I am booked in for an endometrial ablation I am 41 have confirmed adenomyosis and endometriosis removed in april from left uterosacrial ligament, uretor and rectum all superficial nodules removal of endo has made no different at all to pain, bowel and bladder pains and problems have been worse since lap , so was booked in for hysterectomy but very unsure as gyne and gastro has said hysterectomy probably wont help bowel problems which is my main issue really so have put hysterectomy on pause for a bit. Also since lap periods been horrendous theyve always been heavy but now they are ridiculous anyway was offered a endometrial ablation so I am booked in for it in December. For an afternoon op using the hot liquid under general home the same day?? I know it should lessen blood loss but not period pains is this right ?? Has anyone had one and have any advice about recovery and effects of it.
many thanks
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Alicepirate
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Did you have the liquid one or the microwave one? I do have adenomyosis confirmed and was on the list for hysterectomy but live alone with teenage child at the moment with no family around, a hysterectomy is going to be very difficult as I'm self employed too so will have no income at all during recover so was hoping to hold it off by having the ablation. I don't have severe endo just superficial nodules which in theory have been removed in April but I had no change in symptoms after lap removing these in April have just got slowly worse . I'm not sure now if I can ask to be referred to bgse as I don't think I come under their criteria , will have to check it out, the consultant I'm under is a bgse consultant but I haven't seen her for ages she's on my letters but when I get there it's someone else , I know I should insist I suppose it just very difficult managing everything . I don't want to take hormones so not sure what other options I have apart from ablation or hysterectomy or put up with it ....... but getting so skinny from the bowel and bladder issues life is very difficult . 😬😬 sorry for the moan .
You are not moaning so please do not apologise. I am a single parent too with a teenager and work part time so I understand how hard things are for you. I had the microwave one and a lap at the same time for endo but he told me I had hardly any endo. This was a general gynaecologist. I developed awful right sided pain immediately after the abalation and two months later he discharged me saying it was in my head. However during one of my admissions via A&E with the pain a doctor suggested I see an endometriosis specialist. I had no idea what this was so asked GP and doctor friend. I was referred to a bsge centre and had a uss. I had a lap and removal of right ovary and tube.as he found significant deep patches of endo everywhere which general gynae somehow did not see. Adenomyosis was also suspected. Still had awful right sided pain. Tried four months of prostap with no hrt back up. Felt so awful on these. Still pain so had complete hysterectomy 9 months ago. Right pain gone but currently having other post op problems.
In your case I would ask for referral to a bsge centre. General gynae are not properly trained to treat endo. I wish I knew about this before I had the Novasure. Also I would advise researching a bsge consultant then decide who you want to see. Your history suggests you need to see a bsge specialist. You can't be left in pain or loose more weight. There is a lady in here called Lindle who can help you and she has a endo Facebook page with files full of guidelines etc. Always happy to chat as I know how hard it is for us single mums x
Thankyou so much they doing mine with the water balloon thing, but researching it it says not good for deep adenomyosis so I need to check out what mine is adenomyosis showed up on biopsies so must be some info about that in my notes although lap was done on the nhs but at a private hospital and have all my notes from there but they really not very good on admin and lots of information missing but they say they have nothing else on me. STill with same bsge consultant but at different nhs hospital it all very confusing think I just need to be brave and request bsge referral maybe go and see PALS to help me. Still not sure about ablation as appointment in December just for ablation so even if done by normal gyne and if it can hold off the bleeding a bit so I can my iron levels back up and in good shape for a hystrectomy and endo excision . The liquid ablation reviews seem to mostly complain it didn't help I imagine it just going to be a stop gap before hysterectomy ????? I just don't know just want a little fix a few days feeling a little better 😧😧😧 but don't want to make stuff worse..........
Thankyou so much for your reply sorry to hear you've had so much pain and difficulty to fight through but Thankyou so much for you advice it all really helps even though I just want someone to say yep that's what you should do 😂😂😂
but it just not like that with this illness the research and working out what's right for you is the most hard thing 😳😳😳 but Thankyou for sharing with me hope your're having a pain free weekend if you don't mind me asking did hysterectomy sort out most of the pelvic pain and did you have it at bsge center?
