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Surgery 5/1: possible adeno and endo Surgery 5/1: possible adeno and endo

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  #1  
Unread 04-25-2012, 07:49 PM
Surgery 5/1: possible adeno and endo

I was told I may have adenomyosis because of pevic cramping. I also have bad endomterriosis. I would love to know any feedback.
I had surgery for endo removal (terrible doc) and removed a tube and ovary that just fine. I am going to a EXPERIENCED doc. I feel ok, but haven't had sex in over 4 months. I am tempted to do it just to see if bad pain returns. I donot have heavy periods at all. Just one day had lower back pain, felt like a uti and some cramping. Need advice...
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  #2  
Unread 04-25-2012, 08:32 PM
Re: Women that have adenomyosis HELP!

Hi I am in similar situation as you found out i had endo at 18 have been dealing with a lot more problems since. I to didn't have the best doctor's before. I finally found one the end of last year who did a exploratory lap surgery and found severe endo he took off what he found and told me to wait a few months to give body time to completely heal to see if i felt any better I have only gotten worse.. Went to him last week and found out that I to have adenomyosis I have horrible pains in abdomen also have a lot of painful pressure like feelings in vagina. He told me there were two options for me either I could try anti- inflammatory meds for a few months or have a hyster but since I was having such bad pain and being so uncomfortable that he wasn't sure if the meds would help anyway. I am only 29 and currently waiting to be scheduled for my hyster. Im very nervous about the surgery but I am confident in my doctor. I hope that they can figure out something for you because i know what its like and its not a way of life. I am just hoping that i may find a sense of relief through surgery.
  #3  
Unread 04-25-2012, 10:08 PM
Re: Women that have adenomyosis HELP!

I had my hysterectomy April 4, had severe adenomyosis and a touch of endo, fibroids and cysts. was able to keep both ovaries. Feel free ask any questions you have. I'm recovering from surgery and we are told to rest a lot, so I chat on hystersisters on my rest time.
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  #4  
Unread 04-25-2012, 10:23 PM
Re: Women that have adenomyosis HELP!

I want to thank you both for replies.
Cath= I will tell you somethng that happened to me that may give you hope. I was in really bad pain after surgery, vaginal pain, I thought I might even have instestitial cystitus. I was a mad women researching. I went to a urogynocolist. She prescibed diazapam for 1 week and a half. It is a anxiety/muscle relaxer can become addictive. I slept for the first time in months. I have never had the same pain again. So yes, I do think to try antiinflammatory or even that. Sometimes I was told our pelvis closes and tightens. It needs to relax.

Despite that I still feel wierd down there and abdomen. That is why I am seeking (Dr Lyons) not sure if I can discuss doctors.

For the second gal, how has your recover been? I read that they only really know if it is adenomyosis once it is out of body Were they able to confirm that. I am scared that it isn't the adenomyosis, or endometriosis, and it's something called pelvic floor disfunction. Then I would have made the situation worse. I would love to continue to chat with you both. I have my apt this coming wednesday, he is a endometriosis specialist among other things so i am looking forward to finally speaking to someone that is knowledgable (I hope )
  #5  
Unread 04-25-2012, 10:32 PM
Re: Women that have adenomyosis HELP!

My doctor did laparoscopic surgery on me 8 weeks before my hysterectomy due to ultrasound findings she was concerned about and all my symptoms . That is when she saw the adenomyosis. She said she could not 100% diagnose it until pathology, but she showed me pictures, and she told me she knew that was what it was. the pathology report confirmed it.
Recovery has been slow and steady. I don't want to scare you!! I'm getting by just dreaming of my future life with no pain or bleeding. Will make all this recovery stuff well worth it.
Keep researching. The more you know before your appointment the better off you'll be.
  #6  
Unread 04-26-2012, 01:10 AM
Re: Women that have adenomyosis HELP!

