Scheduled dVH/RALH Questions for sisters who had adenomyosis | HysterSisters
HysterSisters Hysterectomy Support and Information
Advertising Info HysterSisters Hysterectomy Support Tutorial

Go Back   Hysterectomy HysterSisters > Hysterectomy Support Posts > Preparing for Hysterectomy (pre hysterectomy) is a massive online community with over 475,000 members and over 5 million posts.

Our community is filled with women who have been through the Hysterectomy experience providing both advice and support from our active members and moderators. is located at 111 Peter St, Toronto, Canada, M5V2H1 and is part of the VerticalScope network of websites.

With free registration, you can ask and answer questions in our HYSTERECTOMY forum community, get our FREE BOOKLET, access Hysterectomy Checkpoints and more.

You are not alone. The HysterSisters are here for you. Join us today!
join HysterSisters for hysterectomy resources and support

Questions for sisters who had adenomyosis Questions for sisters who had adenomyosis

Thread Tools
Unread 03-17-2012, 10:37 AM
Questions for sisters who had adenomyosis

If your pathology report proved adenomyosis was the source of your problems then I'd like to know how quickly your symptoms progressed. My symptoms aren't yet nearly as bad as some of you ladies, though they are bad enough that it affects my family. My doctor suspects adenomyosis due to my enlarged uterus, heavy periods, and cramping even when I'm not bleeding. And everything I've read about adenmyosis says it's only going to get worse. I'm just curious as to how quickly it progresses.

My periods got very heavy after the birth of my first baby. 2 years later after the birth of my second, my periods were even heavier and I had cramps that sometimes left me immobile on the floor, shaking from the pain. 2 years later after baby number 3, my periods were super heavy with a week of spotting and cramping before I even start. While my cramps are bad, they are a little better than they were after my 2nd baby. But the new symptoms I have after this 3rd baby is for the past year I've had cramps almost daily, even when I'm not on my period and I've had severe gas pains that are referred in my shoulder and neck. I also have bladder problems since this 3rd baby. My doctor won't promise the hyster will help that. She said that my bladder woes could just be from having 3 pregnancies, but I think it's because of my enlarged uterus. I feel like my bladder can't hold as much as it used to but I have trouble emptying it. I have to lean forward when I'm on the toilet every time I tinkle (just like I had to when I was pregnant) and I think that it's due to the enlarged uterus (12 cm).

My last baby is just a little over 2 years old, so it does seem as though it's progressing at a pretty steady pace. For those of you that let this drag out, who quickly did things go from bad to oh my gosh get this uterus out?
Sponsored Links
Unread 03-17-2012, 11:07 AM
Re: Questions for sisters who had adenomyosis

No one suspected adeno and I found out from my path report. I don't know how many of my symptoms came from it or the fibroids or the adhesions. I know that I started having problems as a teen and I'm 46 now.

I had pretty severe pain but my real problem was bleeding. My bladder is doing better but still seems to not hold as much as it should. Who know, maybe age, maybe it just is small. No more stress incontinence. No more bowel pains. No more cramps.

It really is up to you what is life altering problems and what is not. Every one has different experience and pain/hassle tolerance.

After years of gradual decline, I forgot what it was like to feel good. I am amazed how much better I feel and I still have some minor tenderness from my surgery. I know that when I reach my one year anniversary I will feel so much better.

It is up to you to determine your path. Most of the time you can schedule surgery relatively quickly so when you reach the point you feel you must, you can schedule then.
Unread 03-17-2012, 11:58 AM
Re: Questions for sisters who had adenomyosis

I don't know if adeno was found or not. I didn't ask. I almost didn't care what my path report showed. I am just elated that that life sucking, 12lb blob is hystered. Like Whirlygig, I had evil periods from day one, and I made the decision to have Mirena placed to help with my heavy, disgusting periods this is when my "extremely huge, extremely" uterus was discovered. I scheduled my hyster then as no other options would give me a decent quality of life. I've looked back over your posts and you've asked great questions and received honest feedback. I want to let you know that it's okay for you to have a hysterectomy. It's not selfish. You can't participate in life - your own or your family's - with a malfunctioning uterus. You've taken all the steps to avoid it and you are left with continuing to suffer or the hyster. The only regret I have is not doing this a decade ago. I've wasted so much time in pain and bleeding and missed events. You have children who want and need you in their lives as a fully fun and happy mom. Your hubby wants you fun and happy too, but he wants you healthy most of all. I want you fun and happy and healthy and I don't even know you. It's really okay to do this, really.
Sponsored Links
Unread 03-17-2012, 12:02 PM
Re: Questions for sisters who had adenomyosis

