Severe, life-stopping pelvic pain since early fall. IC out of remission?

[playethic]

Hi.

It's been a long road, & all-consuming for the past four-months. I'll do a quick intro here first, and answer more of the intro-questions in later posts.

My name is Lisa.

4 symptoms:

Very severe pelvic pain
- Suprapubic (right at top of pelvic bone, deep in).
- Constant (reduced only by 24/7 narcotics/opiates).
- Feels like razor blades slicing through all the tissue in bladder, or electric sander with course sandpaper ripping apart flesh deep in pelvis, or blowtorch. Previously-inconceivable level of pain. Torturous.
- Completely disabling. Impossible to think, work, read, eat.
- Helped some by heat on pelvis. Worse with any fluid in bladder. No food triggers noticed.

Burning hot urine.
Varies a lot in intensity, with hottest not necessarily coinciding with most intense pelvic pain. Burns/stings any tissue (eg. labia) it touches while exiting. Does not reach agonizing level.

Reduced bladder volume.
Holds much less than it used to hold.

Difficulty urinating. This symptom is newer, began perhaps 3rd week of December. Seems to be worse on certain morphines, eg. M-Eslon (& discovered last week I think it seemed less severe while off M-Eslon & on Hydromorphone). Have to try running water, mental focusing ideas, very difficult to unclench urine muscle and keep it uncleanched. Varies a lot in intensity, sometimes not a problem at all. Besides medication type, have not been able to pin down what causes the varying.


---

Quick summary:

IC first diagnosed 2008; uncomfortable/ annoying/ mild. Went into remission after fulguration (cauterizing) & hyperdilation.

Late summer/fall 2010, first seemed like 5 or 6 urinary infections in really short time, like within two months. Discomfort gradually building in intensity through that time, building until discomfort became pain, then pain building until it became agonizingly severe pelvic pain which first took me into Emergency Nov. 1 2010. Pain developed and remained, cause has been under investigation since. Three ER visits: 2 related to that just blinding & unbearable level of pain, 3rd related to ‘neurotoxicity’- reaction to the narcotics.

First urologist says that I do have IC & always will, however that the current symptoms / responses are not in keeping with IC, are higher up or something else & as such, current pain is not urological.

Third urologist disagrees, believes it is IC, & wants to do another cystoscopy Feb. 25 2011 to check Dx.

[In addition, exploratory surgery / laparoscopy booked for May 2011, & colonoscopy to be re-booked, likely March 2011].

---

For me, there are no real 'flares' -- the severe pain is a constant - I'm on morphine/other narcotics 24/7, so what varies with the pain is to what extent the current drug is working at masking the pain. So one of my first things I'm interested in discovering in the forums is who else finds this - who else has constant severe pain rather than flares?


Instillations:

Tried 'rescue cocktail' instillation (3 meds. incl. lidocaine) about 1st week of Feb 2011, may have seen improvement (starting at 26 hours, then through inconsistently until Feb. 9 late in day) … but not 100% sure. Urologist seemed to suggest that if I did not have dramatic, very noticeable difference from the 'rescue' lidocaine instillation, that my pelvic pain isn't to do with the bladder. But it very very much feels like the bladder. So I'm also curious whether anyone else has found the rescue cocktail not dramatically effective, yet they were still told that they have IC.


Current Medications:

• 40 mg. M-Eslon (a morphine) every 12 hrs.
• 5 mg. IR (immediate release) M-Eslon as needed for breakthrough pain.
• Micronor (The Pill, started recently in case pain is related to endometriosis).
• 20 mg. Cipralex (pharmacologist halted, but I re-started re: of QoL issues)
• 150 mg. Wellbutrin.
• 2 x Colace/day (for constipation side effect, though seems to have little effect)
• xxxcrop as needed for nausea/vomiting side effect.
• Was going to switch to Methadone trial today, but I am going to put that off for a few weeks.

[also trying supplements, vitamins - that list later!]

I am interested in sharing experiences with others on M-Eslon, Hydromorphone, or Methadone for pelvic pain.


Diet:

October 2010 went completely off of coffee (previously drank daily toxic-strong black coffee [several-shot americanos]), alcohol, carbonated drinks, oranges, spicy food. Reduced tomatoes, other citrus. Working on other IC diet adaptations.


Related medical conditions:

Diagnosed HSV 2 (genital herpes) October 2010. In hindsight, believe I had first active outbreak in August 2010.

There has been medical research showing that HSV 2 can trigger interstitial cystitis.
Other research has shown that HSV 2 can significantly lower immunity.
The HSV & pelvic pain timelines seem to me to be too much of a coincidence to be a coincidence. I wonder whether HSV is why the IC symptoms this time (as opposed to 2008) were altogether different, a level of agony completely off the scale.

Not sexually active October 2010 - Feb 2011, so issues of how IC affects sex not applicable. No discomfort with sex previously, even in 2008.


Clinical Trials / Research:
- Participating in Boston hospital’s study about IC and genetics.
- Signed up to participate in North American MADD IC study, haven't heard anything so I've not yet begun.


Support Groups:

Interested in finding a funded community/healthcare meeting space in order to begin a Vancouver support group. Solutions-focused

Particularly interested in using such a gathering for hearing local recommendations for alt. / complem,.practitioners; also share experiences with severe IC and morphine /narcotics/opiates, & side effects.

One potential initial lobbying goal: to gather research and advocate to BC province for coverage of Elmiron (costs individuals $ 1000/year here, & in BC does not count toward Pharmacare deductible ... anyone know how this works in other provinces?)


I'll answer more of the 'intro questions' in another post not too far away. Really looking forward to sharing experiences, research & resources.

