Is this as good as it gets?

[meResque]

I'm doing much better than I was at diagnosis. My main symptom then was horrible pain in my butt, mostly around my rectum and tailbone. Physical therapy and Elavil took care of a lot of that pain. On good days I would say 90%, on bad days, maybe 70%. My IC symptoms I can handle. If I eat the right foods, and take my antihistamine twice daily, I generally do not flare.

My question is... with PFD... is 70-90% improvement all I should be expecting? Does the pain ever go away entirely? Is that what I should be aiming for? My doctor has never really covered this with me. If this is as good as it gets, fine... I can totally deal with this level of pain for the rest of my life. But if there is hope for more improvement, I'd like to know. Maybe I should go back to PT, or take a higher dosage of Elavil or something. I was briefly pregnant this winter, and had to stop taking Elavil... so I know the massive pain is still there, waiting. Within 4 weeks of my last dose, it was all back. So I know it's being held at bay with meds.

So... do I take what I can get, or should I be aiming higher? Thanks.

[ICNDonna]

That's a tough question. I feel good most of the time, but I am always aware of my bladder and always urinate more frequently than other people --- but I live a normal, active life. Some ICers experience total remission.


Donna

[123456]

I've been going to PT for over a year now. The first few months were 2 times a week. Then, I started feeling better and we went to 1 time a week. Then about a year in, I felt so much better (at like 90%), I started going bi-weekly. My PT says she has some IC/Pelvic patients doing so well that they only have to come in occassionally for "tune ups". So I believe the answer to your question is yes, over time, things can get pretty much normal. I think you'll always have to be careful though.

[meResque]

Thank you so much, 123456... that's exactly what I needed to hear. I only did PT once every two weeks for about 5 months. I think I had accepted that this was as good as I would ever feel... and since it is SO much better than how I used to feel, I thought it was enough. I also reached the point where I was no longer seeing my doctors once a week sobbing in pain, so I think they also assumed I was good to go. I need to speak up, I think, and try for more.

Donna, thanks! I'm really lucky in the IC department... if I stick to safe foods for me, and take my hydroxyzine twice a day, I actually DO forget about my bladder for long periods of time, and usually only pee between 5-7 times a day! It's my darn pelvis aching that wears on me.

[endogirl2]

I'm doing much better than I was at diagnosis. My main symptom then was horrible pain in my butt, mostly around my rectum and tailbone. Physical therapy and Elavil took care of a lot of that pain. On good days I would say 90%, on bad days.

Hi!

I'm curious on the horrible butt pain. Can you give more detail? I do not have IC or any IC symptoms. I do have endometriosis and have rectal type discomfort ( sometimes feel like I have a rock in my butt ). I did some pelvic physical therapy for awhile as well but my pelvic floor was good overall. It was tightening up more during my periods and that would also trigger a feeling like my butt was going to fall out from under me. I have read about levator ani syndrome and other stuff but I don't think any of those seem to fit for me.

Thanks!

[meResque]

Endogirl,

The beginnings of all of this for me were in July of last year. I had a pap smear that set everything off, followed by a colposcopy that made things SO MUCH WORSE. I was also put on birth control at a very high dose because I wanted to tweak my period for my honeymoon. Three pills three times a day for the first three days... so 9 pills in 3 days. I started getting joint pain, and discontinued after the first week. I wouldn't get another period for 3 months.

Before my symptoms, I lead a completely normal life. Let me think back for you... it started with a weird pain that felt like it was coming from between my vagina and rectum. Kind of a mild burning, that would come and go. I remember it being there one day, and not the next, and some days it would come in waves. It was more bothersome than anything, but created a lot of anxiety for me. When I was asked to tell my doctor where it was coming from, the best I could say is that it felt like it was inside me, more in my butt than vagina. It got worse very quickly. From mid July's mild pain, it progressed to pain so bad I could barely get out of bed in September. I was in and out of three doctor's offices once a week at LEAST. No one knew what was going on. The only position that brought me any relief was squatting in the shower.

Ultimately, I was found to have a cyst on each ovary, and was put on the pill again- at a normal dose. The cysts went away, and I was still in pain. I had a laparoscopy in October, and the doctor found small amounts of endomitriosis that he cauterized. He said it was very minimal, and as I had never had pain before, it was not the endo causing my issues. I was then given the Potassium Sensitivity Test, and the rest of history.

Like you, none of my issues were bladder related! My doctor said that he was 100% certain I didn't have IC before the PST, and only administered it as a shot in the dark. Definite positive result, however. I still don't have bladder pain as a day-to-day issue, although I have IC. My pain "in the middle of me between my butt and vagina" is now a much lower scale pain in my lower back, hips, and butt... but only when I've been sitting too long. It rarely hurts now where it used to. I did PT, as I said above, and take Elavil for the pain. I'm going to my doctor today to ask what I can try besides Elavil for the pain. Elavil has caused me to gain about 40 pounds, and hasn't totally erradicated my pain, which I'm now shooting for!

Sorry to write a novel. Let me know if you need me to elaborate on anything. I'm sorry your search for answers is ongoing.

[endogirl2]

Wow, thanks for the great detail! Endo can work in strange ways. My endo is about the size of a gumball located between the vagina/rectum so it's always hard to know if it's endo or something else. I just went back on the BCP after TTC for 1.5 years. It was too much for me and the periods were causing alot of urinary issues ( had to push really hard to pee ). Last month was too much for me so I've been back on the pill for 4 weeks now. I have to say, any peeing issues have gone away and I feel really good overall - sometimes it's more prevalent than others. I also think the pill is making me constipated so it could be something as simple as that. Still looking for answers....best of luck - let us know what happened at your apt today!

[KaraLynne]

I've been doing my physical therapy exercises and dilations for 14 months now. I saw some major improvement a couple months in and then felt sort of stagnant. But, really things have just been gradually improving--at a slow rate, but still measurable improvement. At this point, I feel about 90% on most days--whereas about 4 months ago, I was probably at 60-70%. The way I look at it is that it probably took a long time to develop my problem and it will take a long time to get out.

Right now my re-alignment exercises have been really helpful at preventing pain. And...because I'm generally pain-free, I can fee pretty quickly when a certain sitting or standing position is causing me to get into pain and I know I need to switch. That's pretty huge to know that!

I still spend about a 1/2 hour every day doing stretches or exercises of some sort. But, I'm able to live a pretty normal life and that's great.

My PT said she doesn't see people that often after they get better, so she assumes things are going well for them. But, she did tell me that I would probably have to keep up the exercises in some form for the rest of my life--and that if I wanted to cut back to, say, exercising twice a week instead of every day, I needed to cut back gradually and not all at once, so as to not undo all my hard work.

I'm not sure if that's too discouraging or anything. The plus side, for me, is that I'm still getting better and progressing. The negative side of that is that it takes awhile and means being patient and consistent in stretching. Still, it's been completely worth it for me!

[harleyk]

Levator ani injections

Have you tried these?
I have done PFD PT for 4 years with some relief.
After the death of my mother last December, I was ready to take the deep end.
I found a wonderful doctor that gives these injections at Magee Women's Hospital in Pittsburgh.
The brief pain is worth the 7 to 8 weeks of normal life that I receive.




Marcia

[meResque]

Thanks all! To update: I just completed another round of physical therapy- it turns out one of my hips was severely rotated, causing all of the back, hip, and leg pain. Now that it's back where it should be, I'm feeling at about 99%! To top it off, I've been in remission for a couple of months, so I feel on top of the world!