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Losing Momentum Losing Momentum

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Unread 01-01-2008, 01:45 PM
Losing Momentum

I had my LAVH/RSO 9/10/07.

I thought I was getting better but now I am beginning to think differently.

I have had bladder issues since day one of my surgery. It started with not being able to go once they removed my cath. and since I was sent home I have had a delay in emptying my bladder completely. I go then stop and have to lean forward to finish. I have had 2 UTI's (so they say ) and have now been referred (2nd time) to (another) Urologist. The 1st just had me track my voiding for three months...?

So this one is supposed to send a camera up there to see if I have IC (interstitial cystitis) and the doctor said if that came back negative she is sure I have Endometriosis in my pee'r?

Sex SUCKS!! Hasn't been good since before the surgery, but the doctor says with the bladder suffering I have been dealing with is an issue, sex may be affected since it is all so close together...?

I thought this surgery was going to change my life? I thought being sick was a thing of the past..? I have been in pain for at least 3 weeks daily and NONE OF MY DOCTOR'S will give me pain meds to manage my pain! They say "most people can tolerate your symptoms." I was prescribed pain meds from my GP. When I realized I was allergic to one and my insurance didn't cover the other, my GP's nurse told me "since you are seeing other providers (urologist, gyno, chiro, cardio) then you are no longer accepted in this practice" and then said "have a nice ***** day" and the call ended with me asking to speak to the office Administrator and her telling me "no" and hanging up. I left a message after an hour of the office giving me the run around, so I hope to hear from the Administrator tomorrow. This happened last Friday. I just want the Admin to know so this is not as likely to happen to other patients. Although, I am nearly for sure I wasn't the first and won't be the last. I just came to their office in August and by December I am so offended and ignored at that office, I feel the matter should be addressed. I have many Rx. allergies and they called me in Rx's that I am clearly allergic to and then got mad at me when I called for them to correct the problem..?

So my marriage is now rocky. I am completely short and frustrated with him and his needs. Since my needs have missed the radar, I just don't feel all loving or tolerable of his "lick me, touch me, rub me crap".

I have not had an orgasm that didn't leave pain since 3 months before my surgery (June) and good sex... 1 time last year. 1 time!

I thought I would be more recovered by now and I still have crappy days.

I guess I am losing momentum...

I am really hoping for suggestions, I just don't have any answers...
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Unread 01-01-2008, 03:21 PM
Losing Momentum

Wow perceptionist.

I am so sorry you are going through all this. I don't have any experiences to shar with you but I want you to know you are in my thoughts and prayers.

I hope the next urologist is the one who figures things out for you!

Unread 01-02-2008, 09:41 AM
Losing Momentum

So no one has any suggestions...?

Sigh... Sometimes I guess ya do have to go it alone...

I am going to see if I can find a IC forum.
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Unread 01-02-2008, 10:06 AM
Losing Momentum

I am sorry you are dealing with all this. You are not alone, I am still having similar issues. My bladder is still bothering me, but you know what my doctor told me? Get used to it! She said this to me, I was in shock. I am now seeking a second opinion. I hope you find relief soon. Do you know what they do if you have ic? How do you get this? I am looking for answers too. I have been wondering how you were, I haven't seen any posts from you in a while.
Unread 01-02-2008, 10:29 AM
Losing Momentum

So glad to hear from you...!

Did you think we would be back in the swing of things by now?

IC is treated with meds that only work on 30% of patients..

Dr. also thinks it could be Endo in the bladder...???

Either way I have months of suffering with no to little help. I can't even get a percocet to manage my pain and discomforts. They say, I should be able to take a Tylenol....

I am depressed from all this and banging my head against the wall.

Has made me soo moody and unplesant..

I feel for my family...
Unread 01-02-2008, 10:31 AM
Losing Momentum


I did not realize you had vaginal cuff repair in Oct! How are you and have you been better?

May I ask how you knew that you needed a repair?
Unread 01-02-2008, 10:47 AM
Losing Momentum

Hi Perceptionist!

I am sorry things are not going well for you and you are continuing to have issues from your surgery. I had a very long complicated recovery myself and know that it is not fun.

