hey I had a lap back in October and it looks like the endo has returned so I’m booked in for a total hysterectomy! I’m really scared about it all. How are you after yours? Has it changed you at all?
I’ve already started hrt and get on really well with the oestrogel especially with less adhd symptoms.
Any insight would help if feeling quite scared about it atm. Thank you in advance.
Hi, am 7 weeks into recovery from mine. It's been weird as externally there isn't anything to show that you have had major surgery (everyone tells you it is!) But really knocked me off my feet. I think the hardest bit was the having to stop HRT in prep for the operation and then waiting 4 weeks before I could restart it (also had to change what I was on) which those weeks I struggled with hot flushes/muscle weakness etc but now it's starting to settle feel better. Still have days that are hard but trying to not put pressure on myself.I would say make sure to take it easy and have a good support network for the first couple of weeks to help with general day to day things.
Xx
thank you this is super helpful and I’m sorry to read you had to go through that too 😢. I started Oestrogel and get on with it pretty well so I’m hoping I’ll be ok 🥴. My husbands fab so I’ll get him to book some time off work xx
Don't do it. It won't cure endo. I had a full hysterectomy a few years ago (it was more.for severe pmt) but I still suffer enormously.
that’s really awful to read. Did they not remove all the endo? 😢
Hi Amy
It's totally normal to be scared in advance of surgery, especially as everyone's situation is so different when it comes to endometriosis - there's definitely not a 'one size fits all' solution. Please read through our Hysterectomy Information Pack so that you feel fully informed on the surgery. This can be downloaded at endometriosis-uk.org/public....
From our website we also have the following information:
"Hysterectomy treats endometriosis ONLY on the organs that were removed. If the endometriosis confined to womb and the period pains are only due to this condition, hysterectomy would minimise those symptoms. If any endometriosis was left behind, or was growing elsewhere inside the body, you may be likely to continue to experience symptoms."
The most important thing is to ask plenty of questions before the procedure so that you fully understand why they have recommended this treatment pathway to you and what their expectations are following the surgery.
Wishing you all the best. Take care x
thank you so much! I’ll take a look at this. I believe you also have a helpline I can ring? I just want to get as much info as possible. They have reassured me they’ll be looking for endo whilst they’re there and this is also for PMDD symptoms too as I have adhd and struggle. All feels a bit of a mess and I’m worried it’s going to be made worse xx
Hi Amy
Yes - our helpline is manned most days and is run by volunteers who all have personal experience of endometriosis. The number is 0808 808 2227. The times it is open can be found here: endometriosis-uk.org/helpline - please do call anytime you need support x
Hi Amy, l don’t know which hospital you are with but l had partial hysterectomy in December then the hysterectomy completed 6/7 weeks later, My case was slightly different from yours as l was 76 years old at the time, the reason for the second op was a tumour found embedded in my womb lining when the tests were performed post op after first partial.
I have recovered really well after both ops, no after pain but my get up and go took the full 6 weeks to return. I would say place yourself in the hands of your attendant nurse they really are proficient and caring nurses and will happily talk you through what to expect. Myself l walked to the surgical prep room had a spinal anaesthetic before the mask and slept for about 7 hours, which is normal for me, and awoke pain free and walked to the loo unaided within half an hour of waking up.
I wish you all good things on your journey, if you would like to ask anything please leave a message here, l check my emails daily so will see if you do this
Alexa 🌸🌸🌸
hmm well being post menopause it was not such a shock to my feminine side, It took me about 6 weeks to feel up to anything like fully back to me but now l can do almost anything apart from lifting heavy things.
I am due to have cancer treatments soon when they have a space for me then am looking forward to hopefully being able to plan the rest of my summer.
I am so thankful for all that has been done for me with my second team and as l say bring on the treatment and l will take on the world 🤭
Take care and hope you are soon fully recovered and able to enjoy the summer we have been promised,
Alexa 🌸🌸🌸
Hmm it is brachytherapy, an internal vaginal device that delivers the ‘shots’ of radio, will take 20 hours, one shot per hour for which l have to lie still or at least not be tempted to lie on my side. It is not as aggressive as external radio with much less of a burning sensation, most people say they feel a little hot inside but not the sunburned effect.
I am only pleased that this will hopefully be my last treatment l am now 77 and looking forward to being able to plan ahead and not think of today so much. I am not afraid, yes a little apprehensive but that is just the quality of the unknown.
Truly hope your journey soon comes to the solution you are hoping for, all good wishes
Alexa 🌸🌸🌸
hi just checking in to see how you are travelling , did you have your treatment yet, if so l hope my words have helped you along the way
Alexa 🌸🌸🌸
hi Alexa, I’m so sorry, I thought I’d replied to you!! Oh wow, I’ve never heard of this treatment before! You are so inspirational and it’s great to hear this is your last treatment on your healing journey and you can live life to the fullest again!
My op won’t be for ages yet but all the research and inspirational stories from people like yourself are building my knowledge base. Thank you so much xxx
You are so welcome will bring you up to date once l have had the treatment. Stay healthy and l will, l hope, be back soon
Alexa 🌸🌸🤗
it would be wonderful to hear how you’re getting on. Big hugs to you, inspirational lady!! Stay safe and well xxx
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