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very upsetting-you wont believe this one! very upsetting-you wont believe this one!

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Unread 02-27-2003, 05:00 PM
very upsetting-you wont believe this one!

Well here goes !

For the last five years i have been told that i have endo. I had my first surgery 4-5-2000 vag hyst they left my ovaries, also said that they removed endo from other areas. Still had continued pain so on 4-11-2001 they did a lap and removed my ovaries said they were full of endo and cysts, was better for a short time then pain returned. Found a new doc because other doc just wanted to keep switching my hormones and sent me to pain clinic. Had my 3rd surgery in march of 2002 doc said i had alot of endo again which she removed, but pain did not get better so in Nov of 2002 she did another lap and said that i had moderate to extensive return of endo which she got most of but could not remove all of because of the location of it, also i have been taken off all HRT so the endo would not grow. I was still having pain so decided i wanted to see a specialist i had all my records sent to Dr. Redwine who is a well known endo specialist. I got his reply the other day i could not believe what i read! He said that NONE of my path reports ever showed that i had endo. Do none of these doctors read the path reports? even at my post of visit after my 4th surgery they wanted to put me on Lupron. What they did find on my path report were nectorizing granulomas which Dr. Redwine said could be caused from the excision and electrocoagulation that they used. Im still in pain and have pain and sometimes bleeding with intercourse. So i know something is not right in there, but now at a loss to what is really going on. Dr. Redwine said it could be inclusional cysts. I have an appointment tommarow to talk with my GP doc to discuss all this with him and see what i should do, because now im at a total loss. Have i had all these unnecassary surgeries? and been without hormones for no reasons? Every time i think about it i cant stop crying. I did learn one thing request all your reports and have the doctor explain them. what a hard way to learn that one. Thanks for letting me vent.

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Unread 02-27-2003, 05:41 PM

I have an idea - just barely - of how you feel. I was so sick for about three years that I was unable to function. No dinners with family, no lunches out with my kids, no movies, etc. I had tests and tests and nothing turned up. A simple course of Cipro (taken for something unrelated) cleared it up. I was in mourning for quite awhile after that for all the time I'd lost.

I hope your doctor can help you make some sense out of this. Just an understanding will help. I'm really sorry you're having to experience this.

Unread 02-27-2003, 08:48 PM
very upsetting-you wont believe this one!

Thanks for your response joselle,

I feel like im in a state of shock, how after 4 surgeries they still were telling me i had endo and how many years could this have gone on? being treated for something i dont have. Im also really scared now that the doctors are not going to want to treat my pain again, finally i felt like they were listening to me and now im afraid they are not going to believe that whatever it is i have can cause me this much pain. I feel like im back at square one. Antibiotics really scare me, my 3rd surgery i had to take some antibiotics and do a bowel prep for preventive measures and ending up with Clostridium Difficile which made me very ill and ended me back in the hospital for 5 days. Doctors are also leary since then about giving them to me since i was only on them for 1 day and it caused that, usally its because of long term antibiotic use. I guess i dont do anything normal I hope you are feeling well now joselle s

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Unread 02-27-2003, 10:35 PM
very upsetting-you wont believe this one!

OH MY GOSH... I dont know what else to say!!!

I can not even begin to imagine how confused you must be right now.. Well, maybe I can. I was on the other side of your story... I had endo for 8 years and after 2 different laps with 2 different Dr's they both said it was all in my head. 8 years of constant pain and severe periods I finally had a lap with a Gyn that knew what he was doing. By that time I had developed not only more endo, but adeno, and tons of ovarian cysts that were precancerous. To make it all worse, the first Gyn put in my surgery report that there was a unknown clear substance on both ovaries and uterus and DID NOTHING about it. He just left it there to grow into a monster. I am sorry you are finding out AFTER they removed your organs and took away your HRT. Hopefully they will find out what is causing your pain and finally fix the problem.. My goes out to you...

Keep us posted on how you are doing and just take a deep breath and remember we are here for you!!!

Unread 02-28-2003, 10:07 AM
very upsetting-you wont believe this one!


Sorry to hear that you also had to go through a rough time.

I know that doctors are only human also, but it is very scary to me that some things like this can go on for so long and they dont catch it. Im glad that you found a good doc now and hope you are feeling well. I see my GP doc today, im nervous and very interested to see what he will say about my situation. Dr. Redwine did say that i have a reasonably good prognosis if on pelvic exam that i have spot tenderness (which i do) but it also means that another surgery is in store for me. I guess a person can just take it one day at a time. Wishing all health and happiness

Unread 03-01-2003, 01:37 PM
very upsetting-you wont believe this one!

