how you all managing🙏🏻 with endometrioma ???

[Lucinka17]

hi lovely ladies 🥰

My name is Lucie I am 40, I ve been diagnosed with stage 4 endometrioma and the moment I am waiting for laparascopy to removed my cysts which are full of bloods separate my ovaries which are kissing each other and maybe fit a mirena coil which I am not sure about🤷🏼‍♀️

My questions to you ladies is how do you keep with the terrible pain which I experienced every day for hours it’s ruling my life and I am very upset as I can’t work. I am nurse myself working in hospital but for the last 14 weeks it has been awful! The gynecologist put me on urgent waiting list which been a month already and nothing🤷🏼‍♀️what pain relief are you on and how do you cope that you can’t work. I am sorry for all this questions but it all happened so quickly I am not coping very well😩😩😩

Thank you

Lucie

[AllthatGlitters]

hello. I am 41 and get how you feel, I currently don’t work because of my health and is depressing at times.

I am on naproxen and tramadol for pain, sometimes these medications don’t take the pain away even though I also use a tens machine and hot water bottles.

I see you have been put on the urgent list, what I have done before it’s either chase my GP and ask them to expedite my referral so I am seen quicker or I contact the medical secretary for gynaecology. If you are lucky to get a nice secretary explain how much pain you are in and ask them to get a message to the consultant that you need seen ASAP and ask for a phone call back to check your progress on the list.

You asked how us ladies cope with this, I simply don’t. I have good and bad days. Illness can suck the life out of you.

Hope that helps in some way, you are not alone and feel free to PM me if you like. X

[Lucinka17 in reply to AllthatGlitters]

thank you so much for your time to reply

Yes you are right it’s very depressing!!! Naproxen didn’t do nothing for me🤦‍♀️I am on co- codamol morphine mefenamic acid I have never ate so much pills in my life like these last 3 months😩I will phone Monday to find out a bit more informations when my op can be🤞🏼🤞🏼🤞🏼🤞🏼🤞🏼

[AllthatGlitters in reply to Lucinka17]

naproxen doesn’t take much pain away does it especially when it’s the strong contraction like pain. They refuse to give me morphine at home. I cope with tramadol. However that makes me feel like I am going to throw up. It’s a right evil drug so it is - I hope you can get some help on Monday. Let us know how you go xx

[Mcyizml2]

it might be worth talking to your trust about moving you up the list so that you can return to work? They may consider it as it will be costing to cover you…

[BlueGiraffe9]

Have you tried a tens machine, literally sometimes the only thing that got me through working day!

[BloomingMarvellous]

I use various routes to cope with pain long and short term. Firstly get the inflammation reduction was one major part. Omega 3 ( a fish based one - high dose high quality is essential EPA/DHA being in the 450/800 range daily has been the one recommended at 5mg in any studies ) without fail. Navigation of the inflammation conversations I found Katie Edmonds double blind studies research based book Heal Endo super useful . The oil stopped excruciating levels of pain, bloating and nerve aggravation for me pretty fast but the value keeps building a year in. I found a Mediterranean type diet really useful once had figured out that Lactose and klebsiella infection were an issue for me ( antibiotics the right one helped ). It wasn’t rocket science to do the lactose tolerance test ( Dr Google !) and the pain levels dropped again. Dairy is still on the menu but either lacto free or using the understanding that certain processes remove or significantly reduce the lactose. I do a few other odd bits supplement wise but the kingpin is my Omega 3 levels.

I followed medical advice and knocked back the painkillers until they really messed my system up and have to say while being occasional lifesavers they became a big part of the problem with my gut slowing let alone the other effects. I tried the gamut and the pain was life threatening because of how it affected my mental health. When you wake from hard won sleep screaming with pain despite the morphine etc you know it’s a problem. So I had to try other things. I use breathing techniques to improve the intradominal pressure and get the pelvic floor functioning again ( try the podcast 52 on @leah-brueg insta feed with the pelvic physio Dr Angie Muller to get the low down on the thinking and functional reason for some of the pain -clearly not the only one for you but …) Tackling this enabled me to move again and begin to walk . I find if I get pain the breathing helps enormously and reduces the amount of medication I’ve needed. I’ve had surgery but the pain still continued afterward so I know that it’s got to be a combo.

