we ovulate and have a period right? well, lupron puts you in menopause so that you DONT ovulate and have periods-hence-slowing down the adhesion growth! AND ITS REALLY NOT THAT BAD!!! i heard many people say that it was terrible for them, that they went crazy on it..yadda yadda..well...im only 21 years old and already have raging crazy hormones...so i said..what the heck..ill try it!! for the first month or so..i experienced hott flashes that lasted a few minutes..but would go away when i just sat and took a deep breath and relaxed....the hormones? well...mabye i cried a little more then usual or "snaped" at times...but i was able to handle it..and according to my family and friends-i wasnt that bad!! THE ONE PIRK about lupron--the pain got worse before it got better...the first 2 months..the pain was worse then what it was when i started the shot...thats because they double the hormones (estrogen) in you--which somehow makes the pain unbarable at times...But, warm baths, heating pads...and pain killers work!! haha! but i gott through it, worked full time while on it..and i am sooooo glad i did it!! my last shot is on the 29 and im really glad that i did it!! :)let me know if you have anymore questions!! have a great night! Heres a sight about LUPRON that gave me tons of info and helped me decide if it was right for me--http://www.lupron.com/

mbhbarb
11-20-2007, 06:05 PM
Keri,

Thanks for the information and the website. I hope that works for you. Take care.

barb