Lisa

[KatieB]

Lisa

I can understand about not having actual "flares". I also have pain around the clock. My "flares" consist of my meds not working or me getting behind the pain and trying to play catch up. It never works. I also have difficulty beginning to urinate (I run the water/all the usual tricks). Sometimes it works, sometimes I just have to sit with the agony. I wish I had more advice but the only thing I can do is take my meds round the clock and try not to put myself in a position where I'm trying to catch the pain. Like I said, it never works.

Good luck to you. And let me know if you come up with something that works for you.

Katie

[ICNDonna]

to the IC Network. I'm so sorry you are having such a difficult time.

You mentioned that you are trying some diet changes --- so I know you'll want to print out the latest food list --- the link is in my signature below. I hope you'll give the complete diet a try. Some of us find that diet is extremely important.

Sending warm healing thoughts,
Donna

[Pipkin]

Hi Lisa,

I'm so sorry that you are suffering so much.

When I first developed IC, I only had pelvic pain. Terrible, constant pain that made it impossible to sleep, work, eat, or even sit. My urologist diagnosed me with urethritis and I responded well to antibiotics at first, but then all my symptoms came back and then some. I eventually had a hydrodistension and was confirmed to have IC. Thankfully the hydrodistension significantly relieved my pain. My urologist considered me atypical because my pain was severe and unremitting yet I didn't have any urgency or frequency. In retrospect, I think what happened is that I did have urethritis, and then developed IC on top of it. I wonder if you may have some other condition in conjunction with IC that is causing your pain. I'm glad you are having extensive testing to find the underlying reason because then it can be treated. I'm sure there is a solution out there, you just have to find it.

I really hope you feel better soon.

[bob04951]

Wow, Lisa, you have been through a lot. Sounds like your doc is on top of things, and is trying everything out there, which is what most have been through as well.

Bob is pretty much in constant pain also, altho the flares still come and go. He uses a fentanyl patch along with oxycodone for breakthrough, and an occasional tylenol, and it has helped him. Patch changing day is always a happy day because he can sleep that night for maybe 2 hours at a time. I always apply it in the early afternoon so it "kicks in" by bedtime. You just learn these things through trial and error. Look around on here, you will see many, many pain treatments, and have seen some take methadone, but we have not. We are always writing stuff down and taking it to our NP to consider, but right now our regimen is just ok. Will probably up the patch dosage by summer, he prefers to go 6 months at a time. Think he is hoping Bob will hit a remission and not have to up it. Bob has severe IC, and has learned to live with it, take it easy when he has to, catch power naps as needed, and of course he overdoes things on good days which start the cycle all over.

Hope you find your relief, it does take time, and don't get discouraged. Jill, wife of Bob

[playethic]

'Lidocaine challenge'

Thanks all & to those who sent private messages.

I'm very appreciative for all suggestions.

Since doing some more reading of journal articles, I realized that the instillation that they did on me at the urology appointment was this:

a lidocaine challenge. By instilling lidocaine into the bladder, [a doctor] determines whether your pain is coming from your bladder, which would indicate IC.

In fact, that's a similar phrase that the urologist used when I saw him... he said the rescue cocktail instillation would tell him 'if it's the bladder".

That's kind of worrying... because I haven't had an immediate or dramatically different response from that lidocaine, I suspect the urologist will determine that what feels like severe pelvic/bladder pain (& hot burning urine) is not in fact coming from the bladder, & is not IC. Since that's specifically what he does, IC, I'm afraid I'll be pushed off the desk - another 'pass the buck'.

I came across this page, about pelvic floor dysfunction. So if not IC, I wonder, is that what I have?

Or, iff it's not IC, then some I'm reading point to it being psychological. That's discouraging.

An additional concern, I'd be more isolated ... if I'm told this current pain isn't from the IC, then I no longer fit within the support 'community' of IC-Network. Which is a big deal, in terms of alone-ness.

[ICNDonna]

You are always welcome here. I absolutely don't want you to feel alone.


Donna

[bob04951]

IC is just a tough thing to diagnose. Have you gotten a second, third opinion? A good PT can confirm PFD, one who is familiar with it. And then there is also prudenal nerve entrapment. Try googling that as well, the symptoms are very similar to IC. Wish you much luck in your attempt to get to the bottom of things, and do not get discouraged. Most here have had frustrating experiences, it takes time and sometimes many visits to different doctors. We have all been there, and the treatment options for all of these things vary and work for some but not all. Keep your head on your shoulders and be strong, you will eventually find a solution. Take care.

[VickiB]

Hi Lisa,

I know many of us here took a scenic route to our diagnosis. It's this, it's that, it can't be....UGH! This no-man land you're in is such a frustrating, scary, confusing time and I'm so sorry you're 'in it'! Hopefully with doctors, time, & tests you'll end up with some definitive answers and can then begin to tackle your diagnosis.

Or, iff it's not IC, then some I'm reading point to it being psychological. That's discouraging.

No kidding! Before being diagnosed with IC I had some suggest I simply accept this as my cause. Not that this psychological doesn't happen, but I would suggest writing your symptoms off as psychological as a last resort. -A very last resort!

An additional concern, I'd be more isolated ... if I'm told this current pain isn't from the IC, then I no longer fit within the support 'community' of IC-Network. Which is a big deal, in terms of alone-ness.

It sounds like you are dealing with many of the same symptoms and issues as those of us with IC. I'd say that makes you fit in here quite well!

So sorry you're going through this!
Vicki

[playethic]

Irony/wit

That cracked a smile for me, 'many of us here took a scenic route to our diagnosis'!
Thanks for the humour, and the support
Lisa