NEW please HELP I am so worried

[smsaz620]

Hi-

I was diagnosed in November AFTER going to Mayo hospital witht hem saying I had endometriosis, doing surgery, taking 8 biopsies, my appendix and cutting several nerves. Of course I came up negative for endo, and have still been dealing with the horrific pain.
I dont understand IC yet, I know I tested positive for it, at my pelvic pain dr. I was referred to. They did the bladder potassium installation test.
I started on Elmiron, have been on it since, immediately went cold turkey on
the food diet list and have been very diligent with it.
I have a wonderful husband that makes all IC approved meals.
Went to the referred female physical therapist, $100 a visit two times per week, she did pelvic floor work and such, I ended up in the hospital since she did skin rolling that hurt so bad I had to crawl to the bathroom and I could not stand up right.
The ER doctor treated me like crap and said I was constipated, and rolled his eyes when I mentioned IC. I was so humilated and so upset, about this treatment.
I have been going every week for 8 weeks to get a bladder catheter cocktail put in,,,,does anyone else do this?

Now I am having surgery in 4 days, which I dont entirely understand what surgery I am having. My job is freaking out about me missing time, and the pain never goes away.
I have no pain management meds and dont sleep at night, I am worried my marriage will implode.

I appreciate anyone that reads this, I want to know I AM NOT alone and others have been told time and time again it is something other than IC, and has had surgeries without help.
I am afraid this IC surgery is going to be all for nothing too.

Please help I need it!
Shannon

[bamagirl]

I know what you are going through. The only thing I haven't tried is pelvic floor therapy. The reason I haven't is because a doctor tried this on me one time and I thought I might go crazy from the pain. I am so sorry you feel so bad right now. I have constant pain from my IC too. I have had IC for 19 years now. I do have some good days where the pain is very minimal. I just happen to have a severe case but that will let you know that it can be helped since I have had it for so long and have dealt with it. In my opinion you need a pain management specialist. I have tried differnet cocktails with some relief but I am going to try a new one that was mentioned in the ''IC'' update magazine. They can actually put elmiron in the bladder which I haven't tried yet. I had to deal with some doctors who were not understanding or sympathetic but there are some good ones out there too. You might want to find out from someone on this board that lives close to you, who they use.

I suggest you definitely find out what surgery you doctor is going to do before you have it done. You may want a second opinion. Just be careful because this is YOUR bladder.

As for husbands. I have been married for 19 years which is the length I have had this disease and I am still married to the same man so that should tell you something. I think that since you have a husband willing to work with your food diet to make sure you eat right, he will probably be am understanding husband through it all. I would suggest that he go with you on a doctor visit so that he will get a good understanding for what ''IC'' is and how it affects you. You may also want to talk with a sex therapist. I have done this also and they can be very helpful. If you have pain during intercourse (sorry if this is too personal, just trying to help) you may want to try vaginal valuim. Your doctor can write the prescription but it has to be done by a compound pharmacy. .....something like that.
Warm baths help me when I am in a flare as well as a heating pad.


If you have any questions please let me know. You can email me at jimmynkristi@bellsouth.net or kristi.dickens@yahoo.com. I will be praying for you to feel better.

Hugs coming your way,
Kristi-----from Alabama

[jaisa]

Hi -so sorry you're going through this but in my experience the first few months during and after diagnosis are the worst. You seem to really be taking the bull by the horns so be proud of yourself.
The Elmiron can take a few months to kick in so hang in there. I've been doing PT and it seems to have contributed to a huge flare the advice I've received is to continue with it but pull back. You need to take baby steps with the PT which may involve a good discussion w/ your PT.
The best advice I have heard about flares is that they tend to peak and become more manageable. I find I tend to panic that the pain is going to become unbearable and that makes me tense up more. I have been prescribed Lorazepam to help break the cycle.
Also the ER doc is obviously a jerk but be careful not to let yourself get constipated it can contribute big time to feelings of pressure , pelvic and back pain. I have to use a stool softner daily ( too much sharing??).
I definitely agree with keeping your husband educated and communicate about how this is affecting your relationship. I know how scared and angry I was that my husband would leave b/c sex was the last thing on my mind when I was having trouble doing basic stuff but discussing this has helped and again things can and do improve.Plus it's amazing how little credit we give these poor guys.
I'll keep you in mythoughts--J P.S find out what this surgery is for before you go for it!

