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is this pain from adenomyosis or not?
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01-21-2007, 09:34 PM
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Guest
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Posts: 16
Hysterectomy:
Ovaries: Kept 1 or both
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is this pain from adenomyosis or not?
How do I know if the pain that I have is actually from adenomyosis? I have had a laproscopy and there is no enod, and after and endometrial ablation, the pressure and pain left, but now is back. W
Without doing an mri, my gyn. says i have adeno. No other explanation, just that the only way to fix it is a hysterectomy. But I have had large ovarian cysts as well, what if the pain is from them and I have my uterus removed for nothing? I am so confused, and not sure where to turn. And now the pain is about 3 weeks out of four. At least I have no bleeding anymore, which is a blessing. If anyone out there could share their experience with me, it would be so helpful.
thanks for listiening
elaine
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01-21-2007, 09:48 PM
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Guest
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Posts: 34
Hysterectomy: December 14th, 2006
Surgery Type: LAVH
Ovaries: Kept 1 or both
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is this pain from adenomyosis or not?
Elaine, I had extreme bleeding and pain for years. I had many tests and many diagnosis ans none of the treatments worked. My last doc said that it could be adeno but you can only confirm via hysterectomy. I have suffered on and off for 15 years. I did not do ablation because research says that it won't help the pain part. I went for the hyst. My report came back normal (some minor abnormalities noted but overall normal). I thought...did I do this for nothing? At 5 w post op my answer is definately NO. I feel so much better and have gotten to be with my husband which I was unable to do for 6 months prior to the hyst due to bleeding. I don't care what a report says...I am out of misery and on to a good place.
I worried preop if all of the bad things would happen to me. I decided that at the worst I would exchange one problem for another but there was also a chance that everything would be fine.
You never know if you made the right decision until you are on the other side. Good Luck and God Bless!
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01-21-2007, 09:50 PM
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Guest
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Posts: 37
Hysterectomy: December 15th, 2006
Surgery Type: LAVH
Ovaries: Kept 1 or both
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is this pain from adenomyosis or not?
Oh I know how you feel - it's very confusing. I had laparoscopy for endo 18 months ago, but the pain returned very quickly. My surgeon said the only way she would really know what was going on was when she got inside. She said what would she do if she didn't find endo? Continue with the hysterectomy?
The only way (so I'm told) to diagnose Adenomyosis for certain is with a biopsy of the uterus, which you can't do unless you take it out. And the only cure for it is a hysterectomy. So you can't really know whether or not you have it before. There are several useful links on this site that helped me feel sure I had Adenomyosis - have a look at them.
My biopsy revealed massive Adeno, and my surgeon said therefore horrific pain (what a relief to know I hadn't been somehow making it up). But for me it was a gamble until that point (the whole hysterectomy thing).. The only thing I can say for sure is that for me, I feel WAY better even just 5 weeks afterwards.
Don't rush into a Hysterectomy if you are not sure - if you want more/some kids etc... it's very final!
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01-21-2007, 10:18 PM
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Guest
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Posts: 406
Hysterectomy: April 28th, 2006
Surgery Type: LSH
Ovaries: Kept 1 or both
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is this pain from adenomyosis or not?
Elaine,
I am sorry the pain has returned. I remember all to well how horrid it was. I had suspected adeno, and very heavy, irregular bleeding. I went ahead with the hydrothermal ablation in hopes that at least the bleeding would stop. I was fine for about 2 months afterward, but then by the 3rd month my spotting turned into heavier bleeding and I was bleeding as heavy if not worse then before the ablation. The only thing the ablaton seemed to do was regulate my cycle more. The pain for me was actually worse I think after the ablation. I waited several months, mostly trying to decide what to do. I was afraid of the possible complications, and was very confused. Funny, when growing up and having awful periods, I always used to say just rip it out. but when push came to shove and it was facing me, it was a very difficult decision to make. I was afraid that I would be lying around afterward wishing I had just dealt with the pain and bleeding. But, the pain got worse and, I grew tired of being curled up on the sofa, in constant pain, and I also got tired of putting on the front that everything was fine, gritting my teeth and carrying on. So I went back to see my Dr. and we decided that this was my only option. He told me the constant cramping equated to being in labor all month. I, like you, had pain at a minimum 3 weeks out of a month. It just wasn't living to me any more.
I have never regretted for a second having made the choice to have the surgery. I felt better in the recovery room. The awful cramping was gone. although I was uncomfortable from the surgery, I was amazed that I could tell a difference so quickly.
I don't think there is any other way to PROVE it is adeno then with a biopsy, but my Dr. was pretty sure from what he saw on ultrasound, that, that was what we were dealing with.
Take your time, research all options, and make the best decision for you. It is not an easy one to make, and no one can tell you what is best for you, except you.
All your hyster sisters are here to help out anyway we can,before and after your surgery if that is what you choose. Feel free to contact me if you want more info. Sending you another big cyber
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01-22-2007, 06:21 AM
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Guest
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Posts: 16
Hysterectomy:
Ovaries: Kept 1 or both
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is this pain from adenomyosis or not?
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Quote: |
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Originally Posted by golftaxi
Elaine,
I am sorry the pain has returned. I remember all to well how horrid it was. I had suspected adeno, and very heavy, irregular bleeding. I went ahead with the hydrothermal ablation in hopes that at least the bleeding would stop. I was fine for about 2 months afterward, but then by the 3rd month my spotting turned into heavier bleeding and I was bleeding as heavy if not worse then before the ablation. The only thing the ablaton seemed to do was regulate my cycle more. The pain for me was actually worse I think after the ablation. I waited several months, mostly trying to decide what to do. I was afraid of the possible complications, and was very confused. Funny, when growing up and having awful periods, I always used to say just rip it out. but when push came to shove and it was facing me, it was a very difficult decision to make. I was afraid that I would be lying around afterward wishing I had just dealt with the pain and bleeding. But, the pain got worse and, I grew tired of being curled up on the sofa, in constant pain, and I also got tired of putting on the front that everything was fine, gritting my teeth and carrying on. So I went back to see my Dr. and we decided that this was my only option. He told me the constant cramping equated to being in labor all month. I, like you, had pain at a minimum 3 weeks out of a month. It just wasn't living to me any more.
