IC after abdominal surgery, worse with any muscle activity?

[Josh85]

Hi everyone,

Sorry i have to meet you all under these circumstances, but it's nice to know there are other people going through the same thing as you. I thought I'd share my story in hopes that someone might have had an experience that was similar in some way, or just might have some thoughts on it.

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I am a twenty-five year old male who has always been healthy and active, with no allergies or other chronic conditions that I'm aware of. I've consumed my share of alcohol, but have always eaten well and rarely ever drank coffee or soda.

Long story short(er) - I had surgery for a sports hernia last summer - which is similar to a hernia surgery except there's a "stabilization of the conjoined tendon" done where it connects to the pubic symphysis - to try to fix some unresolved right-lower-quadrant pelvic pain that felt like a mildly pulled groin most of the time but flared up so bad several times after activity that I couldn't even move for several hours.

Now, I'm convinced that there WAS some muscle injury in there, but I remember remarking a couple weeks before the surgery of a "full bladder type feeling". I'm sure where this part fits in, because the muscle pain I'd experienced for the previous few months was different, albeit in the same general area of my body.

But anyway, in the few days after the surgery I had a terrible case of constipation, bad enough I could barely sleep for several night and honestly thought something terrible was going to happen as a result. I only mention this because it seems IC has started for some after trauma to the tailbone/sacrum area, and I think it's possible something like that happened. The day after the constipation cleared (and the painkillers wore off), the IC pain started. I had had some flow/starting-stopping issues since the surgery, but had been told to expect that.

Skipping past all the misdiagnoses and treatments for prostatitis/neuralgia/etc, I had urodynamics and then cysto/distention last week that confirmed I had IC. Elavil, Lyrica, and months of pelvic floor PT/internal massage didn't help me substantially, so I plan on going on the IC diet and trying a combo of Elmiron/Cystoprotek/Aloe Vera.

However, here's the kicker: my pain doesn't really seem "flare based", at least relative to what I eat or drink. It IS bladder pain and the nerves in my bladder are visibly inflamed, but my baseline pain level is almost entirely related to how much muscle activity I've had in the area recently. The two main categories of things that seem to aggravate my pain:

1. Singing, and to a lesser extent, laughing, talking quickly in a loud place, and even breathing in fully through my pelvis. I can't do any singing/vocal work at all now, or I'll gradually get sorer and sorer until I can't sleep and just have to go into hibernation for a couple weeks until it settles down.
2. Any athletic activity. Light weights, elliptical, swimming laps, abdominal strengthening, really even walking... I've tried everything, with the same gradual-worsening-to-a-breaking-point result as above.

Does this make sense to anybody, or has anyone had a similar experience? Any input, questions, comments or suggestions are welcome. Hope everyone is doing (relatively) well, and thanks so much for reading!

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Other thoughts:

*The hardest part for me is that, before this started, I was gearing up to give a singing/songwriting career a shot here in Nashville and doing vocal exercises 4-5 times per week, and worked out at the gym 4-6 times a week. Singing and being active were huge parts of my life and who I was, but now I can't do any of that without aggravating my symptoms and seemingly pushing back any healing. If I could just figure out a way to get back to these things without making the pain worse, I'd be happy.

*I kind of wonder if it IS related to my surgery somehow, and if there is some underlying neuromuscular issue that irritates the bladder excessively when I'm active and may prevent healing even if I'm on drugs that repair the lining of the bladder wall. But I don't really know enough to speculate more than that.

[sailawaygrl]

Have you had any physical therapy since your surgery? If not, I wonder if it wouldn't help you now. When dealing with IC, the therapist needs to understand how to treat an IC patient. Perhaps your previous one didn't. Just a theory. Since you do seem to have so many problems related to physical activity, I think PT would be worth another shot. Also, the diet is a good idea, anything to settle the spasming muscles will help. I have noticed that I have a lot of pulling pain inside these days if I try to do much of anything physical. I used to work out at the gym daily pre-IC. I can walk on the elliptical now without problems, that is an improvement for me.

Are you sure you gave yourself enough time to heal after your surgery? You can have pelvic floor dysfunction along with IC. Usually it starts after experiencing IC pain for a while. It has to do with the natural response of our body trying to protect itself by tensing muscles around an injured organ( our bladder) over time when the injury doesn't heal our muscles will get tight like a rubber band, and will shorten. That is where the pt would come in good for you. That is what I would think if it were me. Look on here at the Dr section and see if there is a PT in your area. If you don't find one on here, try IChelp.org, they have a place where you can request a list of Dr and Pts in your area, for my area it was much more extensive than the list on here.