[Cortana-mana]

This is so hard, I know. I was luckier than most and didn't have any surgeries done or very many bad doctors. Both the ICN and the ICA can help you find IC specialists on their websites. It took me a while to use those resources, but when I did I was so happy. The clinic I got sent to (I'm near Cinci Ohio) has multiple IC specialists who work together to help me (physical therapist, uro, and gyno).

I am proud of how hard you are working at this. It took me months to get over the denial. Keep it up and you will get better! The post above is right. Right before and right after diagnosis is the hardest.

My marriage has lasted two years so far. I was sick but not diagnosed when we were engaged and diagnosed after we came back from the honeymoon. He was perfect even before we knew how sick I really was, even though we NEVER had sex. The sex is still rare for us (because of Pelvic Floor Dys) but it is getting better. He would be by my side even if there was no sex. Again a post before said it best - we don't give our boys enough credit. Their hearts are so huge and giving and accepting. Work on staying intimate emotionally and you will be fine.

We all need friends that know about this disease. Check on the website to see if there are support groups near you. Your doc might know about them too. But these forums are amazing and will hellp you so much. I have found so many answers and so much love here.

[leelee88]

Shannon, Hello and :welcome:

If it was me I would be calling my Dr and finding out JUST what surgery they were going to be doing on me!! This is YOUR body and you have to take control.. I know Drs are great and all but you have to know what they are planning on doing and research this..

[smsaz620]

Shawn and I had 10 years together before we took the plunge into marriage.
We have been married for 3 so a total of 13 years solid!
We have grown up together, I like to say since I am 32 and he is 35 we have been through so much together and I am so blessed to have him.
A unique relationship since we have never been apart since our first date.
I know, that is so 1920's of us--minus the no marriage for a decade!
He cooks every night a special IC dinner and even makes my IC lunch.
Since many have posted to me regarding sex, I am not sure on the forum guideline on this, but I am open about it, since when I can have it we almost celebrate!
I hope that statement did not make anyone uncomfortable, I am new here so still learning the ropes!
This site is a huge blessing and I am so glad I found it.
Thank you to all of you that work so hard on this site and all the information.
I am in tears looking through this site and am so happy I know I keep repeating myself, but thank you thank you thank you!

[smsaz620]

Thank you for your reply!
Not too much information for me! I was actually going to look for a portion of this forum perhaps dedicated to intimate items, so I can understand if my situation/discomfort is common :angel:





Hi -so sorry you're going through this but in my experience the first few months during and after diagnosis are the worst. You seem to really be taking the bull by the horns so be proud of yourself.
The Elmiron can take a few months to kick in so hang in there. I've been doing PT and it seems to have contributed to a huge flare the advice I've received is to continue with it but pull back. You need to take baby steps with the PT which may involve a good discussion w/ your PT.
The best advice I have heard about flares is that they tend to peak and become more manageable. I find I tend to panic that the pain is going to become unbearable and that makes me tense up more. I have been prescribed Lorazepam to help break the cycle.
Also the ER doc is obviously a jerk but be careful not to let yourself get constipated it can contribute big time to feelings of pressure , pelvic and back pain. I have to use a stool softner daily ( too much sharing??).
I definitely agree with keeping your husband educated and communicate about how this is affecting your relationship. I know how scared and angry I was that my husband would leave b/c sex was the last thing on my mind when I was having trouble doing basic stuff but discussing this has helped and again things can and do improve.Plus it's amazing how little credit we give these poor guys.
I'll keep you in mythoughts--J P.S find out what this surgery is for before you go for it!

[leelee88]

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Romance and Sex When A Partner Has Interstitial Cystitis