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Hysterectomy for Adenomyosis? Hysterectomy for Adenomyosis?

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  #1  
Unread 05-08-2003, 08:23 PM
Hysterectomy for Adenomyosis?

I am new to this site and have mostly been contemplating on having endometrial ablation (Novasure seemed like the best). I have had heavy bleeding with flooding and lots of clots during my period for about 3 years now. I have had all the tests, biopsy, etc. I had a D & C with hysteroscopy in Oct. 2002 only to have gotten worse with each period since. I just had an MRI done about 1 week ago as my ultrasound showed the possibility of adenomyosis. Also showed cysts on my right ovary. The MRI came back that I do have adenomyosis. It showed two focal areas, not diffuse adenomyosis. My doctor did the MRI to rule out adenomyosis because she said that if I did have this, ablation would not be an option. I think that the next step is probably a hysterectomy. I was wondering if anyone else here has adenomyosis and what options they have tried and if the outcome is eventually a hysterectomy. At this point I want relief and not dreading each month when my period comes and just wipes me out. Oh I forgot to mention that I am 39 years old and have 4 children and was not planning on anymore. If anyone has been through this please give me some suggestions.
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  #2  
Unread 05-10-2003, 12:14 PM
Hysterectomy for Adenomyosis?

Hi Psouza,

You'll find that many ladies here have (or had) adenomyosis, although not all knew they had it prior to having a hyst. Adeno is very hard to diagnose ... an MRI seems to be one of the best ways, but it isn't always done since the test is farily expensive.

I had adeno, but didn't know that until the pathology results came back after my hyst. I had a history of fibroids and had my hyst primarily due to sever stage 4 endo.

There is no "cure" for adeno other than a hyst, based on everything I've read about adeno. As for other treatments for adeno, I'm actually not too sure. Hopefully some other ladies will be along who may have been diagnosed with adeno and tried other treatments besides a hyst.

Best of luck to you, whatever you decide. We're here to provide support, any way we can.

Beth
  #3  
Unread 05-10-2003, 02:01 PM
Hysterectomy for Adenomyosis?

I had a LAVH a little over 2 weeks ago because my doctor suspected adenomyosis. Before that I tried oral BCP and oral progesterone. Neither one of these helped me. I too was interested in other interventions before agreeing to a hyst but I wasn't even considered for ablation or D&C because my uterus was severely retroflexed and retroverted. Because of this position, I was told that I was at too big of a risk of my uterus being punctured and then needing an emergency hyst. I was told I had only 2 options; put up with the heavy periods each month or a hyst. Since my iron reserve level was just about non-existent from all the heavy periods, I opted for the hyst. Turns out I did the right thing, the pathology report came back positive for adenomyosis. Good luck with whatever you decide.
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  #4  
Unread 05-11-2003, 08:24 PM
JUST DIAGNOSED WITH ADENOMYOSIS

I am new to this website. I will be 41yo in June. I was just diagnosed this past week with Adenomyosis. I was told by my doctor that a hysterectomy would be the only solution for this condition. I am not able to try certain alternatives that he mentioned. I have been noticing different changes in my monthly cycle for several months now. I have been having heavy bleeding off and on. I had my very first bad episode of flooding one night a week ago. I knew that this was not normal along with the other symptoms that I now have. This is what made me go on to the doctor to be checked. I am a little anxious and need support just as Psouza does and probably many others also. Any help or support would be greatly appreciated. Thank You.
  #5  
Unread 05-11-2003, 08:35 PM
Hysterectomy for Adenomyosis?

Hi Penny,

Welcome to Hystersisters!

I'm sorry to hear that you have been diagnosed with adenomyosis and that a hysterectomy has been recommended. Everything I have read also indicates that a hyst is the only "cure" for adeno. Here is a link to the Resources area of Hystersisters where you'll find links to sources of information about adenomyosis. Be sure to scroll down through all the posts on this thread to check out the information about adeno.

https://www.hystersisters.com/vb2/sho...threadid=76157

How did your gyn make the diagnosis of adeno? It's often very difficult to determine pre-hyst if adeno really is the problem. Was an MRI done?

Before you make the hyst decision, I highly recommend that you get a second opinion just to confirm the probable diagnosis and treatment options. Whatever you decide, we'll do our best to provide support.