  Quote:
Originally Posted by bavy View Post
I was told I may have adenomyosis because of pevic cramping. I also have bad endomterriosis. I would love to know any feedback.
I had surgery for endo removal (terrible doc) and removed a tube and ovary that just fine. I am going to a EXPERIENCED doc. I feel ok, but haven't had sex in over 4 months. I am tempted to do it just to see if bad pain returns. I donot have heavy periods at all. Just one day had lower back pain, felt like a uti and some cramping. Need advice...
Hello! I have a pretty long history of issues and 8 years ago my gyn indicated she thought I had adenomyosis, but I was not ready for a hysterectomy.

A year ago my uterus was the size of a 12 week pregnancy and then just about two months ago I went to my gyn due to major issues...my uterus was the size of a 16 week pregnancy. He thought for sure fibroids, but there were none. He is confident it is adenomyosis based on the ultrasound and history. I also have a golfball size cyst on my left ovary.

Some of my symptoms include, enlarged abdomen, pain during periods, ovulation, sex, and exercise. Bleeding with all of the above and bladder leakage with coughing too hard, laughing too hard, and jumping of any kind...like jumping jacks. Also, my periods have extended to about 10 days a month.

All of this leaves me having to be very cautious, it can be very embarrassing and makes for a very minimal intimate time with me and my husband, because he is afraid I will hurt and I am afraid I will hurt.

I am scheduled for a total abdominal hysterectomy and ovaries removal on May 30th.

Best of wishes with your surgery.
  #7  
Unread 04-26-2012, 04:33 PM
Re: Women that have adenomyosis HELP!

Everyone that has posted here seem to have same problems as I do. I also have a lot of digestive issues they said can be as a result of the adenomyosis. I am keeping my fingers that many of my issues can be addressed by one surgery. I keep telling myself that the pain of recovery can not be much worse than the pain that i am in everyday right now.
  #8  
Unread 04-26-2012, 08:41 PM
Re: Women that have adenomyosis HELP!

The post op pain is a bit different. It's manageable with meds though. The huge difference is pre op we hurt, but can still force ourselves to do things. Post op we have restrictions so we don't cause damage requiring future repair surgery. Some days the pain meds work so well we feel like doing things, bt we aren't allowed.I want no future surgeries, sp I am takin my full 6-8 weeks of recovery time very serious and not doing anything at all. I'd rather sit at home and take it easy for 2 months than have complications down the road. I spent the past 3 years pre op in such disabling pain that quality of life was almost nothing. I am so looking forward to a healthy normal life!!
  #9  
Unread 04-27-2012, 07:20 AM
Re: Women that have adenomyosis HELP!

Thank you, I will only be off from work for 2 weeks. So I am hoping for a speedy recovery. Right now my pain is not managed well with medication so hopefully it is around the same at least after 2 weeks. I will be lite duty at work and follow post op restrictions. I too am looking forward to a "normal life" hopefully with a lot less pain.
  #10  
Unread 04-27-2012, 01:43 PM
Re: Women that have adenomyosis HELP!

Adenomyosis with cyst in one fallopian tube. I have been experiencing low back pain as well as general back pain for 6+ years. I have not had sex in years, but when I did....I did experience pain. I did not relate it potential fibroids. The doctor always told me my paps were negative and my pelvic exams were great. So since the diagnosis my doctor was conservative about treatment which equals nothing. Lucky for me I work in the health care field and understand the reports, labs and etc.

So what I have done to try to alleviate the problems til I have consultation and surgery: 1. Change my diet. Some things I ate caused more bleeding. 2. Excercise when I am not too tired. 3. Take iron tablets 4. Naprosyn for the pain (ibuprofen did not work for me).

Results: I don't bleed for 4 days extremely heavy. Now I am down to a day in half to 2 and half days. The naprosyn controls the pain.

This may not work for everyone. My fibroids are multiple and 3-4cm. I know it is not going to resolve the problem but it will alleviate it til I have my consultation and potential surgery. I will you all luck in what ever you decide to do. I am here if you have any questions.
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