What is your experience of novasure endom... - Endometriosis UK

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What is your experience of novasure endometrial ablation?.

NikkiJR profile image
NikkiJR
•28 Replies

Hi 😊 I've had a crap time with endometriosis (like everyone here) Im due to have bilateral endometriomas removed and ablation followed by Mirena coil (privately).

I've heard mixed things about both the mirena and ablation. I have advanced endo but luckily my pain levels don't reflect the damage, My main goal from this is bleeding reduction or stopping my period completely.

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NikkiJR
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AllthatGlitters profile image
AllthatGlitters

hello I have had endometrial ablation twice. It was for very heavy periods which would go through my pad and clothing onto seats etc ….. the pain after the rocedire for me was horrendous as I was on tramadol for 10 days afterwards. However I am sure this is it the case for everyone and I know 2 other women who were on the ward with me, were up and eating and then home soon after the procedure. It has helped with my heavy bleeding and I have slight bleeds (I am on HRT too so think this helps my bleeding). Good luck, it’s one of the best things I have done to help my endometriosis and adeno x

NikkiJR profile image
NikkiJR in reply to AllthatGlitters

That's good to hear. I feel your pain with the ludicrous bleeding. I take tranexamic acid on my heavy days which really helps. Doesn't get rid of pain or bloating though.

AllthatGlitters profile image
AllthatGlitters in reply to NikkiJR

I was on tranexamic acid too, your right it doesn’t get rid of the pain and bloating x

Polina44 profile image
Polina44

Hi,

I had a Novasure ablation last year which stopped the massive clots but still not good so hoping to try ablation by balloon method . I do however have a fibroid. Also on recent ultrasound they found a lesion attached to ovary and uterus so had MRI. Waiting for results back can then go back to consultant. But I’m wondering if another ablation will even work as the fibroid still remains from before first ablation. I’m also wondering if this lesion is perhaps endo? I guess I’ll have to see what they say. I did worry it was something sinister but the more I think about the pain I’m in the more I’m thinking endo.

Never had coil. Hormones don’t work for me plus I have SLE.

Good luck with whatever you chose. One thing I can say the procedure for me and recovery were fine.

Lx

NikkiJR profile image
NikkiJR in reply to Polina44

Thank you hun. Hopefully your lesion is just endo. It sounds like it where it is positioned. It's horrible waiting for news though as it all you think about. How come they didn't remove the fibroid before ablation? X

Polina44 profile image
Polina44

I think the fibroid was trapped in the lining. So probably thought a blasting would make it go? 🤣

I’m fed up being a woman. I’m coming back as a boy dog. Sleep eat repeat!

L x

NikkiJR profile image
NikkiJR

Hahaha oh god me too.

Avourneen profile image
Avourneen

Ablation is only the recommended medical treatment for very mild endo. If you have ablation and severe endo it will only make a difference for a couple of months. Also that i snational medical guidance so your gyane even suggesting ablation for advanced endo gives the impression he is definitely not an an endo specialist. I'm sure Lindle on here has a copy of the guidelines. If I were you I would try to get referred to a different gynae you dont want to go through the op then have to have another within a year. The biggest problem is if you have it ablated it will not stop it growing at all, and you will have advanced endo having spread a lot more.

Mimi555 profile image
Mimi555 in reply to Avourneen

I think you have things a bit mixed up. Endometrial ablation is a diff treatment to ablation of endometriosis, this is for the womb lining, specifically to treat very heavy bleeding.

Avourneen profile image
Avourneen in reply to Mimi555

Ah that explains things I stand corrected but if Nikki has advanced endo ablation is not generally considered a suitable treatment because advanced endo is not just heavy periods it is endo growing heavily on the pelvic organs and gluing them together. Reducing the thickness of the lining of the womb would not help at all with that. Nikki have they told you which stage endo you have and whether it is DIE ?

I think ablation is only recommended for stage 2 and below and excision is the recommended treatment for advanced endo. You need to ask your gynae what stage you are and get an MRI to see where the endo is. Mimi do you see my point Nicki says she has severe endo and ablation while it would help with heavy periods won’t stop or even slow that down.

I know this because I had a similar treatment by and inexperienced gayness then when I was still in terrible pain I saw a different gynae and he said that ablation was completely the wrong treatment it hadn’t helped my endo and it had spread a great deal and I needed excision. He explained the first op was a complete waste of time.

I think it is worth getting it checked out and maybe a second opinion.

Mimi555 profile image
Mimi555 in reply to Avourneen

hiya, yeah. They are diff treatments and need to be considered separately to treat diff issues. The endometriosis needs proper excision. That’s what I’ve had surgically in the past for mine. The novosure endometrial ablation is a great option to help manage excessive bleeding, anaemia etc and generally how that impacts quality of life.

I’m really sorry you had the wrong treatment, it’s such a nightmare getting the help you need.

I’d be really hesitant to recommend the progesterone only pill at double dose. This is progestin based not micronised progesterone and can have its own set of issues.

Avourneen profile image
Avourneen in reply to Mimi555

Thanks for clarifying that it is very easy to be treated incorrectly and even to have an operation that really doesn't help only to need more work further down the line.The double dose of progesterone is what my gynae and a lot of gynaes recommend. It's not ideal but it does stop the bleeding but I have been told recenty there is a better option. But it's pretty standard to prescribe if you bleed heavily on the single dose.

