Re: Dian Shepperson-Mills some real results!
From: Sherri (anonymous@obgyn.net)
Mon Feb 25 11:55:33 2008
Nicole,
Thank you for the info you gave re: IC and the meds your urologist has
you on. I have an appointment with my uro tomorrow, so I'm gonna print
out your post and take that with me. I really do not like this uro at
all, but for whatever reason, I can't seem to change uro's. It's
ridiculous in my opinion, but the small town I live in has one medical
office that all the urologists are in, and once you see one, they will
not let you change docs! My insurance will, but the medical office
won't. It's getting really bad, b/c the uro I see has no clue when it
comes to IC, and he has no bedside manner either! He seems to only be
interested in doing surgeries, and when I complain about my bladder pain
and problems from the IC, he always tells me to go see my gyn.....who
tells me it is NOT a gyn problem, with which I agree totally. This uro
just keeps trying to get me to take Elmiron, claiming that most of his
IC patients don't experience any side-effects from it; however, the
patients that I have talked to, do in fact have issues with this drug. I
think your uro is right about it being a very strong drug, and hair-loss
can be a side-effect from it. Of course, my uro claims that never
actually happens, but I have talked with other IC patients that HAVE had
that side-effect among many others. My uro also tells me that IC can
not cause as much pain as I "claim" to have, which is just crazy, when I
know how I feel and from the info I have read online and on the IC
brochures that HE gives out!! The only other "treatment" that this man
seems to know about for IC, is the DMSO injections, which I have done in
the past. I never really noticed any improvement after the DMSO. Has
anyone else had the DMSO and had improvements because of it? I'd love to
hear others' opinions on that and the Elmiron also.
Yes, unfortunately, I am well aware of what I can't have to eat or drink
due to IC! It cuts out a lot, doesn't it? Between that and the Mills
diet, what I CAN still eat gets kinda boring! LOL! Oh, well, if it stops
the pain then it is well worth it!
Anyway, thanks for your info and I hope that you continue to feel
better!
--
Sherri :)
At Fri, 22 Feb 2008, Nicole wrote:
>
>Sherri,
>You're right when you say it is not easy to follow both diets for the IC
>and the endo. I am sure you are aware of the items that cause IC to get
>worse. My urologist has suggested the normal stuff- citrus fruits,
>avoid coffee, soda. http://www.ichelp.com has the whole list. I have cut all
>of those items out, then with the Mill's diet all wheat and gluten,
>limited dairy. Between the two, it is difficult but I do eat alot of
>salads with grilled chicken, shrimp, and fish. I have found some good
>alternatives to wheat at the health food stores. (rice flour) They make
>rice tortillas, some cookies with rice instead of wheat. I am now
>getting used to it and trying to plan ahead each day so I stay on track
>with it. If I have to eat something fast food- Wendy's makes a good
>salad!
>
>In the surgery I had this week, my bladder looked awful. It is
>completely inflammed and full of irritation. I just recently started
>seeing this urologist this month, so that is to be expected. However, I
>am on a new treatment plan for the IC. This is the list of meds he has
>me on to try and reduce the symptoms first:
>
>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)
>
>He has told me that he wants to try and "calm" things first and see how
>I feel. Also he told me that Elmiron is a very strong drug and he likes
>to try alternatives to using that first. The combo above is alot, but I
>am already starting to feel better and am able to sleep at night for the
>first time in months.
>
>I understand totally what you mean by not knowing where the pain is
>really coming from. For me, knowing how bad my bladder is at this
>point, I think that is where most of my pain is coming from at the
>moment.
>
>I hope this helps in explaining things. Please feel free to email me at
>nriggs@hotmail.com if you would like any more info! Thank you for your
>positive remarks! After all the negative remarks that started last month
>on here about the Mill's diet, I never know what to expect.
>
>Have a good one!
>Nicole
>
>At Thu, 21 Feb 2008, Sherri wrote:
>>
>>Nicole,
>>
>>Congratulations! I'm really happy for you that you have figured out what
>>works for you! So, it has only taken you 6 months to get such a great
>>result? I also have both endo and IC, and I try so hard to follow the IC
>>diet, which is no easy feat. What is the differences between the IC
>>diet and the endo diet that Mills describes? How did your bladder/IC
>>look? Do you still have pain b/c of IC or endo even while following the
>>diet? I seem to still have a lot of pain, even with all the changes I've
>>made, so that makes me very frustrated. The docs can't ever decide if
>>my pain is mainly IC, endo, or the nerve damage I have due to all the
>>surgeries I've had, or a combo af all 3. UGH!
>>
>>OOPS! I just re-read your post, so I see what you said about your
>>bladder. What meds does your urologist have you on? Do you take Elmiron
>>or Elavil? These are the only meds my uro has ever mentioned to me, so I
>>wanted to see if yours was different.
>>
>>I don't see why anyone would give you negative feedback regarding your
>>post. I think it's GREAT that you have found what works for your body!
>>Good for you!!
>>
>>--
>>Sherri :)
>>
>>At Thu, 21 Feb 2008, Nicole wrote:
>>>
>>>Just thought I would post some recent info on my surgery.
>>>
>>>I just had a Lap Surgery on Monday. This was not focused on my endo,
>>>but an orange-sized cyst that had developed off my left ovary. Since
>>>the size was so large my doc wanted it removed ASAP. While she was
>>>doing this, I had he take a look at the state of my endo as well as the
>>>IC in my bladder.
>>>
>>>Here comes some good news for a change! I had no signs of my endo this
>>>time around!!!!! I had another lap about 6 months ago for my endo and my
>>>uterus was covered in stage 2 endo.
>>>
>>>I am sure I am going to get some negative feedback on this, but I wanted
>>>to let people know what I changed. I changed my diet right after I had
>>>my last surgery. I have followed the Mills diet page by page as well as
>>>started taking the Vemma vitamins.
>>>
>>>This is the only thing I have changed and now I am finally seeing some
>>>results! I dont think I have ever been so happy coming out of surgery.
>>>Normally it is the dreaded conversation with my doctor about how much
>>>the endo has progressed, but not this time.
>>>
>>>I did find out how bad my bladder really was, completely inflamed so I
>>>am hoping the meds from the urologist will start helping.
>>>
>>>Although it has required alot of work to be on the diet (both Mills and
>>>the IC diet) that moment was worth it for me.
>>>
>>>I hope this will provide some insight on other possible ways to deal. I
>>>am not saying this works for all, but it has for me.
>>
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