Total hysterectomy : Hi I’ve had an... - Endometriosis UK

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Total hysterectomy

Cazywazy profile image
19 Replies

Hi I’ve had an appointment with my consultant Friday and decided to have total hysterectomy but keep the overies. Has anyone had this done if so how was your experience? Thank you

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Cazywazy profile image
Cazywazy
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19 Replies
Gempot profile image
Gempot

I had a hysterectomy in 2016 but preserved 1 ovary & tube. Although things are much improved, I still suffer with endo attaching itself elsewhere. Xx

Cazywazy profile image
Cazywazy in reply to Gempot

Thank you for your reply how do they treat it when it attaches other places? Also do you still have regular check ups? X

Gempot profile image
Gempot in reply to Cazywazy

After my hysterectomy I still saw my gynae every 3mths until I started getting pain etc again. I’ve been under a urologist since and am currently waiting on removal of my appendix & +/- bowel surgery. I’ve had 2 surgeries since my hysterectomy & this will b my 3rd. Some women I know have never had any problems since hysterectomy but it’s no guarantee unfortunately, guess I’m jus one of those “unlucky” ones! Xx

Cazywazy profile image
Cazywazy in reply to Gempot

Oh no that’s awful you poor thing!!it does worry me as I had surgery 8 months ago and they found endo in my bowel, they did as much as they could at the time and I now have symptoms back. X

Gempot profile image
Gempot in reply to Cazywazy

How did ur bowel surgery go? My MRI apparently shows it on my sigmoid colon but like always until they actually get in to have a look they never really commit xx

Cazywazy profile image
Cazywazy in reply to Gempot

They tried to get a bowel surgeon in at the same time I had my laproscopic surgery but this didn’t happen so all they did was unstick my ovaries from my bowel and they was hoping that it would help with my symptoms and it did for a while but the last couple of months symptoms have returned. The symptoms are mainly there around and on my period so I was hoping hysterectomy would stop this but maybe not x

Gempot profile image
Gempot in reply to Cazywazy

I’d definitely go for hysterectomy, although I am still suffering it’s nowhere near the mess I was in before hand. Hope it suits you xx

Cazywazy profile image
Cazywazy in reply to Gempot

Thank you and I hope you get sorted soon xx

bighug profile image
bighug

Hi, I’m sorry this might not be the best reply, I had a total hysterectomy 2018, removed endo from everywhere, including both ovaries, (that he could see) my surgeon thought my ovaries were then healthy enough to save. Which is what I wanted. Sadly I was in pain again only 3-4months later. I knew this was always a possibility, so I was back in surgery November 2019 to have my ovaries out. Unfortunately I’m suffering with pelvic and lower back pain agin. (Don’t get me wrong, symptoms improved after the hysterectomy) the only problem with this horrible decease is it’s not curable, yet! And seems to reappear!

Just remember tho, we are all different, and your experience might be a positive one and hopefully pain free one. Good luck, let me know how you get on.

Take care bighug

Cazywazy profile image
Cazywazy in reply to bighug

Thank you for your reply, my consultant did say that might happen. I’m 43 so he’s worried about taking the ovaries out and me having to take HRT would put me more at risk of Breast cancer. So I’ve decided to try and keep them it’s just the thought of more surgery. Sorry your still getting pain and appreciate your reply.

bighug profile image
bighug in reply to Cazywazy

I was 45 when I had my hysterectomy, usually they prefer to leave your ovaries if you’re under 50 and they are healthy enough, I was just unlucky that the endometriosis came back so quickly. Hopefully you will be ok and you might not have to have any more surgery x

bethm1983 profile image
bethm1983

I had the same op in 9 weeks ago and I'm very happy so far. I'm still recovering but can notice a difference already. In my uterus afterwards the found quite severe adenomyosis so I definitely did the right thing going ahead with mine. If you have any specific questions please feel free to ask it's a daunting time x

Cazywazy profile image
Cazywazy in reply to bethm1983

Thank you for your reply I also have adenomyosis quite bad so I really hope this helps x

Pinkmadmoo profile image
Pinkmadmoo

Hello

I had total hysterectomy in November 2018, I kept one ovary as my other was attached to womb so had to come out. I also had my cervix removed as the main reason I had the hysterectomy was because of recurring abnormal cervical cells, when I had the op she said she removed so much endo and adhesions along with a massive module from just above my cervix which was rock hard! I also had extensive adhesions around my ureters and had to have uteretal stents put in a week before surgery and they were kept in til 4 days before the Christmas of that year and I only had them out then as I kicked up a massive fuss. They were by far the very worst bit for me, I felt fine after the hysterectomy but the stents made me feel like I constantly needed to wee and they made me feel so sick. I literally cried every day. I feel I would have recovered so much quicker had they took the stents out at the end of the op.

Anyway as for the endo, you are likely to still get symptoms if you keep your ovaries. As they release the hormones that tell your body you should be having a period and these hormones are the ones that make the endo react. My previous consultant told me never to have a hysterectomy just because of the endo as it certainly isn’t a cure. Unfortunately I had no choice, it was either have the hysterectomy or wait for my reoccurring abnormal cells to eventually turn to cancer as they couldn’t remove any more due to my cervix being to short due to previous procedures to remove the cells.

I often get told I’m a complex case due to the severity of my endo. I had to be marked up for a stoma bag which was scary as they thought they may not be able to save part of my bowel. Luckily my amazing surgeons did.

I still have symptoms and sometimes they are worse than before. I go back in may to see what’s going to happen next. I still have tiny bleeds like a very light period due to endo where they have sewn up my cervix.

I hate this disease and hope you get the relief you are hoping for x

Cazywazy profile image
Cazywazy in reply to Pinkmadmoo

Thank you for your reply, you really haven't had a great time of it you poor thing. I’ve tried the coil but it’s making my periods worse and they say the ablassion won’t work as my muscle in my uterus is too thick so I really don’t feel I have any other choice. I hope you get some answers in May x

EndoJaz profile image
EndoJaz

Hi I had hysterectomy with ovaries left in 3 yrs ago. It was great to finally stop the flooding as that literally ruined my life but the pain remains so having another lap soon to see what’s what. It has made no difference to my pain although they found endo on the pouch of Douglas and uterosacral ligaments. I def don’t regret having it and to be honest it wasn’t that horrific.. all keyhole. Good luck x

Cazywazy profile image
Cazywazy in reply to EndoJaz

Thank you for your reply I really hope it helps it looks like most of you don’t regret it, so I feel I am making the right decision x

Horseyjules profile image
Horseyjules

Hi I went for total hysterectomy as was in the mindset of I dont need my ovaries and tubes so why not get it done in one go and remove the risk of another op and ovarian cancer. That was my choice as I have had 4 ops since 2016 on my shoulder and was waiting for a Nissen fundoplication for reflux which I have since had done ! so could not face the thought of any more ops. The hysterectomy went fine and removed some adhesions from left side and test on womb etc came back clear. So it was the right decision for me at 46 and on estrogen patches now. Everyone's different and will have different reasons for decisions. Good luck and hope you get some relief xx

Cazywazy profile image
Cazywazy in reply to Horseyjules

Thank you for your reply I really appreciate it. I know what you mean I’ve also got to have surgery on hernias on my left and right groin I’m just hoping they can do all at same time x

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