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Endometriosis UK
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Hysterectomy

Have any of you ladies had a total hysterectomy plus ovaries. Bowel resection and excision of endo at the same time? Any positive stories please. I am having all this done on Tues an bricking it 😳

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Hi Kerry2017,

I will be having both ovaries and Fallopian tubes removed this Friday and my endo treated and a complex cyst removed as well. He may have to do a hysterectomy depending on what he finds when he goes in. I am feeling pretty nervous about the surgery and the pain afterwards. Best of luck with your surgery on Tuesday.

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I can't believe how nervous I am. I'm in so much pain and know I need it doing but this is not a nice feeling is it. I have endometriomas on ovaries which are also polycystic so having those removed. Have you been put on prostap or anything to put your ovaries to sleep? I've got deep infiltrating endo on my bowels so could also end up with a stoma. Hope everything goes good with you ok hun. Thanks for replying x 🤗

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Hi, I was on Dectapectyl for 6 months last year to put me into a chemical menopause. I need to have surgery now due to complex septated cyst and elevated CA-125 for the past 2 years. The cyst won’t go away itself and there is a risk that it’s cancer but hopefully it’s caused by the endometriosis. Have you to do the bowel prep before the surgery. I am hoping I won’t have to do it but I will find out on Tues At the pre op appointment!! Best of luck on Tuesday!

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I'm on prostap which I wish I never had cos been in worse pain. I have elevated ca125 an they said that's probably due to the endo. Really hope that is the case for you hun fingers crossed. I'm on bowel diet now an start the prep Monday which I'm not looking forward to. I can't eat after 130 on the Monday an my op not till Tues afternoon an then heard can't eat for 48 hours after ☹. Thanks for the luck and best of luck to you too x

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I had to do a bowel prep in Sep for a colonoscopy. I had to drink Kleen prep which I made up in advance and chilled in glass bottles and I added a bit of elderflower cordial to it to improve the taste! Make sure you have it prepared a couple of hours in advance and chilled. You will need to be beside the bathroom after about an hour for a few hours!

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Thank you for that. I will defo do that x

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I had this op in May & recovered really well. My pain was completely manageable and a lot less than I was expecting. My main problem came from constipation following the op, it took five days for me to be able to go to the toilet, but after that was sorted my recovery was really straightforward. I’ve never looked back xxx

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Thank you for posting that is so good to read 😊. Have had nightmares of coming out of theatre screaming. My partner getting me something for my bowels so hope I don't struggle an also hope don't end up with a stoma. Bet your so happy. It's made my day reading that. Thanks again x

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Hi. I haven’t had this yet but facing it next year and also risk of a stoma. If it’s ok, can you update on how you get on and your recovery as would be interested to hear your outcomes. Wishing you well for the coming weeks. Xx

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Hi. Yes I will definitely let u know. Can't believe how close it is now. I'm not liking this low fibre diet for my bowels and start the dreaded prep stuff tomorrow. Thank you for well wishes xx

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Hi. I had this done almost 4 weeks ago. Total hysterectomy, ovaries and removal of endo. I also had endo removed from my c section (bizarrely the most painful for recovery). I had the bowel prep but they were able to detach the bowel and avoided resection. It is a big decision but I did a lot of research and realised it was the only real option for me. Talking to my consultant last week about what they found, I’m glad I did it now than wait any longer. I was so scared and cried all the way into theatre. My biggest fear is that it doesn’t help longer term but I’m staying positive and I’m sure it will make a huge difference. Very early days but feel great considering it was only 4 weeks ago. Good luck!

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Bet u were very chuffed no stoma. I've done a lot of research also but haven't really been given a choice. With my bowel it's deep infiltrating through to rectum. They told me I need hysterectomy now cos would be too dangerous in the future. I got adenmyosis and intramural fibroids so my uterus has to go. The endo is on pelvis,bladder, bowel an possibly kidneys too. I've got PCOS to an ovaries have endometriomas on so there going. Well I really hope for you yr endo doesn't return an u live rest of yr life pain free. Thank you for your reply hun ❤xxx

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Hi kerry

I had a total hysterectomy both ovaries and cervix plus endo and adhesions removed from my bowel in late June this year and I'm now feeling so much better. When first out of surgery for the first 2 weeks I noticed no difference and it was painful but not awful the big thing to remember is to follow all the advice they give you don't try to speed your recovery it really does take a long time .

For me it was the best decision I feel so much better and virtually pain free.

