AHH Update
Question:
Hi Everyone, I wanted to say a great big Thank You to all of you who wrote me such nice messages!!!!!!! They really helped to lift my spirits and renew my strength in fighting this. You all mean more to me than you will ever know and do not even know how I survived the years before now without you!!!! I am so touched, you all brought ‘good’ tears to my eyes!!!!!! Thank You!!! Next, I saw my GP Mon, who is the doctor I trust most and who even shows the least little understanding and compassion for what I deal with. We talked and her nurse was able to finally get a copy of the op report so we could go through it together. I let her know I am totally at the end of my rope in dealing with this lower back pain. Also let her know that I am still bleeding rectally with my periods, and that I have spent the last week having a period when I shouldn’t have and am on the pill. I started to cry when I talked to her, I just couldn’t help it. She thinks the pill isn’t going to be enough to shut down my system, and that I may have an implant that has gone through the wall of the bowel before it was removed. She can tell I am at the end of my rope, totally. So, my two options now are try the Depot Provera or a hyst, and she is not at all fond of the idea of a hyst already, but knows I can’t take another 14 years of this. This is the first doc that ever told me a hyst is not a cure for it, she also knows the depot isn’t either, but thinks if we shut my system down it might calm it down and give me some relief. She wants me do some gathering of info on depot and hyst and ERT after the hyst. She did provide me with pain relief for awhile so I can research, think and decide. We could find no mention of what my uterus looked like in the op report at all. I did have adhesions, having to do with left tube and sigmoid colon. I had the cysts, one was for sure an endometrioma, and polycystic ovaries. The cul-de-sac was full new lesions and old and he sheared it off. I forget all that it said, but she says it’s not good. Also, thinks the chances of my having adeno is a real good possibility. I also had appt with surgeon in the afternoon. He acted like it was all no big deal. That I haven’t given the pill enough time to work and I could switch to depot if I wanted. He said the pill should work on the adeno and if I’m still hurting after it works, then we should talk about my expectations!? That the pain is probably from some other source than the reproductive organs. (Lower back pain and pain in left lower quadrant). I don’t like this at all!!!!!!! My DH said it sounded like he was trying to say in a round about way that it’s in my head!!!!!! I Don’t Think So!!!! I told him about all the advil not touching it, not sleeping, hurting no matter if I sit, stand, or lie down. It just didn’t register with him, or I just can’t express myself as well to him. He also treated my bleeding w/full blown cramps like it was just spotting, not a period and completely normal. When I have a period, I die the first 3 days and then the cramps lighten up, this is day 8, now, and still have regular cramps!!!! I thought I really liked this guy and his technique, even though he won’t give anything for pain except ultram, but, now, I have major doubts!!! When I asked about my uterus, he looked through his notes, and said it must have been fine since he didn’t write anything down about it. I think I will be letting my GP take my care from here, I really only wanted the lap from this guy anyway, and she has my trust, and cares. (I’m sorry, MaryBeth, it has nothing at all to do with you, hon, it was my choice to use him, and I probably would again for the surgical technique). I’m supposed to call my GP and let her know what he said, do you think she will be surprised? Thank God, I have her, or I would be totally suffering. So, that is where I am now. I am afraid of the depot because my little sis used it and said she turned into a nut case, and with my depression factor, I am skittish. Can it be given in pill form, does anyone know, so if I have problems with it, it isn’t in my system for 3 months?? And would the pill form work the same way? How many didn’t have good emotional reactions to it? I will do a search on dejanews, too. That and do the pill or the depot work on adeno? Would it be a waste? Like I said, I have some time to work through all this. If I have the hyst, I can’t keep ovaries because of the cysts, and doc isn’t thrilled with the idea of no ERT for 6 mos., said it would be worse than natural menopause because it would hit all at once instead of gradually. I just can’t fathom dealing with it all another 14 years, especially if I do have adeno and it progresses. Thank you all again!!!! I knew when I posted, I would get the caring and understanding you are all so good at. I’m doing better, even if it is with pain meds, I can at least function! :) Take Care, Sisters!! Sherry K
Response:
Dear Sherry (Part Deux), Actually, that should be "Part Duh"! So sorry…I accidentally hit "send" befrore I was done with that last letter!!!! Anyway, what I was starting to comment on was: He said the pill should work on the adeno and if I’m still hurting after it works, then we should talk about my expectations!?
Although I think the pill may have helped me survive the adeno for several years (before it was diagnosed), there is really no way to confirm this. Are you having long and VERY heavy periods? If you are going to do the pills continuously it might help you for a while…of course, that’s IF they stop your periods. I never did try depo, so I can’t help you there. I think you run the same risk of depression with either one, though. I’ve also had major problems w/ depression while on bcps, mainly insomnia. I got much better after my hyst and found the pain relief and break from bcps made me feel about 2000% better. You probably know my endo recurred about a year later, but if you try these other things and they aren’t successful in controlling the adeno, at least you know there is a "cure" for that. In any event, we all know it’s NOT in your head (though it may wreak havoc there). As I said in "Part Un", I’m so glad you’re feeling better and have been given some relief (albeit temporary) so that you can really research your options. Your friend, MichelleA.
Response:
{{{{{Sherry}}}}}} I know these decisions aren’t easy. Isn’t it strange how opinions between doctors vary so much? I’ve had some say that there was a lot of endo and adhesions when looking at my hyst reports and others say oh not much there at all. Makes me not sure what to think. Here are some links for you. Hope they help. Let me know if you need anything. Hugs, Birgit http://www.repmed.com/html/hysterectomy.html http://www.2cowherd.net/findings/sans-uteri.html http://www.menopause-online.com/estrogens.htm
Response:
the surgeon sounds like an Ass, thank god for your GP and I’m glad you are getting honest treatment from her. So, that is where I am now. I am afraid of the depot because my little sis used it and said she turned into a nut case, and with my depression factor, I am skittish. Can it be given in pill form, does anyone know, so if I have problems with it, it isn’t in my system for 3 months?? And would the pill form work the same way? How many didn’t have good emotional reactions to it?
I think it can….when I went in to my GYN after my diagnostic, he had two recommended choices for me decide between. Depo or what he called a pill equivalent of it, Micronor. It is not exactly the same but it is a progesterone only pill, and it has it’s problems (side effects) but at least it can be stopped if necessary. Feel free to specifics I dealt with and what the phamphlet I got says about it (actually the insert will be easier to talk about…the other thing is in the middle of the damp pit of disaster)…. A lot of docs won’ prescribe it becuase it tends to irritate a lot of women not knowing when they’ll bleed but it certainly might be a viable alternative for you….. It will *not* stop your periods altogether though…despite being continous….however, I’ve found great relief overall between surgery and the meds. The emotional reactions I’ve had, are what Iw ould expect with preggers….a little snappy at times, occassionally more quick to tears. Hope this info helps… *HUGS* Tricia