Lastly my current GP has been brilliant. We both know this is a management game so I’ve found adding the centrally acting Nortriptyline shifts the problem. I use a tiny dose (5mg the low dose is supposed to be 10mg Tried the Amitriptyline but it wasn’t the deal ) but he also strongly recommended I try the Curable App. He gave me a free 3 month trial . It’s been really helpful and even though have done a lot of the mindfulness and therapy based stuff over years ( yup in attempt to deal with the so called problem in my head by medics who ought to know better and failed to diagnose ) these ones didn’t really do the biz. Curable has really improved how I deal with the pain as and when it makes itself known.

All of these are my power tools but it’s important to get the right, the best surgical treatment you can so keep on it. When you need surgery you need surgery. All the above tackle the issues for me at various points along the way but they aren’t a substitute. For me they manage, enable me to have a life, regain some control and know I can make a difference for myself. Sorry it’s long but hope you find your way soon x

[suricat in reply to BloomingMarvellous]

Hi, I'm 39 and I have also an endometrioma on the right ovary. The information you have shared are very instructive. Please can you share the source about the EPA/DHA range required for endo? Thank you

[BloomingMarvellous in reply to suricat]

Katie Edmonds has some useful research links regarding this but my info is from research I did 3 yrs back and I don’t have that to hand - but the research is out there in public realm .( Am not about to spend an age digging again though !!! I did it for myself and as a practitioner was comfortable with the information studies to try it out for myself and since then Katie Edmonds book provides sufficient links for me to feel more certain)

The ratio of EPA/DHA at 5ml dose is repeated across other autoimmune, heart issues and depression treatments that have also received double blind analysis . It’s also within standard dose acceptance rather than beyond that. Given the factors, current studies that indicate the immune issues and inflammation with endo - done by the likes of Edinburgh university and Stephen Palmer out in Baylor College of Medicine - it’s not surprising that the lessons in other autoimmune ailments with often linked disorders responding to Omega 3 treatments might usefully be applied to endo too as part of the story.

A lot of Omega 3 supplements on the shelf aren’t up to the useful ratio , vegan versions can’t deliver the blend of EPA/ DHA required and the cost can be managed by getting a good oil which can mean less to be taken overall. I also ensure I get plenty from my diet but it’s not enough, hence the supplement.

Edmonds refers to a nutritional status test for Omega 3 which can help assess how deficient-or not - you are. Not sure if it’s available here or not as she’s based in the US.

[suricat in reply to BloomingMarvellous]

Thanks, you're amazing!

I've received my diagnosis 3 weeks ago. Since then, I read a lot, but I didn't finished Katie Edmonds yet, but it's loooot of information.

My gyn doesn't help me. She never talked about diet changes for example.

May I ask you what health practitioner you are?

I live in Canada, so I can find this test.

Thank you.

[BloomingMarvellous in reply to suricat]

I was an acupuncturist of 20 yrs. I specialised in infertility and pain relief in labour alongside a mixed practice. I also practiced nutritional care, Applied kinesiology and zero balancing. It’s really helped me to be able to navigate and think through some of the issues and know that the illness is multi faceted and surgery / hormones are only a part of the story. It is a team effort and everyone is different. Agree there’s a lot in the Edmonds book … bite sized chunks at a time 😂

[BloomingMarvellous in reply to BloomingMarvellous]

It’s a thing though with medicine you can specialise to such a point that the knowledge is razor focussed or broad. It’s rare to have a specialist who straddles both. I also think there’s a lack of rigour in drawing together known studies on endo and new enabling us to make improvements in disease management . We get attached to current understanding and ways of treating which can stop us asking wider questions and challenging the holy grails of how to treat . Am not sure how much research has actually been done on the long term life quality of patients with endo on some of the regular treatments as it seems to be a shrug of the shoulders for many of us when the process is done. So many seem to suffer right across the board and it’s normalised which stinks.

[Brownish-12]

Just be taking apple cider vinegar it help me for the pain, now I don't feel any pain again, just be taking 2 table 🥄 and mix hot water morning and night