Beth
  #6  
Unread 05-11-2003, 09:54 PM
ADENOMYOSIS

Beth, Thank you for you quick response! I had a cystoscope (?) done. I think that is the name of it. I am not sure if I will get the 2nd opinion. We are trying to decide. This doctor has treated me since I was 18yo. My husband spoke with two other doctors that he knows personally whom both stated how excellent my doctor is and the best. I have also spoken with a couple of friends who have had this done without a 2nd opinion. I appreciate your support so very much. I am so thankful that I have found this website. I am about to go to bed, but I would like for you to talk to me more. Thank You, Beth! God Bless!
  #7  
Unread 05-11-2003, 10:37 PM
Hysterectomy for Adenomyosis?

Thank you all for all the helpful info. It really does help to have others who have been there to answer questions. I really think that I am probably going to have a hyst. I have an appointment for a second opinion on May 20 but from what I have been reading it looks like the hyst. is the answer.

I am really nervous after reading about the pain and recovery time though. I was thinking that I could return to work after 2 weeks if I had a vaginal hyst. but I can see by all the reading I've done on this site that the earliest I probably could go back would be 4-6 weeks. I am also nervous about the post-op pain because I don't tolerate pain meds that well. ( I get really nauseous and sick to my stomach). I had a kidney stone about 5 years ago (worst pain I ever had in my life) and was on a morphine pump. It helped the pain but all the meds I took made me sick for like a month or two after. Lost my appetite and lost like 20 pounds -didn't mind the weight loss but I felt horrible. I have a bad stomach to begin with (have a hiatus hernia with esophageal reflux) so that's probably the problem. Does everyone have terrible post-op pain?

Penny P sounds just like I used to be before I had the D & C. I had bad periods like every other to once every three months with the flooding and large clots. But now since the D & C every month is terrible and now my blood is low and the exhaustion is killing me. I am losing time at work now just about every month because I am so wiped out. I can't take iron because I get terrible stomach pain from it. It's a losing battle and the quality of life stinks because I can't plan anything that might be close to my period and when I do have it, I am afraid to leave the house because of the flooding. I do not have the pain that others have talked about (Thank God). Mostly just bad cramps first 3-4 days but tolerable and helped with Tylenol. I have read a lot of stories here about people a lot worse off than I and am amazed at their courage and strength.

Thanks to everyone who has responded and Penny P those sites are very helpful that Beth gave you links to! Patty
  #8  
Unread 05-11-2003, 11:29 PM
adenomyosis & Hyster

Hi Psouza

I also had a hysterectomy due to adenomyosis. I also had dysplasia and numerous cyst. The adenomyosis caused several problems for me. I had it for about 4 years I would guess. Between the very heavy bleeding, gushing, clots, and prolonged periods and cramps that had me in tears. I was feeling pretty bad. I got anemic as well. So bad that a slight tough to my skin would leave awful bruises. Slept all the time and had no energy.

I went through many of the same treaments as you and more then once. It was a long road of disapointment. Juist to have the same problem and had gotten worse as time went on.

Get all your information that you can. Your on the right road with the care and testing your Dr did. Do what is best for you and your health Take care of yourself and keep everyone here posted. It is a great place for all us women to share, , give and get support..

Sending good thoughts
Michele
  #9  
Unread 05-12-2003, 09:32 PM
You've joined the adenomyosis club

Hey Psouza,

As you can see, we've all had different experiences. I was diagnosed with adenomyosis before my surgery, but it was diffuse so my only alternative was to have a hyst. I had LSH though, so I was able to go back to work after 2 weeks (could have gone sooner if not for visits from relatives and a camping trip). I had very little pain.

Best of luck,

Evelyn
  #10  
Unread 05-13-2003, 05:52 PM
Hysterectomy for Adenomyosis?

Thank you Evelyn for responding. It is so good to see that there is hope that surgery might not be so bad. I think this was the first post I have read that the post-op was positive. I was so nervous about it that I am going to see a Dr. tomorrow who does the Novasure endometrial ablation. My adenomyosis doesn't seem to be diffuse. The MRI report says that there are two focal areas and it says that it doesn't suggest diffuse adenomyosis. I am going to see what this Dr. says about the success rate of this fairly new treatment with adenomyosis. If it doesn't look too promising I will go ahead with the hyst. and I will hope that I recover as well and as quickly as you did. I feel a lot better about surgery now than before I read your post! I know that everyone is different but at least I know that there is hope that it might not be as horrible as I thought.
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