Hi everyone. As like most of us on here I have been suffering for many years. I decided after much consideration to pay for private treatment. I have had to borrow the money to pay for this but I know if I hadn’t that I would not have been able to continue with my full time job so would have been without my income.
I am 9 weeks in from total hysterectomy due yo adenomyosis , ( I had already had BSO last March), bowel shave, ureterolysis and excision of rectovaginal endometriosis including uterosacral ligaments. I am feeling so much better endometriosis wise after this surgery even though I have had a uti and vaginal vault granulated tissue. These have both cleared now after having 2 rounds of anitibiotics.
My question is for those of you that have had similar surgery, did you suffer any lower back pain and pelvic/low abdominal pain 9 weeks plus after the op. My surgeon was very thorough and removed all Endo that was present, along with a remnant of an ovary, so I am not querying that this is Endo pain but not sure what to expect and is this normal recovery pain? I am also still feeling extremely tired and washed out. I appreciate that perhaps in my recovery it is early days but I feel a bit alone on this recovery journey so wanted to reach out to fellow fighters of this horrible condition. I know this question can not be definitively answered but are the chances good that my endometriosis journey is now over?
Thanks in advance to any of you that can offer any insight and advice.
Xx
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Sandygirl6697
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Hi Sandy, to feel washed out for several weeks post op is not to unusual depending on metabolism and how much we are expecting of OURSELVES 🤗.
I myself had partial hysterectomy followed 6 weeks later by completion of hysterectomy due to cancer being found embedded in endo when first post op labs were done. I am 77 years of age and yes the first 6 weeks l was almost useless, but have just this last week spent time in the garden doing gentle task like transplanting tiny plants from pots to the garden, with the support of my canvas picnic chair and only using a small hand rake and trowel.
Enough of me, if you would like to pick my brains or simply off load to someone l come here at least twice a week
Hiya Alexa thank you so much for responding to my post and I’m so sorry to hear that you have been through not one but two ops so quickly and that the second op was due to cancer being found. This puts my recovery into context after what you are recovering from. I think because my surgery incisions healed so well and quickly I expected that I was completely healed throughout so was thinking I should be back on my feet. But enough about me, how are you doing physically now? You have had a very rocky road to deal with ❤️.
Many thanks also for reassuring me that there is someone who will listen to me. Likewise I’m here for you too ☺️.
Hi, yes sometimes we do expect to much of ourselves roughly speaking a laparoscopic surgery takes around 6 weeks to heal internally, that is why they tell you not to drive for that period of time, Also when travelling by car it is advisable to place a cushion between yourself and both straps of the seat belt.
I am feeling fairly well in myself thank you and now doing some very gentle gardening to get me outdoors. I have planted flower seeds in pots and taken a picnic chair outside so l can sit at the side of my flower border and using a small hand rake do a little weeding ready for when the plantlings are ready to go outdoors.
Please be patient with yourself and add a little more activity to your routine over the healing time.
Sorry I can't offer anything to your question, just hopping in to follow your post as I have have a date for 1st July for a total removal, like you I've gone private. So I will also be interested in responses on here.
I really hope you start to feel brighter soon! Just keep reminding yourself you have had major surgery and take it easy!
thank you for replying to me. Fingers toes and everything crossed for your op. Let us know how it goes. The care I received during my treatment was fantastic and although it’s a lot of money to find if you don’t have Healthcare Insurance, which unfortunately I didn’t, I think my wounds and healing process from the op was probably speedier due to this.
It really does help to read others posts on here doesn’t it, although everyone of us has our own struggles we can all help with talking and supporting each other through telling others how we have felt and are feeling. Already with the responses I have received I feel less isolated but also realise that although the healthcare and treatment we receive is very important we are all mostly left to our own devices during recovery so reaching out to each other is priceless. I’ve felt that I should have been up and about sooner as outwardly (and to some people) although I’ve had major surgery the Endometriosis is gone so I’m better.
Sorry to hear you are feeling alone, I agree that we put to much on ourselves to recover quickly when what our minds and bodies have been through so much.
