post ablation syndrome

[Alicepirate]

hi I had adenomyosis and mild endometriosis giving me constant pelvic pain and bowel and bladder pain but could still manage to work and walk a reasonable distance. I had a ablation as had heavy periods and just wanted some thinking space and didn't really want hysterectomy so was hoping to manage adeno/endo pain another way.

After ablation 2 months ago am in agony hardly able to walk far or work since and it seems I am in the 3% of people who get severe pain after ablation called post ablation syndrome, I have been told pain will not get any better and hormones will not help so now awaiting hysterectomy in alot of pain. Does anyone else have a similar situation ?, many thanks for your help with this.

[IndigoBlue61]

I'm sorry you are in so much pain and discomfort Alicepirate 😕 It sounds dreadful.

I'm afraid I have no experience of your condition, but I hope you have your surgery soon and make a speedy recovery 😊

Best wishes

Anna

[Alicepirate in reply to IndigoBlue61]

Awe Thankyou 💗💗💗I can't find a lot out about post ablation syndrome pain relief etc and have a 2 month + wait for hysterectomy trying to be positive but it quite hard 😖

[mbal123]

Hi there I have the same but am trying pill before ablation and last resort historectomy , hope all goes well for you☺

[Alicepirate]

HI

My pain was constant but managable before the ablation but it's the ablation that's caused my extreme pelvic pain.

3 % of people get this after ablation but I think it is because of my adenomyosis I was more likely to get post ablation syndrome, on a lot of websites It says not to have ablation if you have adenomyosis or fibroids I have both and really questioned Dr before ablation but they said it would be ok I even wrote a letter before op asking to be totally sure and they said it's ok.....

now have constant pain and can barely walk and erratic bleeding have a friend who had ablation years ago for heavy periods and was really happy with result so I just unlucky . but even now when I look at ablation leaflet , I was given , this post ablation syndrome not meantioned so quite gutted to have mounting pain awaiting hysterectomy then a hysterectomy to recover from , but attempting to be positive now it's sunk in. 😖

Really hope pill works for you 💗💗😂

[Alicepirate in reply to Alicepirate]

Sorry that last emoji was meant to be a 😀 Not a 😂.

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I had womb ablation a month ago and still losing some blood. I have days where I have no pain then like last week shooting sharp pains all day in one area. Today I had what felt like period pains. The doctor removed a large fibroid which wouldn't stop bleeding and I stayed in hospital over night. I wished I'd had a hysterectomy and got rid of it. If you read the leaflet about womb ablation your back at work after a few days. I had 2 weeks off work, lasted 2 days, then back on sick leave. Totally fed up with it. 🙁

[Alicepirate]

I know I was expecting week off work worst case this was in December I had ablation and I still in really bad pain can only walk short distances got my US results from Jan and feb and my endometrium was 5mm then is 13mm in feb but I not getting any periods after initial bleed just some brown discharge so think it tissue growing behind scarring also have 3mm of fluid in uterus walls and 4cm fibroid and now 3.5cm haemaragic cyst on ovary ??? Not sure which thing is hurting thinking it the fluid and the build up of womb that's not shedding and those results were last month feeling more and more swollen sick of wearing pjs 😡😡😡😡 and pain doing anything .... and sick of moaning about it .....awaiting hysterectomy am desperate now it's been 3 months since ablation and I getting worse but hospital have been dire 😔😔😔😌 hopefully for you now they've removed fibroid you'll start recovering lots of people seem to be ok after ablation 💗 Hope you feel better soon . 😃

[Yippycayer]

I completely relate!! I had an ablation done in January and have been in pain since that just gets worse as the days and weeks go by. I found another OB/GYN who diagnosed me with Post Ablation Syndrome. He knew right away based on my symptoms and he did an examination that confirmed it. There is no cure or remedy to help it. I am scheduled for a hysterectomy next month and I can't wait for this hell to be over!! A hysterectomy is the only solution. What ticks me off is that the first OB/GYN kept treating me for bladder infections everytime I went to see him after my surgery. I went through 5 rounds of antibiotics for nothing and now I have digestive issues and issues with certain foods and liquids. I will never recommend an ablation to any woman ever! I'm sorry to hear the pain you're going through and know that you're not alone! This is serious and has affected not only my physical health but my mental health as well because I can't be active, I've lost my patience, I have a hard time staying focussed at work and it's difficult to concentrate when I have this constant stabbing and burning sensation and severe cramping and shooting pains. There really isn't a lot of information out there on this, as you said, we're in the 3%

[Alicepirate in reply to Yippycayer]

I've had full hysterectomy and no improvement to symptoms in fact it all worse so be really careful , everything they took out was 'normal' although I'd been told otherwise and bowel and bladder pain worse I am 8 weeks post op and its horrendous. Make sure it definitely the right option the ablation seemed to cause bowel and bladder issues that haven't been resolved by hysterectomy I really though this would help but t hasn't they say it's nerve pain now caused by ablation so be really careful. I was desperate for relief and it's not come I know we're all different but make sure that your womb has issues that will be resolved by hysterectomy and it's not nerve damage or pain caused by nerve pain. Nerve pain is awful.

I the same housebound almost barely working really down usually active and busy but just stuck and hysterectomy has made things worse for me , obviously we all different but yep I have all the digestive stuff and bowel and bladder pains and issues and now I in menopause too . I making official complaint which is really draining too and whole thing is so awful I really feel for you I though hysterectomy would definitely help but it really hasn't .

Awe I really don't wanna worrying saying this but really don't want anyone to end up in my position so ask endless questions and try some nerve meds before op maybe . I hate the nerve meds and don't take them often because of side effects but if I know it's nerve pain stuff less scared..... although just having SeHcat test so that could be the issue too anyway bile acid malabsorption???????its such a mess I have asked questions wrote letters to questions stuff and Still 😡😡😡

Anyway good luck I really feel for you 💗💗

[MrsB101]

I have had a hysterectomy many years ago, but suffer from Sacroiliac Joint Dysfunction. Have been treated by Pain Mgmt Doctors for 24 years because of a fall from a ladder while holding 25lb watering can and came down stiff. I've been told that I damaged the tendon and ligaments in my low back. Recently I had RFA for the back pain that I have experienced since the fall. A few hours after the ablation I lost all control of my bladder and it continued for 4 days. After the 4 days the pain in my bladder got very bad and that pain has continued since then. I was admitted to the hospital and spent 3 days there and no diagnosis was made. No infections was found. Pain Mgmt doctor claims there is no possibility that the ablation caused the serious pain. So now I'm left with not only the S/I Joint back pain, but now severe bladder pain especially after urinating. Any advise would be most appreciated.