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Endometriosis UK
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Hysterectomy advice

Hi all

After 12 years of suffering with endometriosis, my consultant has FINALLY agreed (I’m 32 with no children) for me to go ahead with having a full hysterectomy.

I will be having the operation laparoscopically at the start of next month. I know that it won’t cure my endo but I really hope that it can improve my quality of life.

Are there any other ladies out there that have had a hysterectomy that would share some advice for recovery?

Thanks in advance

D-Lx

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Having my full hysterectomy was best thing I ever done, I'm post 21wks today since I have my op.

I'm no longer on any sort of pain relief, before my op I was having 5 lots of 5ml of morphine a day & other pain relief 😢 .

What I would say is listen to ur body, it will tell u when it's ready for u to do ur old stuff again, for me it took 10wks for my body to heal, but I stopped my pain relief 17days after my op.

I'm starting my hrt at end of September, my surgeon wanted me six months without it to see how I coped.

Apart from the hot flushes & my normal anxiety I'm doing great.

Hope u have a good result at the end of urs. 😍🙂

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Thank you for the advice.

I’m hoping it’s going to be a good result for me too!

I’m glad it was the right decision for you

Take care xx

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I had my hysterectomy two years ago, aged 34 and it was the best decision I could have made. Before, I was constantly in and out of hospital, was miserable and in pain. Since then, I have returned to work, I run regularly and although I still have the odd ‘bad day’ they are nothing in comparison to what they were before - My quality of life has improved drastically! As Mrs-osbie said, the most important thing is to listen to your body. It is a big op that takes months to recover from. I instantly felt better so pushed myself too early on and that knocked my recovery back. Also, be prepared for the need to recover emotionally too. Although my uterus had caused me nothing but torture over the years, I still went through what felt like a bit of a grieving period and every now and then still get the odd pang of sadness that takes me by surprise. For me though, it really has been life changing and I am so thankful to have been given a more positive outlook on life :) If you have any questions, please don’t hesitate to ask. I hope you get the same relief with your surgery. Good luck!!! X

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Thanks so much Katinldn!

I’m so glad it was the best decision for you.

I feel strong atm and relieved that it’s finally happening but I’m also anxious about the emotional side of things too!

I’m hoping to get back some quality of life.

Thanks again and take care of yourself xx

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hi hun how mad is it ive stumbled across this as we speak i had a total hysterectomy just friday came home sat and went out in town today but in my wheelchair i see you havent had children before you make this desion think abt it good as you might regret it in the long run am 49 now and got twin girls so nomore for me ha ! i too sufferd really bad for years with back pain and buldging disc too and along with fibromyalgia i feel great at the moment coz my back pain has gone as my endo was in my bowl virgina and my P.O.D iam so happy for that pain to have gone but just at the mo i need to take it slowly iam hopeing to stop some of my meds as well am on morphine dyhrodcodien and manymore meds but as you know yourself be prepair to make the right choice as to ever you want children or not as you are still only young lady i hope u get better soon and i hope to hear back from you as i will keep updating my reports kind regards cheryl xx

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Great to hear these positive stories. Feeling a bit better about things now. I kind thought a hsyterectomy may be on the cards but thought my Consultant would speak with me, exam me, pencil me in, order scans, then have an appointment to firm up plans. All i got was you can have ProStap (already tried), another lap (probably need more and your ovary is a concern) or a "total clear out" so everything is gone with less chance of recoccurence. No examination, no scans just a choose one. When I agreed to the hysterectomy he said that was the best choice given age and circumstances. I'm left researching everything else myself!

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Hi Cheryl

Thanks for taking the time to respond to my post.

My husband and I are certain that we don’t want children and that my quality of life is more important. I actually cannot imagine bringing a child into this world whilst dealing with daily suffering that my endo brings.

I’m glad things are good for you atm and I hope they continue to improve.

Take care of yourself

D-Lx

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Hi, I’m in a similar situation ( 29, been given the go ahead for my hysterectomy & some bowel surgery) so following this post avidly!

After talking to one lady who had the op before menopause, she told me that while it was tough physically for the first few days, after that it was fantastic. She told me to be careful not to do too much to quickly, as like the other ladies have said it can take a while for your body to get over. She told me to of the emotional effects it had had and to prepare for it. While her body felt great her mind didn’t.

I can’t say it put’s me off having the op. After 15 years if it improves my life the slightest bit it will have been worth it.

Good luck with your op. Hope it all goes well Hx

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I’m in exactly the same boat as you.

I can’t carry on like this and I feel that having the hysterectomy is the option I have left to improve my quality of life.

Good luck lovely and let’s keep in touch to support each other

D-Lx

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I found out last week I am to have a hysterectomy for endo, adhesions and possible pelvic congestion. My date will be mid September so I'll be following this thread as any advice is great. It's fab to hear positive stories that it is manageable and people get back to a better life afterwards.

Can I ask those who have been through the surgery if you had your cervix removed? Dr wants mine out to prevent any future opportunities for disease growth. As my last smear put me to bed in agony I can see this being sensible.

Thinking I will probably go for HRT as I have low calcium in my diet and I want to preserve bone density.

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Mine was removed to stop reoccurrence of endo. No more smear tests! Yey!

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I fully sympathise about smears - they knock me off my feet!

Good luck with your op. I hope it’s a positive result for you.

Take care

D-Lx

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Try and get as fit as you can before the op. Take your time after and gradually start walking to improve fitness. The support pants they sell for after are overrated and tend to roll down, get a pair of normal control pants with built in corset, excellent support! Cheap rectangular cushion from B&M or somewhere great for wrapping round when wanting to cough/sneeze and in the car to stop seatbelt irritating. I had abdominal incision so possibly slightly worse for swelling etc. Make sure you get good laxatives for post op and push for your HRT (combined) to be ready before you leave hospital.

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Maybe I’m being stupid here but what are the support pants for?

I’m also having ovarian grafting (which I believe) will trick my body into making natural HRT....

D-Lx

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A lot gets moved about during a hysterectomy (though I had endo removed from abdominal wall and pelvis as well). Support pants just help it all to feel secure and reduce swelly belly. Most of the time I lived in high waisted underwear but did use them when starting to walk again/doing any activities. Also handy at night if fidgeting a lot and rolling over, just makes it all feel snug.

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Ah thanks sludge!

I think I’ll take a look at some support pants as they sound like they could be helpful.

D-Lx

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My Dr mentioned that but he said I was a bit old(!) and also he felt my ovary may not be doing so well given my pain. I didn't realise my focal point right side pain was where an ovary is, I thought they were higher than my belly button, guess I didn't pay attention in Biology class.

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I'm having it done laparoscopically. I have laxatives that work for pain med issues. Dr seemed reluctant to talk about HRT saying I'd need to give it a while and see my GP.

I have a ladybird travel cushion which sounds ideal for in the car.

Do you think compression pants are needed? When I had my lap I just wore undies that didn't sit on my incisions.

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