I have never regretted for a second having made the choice to have the surgery. I felt better in the recovery room. The awful cramping was gone. although I was uncomfortable from the surgery, I was amazed that I could tell a difference so quickly.
I don't think there is any other way to PROVE it is adeno then with a biopsy, but my Dr. was pretty sure from what he saw on ultrasound, that, that was what we were dealing with.
Take your time, research all options, and make the best decision for you. It is not an easy one to make, and no one can tell you what is best for you, except you.
All your hyster sisters are here to help out anyway we can,before and after your surgery if that is what you choose. Feel free to contact me if you want more info. Sending you another big cyber
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just curious, did you have ovarian cyst pain also before your diagnosis of adeno? My Pulling pain has returned, and i am sure another cyst is back. I had unreal pulling pain all summer and they found a 5x6 ovarian cyst. Then on the next ultrasound it had gone. Before you lost your ovary, had you experienced that? I think i will go back to my gyn. Thanks for your replys
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01-22-2007, 08:26 AM
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HysterSister
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Posts: 320
Hysterectomy: February 7th, 2007
Surgery Type: LSH
Ovaries: Removed both
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is this pain from adenomyosis or not?
I had a laparscopy in August. My Dr. thought I would be filled with endo. After everything was over we found out I only have endo on the back of my ovaries, but I might have adeno in my uterus. The shooting pains in my sides 3 weeks out of 4 a month are from that. Everything else looks healthy and pink! Go figure! I am currently on Zolodex shots-which are wonderful for me! I can have sex and it doesn't even hurt! For the first time in a long time I feel pretty much normal.(Except for the hot flashes and insomnia) My LSH is in about 2 weeks and I am so excited! Good lunk! E
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01-22-2007, 08:50 AM
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Guest
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Posts: 406
Hysterectomy: April 28th, 2006
Surgery Type: LSH
Ovaries: Kept 1 or both
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is this pain from adenomyosis or not?
Elaine---- Ok I'll try not to make this a novel, here goes!
A long time ago, 21 years to be exact, I had a dermoid cyst on my left ovary. It was discovered when I had a laparoscopy for the pelvic pain I was having and they found endo at that time. The Dr. didn't remove it then because it was so small and he thought it was just a follicular cyst. At my 6 week check up the whole ovary was enlarged. From what I can remember of it, I had this twisting, kind of pulling pain. So had the open abdominal surgery to have it removed. He was able to save my left ovary, although it was very small. I was on bcp almost constantly from that time on. Only off to get pregnant. (When I had my c-sect in '91, they found a dermoid on the right. Figured it was there all along and the pregnancy hormones made it grow. Different Dr at the time said they often form on both sides.) It (the bcp) worked well for me and kept everything in check. so I thought. Well I had knee surgery in Feb 2005, developed a DVT about 12 days later, had to come off the bcp, and that is when all my trouble returned.
I was very surprised that they found the dermoid on the right. My left one is to quote " just a sliver". That dermoid had grown to 5-6 cm, in 6 months, as it wasn't there when I had the ablation/tubal. Unfortunately I can't tell you if I was having pain from that. I just hurt all over, with very severe cramping. Just walking hurt, the vibrations from my feet hitting the ground was enough to double me over some days. Do give your Dr. a call. He/she can help you sort out this whole issue. The decision is ultimately yours though. My Dr. specializes in ultrasounds, and was positive what he was looking at was adeno, but he said you wouldn't know definitely until after the pathology study. He saved the left one because I was only 41 at the time, and he was hoping, although rather doubtful, that it would function. Well it took about 3 months but it has kicked back in. I'll take whatever I can get, for as long as I can get it!!
So it did turn out to be a novel...sorry. Good luck and feel free to ask anything you can think of.
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01-22-2007, 02:52 PM
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Guest
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Posts: 16
Hysterectomy:
Ovaries: Kept 1 or both
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is this pain from adenomyosis or not?
Thanks for your reply, I was able to get thru to my gyn. today, and will see him in 2 weeks. Kind of funny, he actually answered the phone, I guess with our weather up here, the receptionist was late. I know what you mean when you say you are not sure of where the pain is coming from....it is hard to tell. Up to a few months ago i was "working" thru the pain, since we thought it was the psoas muscle. When i look back it was so obvious that it was the ovaries and uterus. I guess i was in denial since I was one of those fortunate gals that after having my ablation done, I have had absolutely no bleeding nor back pain. At least its only the cramps and pain that has returned and not the bleeding. I was ready to do something drastic back then... Until my gyn. mentioned adeno. and until i found this site, I was so depressed not knowing what was happening. It is so helpful knowing that I am not alone, and not crazy.
I am 47 and hope to keep my ovaries, but if they keep forming cysts, i am not sure about it.
thanks for sharing!
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01-22-2007, 07:07 PM
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Guest
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Posts: 409
Hysterectomy: December 7th, 2006
Ovaries: Removed both
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is this pain from adenomyosis or not?
It's hard to tell. I had adeno, fibroids, and endo and it was hard to tell which was causing each twinge of pain. I think it was a combination. I did have an endometrioma removed 6 months before my hyst and it didn't help much with the pain.
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