Well im even more confused now!

I went to see my GP yesterday to see if he could make any since of my situation. He read my letter and then started looking back at all my path reports, my 3rd surgery did show endo, so now i really dont know what to think My first surgery LAVH they burnt the endo off so i dont think they did path on any of it just on my uterus which showed andenomyosis. He also did an exam because i expressed again to him how i have been bleeding after sex and that it is very painful. He said that everything looked like it has healed fine and no cysts, but that i had a VERY short vaginal vault caused when they did the hysts. Please if any one else has experienced this please there any thing that can be done? I dont want to go through life like this..It has really taken a toll on me and my DH relationship. Even when we are very careful it still is uncomfortable, my DH says he can only penetrate half way. Sorry to be so blunt about this but im hoping someone has some answers. s to all my sisters suffering on the road.

Unread 03-01-2003, 02:08 PM
very upsetting-you wont believe this one!

I am soo very sorry for all you've had to endure There have been a few Ladies here who have had shortening of their vaginal canal that resulted from their Hysterectomies. It seems to be more common when having a TVH. They used *vaginal dialators* with some good success You might try a search here using that as the keyword. My thots & prayers are with you
Unread 03-01-2003, 03:49 PM
very upsetting-you wont believe this one!


Having had my surgery for severe endo, after several laparoscopies for it, I'm wondering if these "necrotizing granulomas" have to do with the residual of the previously lasered endo.

As you may know, endometriosis does create its own blood supply, and interferes with the normal blood supply of the tissue around it. It may be that the removal of the endo itself didn't necessarily get all those little blood vessels, and that the granulomas are scar tissue that has formed where the implants were removed. So you may well have needed all this for the endo, and this may be an aftereffect of the body's tissues trying to heal from those old surgeries. Frankly, it sounds like you DID have endo. My surgical report dealt mostly with my cyst, and made little to no mention of the fact that my cul-de-sac was obliterated with endo (that alone is enough to class it as stage IV). I know, because I spoke with the surgical fellow who had assisted afterward. And path reports often are not all that useful for endo, particularly if the excisions were laser doesn't leave enough of the endo to sample.

So, did you go through all of this for nothing? I'll bet anything that the answer is NOT!! Especially if you had adeno, which is endo infiltrating the uterine wall, this sounds like where you would have gotten to sooner or later anyway -- and it might well have been worse under the influence of estrogen.

A comment on the vaginal vault problem: since you have gone estrogen-free, you may be dealing with a combination of atrophy of the vaginal walls and quite literally "stiffening up" of the vagina from disuse. If you search "vaginal dilators" using either the Cancer Concerns forum or Post-Op, you will see that others have been down this road. Often a course of vaginal estrogen (much less systemic absorption) and using the dilators enables the vagina (normally an elastic organ!) to stretch out again to be able to resume your normal sex life. It will take some time, since it's been a couple of years now, change won't happen overnight, but I'd bet that eventually you'll have your function restored!

Good luck, and I hope you finally get some answers from whatever source!

Unread 03-01-2003, 04:33 PM
very upsetting-you wont believe this one!

Sheri and Audrey,

Thank you both so much!

Im already feeling a little better after reading your posts. I will discuss the vaginal dialaters with my GP...Oh he is consulting another ob-gyn to discuss my case with, and hopefully i will hear something back next week. I think you are right Audrey thats why i was so confused how can 2 gyn doctors say i was full of Endo and then hear i didnt have any. After disussing my reports yesterday with my GP i believe that the path reports werent conclusive because of the procedure to remove the endo (burning of it) and the 3rd surgery only a 1 cm peice was sampled and showed it to be consistant with endo. As for my last surgery my doc did say there was endo she couldnt remove because it being on a major nerve and artery. Could that be granulomas there? If no surgery has taken place in those areas before, or is it Endo?
All i know is that i still have the same kind of pain...Thanks so much again i don't know what i would do without the support here.

Unread 03-01-2003, 05:39 PM
I'm relieved, too

It's always good to hear the voice of reason. And what a relief to even know there is a possibility that you really did have what the doctors said you had. It sounds like there was a lot going on in there and having a hysterectomy was probably inevitable. But I can really understand your initial reaction.

Keep us posted!


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