I don't mind you asking me anything. The Novasure and lap (my 4th) was my a gynaecologist on the NHS. Was a total nightmare! I then saw bsge Consultant privately at a Nuffield hospital then managed to get both ops with him done on the NHS but at the private hospital. The nursing care was mostly very poor. I am still upset about some of the 'care' I received. Anyway i had one ovary and tube out and excision of endo April 2015 and the hysterectomy -uterus, tube,ovary and cervix out Feb this year. My tube and cervix were fine but he insisted on removing them in case endo returned. Post op I was discharged with uti but they wouldn't test my urine even though I had to be recatherised after op. I then got ecoli in bladder resulting in a 999 admission to A&E. stayed overnight. Needed Three weeks of oral antibiotics. I have had two episodes of vaginal bleeding due to a vault haematoma. Consultant still discharged me in August knowing I had pain. I have left 'ovary' and vault pain radiating down and round to back affecting nerves. Recent scan showed free fluid in this area which is just inflammation. The pain in the right I had before the op has gone. This was where the uterus was tethered to pelvic floor. I still get the odd niggle but definateky much better. I think there is surgical damage to my left as never had this pain before the hysterectomy. Was suppose to see Consultant last Thurs but he cancelled my appointment. He doesn't care. He told me last year that if he takes everything out and a lady still has pain the it's not his problem.!! But my problem is as a result of his surgical skills. I am back in pain killers and really struggling with work and being a mum. It's hard isn't it. It's nice not having periods though so I do sympathise that you are really struggling and feeling awful. Where about do you live? 🙂
Oh no really sorry to hear all that what a nightmare my lap at the private hospital on NHS was not good too pre op on the phone the day before ?? I had to do big enemas at home and was asked to do own enema when I got to hospital ??? with no proper instructions, discharged unable to wee and vomiting in hospital lobby ?? 'aftercare' nurses would only give me paracetamol after lap as they couldn't contact a doctor ???? no drinking water couldn't get on and off bed and they just stood there ignoring me like they could hear me when I asked for help, pain relief or water was very odd as I really hate asking for help and I happy to manage when I can but just couldnt . Food was ok though thats about it.......I ended up back there twice as they didn't do a urine test before op and I could wee still the next day properly , luckily my actual op ok just the care awful so have been referred to NHS hospital under same consultant but think the hospital just dont interact and results of first lap haven't been written up in an NHS way. I've not even been examined since lap April as 'nothing will have changed' , I'd like to think they know what they doing and it all for the best .......but you just come out look up what you've been told and think wtf then wait forever for another appointment ?????
Sorry to hear of your awful treatment maybe it just NHS patients in private hospitals get bad treatment it so difficult because you almost feel like you shouldn't be there and don't think we would have put up with that sort of 'care' in a NHS hospital I rang PALS for support but they couldn't help because it private even though we are NHS patients.
So awful how you've been treated by your consultant that sort of language just isn't right, even if they said they just don't know what the matter and they'll keep you on the books until they do or maybe time will resolve it or anything but they seem so keen just to pass us back to our GP then we'll only have to start getting referred again after a hysterectomy especially with complications it would be sensible to see you for a while to make sure all is well and settling down. Have you had any pelvic physio my friend has had a hysterectomy in Feb for bowel issues so different but has been referred for pelvic physio which sound like it may be helpful maybe after surgery to help with pain. i was even thinking of finding one before hysterectomy to strengthen and relax muscles in that area.
It really isn't the most sociable of illnesses, thank goodness for the internet otherwise we'd all be suffering alone or sat in the library 24/7 trying to work out whats the matter
You can ask to be referred to BSGE clinic at any time so make sure your GP does. Or sounds like you are already with one but not seen. Insist next time on seeing them or a colleague who is BSGE accredited.
If your endo was removed by ablation before, rather than excision, it could still be there. Unfortunately it doesn't removal all of it only what they see.
I don't have Facebook but I have looked at the bsge stuff she has put on this site which is really helpful I am under a really good consultant who is on the bgse council so was happy about that and she did the lap and the endo was removed by excision but some could have been missed , but after lap consultant advised me to have an hysterectomy as "swollen sore uterus pushing on bowel and bladder " I just am not really in position to have no income for a while and son in gcse year etc so needs support and am worried to have it at the moment was on waiting list and have had pre op asses,ent for it and everything but gastrotrologist has said hysterectomy will not help bowel issues urologist I finally seen a few weeks ago is worried I may have kidney stones so awaiting test results and a cystoscopy so have had to halt hysterectomy until everything else is checked anyway. So was hoping the ablation may hold it off for a year or two as blood loss since lap during period is crazy heavy like 12ml every couple of hours day and night for 5 days during last period. Just sick of being ill all the time and just Lots of conflicting views it's very tricky.
I can see the ablation not that helpful and can cause problems if adenomyosis is deep not sure of the situation with mine, I just trusted the gyne when I halted the hysterectomy and was offered a ablation that it would be ok for me , the adenomyosis showed on biopsies during lap but the
Not sure what to do at all was really happy when was given my consultant as had researched it , but it always someone else when I get to appointments now and I feel so rubbish and go on my own it really hard to insist , bsge center is far away so not sure how I could have any treatment there and will require another long wait but will ask for refferal.
It just exhausting all the research and double checking everything I'm told, Thankyou some much for reply
That's fine. Sorry it's all so tough. I know a little of that as I'm single and had my hyster in Feb 2015 and been in worst pain since. I had mine due to endo and adenomyosis and it at least stopped all the heavy bleeding. So I feel better for that. Itoo always have to push for appts and to get what I need and I'm always on my own and it's just tiring and wearing. I hope you can get some good advice and help.
Another website to try is the hysterectomy associations website as useful advice and support about options and plenty of people to chat about choices.
Awe Thankyou sorry you in so much pain has it been a bit better for you since hysterectomy , did you have it at a bsge center ? Is the care and support a lot better or do you still have to really push and research stuff yourself? The NHS seems so pressured at the moment seems so difficult for patients and staff and the way they do the admin and refferals seems crazy I live on a county border and so the notes from one hospital or GP can't be seen in the other county so urologist , gyne and GP can't see each other's notes. I get copies of everything and take them to appointments now but it just ridiculous. Think I just need to grit my teeth and ask for referral to bgse and just wait it out , but may have the ablation first just to get my iron back up ......
will check out the website thanks for your help hope you get some answers soon
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