Since you have mentioned that there is suspected endometriosis in your bladder, are you seeing an endometriosis specialist? My urologist was the first to suggest I might have endometriosis in my bladder. Before he could complete all the testing he wanted to do, a complex cyst on my right ovary was found so he referred me back to my GYN. As endometriosis looked like the culprit for most everything that was going on, I ended up seeing an endometriosis specialist who will be doing surgery next week and as part of surgery will do a cystoscopy to see if there is endometriosis in the bladder. He will also be looking for IC.

When I had asked the urologist how he would treat endometriosis in the bladder if he found it, he stated he would just cauterize what he found. When I asked the endometriosis specialist the same question, he stated that endometriosis in your bladder also means you have endometriosis on the outside of your bladder and it has ate through the bladder wall. Thus, excising all of it is the key, not cauterizing what is visible inside the bladder. Until surgery, we won't know exactly what has occured for me but he is leaning more toward IC than endometriosis in the bladder. I guess I will find out next week!

I hope that you find some answers and pain relief soon! It is rough when we have pain day in and day out and it does affect those around us.

I wish you all the best and am sending s your way!
Unread 01-02-2008, 11:01 AM
Losing Momentum


Oh My.. I to am sorry to hear of your events. Sounds very similar. I do not know if this is caused by the hyster or if it was pre-exsisting and not having uterus problems allows for this issue to be more problematic. What do you do for the pain and such? My GYN gave me a script for Lidocain ointment to apply to the pee area. I have my doubt it will do me any good because most of my pain is inside under my pubic bone and near my kidneys. Sigh. I find relief knowing I am not alone with these symptoms. Should I feel bad calling my GYN and asking for pain meds to deal since this is not going to be addressed for until 2/13/08? Sigh. You know I used to get so mad when Dr.'s would shove me off with a Percocet Rx or similar for my Endometriosis (years ago), now I have pain I have no experience with as I no longer have my girle parts so I feel like I am lost at sea, so to speak.. I know that must not make sense but I am frustrated. I have to lay down most of the day as sitting up irritates the pain. Starting and finishing the pee process is sometimes so painful I have to curl over in a ball on the toilet and make weird faces. I swear if I am home alone sometimes. Am I wrong to feel I should be healthy at this point? How do I go about managing this issue at this point IYHO? Should I ask for a referrel to the Pain management clinic 2 hours from my house since this appears to be an ongoing issue? I pee so much during the night ( 3 - 7 times in 8 hour period) I never feel rested and feel that I am looking at the map to find my way but it's just a blank piece of papaer.
Unread 01-02-2008, 11:11 AM
Losing Momentum

Originally Posted by Perceptionist

I did not realize you had vaginal cuff repair in Oct! How are you and have you been better?

May I ask how you knew that you needed a repair?
I knew I needed a repair when my intestines came out! Actually it happened when I had sex at 7 weeks and I felt a pop. Then a ton of blood then clearish fluid. Then the emergency surgery! I am not "normal"so don't worry about it happening to you. I also thought we would be back to normal by now, but I learned that my body is a very slow healer. A lesson learned the hard way! I hope they can figure out what is going on with you. I also have heard of endo in the bladder. I know when I had my lap done in 2002 I had some removed from the outside of it. Good luck and keep us updated.
Unread 01-02-2008, 11:18 AM
Losing Momentum

I would suggest finding a doctor who will listen to you as a person and help you with the pain. Pain management might be the best option. A doctor who deals with pelvic pain might be another good choice. You may want to consider a urogynecologist. Just having a general practioner who will listen and send you to the specialist you need can be crucial.

I know I go between my GP, GYN, gastro, uro, neuro, and now the endometriosis specialist to find what is best for me. I currently take prescription pain medications around the clock for other health issues and they don't really do much for pelvic pain so I know it is frustrating when you can't get the meds you need for specific pain issues. My neuro prescribes my pain meds as he is treating my other health issues which cause greater pain than my pelvic pain. The other doctors don't want to add more meds to the mix and really, for me, that is probably best. Once the pelvic pain started competing with the other pain, surgery became pretty much inevitable because of my specific circumstances.

It might be helpful for you to keep a pain diary. I have found ReliefInsite’s online pain diary helpful. You can then share this information with your doctors so they can "see" what type of pain you are dealing with, how long you are dealing with pain, and how it is affecting your life.

in there and keep looking for answers!

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