Adenomyosis and Endo: Partial Hysterectomy for the Adeno?

Hello -- just wondering if anyone here has had a hysterectomy or partial hysterectomy because of adenomyosis? I have severe endo + ade; had surgery a year and a half ago to remove most endo growths and one ovary; the endo growths were so severe that my right kidney became impaired and lost function. My surgeon commented that I would probably benefit from removing my uterus, since it's the size of a 14 week pregnancy (about 2-2.5 times normal size). This year the pain has come back and now it seems like the uterus is pressing on my intestines -- and some liquid is collecting among the intestines, causing additional pain. Another doctor suggested removing the uterus.

I am 36 and just not emotionally ready for that. Going into surgery a year and half ago, I was less terrified at the prospect of potential cancer than having hysterectomy; I know that is irrational, but there it is.

Has anyone here had hysterectomy for adenomyosis? What were the reasons? How are you coping psychologically?

I don't know why it's so hard for me. ???

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Originally Posted by jagusia Has anyone here had hysterectomy for adenomyosis? What were the reasons? How are you coping psychologically? I don't know why it's so hard for me. ???

First, it is hard because it is a very difficult and personal decision and because you are young and experiencing all of this.

I am going in next Wednesday for adeno. I am fully aware adeno can only be 100% diagnosed after a hysterectomy but according to the surgeon, every symptom and response to failed treatments indicates it. They also suspect endo, but this will be the first time anyone has looked.

My reasons for going through with this:
1. I have dealt with this pain for 10 years (since my mid-thirties like you)
2. For the last 2 years it has become more frequent, lasting longer, and is debilitating
3. Missing work
4. Heavy narcotics can't even make me comfortable
5. After sex the pain sets in within seconds; no man wants to see you crying & agonizing in pain after sex
6. Now pain occurs during sex and I often can't continue; sure challenges a relationship
7. Trips to the ER and only dialudid or morphine can start to take the edge off of it, but the pain returns before I am allowed another dose

You can see that all of this has severely ruined my quality of life. Psychologically I am ready for this...even excited to know that this pain will likely come to an end next week. It has been a long journey of 8 doctors, but I finally have an incredible doc who hates what they see in my record as far as all the treatments, shuffling around, and referrals for so many tests, procedures, and other specialists when all signs point to adeno (previous docs even wrote adeno in my chart) and my known fibroids.

I sincerely hope I am this content after recovery. I know to expect pain and possibly hurdles in recovery, but the pain will be a healing pain and not the horrific episodes I have suffered with for over 10 years now.

Thank you! Rationally I am coming around to the decision, my emotions just need to catch up. Best of luck to you!

I had one in December last year for endo and aden, it was combined with removal of the endo and a bowel resection. My problems were all diagnosed from an MRI which showed the enlarged uterus as well as the endo which had invaded the bowel.
Emotionally my main reaction was relief to know that my problems for the last 20+ years were not "all in my head" and to know that something could be done even if it was a hysterectomy which I hadn't expected. I don't have an emotional attachment to my uterus though which helps, in fact my son was more upset as he still wants a little sister.
My surgery confirmed stage IV endo, aden and that a bowel resection was needed; luckily the colorectal surgeon had already been booked in on the evidence in the MRI so it all got done at once. My uterus was putting pressure on my bowel and my bladder and since surgery all that is working rather better than it has in quite some time, not perfect yet, but definitely no regrets!

Thanks for this! I do not have kids, and even though it is unlikely I would have had any, removing the uterus is very final in that respect.
Still -- good to know it worked well for you. And I know what you mean about it all not "being in your head"!

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Originally Posted by jagusia Thanks for this! I do not have kids, and even though it is unlikely I would have had any, removing the uterus is very final in that respect. Still -- good to know it worked well for you. And I know what you mean about it all not "being in your head"!

It's a hard decision to make whether you've had kids or not and everyone is wired differently on an emotional level. For me I count myself lucky that I did have the boys, going by what they found in there it wouldn't have been surprising if I couldn't have managed that. I'd had time to come to terms with no more babies as my husband and I had already discussed all that many years ago and 2 was our limit. He had got the snip when youngest was a year old as well so the likelihood of another was very low just from that.
What made it super obvious to me that I didn't actually want another was when I stopped having periods in the months leading up to surgery and my stress levels soared when the possibility of pregnancy was raised; a negative test was such a huge relief that it confirmed the hysterectomy was the right choice for me.