I have struggled with issues for 7 years, but in that time also had two babies (both accreta pregnancies). The aftermath and issues from those deliveries lasted over 6 months each, so not sure where that stopped and my adenomyosis issues started. I would say the last 2.5 years since my last delivery have been the worst. Last May things started sliding downhill with periods that would make me feel I should go to the ER, chronic anemia, constant cramping pain that wiped me out, etc. Then in the fall my periods, which were already lasting 7-10 days (heavy the entire time), started coming every 21-24 days. It seemed like I would get a week or so break, than it would start again. So, I guess the last 2.5 years things have progressed from bad to worse for me. I was not at the "get this thing out" just because of that. There were a lot of other things that led me to make this choice.
Everyone is different. What is right, in regards to treatment for someone, is not right for someone else. That is what the doctors are for. To give us all the facts related to our own individual history, then help us make an educated choice that fits with our own needs.
Best wishes!
Unread 03-17-2012, 12:26 PM
Re: Questions for sisters who had adenomyosis


As always, you rock. Your comment really has made me feel at peace with this. The truth is, I would just live with these symptoms to avoiid the surgery and down time until it got completely unbearable, but the one motivator I have is that we have no other form of birth control. The pill makes me depressed, I'm allergic to latex and spermacide, I have too much scar tissue to have an IUD, my LS is too severe to use a diaphragm. My husband was planning on getting a vasectomy, but then my symptoms began progressing and he didn't want to take the downtime or spend the money on a vasectomy when a hysterectomy was looking so imminent for me. If we had a birth control option I'd really drag my feet on this.

I must admit, during my last period when I was laid up on the couch for days with a heating pad, snapping at my kids due to the pain, the guilt of what kind of mom I am right now due to my symptoms did out weigh the guilt I feel for spending this money and time on the hysterectomy.

Also, God has a lovely sense of humor when he responds to my prayers. Just a little while ago I got this weird yucky all over body feeling, then the cramps started, then I had massive explosive diarrhea and even though my period isn't due for another week, I passed a few blood clots. I became dizzy from the pain and had to go outside for some fresh air. My husband asked what's wrong and I told him I'm having uterus troubles again. Then I felt validated. My mom, dad, and doctor all think I need this.

I must admit, I am so looking forward to planning our trip to the coast this summer and not having to worry about my period ruining things.
Unread 03-17-2012, 12:53 PM
Re: Questions for sisters who had adenomyosis

I must tell you that I forgot about the diarrhea part; why? Because its gone!! I always had period induced diarrhea, which meant I always had diarrhea. I truly have felt glorious since the hyster. I'm at six months out now and still have trouble committing to events and planning trips because I think I need to schedule around my period. I keep forgetting I'm FREE!!! I can do whatever I want whenever I want and all the while wearing white panties!!! Just wait for that day; when you go to Target to buy new, pristine panties and you get to throw out those ucky period panties. I feel you on the birth control. I can use all forms but have religious objections. It bothered me so to have resort to the pills for health reasons, but they really didn't work anyway. The disgusting and painful periods are their own form of birth control. Turns out, I would never have been able to carry I child any way due to the creepy uterus. God does have interesting ways of pointing out the obvious, bless Him. No one wants to have surgery or be forced to choose THIS surgery, but it is really life changing. I don't have the words to tell you, but I swear it will be one of the best things you've ever done. You get your life back and your family gets you back and your hubby GETS you back. It's just amazing. I can't wait to see you on the other side.
Unread 03-17-2012, 01:04 PM
Re: Questions for sisters who had adenomyosis

We women put ourselves through so much hell, with doing things for others without thought for ourselves.
True martyrdom.
With layers of guilt on top for letting other people down.

I had my hysterectomy after many, many years of increasingly heavy periods, bloating, anaemia, periods running into each other with discharges. Strangely enough - no pain and cramping

At 57 I felt I should have been done with it all!
I was diagnosed with fibroids, and had a microwave ablationof the uterus 2 years ago. Unfortunately this did not sort it out, althought the periods did get further apart.
I think the Doc was worried about underlining issues and recommended the hysterectomy.
I had definately had enough by then. I came first, work came second. My kids are in their 20's, so no worries there.

Best thing I could have done.

I am older, and definately did not want any more children.
You have 3 children too. Did you want any more, as you were talking about birth control, and your husband having a vasectomy?
If you are content with your family now, then you are justified in putting yourself first now.
You will be a better wife and mother after, if you are out of pain, and healthy again.
Sex must be difficult with all this going on so I am sure hubby will be supportive.
Unread 03-17-2012, 01:18 PM
Re: Questions for sisters who had adenomyosis

Mrs Library,

I actually wish I could have one more baby. I have 2 girls and a boy and my son feel left out a lot. I wish I could give him a brother. If I could have another boy, the family would feel balanced and complete. But, I had a placenta defect with my last pregnancy which is now thought to have been caused by adenomyosis. I ended up ok, but if I had gone into labor rather than making my scheduled c-section, I could have bled to death. So, we are too afraid to risk my health for another baby. Besides, we really know we can't afford a 4th child and after 6 years of infertility, I'm incredibly blessed to have the 3 kids that I do.


