Re: 3rd lap 2 weeks ago, diagnosed with severe IC
From: Nicole (anonymous@obgyn.net)
Sat Jul 5 10:36:47 2008
Hi Christen99,
I just wanted to post some information on IC for you. My situation was
exactly like yours, I was diagnosed during a Lap. This was causing me
so much pain I wasn't sleeping and I was peeing blood. However, in 6
months time of diet change and following the medications I finally feel
like I have my life back. I can even have a Sprite now and then!
One thing I wanted to tell you is avoid the drug Elmiron. This is the
drug that alot of urologists try and use. It is kind of like the bad
drug lupron. It is very strong and has lots of side affects. My
urologist is awesome and is always doing drug research. He flat out
told me he would never prescribe this unless it is a very last resort
after nothing else has worked. I just wanted you to know this so you
can be prepared in your appointment. Look up Elmiron if you get a
chance.
But, there are other drugs. My combination is listed below and it has
worked perfectly. I really feel like a new person and am even starting
to be able to go off some of the medications now.
I have given this list to several people on this forum board because
they have been unsuccessful with the Elmiron or other treatments from
their urologist.
Here is my list:
Hydroxyzine Hcl 25 mg - 1 a day at bedtime
Sanctura Xr 60 mg - 1 a day in the morning before any food
Feldene 20 mg- 1 a day
Macrodantin 100 mg- 1 daily
Utira C .12mg- 3 times a day (turns urine blue)
Elavil 50 mg- 1 a day at bedtime (this is for the endo pain and bladder
pain) Both doctors agreed on this one.
Aloe Vera Capsule 470 mg- 1 a day.
The whole key is following this schedule and doing the diet together. It
has made all the difference in the world.
Also http://www.ichelp.org is a great site to read about the diet and the aloe
vera capsules.
I hope that this information helps you and I hope that you start feeling
better really soon.
Feel free to email me if you have any other questions.
--
Nicole :)
At Fri, 4 Jul 2008, niki wrote:
>
>Im sure the urologist will have copies of your operative report/pics etc
>if your gyn referred you. IC is common with women who have endo. Its
>actually referred to as endos evil twin. It can be controlled with diet
>and they will give you info on the diet as well. basically no caffiene,
>no acidic foods/juices, no chocolate! The diet trully sucks but it will
>help with the pain of ic. also there are several meds you can take to
>help relieve the pain and condition of the bladder. a well known med is
>elmiron. very scary side effects though. good luck and look up the
>interstitial cystitis group. it will have alot of info on the meds,
>diet, etc good luck and keep us posted!
>
>At Thu, 3 Jul 2008, summer wrote:
>>
>>You can ask your doctor for a copy of the op notes / report, if you
>>haven't already
>>
>>There's a patient review of Dr Payne here, looks good!
>>
>>http://www.ratemds.com/doctor-ratings/201155/CA/Palo-Alto/Payne
>>
>>At Thu, 3 Jul 2008, Christen99 wrote:
>>>
>>>I just had my 3rd lap a couple of weeks ago. They took out my appendix,
>>>a benign tumor on my left ovary, some endo, and then found out I had
>>>severe IC. I haven't been to my follow up appt. yet so I don't exactly
>>>know where the endo was found other than in my back (that's a new
>>>location for me) and honestly it's taken a backseat to the IC.
>>>Thankfully it wasn't severe, just a few adhesions here and there. It
>>>apparantly didn't bother my intestines this time (thank god!), but other
>>>than that I'm still clueless as to the results of my lap. When I woke
>>>up, dh told me that they did find a problem with my bladder and the
>>>doctor told him it was a very severe case of IC. They inflated my
>>>bladder a couple of times, but there were clots and ulcers everywhere.
>>>This was the first lap that I wasn't placed on the pill beforehand, and
>>>my cruddy period showed up 2 days before surgery. I was referred on to
>>>a Urologist, and will meet with him the week before I meet with the
>>>doctor who performed my lap. I'm not sure what to expect, I'm pretty
>>>upset with my diagnosis. It hit me the other night that during my
>>>period all the tissue that I was wiping away in the restroom was
>>>actually the lining of my bladder. The clots that I have been passing
>>>were most likely from the hemmoraging ulcers and it just made me sick to
>>>my stomach.
>>>
>>>Has anyone had any experience with Christopher Payne? He's a urologist
>>>at Stanford.
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