I hope I was some help to you. I wish you the best. Don't give up on your dreams just yet, many people find what helps them and move on with life!

Keep us updated.
Sandra

[Josh85]

Hi, thanks for the reply! Yes, I've been doing PT with several therapists that are very well trained and specialize in pelvic floor issues for 4 months now, without much luck. I think it's hard for them to know what to try, because pretty much any exercise hurts rather than helps, even if it's gradual. Even having a normal-speed/volume conversation and breathing in fully aggravates it when it's bad. However, they've been treating me under the assumption of neuralgia rather than IC... I see one Thursday, so we'll see what she says about the new diagnosis.

I'm not sure what you mean by time to heal? I didn't attempt any working out or singing for months afterwards, if that's what you mean. The pelvic floor disfunction theory makes sense to me, but a recent biofeedback test suggested I wasn't storing excess tension in my pelvic floor and a recent urodyanmics test suggested my bladder pain/issues weren't associated with any muscle tension and spasming.

One last thought - the scar from my surgery is still pretty tough with scar tissue, despite me working on it. It's only about a half-inch from the bladder, so I wonder if it could be involved somehow (although the cysto did show visible inflammation in the bladder, so it's not just as simple as referred pain from a pinched nerve).

Thanks again for the input.

[Josh85]

Sandra, if you don't mind me asking... by the "pulling pain" with activity you refer to, do you mean that it makes your bladder pain worse, or does it feel more like a separate kind of muscle-type pain?

For me, it just makes the bladder pain worse.

[sailawaygrl]

Not sure how to describe the pulling pain, to me it feels as if it is pulling on both sides above my bladder. I honestly can' t imagine a pain when you talk or breath deeply, that has to terrible. I feel for you. When you mention the scar, perhaps adhesions could be causing some of the pain. You might want to explore that. The pain you feel, and always feel is completely in your bladder? When I said that about time to heal, I was referring to healing as in giving your imflamed bladder time to rest. I would think that following the IC diet should start helping you with the inflamation in your bladder. Have you had any bladder instills? Those help me because I use marcaine and it simply numbs the inside of my bladder.

I have not seen anyone else post about the type of pain you are having, directly caused from merely talking rapidly. Hopefully someone else will see this and post if they have had a similar experience. I wish you the best of luck. Keep searching, answers have to be out there somewhere.
Sandra

[Josh85]

Oh, gotcha. The pain is often - primarily, even - throughout the urethra rather than just the bladder (through the perineum and penis). No instills yet, but that sounds like something I should explore.

I'm hoping you're right that by watching my diet and giving my bladder a "band aid", it might just heal some with time. I am a little worried there is something else involved though, due to the uniqueness of some of my aggravating symptoms.

Anyway, thanks again!

[sailawaygrl]

Be sure to give the elmiron time to work, very little gets to our bladders when we ingest the capsules. That is why it is very important not to eat before or right after taking the pills. Some Dr's, mine included are now using them in instills. It can take weeks, months or even up to a year to notice strong improvement with elmiron. I think it took me a year to see dramatic results but looking back I was improving slowly during that time. I see so many people take them for a couple of months and declare they don't work. I woulndn't stop my elmiron now for anything, but I remember thinking it wasn't working for a very long time.

Your welcome, I hope I helped you. Check out the men's section on here, we have had quite a few men become members lately. They can possibly help you more.
Sandra

[Josh85]

Hrmmmmmmm, I tried going to a restorative yoga class yesterday and even those basic movements aggravated it enough I had trouble falling asleep last night.

I would almost think it was something other than IC, except the cysto/hydro did show moderate bladder inflammation and the urodynamics test didn't show PFD - only some dysfunction of the actual bladder (i.e. it spasmed a little and the flow was weaker than it should have been, given how hard it was squeezing).

Has no one else's pain been extremely sensitivity to movement/activity like this? I'm a little perplexed.

[ICNDonna]

When I was first diagnosed with IC (36 years ago!) it was following abdominal surgery. I had such severe abdominal pain that my doctor did an exploratory laparotomy --- and found that I also had severe adhesions from the first surgery. Has your doctor mentioned this as a possibility? I think they use laparoscopic surgery to clip adhesions these days --- back in the 70s, it meant a huge incision.

By the way, my adhesions did not return.