I am 7weeks post op also and have been embracing the freedom of not doing anything! I started to suffer with back pain but put this down to being quite immobile, I was sleeping a lot to start with. I have found gentle stretching and pilates (YouTube post hysterectomy) and lots of walking has been great for both mind and body! I've also been to see a pelvic physio this week who was brilliant and helped stretch out the internal workings, which are consequently tight from years of fighting and contracting! You may be lucky if your health service provides this but again I paid privately for this. Our pelvic floors have taken a battering so time to give it some love 💕
Thank you so much for coming back to me, your reply is so interesting to read. I hope you are recovering well and are feeling the benefits of the surgery ☺️
I found I did sleep a lot but still get very tired now. I have been doing some exercises that the physio at the hospital gave me and also as soon as I was able I started to take short walks, getting gradually longer, but I will look at the YouTube video and also look into Pelvic Physio, after reading your post it certainly makes sense that everything inside is very tight after years of being pulled in all sorts of directions .
No worries! I think the other ladies comments picking up on thrush and cystitis are really important too, currently looking into probiotics to restore everything that's wiped by antibiotics x
How did you do your groceries, cleaning, cooking, etc? Did you get some help? Were you paid (wage) anything during your recovery time? What about if you don't have anyone to help you around? Do you need to go to palliative care if you don't have anyone around you (no family left or I don't know) during your recovery time?
Hi there, I am 15 weeks post surgery, I had a total hysterectomy following years of Endo pain and 2 laparoscopic ablation procedures. Following a private consultation at a specialist Endo clinic I was diagnosed with adenomyosis and deep infiltrating endometriosis from an MRI scan. I decided to have the hysterectomy due to my age (52) I had also been struggling with menopause symptoms and HRT wasn’t really an option with Endo present. Also my mum is currently being treated for ovarian cancer so it mitigated that risk for me too.
I am just about feeling back to my pre op energy levels. Recovery took longer than I was expecting and I have had some lower back pain and twinges of lower abdomen pain. I’ve also had a couple episodes of thrush and symptoms similar to cystitis along the way. I started using HRT gel about 8 weeks post surgery and that has really helped.
My advice is to give yourself plenty of time to fully recover, don’t overdo it, 9 weeks is still very early days. Be kind to yourself.
Hiya, my story is so similar to yours. I am about your age too and everything you have said resonates through. Even along with a family member having had ovarian cancer. I really hope your mum’s treatment is going ok, and that she’s getting all the help she needs to this ♥️
The back pain and twinges of abdominal pain sound very similar to my pains also. I suppose having a UTI which needed two rounds of anitibiotics hadn’t helped so I need to be more patient in my recovery. I think because healthcare professionals say recovery from the op is 6-8 weeks I expected I should be well on the way to being recovered by now, I think it’s an expectation from their words that I should feel “normal” again now.
I have had a discussion with my gp regarding HRT, she disagreed with my consultants suggestion of combined as she said guidelines say that when you no longer have a uterus you should have Oestrogen only, I explained why this isn’t the case and my consultant has written to her about this but I will ask about gel as I feel very sore. This was partly due to the tissue that was growing from my internal stitches, which has now thankfully gone, but I still have some soreness so this may help.
Thank you so much for your advice, this has helped me so much. Advice from fellow fighters is so much better than any leaflets and books. I hope your recovery will now be ok and that your mum s recovery goes ok.
hi i had to battle to get an appointment and my pain is now constant pain strong pain killers dont work it so i am waiting on a paln from gynae finally got one 10months after my last appointment i would.like to have a plan of total hysterectomy just cant take this pain but my local hospital is 1 year plus for surgery have a telephone call in june hoping for some.answwrs
Hi unfortunately my pain had become so bad that I would not have been able to carry on working. I made the decision to have a loan to pay for private treatment which I will be paying for a long time to come but I had to weigh up either not working and being far worse off financially or finding the money to pay.
Fingers crossed your get some answers and progress at your telecon appointment. All the best x
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