A thread to discuss all things relating to endometriosis and adenomyosis and give eachother advice and support @chattycatty
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Thanks for this!! Is anyone knowledgeable on endometrial ablation and adeno? I’ve read lots of things that say it won’t help and could potentially make it worse?
The consultant last week said this is my next step as I refused the coil. Now wondering if I’ve not made the right decision, I’ve been on microgynon to get to this op and lost some weight.
I’ve got to go and have a polyp removed under general anyway as was too big last week at my hysteroscopy so could just have the coil then instead?
The consultant last week said this is my next step as I refused the coil. Now wondering if I’ve not made the right decision, I’ve been on microgynon to get to this op and lost some weight.
I’ve got to go and have a polyp removed under general anyway as was too big last week at my hysteroscopy so could just have the coil then instead?
Hey, I had ablation 6 years ago and it really helped with my periods as at the time I was flooding off my feet so now I don’t have a bleed but my pain is unbearable still. Just been seen by a consultant from st Mary’s in Manchester really nice endo specialist sending me for a mri scan as he now thinks I may have adenmeosis as well xx
Yeah that’s my worry. The adenomyosis still has to shed every cycle like endo so it doesn’t resolve that pain. I asked for a hysterectomy but they won’t do it yet until I’ve tried other options.
I feel like i’m/they’re just delaying the inevitable. I think I may just ask for the coil instead and see how that goes. Though I think it also may depend on the biopsies I had too.
I’m glad you’ve got a nice specialist who is willing to investigate more. Have you seen him before? Im yet to see the same person twice!
Fingers crossed the mri goes well!
xAw I feel for you it’s such a horrible disease to live with.Yeah that’s my worry. The adenomyosis still has to shed every cycle like endo so it doesn’t resolve that pain. I asked for a hysterectomy but they won’t do it yet until I’ve tried other options.
I feel like i’m/they’re just delaying the inevitable. I think I may just ask for the coil instead and see how that goes. Though I think it also may depend on the biopsies I had too.
I’m glad you’ve got a nice specialist who is willing to investigate more. Have you seen him before? Im yet to see the same person twice!
Fingers crossed the mri goes well!
I’ve been under 3 different hospitals in 15 years I want to cry some times. At least this guy wants to help and look further it to it. With my age he’s suggesting now just get a hysterectomy but is going to do a mri see what comes on and maybe put me back on zoledex for a while
he did surgest the coil but I don’t no.
How was your hysterescopy? I’m having one soon under local for some investigative work and to remove a copper coil and replace with mirena (I think it’s called?)
I’ve had laperoscapies before which confirmed PCOS and endo but hoping this helps as don’t want my ovaries out
It was honestly all fine until it came to take the biopsies of the polyp and uterus. I also agreed to let a student teacher try it and she honestly must’ve taken about 15 minutes to get through the cervix. The water thing is weird and it triggered a massive shoulder pain afterwards which is quite common but the procedure itself was painless and that’s without local.
Whatever camera they used was too small to remove the Polyp so having to go back. Weird to see it all on the screen though too.
I think I’d be having the mirena, what was your experience of the copper coil?
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I know there’s lots of horror stories but they’re like reviews aren’t they, for every one tit experience there will be 20 amazing ones nobody can be arsed writing a review about!Aw I feel for you it’s such a horrible disease to live with.
I’ve been under 3 different hospitals in 15 years I want to cry some times. At least this guy wants to help and look further it to it. With my age he’s suggesting now just get a hysterectomy but is going to do a mri see what comes on and maybe put me back on zoledex for a while
My adeno was diagnosed through a trans vaginal and ultrasound scan, I presume an MRI is much more detailed?
15 years is horrendous I’m not surprised you want to cry. I’m on 10 years and a (male!) GP once said to me ‘what do you want me to do about it’ when I said I was buckled in half in pain during my periods. I suspect we’ve all have very similar experiences in trying to get and help and diagnosis! My heart goes out to you x
Copper coil has been great you know, almost 10 years no issues but because of the PCOS and endo the consultant thinks the hormone is needed to shut the ovaries down. I’ve only recently started having issues again so I do feel really lucky. Just dreading a needle in the cervix
Wow I would have gone mad how dare he. It took me years to get diagnosed I moved surgery’s and the gp was a female let’s just say I’m forever greatful for her she saved my life
she’s retired now but of it wasn’t for her 6 years ago I don’t know where I would of beenSo I got a call from the hospital today for my date for polyp removal and ablation! Had a missed call initially and panicked they’d found something in my biopsy but they’ve said nothing.
Pre Op next week and surgery 29th March! I’m still not sold on the ablation being good for the adenomyosis.
I’m also going back on Microgynon as I felt quite good the last couple of months on it and a very light period when I stopped.
Mr Slidders has also been doing some reading and is possibly going for a vasectomy at Christmas because he’s worried what would happen if I fell pregnant. Between that and the contraceptive, I think we might have all bases covered!
How is everyone else getting on?
Pre Op next week and surgery 29th March! I’m still not sold on the ablation being good for the adenomyosis.
I’m also going back on Microgynon as I felt quite good the last couple of months on it and a very light period when I stopped.
Mr Slidders has also been doing some reading and is possibly going for a vasectomy at Christmas because he’s worried what would happen if I fell pregnant. Between that and the contraceptive, I think we might have all bases covered!
How is everyone else getting on?
I had the ablation 6 years ago my periods where awful before and after they disappeared so hopefully it will work for youSo I got a call from the hospital today for my date for polyp removal and ablation! Had a missed call initially and panicked they’d found something in my biopsy but they’ve said nothing.
Pre Op next week and surgery 29th March! I’m still not sold on the ablation being good for the adenomyosis.