Good luck

Ketz

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Aw thank you for sharing. I will definitely do what they say. I've heard so many horror stories from ladies that did things too soon. How do u feel mentally? Are u taking hrt? X❤

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Go for it. I regret that I didnt do it earlier because I was scared from menopause and form the operation itself. My problems just went worse and worse and not I am so much better. I really regret not doing it when I was younger and stronger. Now I am over 50 but endo just keeps growing, menopause is not stopping it. Its a nightmare. I wish you good luck and fast healing.

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Hi I’m 57 and had really bad period pains most days even though my last period was 2015 have fibroids which they say is the problem but they say when in menopause everything stops growing 😩obviously not the case for everyone.

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Thank you for your replay. Did you do hysterectomy or not at the end? I need to do it, just now I have an autoimmune conditions which makes my body much weaker and it will be more difficult with healing afterwards.

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Aww I really hope I feel the same way. I am scared about op itself if things go wrong an if not got pain under control. I can't go on like I am so have to have this but omg so scary. Thanks for sharing and for the luck x 😘

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Having total hysterectomy open incision on the 21st so in 9 days... I am totally shitting myself, possible bowel resection, cervix, ovaries the whole lot.... I’m thinking of you xox

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How come open? They said they will try laparoscopic but may have to do open. Wish I just new so don't even know if going to have a stoma or open surgery till I wake. I'm with u on that. It's not a nice feeling at all. I will let u know how I get on an hope I can ease your worries if I can x

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He said he was doing open because of a few factors

1, I am a plus sized girl (no idea why that factors to be honest, I have had several laps done in the past no problems)

2, because he knows I have it on the bowel, and possibly stomach and liver he wants to make sure that he gets as much as possible.

When is your surgery ?? Add me on Facebook if you want, Elona Moore

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I'm also having total hysterectomy on 21st. Absolutely bricking it too. At only 33 years old its a massive decision for me and my little family. But my 'quality'of life is so poor at the moment. It's the only option, I want to be out playing with my little girls not laid up in bed 3 weeks out of 4. So scared though. Best of luck with your operation and a speedy recovery. xxx

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Oh honey we are hysterectomy sisters xx

I know exactly what you are saying.. Sending love and strength to you.

Also feel free to add me to facebook if you want to stay in touch

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Hi I had total Lap hyst, incl ovaries, tubes, cervix plus rectovaginal endo excision at start of August. Was on Zoladex for 7 months before. Was warned 50/50 chance of bowel resection but wasn't necessary. Feeling so much better now, my GP thinks my recovery is "amazing". First 2 weeks was tough and I did wonder if I'd ever feel well again. However it gets better! I've gradually built up walking and I think that has really helped. Also I googled how to get in/out of bed post op and practiced before! Felt a bit silly at the time but was really helpful.

I do still have some discomfort when my bowel is full but nothing like previously and is generally fine after BM, the key is (once your bowels start working) is to keep things moving/soft - tmi!!

I hope it all goes well for you. Mx

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Thank you for replying. Glad your recovery went well. I never thought of googling that. What a good idea. My bowels kill me now and have to use toilet so often cos if I don't empty I'm in agony. Just can't wait to be sorted and the other side of this op. Thank you for all the advice I'm taking notes 😊xxx

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I'm having this done on the 30th and I'm totally bricking it too! Good luck Hun x

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Aw it's not good is it. I will let everyone know how I get on an hopefully can ease your minds 1🤗 xxx

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Having a total hysterectomy bowel resection and urethral stents this Thursday super nervous too. Shall we stay in touch let each other and everyone else know how we get on? I’m not having a bowel prep I’m having 2 enemas one the night before and one in the morning 😬 sending you lots of good luck we can do this! I think we must all have pretty good pain thresholds after all the endo pain we have all been through xx

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Hi Natalie. I'm having those stents too. Aw I know how your feeling an it's horrible. Definitely stay in touch as soon as I can I will let everyone know how I get on. Thank you for the good luck and good luck to u too. We can do this and yes we must be so strong what we go through. I think it's so bad we have to go through all of this. Speak soon 🤗😘 xxx

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Hi Kerry, best of luck tomorrow. Hope it all goes smoothly for you and they manage to get rid of all the endo and cysts. How did they confirm that your cysts were endometriomas? Had you an MRI scan or a CT scan. I had a CT scan with contrast which showed a complex septated cystic lesion! But the doc won’t confirm anything until the op on Friday. I have the pre-op assessment tomorrow at 8! Best of luck!

Maria

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Hi kerry2017

I have just joined so new to this. How are you getting on. I am facing a decision on what to do about bowel and ovaries/hysterectomy. Can they do them together. Have been offered right ovary removal or full hysterectomy to get it done with but unsure as I'm only 45. While bowel want to straighten a kink and lift everything after 5 yrs of constipation

I am so confused. How have you or anyone else got on

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