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Anyone with Adeno experience this?
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02-27-2004, 11:20 AM
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Guest
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Posts: 91
Hysterectomy: March 5th, 2004
Surgery Type: TVH
Ovaries: Kept 1 or both
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Anyone with Adeno experience this?
I'm having a TVH for adeno and fibroids next Friday (thank god!). I have been on Megace (progesterone) for about a year because of constant bleeding although the cramps were never too bad. Anyway, I stopped taking it because I hate the side effects and thought I would just suck it up and have my period last time.
Once a day, I get horrible cramps for about half an hour. HORRIBLE. Like labor. Feel like I am going to vomit they are so bad. It ends with horrible diarrhea and then I settle down to just being mildly crampy.
I'm thinking about going back to the Megace!
Does anyone else with Adenomyosis experience this?!
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02-27-2004, 11:37 AM
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Guest
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Posts: 360
Hysterectomy: March 19th, 2004
Surgery Type: TAH
Ovaries: Removed both
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Anyone with Adeno experience this?
Hi Beth:
I did not take progesterone as I don't have bleeding all the time, but I do have two weeks before my periods start have cramps like you have described. I always think oh my period is going to start today, then nothing, and this goes on for days until finally I start my period, then the cramps are even worse. I don't get diarrhea but I does make me feel like I am going to vomit or have a BM. I have has endo since 17 last time is was stage 5 and that was in 8/02 and it is already back. I have had 4 laps and the 3rd revealed that it appear from looking at the uterus I had Aden, but you can't really tell until they take the darn thing out. I also have fibroid that are the size of 2 walnuts, well that was an ultra from 1 year ago, so mostly a tad bigger. It could be possible the progesterone was working for you and not making you have the cramps. When I was on the BC pills my cramps and period were great but my mood and blood pressure was not. I wish you luck with your TVH I am still waiting for an OR room, can you believe it 4-5 week waiting period.
Tina
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02-27-2004, 11:39 AM
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Guest
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Posts: 360
Hysterectomy: March 19th, 2004
Surgery Type: TAH
Ovaries: Removed both
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Anyone with Adeno experience this?
Beth I also wanted to ask which I forgot in my previous post you said you were having an TVH, my DR said that she did not want to do a TVH with Adeno but it seems to be an option for you. I have so much endo though maybe that is why.
Tina
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02-27-2004, 12:40 PM
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HysterSister
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Posts: 359
Hysterectomy: March 25th, 2004
Surgery Type: SAH
Ovaries: Kept 1 or both
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Anyone with Adeno experience this?
Hi Beth!
I had an endoemtrial ablation done last April for bleeding problems. I was bleeding and bleeding and my DR put me on progestin, and the bleeding was worse on that. He did the ablation, and I never bled after that. After the 3rd month after the ablation (which I was feeling great), I landed in the ER with severe ab pain. Funny you should say, it feels like I am in labor. It felt like I had to bear down and have a BM, but nothing.
They did a series of tests and found nothing!! My DR suspects that I have adeno. The pain comes every month when I am due like clockwork. Each month it is getting progressively worse, and unbearable. I literally have to go on narcotic meds each month just to get through it. When I feel like that I want to rip my uterus out by myself!!!:cry:
What about your back....low low back? I call it my tailbone. It really hurts and it is continious and never leaves me. I guess they can't tell for sure I have adeno ....my DR suspects it, but he said the pathology report tells the whole story.
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02-27-2004, 12:47 PM
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Guest
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Posts: 360
Hysterectomy: March 19th, 2004
Surgery Type: TAH
Ovaries: Removed both
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Anyone with Adeno experience this?
Gosh Elizabeth, I somehow feel that no so alone when I read other post. I know what you mean with the tailbone thing. Two days before I don't know what to put the heating pad on the stomach or the back. It sometimes feel as though its just going to come out (and I wish it would). My first period after my last lap which usually one one think is suppose to be better was terrible, I was on the bathroom floor with cramps and felt as though I need to BM but could and then I started to panic. My DH got my pain med and finally about 1 hour later is settled done. Now I have cramps most of the month, and really bad right before and during. So I don't know until the get in ther but I am thinking it might be attached to my bowel of the adeno and endo are are messed up, gosh I don't know. Its to bad they don't have a way to see in there. I know they can in the laps but for some reason its seems it could be a little easier. Oh well I just wanted to say that I totally feel your pain and I hope it does get better for you.
Tina
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02-27-2004, 12:53 PM
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HysterSister
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Posts: 359
Hysterectomy: March 25th, 2004
Surgery Type: SAH
Ovaries: Kept 1 or both
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Anyone with Adeno experience this?
Hi Tina,
Thanks ...it's so sad that is takes so much away from your life. I want to live life, and the only way to do that I guess is to have the hyster. I did everything in my power to avoid it and tried several options, but none have worked. So here I am. Ready to go in 4 weeks.
I am trying to keep busy, cause I am a nervous nellie. This site has helped me soooooo much in calming my fears. When I am not doing anything and or bored the anxiety is very high. I need to be moving and or occupied.
I am scared, but yet I want it done and over with! These 4 weeks are going to drag for me.
I hope you feel better to. Are you going in for surgery too?
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02-27-2004, 01:02 PM
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Guest
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Posts: 360
Hysterectomy: March 19th, 2004
Surgery Type: TAH
Ovaries: Removed both
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Anyone with Adeno experience this?
