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Hysterectomy for Adenomyosis and endometriosis

FazzyB profile image
22 Replies

Hi all,

I have been advised now that I have no other option apart from having a hysterectomy.

I have have had several procedures and opps since being diagnosed with endometriosis back in 2017.

Ongoing long battle with bad symptoms associated with it all.

I have adenomyosis and signs of endometriosis again slight signs of it on the ovaries.

I am 39 yrs old now and have to deal with all the symptoms of adenomyosis. My uterus is twice its normal size and I have several fibroids internally.

I just want to see if anyone has had a hysterectomy and how you felt after it?

Also has it made a difference and have all your symptoms gone away?

The consultant is planing to leave my ovaries in due to my age and not having a sudden onset of the menopause.

Any advise and input is welcomed 😌

All the best

Tc

FazzyB

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FazzyB
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22 Replies
louispat profile image
louispat

Hi there,

Yes,I had a total hysterectomy 2 years ago due to adenomyosis. I have never looked back. However I was older than you, in my early 50's . Best thing I've ever done.

FazzyB profile image
FazzyB in reply tolouispat

Thank you for sharing I just want to grasp a better understanding on how this has an impact,I'm glad you are well and this has work out for you.

I am starting Zoladex again next week to help with symptoms prior to the Big H opp

Many thanks

KR

FazzyB

Italia20 profile image
Italia20 in reply tolouispat

Hi Just came across your post.I am 55, 3 days post op hysterectomy.Wondered if you could let me know how your recovery went as not feeling too great so would welcome anything positive 😊

FazzyB profile image
FazzyB in reply toItalia20

Hello Italia20I have not had the hysterectomy yet but previous major surgery took me 5 weeks before I was able to get around easily without any pain or support required.I know that the hysterectomy takes a but longer but is very simular to my last major procedure (as per my consultant).

What I would say is take your time and rest alot. Once your able to take short walks to help ur healing.

But all the best and may God give you speedy recovery and health Amen.

I have the hysterectomy to come yet so that is next operation for me.

Tc

Bye

Italia20 profile image
Italia20 in reply toFazzyB

💜💜

Username12345678 profile image
Username12345678

Hello, I just wanted to comment to say that I'm in a similar situation to you (although I am 45) I'm on the waiting list for a hysterectomy (likely full) as I have endo and adenomyosis too. I'm treatment free at the moment so my periods are pretty awful! I have to admit I keep swinging from 'I cant wait to have the op' to 'Am I doing the right thing?". Feel free to DM if you ever want to chat things over.

Heartof3 profile image
Heartof3 in reply toUsername12345678

I just read your comment Username12345678 , i am feeling exactly the same but need it done. I am on the waiting list too. How are you doing?? X

Username12345678 profile image
Username12345678 in reply toHeartof3

I’m doing really good! I’m 4 months post op (total hysterectomy) Feel free to DM if you have specific questions 😀

FazzyB profile image
FazzyB

It's not good but you need to have done thing for your period. Maybe consider the coil or HRT, your consultant should be able to help with this and I know what you mean its a dilemma to be in...Like wise feel free to chat

Keep in touch

Username12345678 profile image
Username12345678 in reply toFazzyB

I had the coil removed in January after a year of perseverance as it just made things worse. To be honest, I stated yoga and that really helps. I’m not sure whether it’s mind over matter as it’s something that I can control which makes me feel better so I’ll take it!

FazzyB profile image
FazzyB

That's good to hear that you managed to have some routine that 👍🏼 works for you.

AlexMoomin profile image
AlexMoomin

My situation is almost identical to yours. I’m the same age, with very similar problems and I’ve lost track of how many surgeries I’ve had over the past 10 years. I hope you get some helpful advice here.

I’ve been advised to have a total hysterectomy, and that removing the ovaries is necessary for the best possible pain-free outcome. I’m going to check if they’ll consider leaving mine where they are, having read your post.

I’m between Prostap injections and the pain I’m in is a horrible reminder of why I’m probably going to go ahead with the surgery.

I don’t have children so the hysterectomy will end any chances of having a baby. Big decisions.

I believe the success rate is greater if adenomyosis is the primary cause of pain, assuming they’ve removed all signs of endometriosis.

Wishing you all the best.

FazzyB profile image
FazzyB in reply toAlexMoomin

Hey Alex Moomin,I'm sorry to hear what you are going through.

Thank you fir reaching out and sharing your experience.

I can totally relate to the fact of how you feel and the hysterectomy can not come sooner.

I have been experiencing alot of pain and it feels like it is getting worse.

I had Zoladex injection this week too, in an attempt to help with the issues I am experiencing.

But I have to say nothing will help until it is all gone.

I'm sorry you never got the chance to have a family. But there always other options of having a family is something you want later down the line.

All my hormone issues and health problems started after I had my only child back in 2010.

I first felt something was wrong in 2011 and finally I got diagnosed in 2017. However from 2017 onwards its been one thing after the other.

I really can not wait to have the opp.

Also I am surprised they are going for a full hysterectomy with your age to consider as well?

Might be something to look into...

I wish you all the best and may you be pain free soon.

Tc

FB

I'm a little late to add on. I had a partial hysterectomy because I was 28. My ovaries turned severely cystic. I had the right removed at age 32 and the left at 34. I wish they took them all at the same time. I found I felt better on hormone supplementation. I had severe adenomyosis. In bed 2 weeks out of the month. Varicose veins to the uterus. The uterus was 1 1/2 times normal size. There are studies that show that once you remove 1 part of your reproductive system, the other parts start acting up. True in my case. Every other month I would get a cyst that would grow until it burst. First on the right and then on the left. I had a 1" cyst on my left ovary when they removed the right. They left it for hormones. Did not work out better for me. My body felt like it hit menopause right after partial hysterectomy. I think my system was not working right from the getgo. Much happier with all out at 34. Gallbladder disease is an issue with hysterectomy. Mine was removed in my late 30's. I have not missed it. Some people do have issues with this. Stuff to think about. Hope this helps

FazzyB profile image
FazzyB

Thank you for sharing your experience I wish you all the best and I'm glad your better.

Heartof3 profile image
Heartof3

How are you doing FazzyB ? Did you have your hysterectomy?

I am currently on the waiting list x

FazzyB profile image
FazzyB in reply toHeartof3

Hey. I have my hysterectomy today finally but not on the NHS I have gone private. Fingers crossed

Heartof3 profile image
Heartof3 in reply toFazzyB

Ahh good luck. Let me no how u get on 💖

Hello, I had adenomyosis and suffered a lot with it. I had 3 children under the age of 4 when I had my hysterectomy. It solved my pain issues, except my ovaries went crazy following. I have read many medical studies that confirm this. I was 28. I felt so much better and had the energy to take care of my 3 kids. I would say get a full hysterectomy, instead of all out in 3 surgeries. I did much better on hormone replacement. I think my hormones were off from the get go. By the age of 34 I had a total hysterectomy. For me, it made a world of difference.

Heartof3 profile image
Heartof3 in reply toDesperateforrelief

Ah glad to hear u are feeling better. Such a big decision isn't it.

They're leavingmy ovaries to stop sudden menopause. I don't do well with hormoanes so this scares me.

I often get painful ovulation too, so this also worries me. I don't no what to do for the best x

Desperateforrelief profile image
Desperateforrelief in reply toHeartof3

It is a hard decision. Hormones are responsible for so much and if they are off the wreak havoc on those of us dealing with it. I pray you get good results!!

Heartof3 profile image
Heartof3 in reply toDesperateforrelief

Such a battle, physically and mentally.Thank you ❣

Xx

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