Endo back???

I think this is the best place to post this. I'm 3.5 months post-op (wow!) and I think the endo is back. At least, something is going on. I knew going in that the hyst was not always a cure all. I'm really not in pain, so to speak, but it just doesn't feel right. You know what I mean? There is some mild cramping, kind of a dull ache most of the time, but it gets worse when I need to use the bathroom. I don't have a bladder infection, that was just checked. It also gets worse when I need to have a BM, but that's no surprise.

What worries me is that the Dr really didn't find much endo in my last lap (Dec 2000) but I had been on Micronor (progesterone only BCP) for about 2.5 years at that point. After the lap, I did 3 months of Lupron, in hopes of killing any endo that was left. He also said at that time that I had CPS (Congestive Pelvic Syn) which could also be causing problems. At my pre-op, he also discovered fibroids, which had been disguised by my swollen, CPS inflamed uterus.

During the hyster, he took out the uterus and cervix, looked for more endo (none found - Lupron, remember) and inspected the ovaries. He decided that the ovaries looked ok and left them since he said that 31 was awfully young to take them out.

My Dr, who I loved, has since moved. He isn't that far away, only about 230 miles, but it would still be a huge production to get to him when I just don't know what to say. He has a replacement, but I don't know her and just can't decide if I want to go that route, or go to St.Louis and try someone closer (100 miles or so). I know that I don't want to let it get to the point it was earlier in the year, where I was on Vioxx and Percacet just to make it through the day.

Does anyone have any ideas? I am going to make an appointment to see my GP (I'd need a referal anyway) and want to go in armed with options. I guess I always have the Micronor option, again. Does anyone have any better ideas?

Thanks a bunch.

Barb,

I wish I had some insight to share with you dear. I hope the dreaded Endo is not back. Do you think it may be adhesions? That's what I thought I was dealing with...until after my lap (July 12th) I was told that I had quite a bit of active Endo in my pelvis, and I lost my ovaries when I had the hyst., I also did not start hrt for 3 months post-hyst., in hopes that and remaining Endo would die off.

Could you maybe arrange to have a phone consultation with your dear old dr (that moved) and see what he thinks? That way; since he is familiar with your case, he can make the call as to whether or not he wants you in his office, or if he can suggest someone that is very good closer to your home.

I wish I had some ideas for you...please let us know how you are doing...

's

I'm bumping this back up== Judester has experience with this and may want to respond (provided she's feeling better)

Hello Again!

I also wanted to add...that most dr's looked at me like I had 3 heads. Both dh and I knew in our hearts that the endo was back. I knew the pain was the same as before the hyst., so my fear was either, A) I had the hyst for the wrong reason ie. Something else was going on or B) That I was totally nuts ~ that's how the dr's made me feel anyways!

I ended up getting referals to a whole new slew of doc's and that has been most helpful. My new gyn was sure that she would find adhesions...and her eyes :eyes: bugged out of her head when she told dh that I had a lot of active Endo deep in my pelvis, and elswhere. Sadly, now my docs are taking me more seriously...but I had to go through heck to get them to listen.

I'm going to my new doc tomorrow, and I'll be starting a new hrt with a lower dose of estrogen, and some progesterone (I was using the cream on my own, but I don't think that was strong enough for me personally.)

I truly hope that your Endo has not come back. As Angie and others know, it is a very stubborn disease that just doesn't get the attention it deserves.

Please let us know how you are...xo

Hi there, I had endo prior to my hyst too, and although they didn't see any when they went back in , in Jan of this year they did find adhesions and removed them, my pain was similiar to yours, some of the time, a dull achy pain and then it progressed with the amount of activity I had to a sharp burning pain......also with the pain with urination it could be a case of not enough estrogen, I found when I wasn't getting enough that I had pain with voiding..........or the dreaded endo could've returned.....it happens......I would consult with the replacement gyn and see what she says, who knows you might really like her alot

If nothing else, you should be telling a dr that your pain has returned, there may be something they can do to make you feel better......let us know how you make out ok?

Hi there,
I have just dropped in to read your post here as I am having severe pelvic pain which is radiating through to my lower back. At first it was extremely debilitating and felt just like when I had endo! I just couldn't believe it. I didn't think it was possible. my surgeon assured me that the op would mean the end of the endo.

The pain was making it hard for me to walk at times and seemed to be affecting nerves. Now it is a sharp pulling pain, sometimes burning soemtimes a dull ache.

Same as some of you have described. I have had an ultrasound but nothing showed and am due to see the surgeon again in 2 days.My doc says it is likely scar tissue/adhesians of some sort stuck to my bowel. This makes sense so perhaps that's better than if it is endo again. i don't really understand how it could be though with everthing out.

Hope everything finds answers and also, solutions.
One suggestion is chinese herbs. I went on these a couple of years ago and they cured the endo and I was pain free for a long time.I used the real ones you have to boil up and drink the liquid. Smells and tases bad but you can put honey in it and it worked for me.

love and support to all-tilly

Hey Barb honey!!! just a thought....from one CPS to another....I have the SAME exact pains you have described...the before I pee and all that stuff....something just off keester in there...I even have it in my legs..or leg...I would say at least get it checked out...and let us know but just wanted to put that bug in your ear...to think of that as well..let me know honey!!!Talk to you soon!

I talked to my favorite care provider (the P.A. in my GP's office) when I took my little one in for the 4th straight day (long story) and I'm going to start a couple of months of the progesterone pills. We are hoping that will allow me to see if the discomfort goes away, which will help with determining just what is wrong. Either way, it is a non-invasive method of ruling one problem out. If it helps, it is probably a spot of endo. If not, well, we go from there.

They also want to send me back to the GYN, which means we start all over. I think the plan is for me to see the new Dr, and ask for a phone consult with the old Dr and go from there. Probably an ultrasound.

Thanks, Becky. I never know what I'm dealing with, Endo or other. I always tend to think endo because it is kind of the worst case possible, but you are right about the CPS stuff.

I'll keep you all posted.

They got me into the new GYN on Monday. I don't have an appointment, I've been told to show up at 2pm and wait. They'll work me in.

Hopefully, she'll have some good ideas. I leave Tues night for a vacation with DH, and without the kids.

Hmmmmm, the last female GYN I saw had no feeling for pelvic pain - said some pain was normal. Hope this one is lots better.

some pain was normal???

I don't think so, especially when you have had a hyster and aren't having periods anymore??

I hope this one is better, please let us know what she says