Adenomyosis and hysterectomy needed Advice! Lots of questions (children mentioned)

This is my first time here. I am 31 I have 2 kids a boy age 5 and a daughter age 8 months. After having severe pain and severe bloating with my cycles my dr did a procedure to look for endo but found none and said my uterus was boggy and spongey. She said it seems I have Adenomyosis. I still waited on having another baby and now have the 2 and one of each which is great. I potentially wanted more but with this awful pain all the time and very scary pregnancies I think I should just have the surgery and be done.

I have my appointment tomorrow to hopefully discuss having this done. My fear is 2 things.

1) my husband doesnt understand my level of pain even though he sees I look 5 months pregnant with every cycle. And is unsure that he wont want more kids even though they all are getting earlier and scarier. my daughter being 6 wks early and my son 4. I have also had a miscarriage and an ectopic resulting in having a tube removed. I cant help but think that I need to do what is best for me and he will eventually get on board. He says he will support me no matter what but when I say ok my appt is tomorrow and I am gonna talk surgery he gets quiet and sad and says I hate this is the only option.

2) What if I do all of this and it is not Adenomyosis after all? I would hate to think I am gonna do this and that is not an accurate diagnosis and I will still have pain. I wish I had endo at least and it was something that could be confirmed before Hysterectomy. Has anyone heard of someone doing the surgery only to find out it wasnt Adenomyosis?

If any of you have any advice or info that might help me in my decision I would greatly appreciate it.

My doctor suspected adenomyosis after an ultrasound.I had laparoscopic surgery with hysyeroscope 7 weeks ago confirming adenomyosis. I had my hysterectomy today.discuss laparoscopy with your doc. You shouldn't jump into hysterectomies as there is no turning back later
.my lap didn't change the fact I needed a hysterectomy but it sure gave me confidence that hysterectomy was necessary.

Hi I am 7 weeks post op TAH/BSO, my doctor couldn't confirm until after my op that it was aden and it was, I feel so much better and it was the best thing I could of done and I also class my self as quiet young at 38.
I would have like labour pains for about 2 weeks a month and feel bloated, would always feel like I needed a wee, thus is now all gone and my moods are so much better also. I tried the coil, the pill and lots of pain killers and nothing worked so felt this was my only choice. We decided a few years ago we didn't want any more children I am lucky to have a 12 year old boy who has been very helpful during my recovery, my husband also has been better than I thought he was going to be as well and us still doing most of the cooking at the weekends!
Any more questions please ask and I hope you can decide on what's best for you ( if it also help my hubby and son think I'm a lot nicer now to lol) xx

Your uterus is spongey and boggy, that would be more likely adenmyosis than anything else. The odds are very likely that is your diagnosis.

My periods got worse after each baby I had. The last I ended up with a placental deffect and it was a high risk pregnancy as a result. I wanted 1 more baby, but didn't want to risk more problems.

Words can't even describe how much better I feel now to have my enlarged, boggy uterus gone and I'm only 4 weeks post op. I had cramps and terrible bloating, the pain and pressure were miserable! I lost an inch and a half off of my waist after my surgery.

I would ask for an mri and us. I had both and they confirmed adeno. I have a very high and retroverted uterus so it very hard for them to really feel my uterus. Also mris are like 80% accurate.

I feel like you just shared my story. I am in the same boat. Age 31 is a hard age to face such a drastic surgery. I have been putting mine off for close to three years. Trying to decide if it was worth it to try and get pregnant again (I have three children, have been pregnant six times.)

There are other options before you go the hysterectomy route. I have tried continuous cycles of BCP, the mirena IUD, and Lupron shots. After years of trying to back burner the issue and just hoping that things would get better, I have decided that my next step is a hysterectomy. Ask questions. A lot. Question everything. Ask for alternatives.

If you aren't ready, don't push yourself. It took me a long time to get to where I am today, and even still I question and wonder. But I can tell you with certainty that I am done being in pain. And if this will help, or fix it, regardless of whether or not there is confirmed Adenomyosis in the end, I am going to do it. Everyone I talk to about this says it was the best decision that they have made, and they wonder why they didn't do it sooner.

Your story brought me out of my lurking. Thank you for being so brave.

So glad to have found this site and your experiences are helping me feel more confident that my hysterectomy will be the right thing to do.
I had never heard of adenomyosis until I found this webiste.
Most people don't believe me that I have labour pains for 3 or 4 days a month and the most horrendous pain.
I read a lot of articles here in England that said that a hysterectomy was not a sure way to stop the abdominal pain but your comments have reassured me.
My doctors have often mentioned that my uterus is enlarged and difficult to get a good scan of so I may mention it to the consultant at my pre-op appointment.
Thank you for sharing