I do have a ton of white Hanes cotton panties that have blood stains on them that I have full intention of tossing out once I'm through with the discharge portion of my recovery! I plan to buy myself some satin, lacey numbers from Victoria's Secret. Something I haven't done in 20 years!
Unread 03-17-2012, 01:53 PM
Re: Questions for sisters who had adenomyosis

I think you have answered your own question really, sweetie.

Much as you would like to even up the numbers for your son, another pregnancy sounds like it could be life threatening.
And no guarantee that it would not be another girl, making him even more out numbered!

My grand plan had only involved 3, because that is as many as you can fit in a car!
We can't afford a minibus.

My arrangement follows on from my mother's. 2 boys and a girl so she can have the pick of their good looking mates!
Trouble is, my mom got them in the wrong order, and my brothers did not want older girlfriends.
Unread 03-17-2012, 02:37 PM
Re: Questions for sisters who had adenomyosis

My Adeno progressed very fast...
I was told in May of 2011 that I had an enlarged Uterus... I was sent to a specialist. I had pain that wrapped around my side to back... and just did not feel well...
It took until early Oct before I saw the Specialist. In that 5 months I went from not feeling quite well to feeling horrid. I could not spend more than an hour or 2 from home without the severe cramps taking over. I missed out on a lot of family parties. The Doc got me into surgery within a week...
I had the side and back cramps, down the leg cramps, the runs, heavy periods, ruined panties, upset tummy, and more... I would lay on my side in pain... and yet somehow I still managed to get the kids to school and do office work... Women tend to torture ourselves.

I look back on some photos taken at the time and can see the worn out pain all over my face. I had no idea how bad I really looked. Now everyone I see tells me I look younger and bright... some even ask what my secret to looking younger is. When I tell them it is just the difference from pain to no pain, they are amazed. Pain can wear us down even when we are not even aware of it.

I never regret having the surgery because I have gained my life back.

My Doc told me that Adeno can smolder for a time then just go crazy...

My heart goes out to you. I have 3 kids and wanted one more too... But this choice was made for me when I had my last c-section 14 years ago and had too much damage to keep my tubes. It was hard to keep thinking that I would not have my 4th I wanted, but in the end, I look at my 3 great kids and I am happy... I look forward to grandchildren now..


Our Free Booklet
What 350,000 Women Know About Hysterectomy: Information, helpful hints as you prepare and recover from hysterectomy.
Answers to your questions

Thread Tools

Forum Jump

Similar Threads
From This Forum From Other Forums
22 Replies, Last Reply 05-18-2011, Started By northernlites
21 Replies, Last Reply 09-26-2009, Started By rls1231
0 Reply, Started By Ruby2010
3 Replies, Last Reply 05-26-2009, Started By joluree
6 Replies, Last Reply 01-29-2007, Started By WhitneyB
10 Replies, Last Reply 01-28-2007, Started By WhitneyB
18 Replies, Last Reply 02-11-2006, Started By Gogi06
3 Replies, Last Reply 12-06-2004, Started By kpbj
3 Replies, Last Reply 03-28-2004, Started By lynndibene
12 Replies, Last Reply 12-13-2001, Started By kabunge
13 Replies, Hysterectomy Options and Alternatives
3 Replies, Hysterectomy Options and Alternatives
14 Replies, Hysterectomy Options and Alternatives
9 Replies, Hysterectomy Options and Alternatives
19 Replies, Hysterectomy Options and Alternatives
23 Replies, Hysterectomy Options and Alternatives
26 Replies, Hysterectomy Options and Alternatives
5 Replies, Hysterectomy Options and Alternatives
11 Replies, Hysterectomy Options and Alternatives
8 Replies, Hysterectomy Recovery (post hysterectomy)


Hysterectomy News

December 4,2020


HysterSisters Takes On Partner To Manage Continued Growth And Longevity
I have news that is wonderful and exciting! This week’s migration wasn’t a typical migration - from one set ... News Archive


Calendar - Hysterectomies - Birthdays

Request Information

I am a HysterSister


Featured Story - All Stories - Share Yours


Your Hysterectomy Date

CUSTOMIZE Your Browsing  

$vbulletin->featuredvideos is not an array!