Donna

[Snowden1]

Donna,
Did your pain get better after you had the removal of the adhesions? I also had a hysterectomy followed by a pelvic infection that needed several rounds of antibiotics. I am wondering if a laporoscopy may help at all with this daily pain. I know my bladder is also an issue, because diet is critical for me. I am very food sensitive. I was told my a uro/gyn that if he did this surgery and removed adhesions they would just come back even worse and I may not even be able to walk. It is interesting that yours did not come back. Now I am rethinking this surgery. Although, the thought of more pain really scares me. But, if there is something else I should be looking at before trying a pain pump or other invasive things, I want to explore it.

[ICNDonna]

Before I got rid of my adhesions I couldn't even stand up straight. Yes, it definitely helped with my pain. I still had bladder pain, but that was nothing compared to the combination of having most of my abdominal organs stuck together with adhesions --- my surgeon described the adhesions as being like a spider web encompassing my entire abdomen.

Donna

[Snowden1]

This may be something I should persue next. Thank you very much for the information. There may be much more going on in there than just IC.

[Josh85]

When I was first diagnosed with IC (36 years ago!) it was following abdominal surgery. I had such severe abdominal pain that my doctor did an exploratory laparotomy --- and found that I also had severe adhesions from the first surgery. Has your doctor mentioned this as a possibility? I think they use laparoscopic surgery to clip adhesions these days --- back in the 70s, it meant a huge incision.

By the way, my adhesions did not return.

Donna

Hi Donna,

No... I've actually wondered about that and even asked the surgeon about the possibility, but this was his response: "An inguinal hernia repair -true or sports related - represents subcutaneous surgery, or 'under the skin'. No body cavity is entered. Scar tissue under the skin may be uncomfortable but would not impede the function of any urinary structure." He also said that he did not displace the bladder or anything during surgery, and that he was "nowhere near the bladder."

So as best I understand it, it seems adhesions can only form in areas where the surgery took place - particularly if any organs needed to be moved aside or "messed with" during the surgery, and it appears that was not the case with my bladder. Does that make sense to you, or do you think it still might be possible?

Thanks for the input.

[Snowden1]

I was talking with a lady today who now has a pain pump. She said that her doctor told her some people just had more of a tendency to develope scar tissue than others and hers was bad. She had very severe adhesions. They told her that they didn't want to try to remove them, because they thought they would just come back. She tried many things (she didn't have IC) even the interstim to try to help the pain (I thought they only did these for frequency). She said nothing touched her pain until she got the pump. I really worry about this procedure because of my past history with infection. Also, Jill has recently posted how the interestim is a concern for infection. Medtronics make both of these devices and I am not saying it is or isn't a good company, but I would think both the interstim and the pain pump would have the many of the same materials. Infection is a huge concern to me. This lady also said that her pain was constant. She never had a zero pain level. I do have zero pain once in awhile and my pain goes up and down throughout the day. I can be a 2 and then hour later be at a 10, so I don't know how they would regulate this with the pain pump trial. For this lady it was easier because they could gage the medication to her pain level.

Sorry to go on and on. I am sorry if I went around your question. I think you can have scar tissue somewhere that impacts other areas of your body. For example, I have "frozen shoulder" now and this originates at my shoulder, but I feel it in my neck, chest arm, shoulder and even in my fingertips. (Although, this is not from scar tissue).

[Josh85]

Interesting, here's how the IC wikipedia page describes pain pumps: "very small amounts of medication, like morphine sulfate, dilaudid, or baclophen are released into the cerebrospinal fluid via a catheter stemming from the small electrical pump, requiring only about 1/100 to 1/300 the amount of medication needed orally for the same therapeutic benefit, but with significantly fewer side effects."

Sounds kind of like something you'd do if you need to take a ton of medicine, but not necessarily something you'd do if your medicine wasn't working.

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Anyway, as far as scar tissue referring pain to other parts of the body - I do understand that friction on a nerve can refer pain to an area of the body further down the nerve pathway. However, thanks to the cysto/hydro, I know it's not just "referred pain" in my bladder - the bladder wall is visibly, tangibly inflamed.

So really, I'm trying to figure out if there's some way that nerves/musculature OUTSIDE of the bladder can be connected and/or contribute to visible inflammation and dysfunction inside the bladder, rather than simply referring pain through a nerve pathway. And if the answer is scar tissue adhesions, whether it is possible for adhesions to form to my bladder even though it was not displaced or very near the surgery site.