I’m also going back on Microgynon as I felt quite good the last couple of months on it and a very light period when I stopped.
Mr Slidders has also been doing some reading and is possibly going for a vasectomy at Christmas because he’s worried what would happen if I fell pregnant. Between that and the contraceptive, I think we might have all bases covered!
How is everyone else getting on?
He’s a hospital you going to xx
Queen Mary’s, slightly nicer than my local one!I had the ablation 6 years ago my periods where awful before and after they disappeared so hopefully it will work for you
He’s a hospital you going to xx
Great stuff hope it goes well
Hi ladies,
I’m looking for some advice. I suspect I have endometriosis and I am seeing a specialist tomorrow.
I have had horrific pain bleeding etc etc for over a year now, I saw another specialist last year who diagnosed me with a couple of cysts, acted like it was no big deal and completely brushed me off and acted like I was making up my pain/symptoms. She also didn’t do any other diagnostics just a transvag scan.
I’m still having the same symptoms and I know it’s more than just a cyst causing me an issue.
I just wondered if you could give me advice on what to ask at my appointment.
Really hoping my symptoms are taken seriously this time!
TIA
I’m looking for some advice. I suspect I have endometriosis and I am seeing a specialist tomorrow.
I have had horrific pain bleeding etc etc for over a year now, I saw another specialist last year who diagnosed me with a couple of cysts, acted like it was no big deal and completely brushed me off and acted like I was making up my pain/symptoms. She also didn’t do any other diagnostics just a transvag scan.
I’m still having the same symptoms and I know it’s more than just a cyst causing me an issue.
I just wondered if you could give me advice on what to ask at my appointment.
Really hoping my symptoms are taken seriously this time!
TIA
Hey, sorry you’re feeling like this I understand what you’re going through.
Try push for a lap because scans can’t be 100%
ask first for a mri scan with thedye but do push for alap as this is the only way to be sure you have endo!
It took me over 10 years to be diagnosed as I’m getting older pain is worse. The only time I’ve ever felt good was when I was on zoledex. But defo push for a
Lap xx
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If all else fails ask to be referred to different hospital
who you under xxThank you so much. I was reading about a lap, my mum was diagnosed at menopause and it affected her bowel, so it’s on my mind to push them.Hey, sorry you’re feeling like this I understand what you’re going through.
Try push for a lap because scans can’t be 100%
ask first for a mri scan with thedye but do push for alap as this is the only way to be sure you have endo!
It took me over 10 years to be diagnosed as I’m getting older pain is worse. The only time I’ve ever felt good was when I was on zoledex. But defo push for a
Lap xx
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If all else fails ask to be referred to different hospital
I’m lucky enough to have private healthcare through my partners work so seeing a different specialist this time. He’s a specialist in endo and pelvic pain so hopefully he won’t just do a transvag and leave it at that.
I also find GPS so dismissive, it’s your age (38) it’s your coil (never caused me any problems), so frustrating.
Well I’m currently sat in recovery waiting to be discharged after the procedure. I had my polyp removed but the ‘cavity’ ( I presume they meant the uterus!) was too big for the ablation. Now knowing that I had adenomyosis and my uterus is 3x it’s normal size, I’m not sure why they recommended me for it. It’s all done via a computer apparently and I wasn’t a candidate. Bit disappointed.Great stuff hope it goes well
So now they’re back to talking about a coil. Big fat nope. Follow up in 6 weeks!
As an aside, my polyp was apparently so big it was constantly rubbing against the walls of the uterus and that was what was causing my constant bleeding so that might be one baby step to getting better at least! X
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I’d ask to check for Adenomyosis too. Symptoms are very similar to Endo but it’s easily picked up via ultrasound if they know what they’re looking for ( bleeding in the uterine walls/ enlarged uterus etc) x
Hope you’re seen to soon and can get started on some treatment x
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Hope you have a speedy recovery
ahh nightmare that tho xx
i’m having a diagnosis laparoscopy on Tuesday for suspected endometriosis. i’ve been going to the doctors about period pains since i started my period aged 11, i’m now 21. i’ve ended up in a&e so many times but was always ignored. as well as countless scans, blood tests, gynaecologist appointments and was always told i’ll grow out of it. finally, a year ago i saw a gynaecologist who was very kind and understanding and put me on the waiting list for the laparoscopy to confirm whether i have endo or not.
i’m feeling a bit nervous.. i will be on my period during the operation which will make the pain ten times worse (i asked the healthcare providers and they said it was ok for me to be on my period…). does anyone have any tips for the recovery period? i heard the trapped gas is the worst so i’ve bought peppermint tea and will be using that, as well as slow movements.
also, how long does recovery take for a surgery like that? i’ve been reading different answers everywhere, from a day to three weeks! i’m quite ~weak~ i get tired really easily and don’t cope well with pain so i assume it might take me on the longer side to recover..
i’m feeling a bit nervous.. i will be on my period during the operation which will make the pain ten times worse (i asked the healthcare providers and they said it was ok for me to be on my period…). does anyone have any tips for the recovery period? i heard the trapped gas is the worst so i’ve bought peppermint tea and will be using that, as well as slow movements.
also, how long does recovery take for a surgery like that? i’ve been reading different answers everywhere, from a day to three weeks! i’m quite ~weak~ i get tired really easily and don’t cope well with pain so i assume it might take me on the longer side to recover..
Hi, I thought I would update .. I had my surgery and they found no endometriosis. I’m not sure what to do, I was told for years by doctors I had it and wanted this surgery to basically confirm it, the results said they found nothing that everything was fine, just that I had a large womb for my age.
They recommended me to see a bowel specialist and said it could be IBS (I’ve been tested for that a few years back and it was negative along with celiac)
I’m not sure what to do next!