Elizabeth:
You are so correct it has taken a lot out my life and my families. We can't even plan things right now, and I don't know about you but I pee all the time two. So if we go to a concert or movie I need to be on the end. Its just stupid. I was going to have surgery last year. I have been to 4 gyns last year as I have terrible insurance and I just didn't feel really comfortable with any of them to be cutting on me. One said I need a hyst, one could not understand what I was whining about with two little fibroids, and I said I have endo and adeno and he said still you should not have that much pain if you just had it removed, needless to say I finally switched insurance and that is hard with our history they take it as a pre-exisitng condition. I finally found this wonderful women doctor, she said I was a good canidate for a hyst. and that my quality of life should be so much better. So I am now wait until the have an OR room for me. I live in Orange County, California I guess we are short on rooms. Which bothers me I wanted to have in sometime in March as I have 50th birthday party planned for my husband on May 1. That does not give me much recovery time I might have to push back the date. I have no idea what to expect. I have had 4 laps and each time they said I'd be done for 3-4 days and I was not. So I guess it depends on what they do in there. I wish you luck with your surgery, this site is so great and everyone is so nice and helpful. Its like have really good friends to talk to. I find that some of my friends can't even imagine why I am considering this. But unless you are in the pain we are in you don't know because we look okay on the outside. Just a little daze from the pain meds. LOL.
Take Care
Tina
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02-27-2004, 01:05 PM
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Guest
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Posts: 151
Hysterectomy: January 14th, 2004
Surgery Type: TVH
Ovaries: Kept 1 or both
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Anyone with Adeno experience this?
I had a TVH on 1-14 for Adeno and prolapse. I know exactly what you are talking about. I had alot of conversations with my doc about the discomfort & pressure. I would be constipated for a few days with pain before my periods and the the other once my periods started. I am just over 6 weeks post op and have not had this happen since my surgery. I hope that you find you have the same experience since I feel so much better already. I am back to work and tired sometimes but I don't have the pain and bleeding that I had before my hyst. Good luck to all of you, make sure you rest when you get home.
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02-27-2004, 02:08 PM
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HysterSister
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Posts: 359
Hysterectomy: March 25th, 2004
Surgery Type: SAH
Ovaries: Kept 1 or both
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Anyone with Adeno experience this?
Hi Tina,
My DH birthday is May 1st! He said the best birthday present he could have is for me to be pain-free. Amen to that! My husband and kids had a concert planned ahead of time, and I was suppose to go and guess what it fell on the day I am suppose to have the surgery. Tell me that doesn't suck?? I will not push it up either. I was orginally going to go in for Feb 19th, but was not physically, emotionally and mentally prepared.
I joined curves a month ago and building my strength. Now, if I can only eat better. When I am stressed I eat poor, but I can't do that to myself now.
I don't pee alot, but just have alot of pain, either on my left or right side. It is always constant in my lower back though. It is hard to straighten it out if it has been lying in bed all night.
I am glad you found a good dr, as that is very important. I love my GYNO....plus the fact he looks so much like George Clooney! He really does!! Can't complain about that one bit!
Let me know when you get a date set, ok?
Butterfly, it is so good to hear you are doing so well!! I am so happy for you. I remember when you were a LIW, like me. Can't wait to be on the other side feeling good!
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02-27-2004, 03:26 PM
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Guest
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Posts: 2
Hysterectomy:
Ovaries: Undecided
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bleeding for 43 days!!!
This is my first post with hystersisters, and I am still hoping there will be other options other than hyster. But I am getting nervous that it will be suggested, and want to "do my research." I don't even have a diagnosis yet, but as someone else called themself, I am a nervous nelly. I am getting afraid, and could use some support and info. Here is my story:
I am doing all the right things, medically, but I would really
appreciate any info any of you have, or experience to share.
I am 46 years old, perimenopausal, and had a 12 cm. subserosal
fibroid embolized on Oct. 17, 2003. My only symptom was "can't pee"
at night, and I had no abnormal uterine bleeding before my UFE...or
until now. My "can't pee" problem did not return, and I can tell
from feeling my tummy when I lay on my back that the fibroid has
really shrunk.
But I have been bleeding since January 17!!!!!! That is 6 weeks,
with only a short reprieve with spotting, and even that was a month
ago.
Here is what I have done with my doctors so far:
My gyn put me on Megace for two weeks. Didn't work.
My gyn gave me a shot of Progesterone on Wed.(100 mg). Didn't work.
My gyn did a endo biopsy. I only talked with the nurse yesterday,
and I thought she said, "no significant tissue build up." But I had
her fax me the report, and it actually said, "No significant tissue
obtained." I am thinking that means that they didn't get any endo
tissue. It said, "Endo bx - hemmorrhagic and mucopurlent exudate.
No formed epithelial tissue fragments." I need to talk with the
doctor about this. Does anyone have a clue if this means my bx is
OK????
Today I had an MRI with contrast. I am afraid that I might have to
wait till later next week to get the report, and I am on pins and
needles.
* What is causing this bleeding?
* Has anyone ever heard of this complication from UFE?
* Is it possible I "spouted" a new, submucosal fibroid since 10/03
(the bleeding variety?)
* What can we do to make it stop???????? (Hormone therapy hasn't
worked yet)
* Has anyone bled this LONG before? (43 days and counting!!!!)
* Obviously I want to avoid a hysterectomy, which is why I chose
UAE! How can you know if it REALLY is necessary, and when it isn't?
Sorry - maybe some responses will help get me through the weekend,
until I hear from the IR or GYN.
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