Avourneen profile image
Avourneen in reply to Mimi555

nancysnookendo.com/why-exci...

NikkiJR profile image
NikkiJR in reply to Avourneen

So I'm having laparoscopic removal of endo along with ovarian cysts removal. The coil is to slow the growth of new implants. The ablation is just for heavy periods in my case. I asked for it, it wasn't recommend to me as a first line treatment, the coil was, I don't want another child and I'm trying to avoid the months of bleeding that comes with mirena alone.

Avourneen profile image
Avourneen in reply to NikkiJR

Okay that sounds a bit better as long as they are actually taking it out and not just leaving the endo in and burning the top off. I hope it goes really well, I wasn’t trying to be negative it just so hard to get proper treatment for endo and I wouldn’t want anyone to go through a useless procedure that wouldn’t help and then need another op again.You can take the progesterone only pill at a double dose instead of the coil that stops periods pretty well. I hope it all goes well but don’t be afraid to really find out why your doc is doing things and choosing one treatment over another. Good luck in having another baby too hope it all goes really well. I would DM Lindle if I were you she has really good knowledge of all the treatments and medical options. Best of luck.

NikkiJR profile image
NikkiJR in reply to Avourneen

I thought thats what you meant. Yeah I think it's excisional. You've just prompted me to ask 😊. Don't worry about seeming negative, I only want honest responses as it's quite a big thing to go through. Thanks. Also I didn't know about double progesterone pill. That's an option if I don't get on with the coil.

Mimi555 profile image
Mimi555 in reply to NikkiJR

I opted to not have the Mirena coil put in after my endometrial ablation as although it’s low dose compared to the progesterone only pill and also releasing in the womb area the mirena is also progestin based rather than micronised progesterone. It might be worth asking your consultant about micronised progesterone as well which is more bio identical there are brands such as prometrium.

NikkiJR profile image
NikkiJR in reply to Mimi555

Ok , I have a growing list for this man now. 😄

Mimi555 profile image
Mimi555

hi I had the novosure one month ago as a treatment for very heavy periods. I have stage 4 endo everywhere so to be clear this was not a treatment for improving the endo. My consultant felt it was some that might help with just how much I was bleeding each month. As that was causing its own set of issues flooding when out and about and anaemia etc.

I’ve just got my first period since so will need to watch and see how the next few months go. I still had pain and bloating as I normally do, but so far only a very light period so much more manageable on that front.

NikkiJR profile image
NikkiJR

Oh that's good to hear!. Bleeding is my main issue so I'm hoping it will work for me. Did you have a lot of bleeding post procedure?.

Mimi555 profile image
Mimi555

Hiya, I had a little bit of bleeding afterwards and that carried on with tiny bits of blood/discharge until my first period. It’s made so far a huge difference to the amount of blood I’d normally lose with my monthly cycle. It’s definitely a huge improvement. But will watch and see over the next few months. It wasn’t recommended as a first line treatment option for me either but I asked about it because my mum had it done circa 30 years ago and it really helped her with bleeding in her 40s before she went through menopause.

I have managed to implement a lot of diet and lifestyle stuff that has helped even my stage 4 endo (I’m a registered dietitian) and I didn’t want a hysterectomy at this point.

It doesn’t take the endo out of the picture having endometrial ablation but it’s a treatment that can help quality of life. I’ve also felt my pain and bloating has not been quite as significant or lasted as long.

NikkiJR profile image
NikkiJR in reply to Mimi555

Hi, I was just wondering if you had another period since the last post and how it was since ablation?. I'm going to be nervous for my first.

Mimi555 profile image
Mimi555 in reply to NikkiJR

hi yes I do still have a period each month it seems. But an absolutely minuscule amount for a couple of days. It’s been game changing for me as I was having a horrendous time with excessive bleeding

NikkiJR profile image
NikkiJR

That sounds promising, even though it's early days. I'm just sick of it all now, I definitely want a better quality of life. In terms of diet, I'm cutting out all sugar. What is your educated opinion on ketogenic diets?. I want to start something that will reduce inflammation. My health education is teeth, so completely useless. x

Mimi555 profile image
Mimi555

I follow an anti inflammatory diet (have changed how I eat dairy, gluten, refined CHOs, alcohol, caffeine) and choose lower FODMAP foods where possible. But more recently I’ve been studying more endocrinology and eating for your cycle. Very simplistically going from more ketogenic during the first half of the cycle when oestrogen building towards ovulation. Then including good low GI non refined carbs to support progesterone from when the progesterone building window starts until end of cycle.

NikkiJR profile image
NikkiJR

Ok I will try this. Thank you.

SWkeepgoing profile image
SWkeepgoing

I had ablation done 20 Feb, for really heavy periods - I have a large fibroid but not felt to be the cause of heavy bleeds. Procedure was straightforward under general anaesthetic, no pain afterwards for me, no painkillers needed, but I had light bleeding for nearly 4 weeks after. Am currently on my first period since, I have all the usual menstrual symptoms, back ache, bloating, but no bleeding at all. Hopefully this will continue as for me the bleeding was debilitating - would be good to stop taking the iron tablets for anaemia. Good luck with yours

NikkiJR profile image
NikkiJR in reply to SWkeepgoing

Thank you. Mine is ridiculous. I'm tired of monthly tranexamic acid, would be amazing to have no bleeding lol. The rest I can live with.

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