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Unread 04-27-2007, 06:09 PM

Hi all I am scheduled to have my surgery on May 11, laparoscopic hysterectomy. I have been experiencing Chronic Pelvic Pain for 7 months now with one laparoscopic exploratory surgery that found nothing medically wrong. My OBGYN truly believes that this is Adenomyosis or endometriosis but of course the only way to really be 100 percent correct of adenomyosis is by having the surgery. I was wondering if anyone new how it works as far as the surgery and if they do in fact find out it is adenomyosis, what happens then? Is there something else they do? I am curious because it is scheduled to be laparoscopic and will it then turn into an abdominal hysterectomy? I am getting more and more anxious as it is two weeks away and I have so many thoughts running through my head.
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Unread 04-27-2007, 08:29 PM

I had chronic pelvic pain for years. I didn't really complain too much about it until this past fall. It really interfered with a great moment in my family's life. I got through everything however I was miserable. My u/s and cat scans were vague. My reg gyn sent me to a pelvic pain specialist. He suggested a hysterectomy for suspected adeno. My lab results did not confirm adeno. My dr. still kept to post op diagnosis as adeno. The pathology described a text book adeno utersus but didn't put it down as a diagnosis. I can tell you I have experienced so much relief. Pains I didn't even consider pain are gone. It has been so nice. For me it was one of the best decisions I have ever made.

The only way to 100% cure adeno is to remove the uterus. There is no further treatment required. I had my cervix removed just to sure.

I had a lap hyst and it went off without a hitch.

Good luck
Unread 04-27-2007, 08:59 PM

I can understand fully what you went through. It has been only 7 months and I cannot imagine going years with this pain. I was admitted to the hospital this past October 2006 and I was there for 11 days. I had everything done under the sun. 4 cat scans, 4 ultrasounds, I had exploratory laproscopic surgery, found nothing, colonoscopy, found nothing. They released me and things only got worse. Every OBGYN that I went to see was telling me they could find nothing wrong. One even told me just to have the uterus taken out without any medical reason I walked out in tears. Finally I found a new OBGYN in March. I love him and he listens to me which was the biggest aspect for me. Initially he did not think it was my uterus then he did a ultrasound himself and did not find that my uterus was enlarged. So I tried to wait three months which would have been in June but the pain is just intolerable. I went to two pain management docs hoping they would know what to take for pain but because there is no firm diagnosis, they would not treat me and one even offered me methadone but seconds later called my husband in and talked about rehab-what a dim wit I tell you. Now I am anxiously awaiting surgery. Don't know if they go in and find endo or adeno what else is entailed in "fixing me" besides the obvious of taking out my uterus. Thanks for the reply. I know what it is like to not have the quality of life you want but the pain just rules everything you do or don't do.
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Unread 04-28-2007, 05:21 AM

Adenomyosis can only be detected through pathology when your uterus is removed. I had the same chronic pain as you did and went through many tests which showed up nothing. The only thing that showed real was the pain from cramping all the time and non stop bleeding.
Unread 04-28-2007, 07:37 AM

My u/s showed a slighty enlarged uterus. However when pathology weighed my uterus it was 3x the normal weight even though it was only slightly enlarged.

Unread 05-09-2007, 07:58 PM

Hi Poohbear - good luck with the feeling better after your histo! My doc strongly suspects adeno with me as well - during a D&C in October he saw multiple polyps in the endometrial tissue (even took a polaroid). My hysto is scheduled for June 7th, and he plans to do a TVH even though he says he is 99% sure I have adeno. No way to know until the pathology report though - I don't care, I just want to stop going into shock during my periods due to the blood loss! I think how they remove the uterus depends on how extensive the symptoms are rather than the diagnosis.

Hang in there - relief is on the way.

Unread 05-09-2007, 10:05 PM

I have a similar history, too. I had a diagnostic lap done in March for suspected endo. The doctor saw no endo, but saw my uterus roughly 2X larger than normal. Like others have said, it is not possible to definitively diagnose adeno pre-hyst. . .it's a diagnosis based on pathology.

I understand also about the other tests showing nothing- I've had 4 transvaginal ultrasounds since January and all have shown a "normal sized" uterus. That's because ultrasounds don't show an enlarged/adenomyotic uterus 20-50% of the time! It's only a screening test.
Unread 05-10-2007, 03:11 AM

I had been having bleeding, clots and severe pain with periods for so many years I have lost count! I can remember very severe pain even as a youngster that seemed to get better with pregnancies and then gradually get worse again. I never connected the severe pain during periods with adenomyosis, I didn't even know what it was and thought all women suffered similar pain, severe cramps and pain down the thighs front and back. I took painkillers and lived with it.

Finally after having my hysterectomy for bleeding issues and prolapse they find adeno in my pathology report and it is then I find out what it is and the likely effect it had on me, and to think I suffered for so many many years ignorant as to why. They also found abnormal cells in my cervix that made me very very glad it was all gone!
Unread 05-10-2007, 07:53 AM

Hi! I had a diagnostic lap in Aug. '06 and my dr found very little endo. I had pains for 11 years with my period and when I would ovulate. The turning point for me was when I was having relations w/ my DH and I about flew off of the bed in pain. I was put on bc and it made me sick, but we were in the middle of moving so I put up with it. Last May I found a new dr and we changed my bc. It didn't help. That's why I consented to the lap. After he found basically nothing, I was put on Zoladex shots once a month. Finally, I had relief! Yes, I was in "chemical" menopause! Hot flashes, night sweats and mood swings! But, it was so much better than pain!!! I had my LSH/BSO in Feb and am on HRT at 31 yrs. old, but I can enjoy my life and family!

My pathology report did not show adeno, but my dr thinks the Zoladex helped clean-up everything. Sometimes, I wonder if I did the right thing. Surgery is a big step. But, I can honestly say I feel great! I hope my experience can ease your mind a little! It's not in your head! Talk w/your dr about your concerns. Good luck!
Unread 05-10-2007, 08:08 AM
Thanks for all of your feedback and encouraging words!

To all the princesses out there who have responded:
Thank you for taking the time to respond.

Rodswife; I can relate 100 percent with you on having intimate relations as well. I have not been intimate with my DH for almost two months because it is just way too painful. It has been hard on him not having the relief and/or feeling connected with me in that way but I just cannot seem to find a comfortable position or even try to pretend that I can tolerate it. My OB also put me on bc and I was so sick to my stomach. I was taking phenergan suppositories just to deal with the naseau. That brought on even more stomach cramps until my OB told me it was okay to insert the suppositories vagninally and what a difference. Thank God for that medication! I am still on bc and I the naseau is not bad but surprisingly I still feel sick and it has been two months of being on the bc. I am so glad that you were able to find relief somehow some way. I am so excited to get the quality of my life back as I know you were too. It was a very difficult decision, the hysterectomy, because I did want more children but I cannot go on like this. It is wearing me down. On top of it all, I got my period unexpectedly last Thursday and I thought I would not have to go through it again due to the bc I am on, Seasonale where you only get a period a season. But being around my sister in law who just gave birth brought on Aunt Flo. The pain that I have felt through this last visit from her just made me thankful that I made the decision to have the surgery. Relief will be here for me soon. Tomorrow is the day and I am anxious but excited. Good luck to you and thanks for your support.

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