[Guest]

Dear Dr.
I am in severe pain. I have had over 30 sugeries for IC Endometriosis, as well as having an awful time with Fibromyalgia. I am schedudled for a hydrodistention, which happens to be the only thing that helps me. It is 3 weeks away. I use a cathader every time I urinate and for 2 days now, that has also been extremely difficult. I hate the ER, but I am in so much pain...I cannot sleep. I am always going to the bathroom. Do you have any words of advice?

In Extreme Pain,
Amy

[Guest]

Hi Amy, I also have your symptoms and have had fibromyalgia for 25 yrs. (severe). What is a hydrodistentention..a widening of the uretha opening? This is very painful. I have pain meds, neurontin, klonopin, and muscle relaxers,. This is how I started my day. I am in so much pain tht I don't know what to do. I took two Phenazpopyrid this am (100 mg ea) am am not getting relief. I can't see my dr. as it is T.G. weekend and know I am in for a lot of appointments. I wonder how many people with fibromyalgia have this disorder? My sister and brother have Hodgkins cancer and both have fibromyalgia. I know we are lucky that this is all we have...so many people are much worse off. I am open to anything you know that will be of help to me as I am just in the diagnostic state. My sister with Hodgkins cancer has kidney cancer also as a primary tumor. She was diagnosed in stage 4. Please send me anything of help. Thanks..phyllischildren at bobhake@msn.com
[quote] Dear Dr.
I am in severe pain... [/quote]

[Guest]

Hi Amy, I also have your symptoms and have had fibromyalgia for 25 yrs. (severe). What is a hydrodistentention..a widening of the uretha opening? This is very painful. I have pain meds, neurontin, klonopin, and muscle relaxers,. This is how I started my day. I am in so much pain tht I don't know what to do. I took two Phenazpopyrid this am (100 mg ea) am am not getting relief. I can't see my dr. as it is T.G. weekend and know I am in for a lot of appointments. I wonder how many people with fibromyalgia have this disorder? My sister and brother have Hodgkins cancer and both have fibromyalgia. I know we are lucky that this is all we have...so many people are much worse off. I am open to anything you know that will be of help to me as I am just in the diagnostic state. My sister with Hodgkins cancer has kidney cancer also as a primary tumor. She was diagnosed in stage 4. Please send me anything of help. Thanks..phyllischildren at bobhake@msn.com
[quote] Dear Dr.
I am in severe pain... [/quote]

[Guest]

Hi Phyllis,
First, let me tell you how sorry I am that you have had to endure so much.
To answer your question about hydrodistentions...well every 16 weeks I have outpatient surgery. The distention is combined with a stretching of the bladder wall and the urethra. It is extremely painful and therefore, requires anestesia. I am totaly asleep, but wake up in excruciating pain. This is only recommended if all else fails! I have what my Dr. describes as little ulcers inside my bladder, creating pain, frequency, abdominal pain etc.. We have found that doing the procedure every 4 mos and using a straight cath at home makes life tolerable. This works 70% of the time. A lot of the time I get infections because for 7-10 days after the procedure I keep a regular catheter in. If an infection occurs, the procedure was not a success. But this is the only thing that has let me receive some relief.
I use a straight cath every time I have to go. It sounds horrible, but I am use to it now. Otherwise, I would not be able to urinate at all!! The total times up get up at night is around 60x within the time alotted to sleep. I don't sleep too much because I am always in the bathroom!!
I also am very involved with my Dr. Every med given and every procedure done is done after I spend hours learning about my diseases. He is wonderful..my doc. I also go to a pain clinic where I am involved again w/ every med I take. With the Fibromyalgia and Endometriosis as well as having to deal with HRT, becuse of a total ab hysterectomy...life can be challenging.
I am not sure if I am helping. I try to read everything I can in regard to all 3 of my "problems". I don't like to think of myself as being sick. I have a beautiful 7 yr old son. He brings such joy and positive energy into my day, I just cannot be moppy.
All my research indicates that over 50% of peole with fibromyalgia and/or endometriosis also have IC, as well as migraines, irritable bowel and chronic fatigue.
Right now I have 6 docs on my team. Really 7 because I know more I think than they do !!
My endo doc lives in California and I live in Massassachusetts, so I have flown there 3 times for laporotomies(the full incision). He is tremendous. All my docs work well with me and my need to try to help myself and provide them with the research I have found.
I was once mistakenly diagnosed with Hodgkins. My advice is to always seek 2 or 3 opinions. I am sure glad I did.
I was lucky to have my miracle baby(they told me I would never have kids). So trust your instinct.
No question is ever too trivial to ask. Make lists, bring print outs of what you have found and really be part of the discussion and then you need to ultimately make the decision.
I am not sure if I helped. If you google Interstial Cystitis you will find a slew of info. Just becareful of the magic pills they sell...they will never work.
I hope you find some comfort in my post. You can always email me privately at [moderator note: e-mail address has been removed]
I hope you will feel better and your life will rebalance itself. Life is always changing...we just have to try to keep up!
Amy
Hi Amy, I also have your symptoms and have had fibromyalgia for 25 yrs. (severe)...