Endometriosis best tips

[sakes]

Daughter newly diagnosed with this shit show of unbelievable horribleness. May end up murdering any variety of total eejits coming at us with insensitive and uneducated opinion.

Please if you have it or know someone close can I have your best tips for managing it. Any tips welcome: xx thank you.

I have it.

What has worked for me:

Injections (depo-provera) to stop periods.
Now on the implant - a pain to get appointment to change but no periods.

Initially mefenamic acid for the pain. Now I use naproxen sodium.

I have had two operations to cauterise endo deposits outside my womb. Both helped massively, because I had a lot of deposits on my bowels etc that were causing pain.

Hot water bottle is also good for muscle relaxation.

Thank you. Did you get the injection after trying the pill? Is naproxen sodium the same as naproxen?

Make sure you see a gynaecologist

Learn how to safely co-dose painkillers (aspirin, paracetamol, ibuprofen, codeine if you can get it)

Buy a car with heated seats/ a variety of hot water bottles or heat packs

Wishing you all the very best

Naproxen sodium is the same as naproxen.

I got the injection after trying the pill.
I am old enough that injections and implants didn't exist in my younger days and the pill was the only option.

Thank you. It's so rubbish isn't it. So challenging to get pain relief even slightly right. Can't believe there's nothing that really touches it

I'm on long term cerazette with no breaks in between packets. Took a few months for my body to adapt, but I have been pain free for around 10 years now.

Progesterone only pill (same idea as the mirena coil but taken as an oral pill) has done wonders for me. I don’t get periods at all now and much of the pain is gone, still some issues though.

Oh that is hopeful.

I had laser surgery to zap the implant material that had strayed in the tummy / torso area followed by a series of Zolodex injections.
that was 25 years ago though .
Good luck - it’s gruelling and exhausting.

Thank you. Haven't heard of injections before.

Surgery and immune boosting foods after that. Deep massage in between periods when pain is at lowest.
Has she had an explorative Laparoscopy? Surgery may be the only option if the lesions are bad and have made organs stick to one another.
I didn't take the hormone blocker as didn't want the additional issues they could bring.

I'm waiting for a consultant appointment but have been diagnosed off an ultrasound so far

Mefanamic acid, dihydrocodeine and paracetamol help me a lot
Heat, almost constantly

Like a PP, I also had several rounds of laser surgery and eventually a course of Zoladex injections. These are not to be taken lightly as the needle is huge and they effectively put you into temporary menopause. It helped me but with significant side effects and I would suggest other routes first, especially if she is young

I'd echo @Defiantlynot41 Zoladex turned me into a zombie.
On the other hand Cerazette kept me symptom free for a number of years and apparently you get a boost to your fertility for a short period after you come off it - this is probably how DS17 came into existence.

She has inflammatory bacteria in her endometrium more than likely and this is what is causing it.

Scientists are finding increasingly that five bacteria are found commonly in women with endometriosis that aren’t in women who don’t have endometriosis.

Your DD could start to take high levels of lactobacillus probiotics plus one with bifidobacteria. It will take time.

I would also recommend the Zoe Nutrition program because she needs to reduce the inflammation in her body generally. All biomes within the body are linked and the gut biome, with what you eat influences every other biome.

The problem with endo is getting pregnant at a later date can be very hard.

Most people want just a quick fix which I completely understand and changing hormone levels and new meds will alter the biome but it won’t solve the problem long term.

Those bacteria will still be there.

There’s a 16 S test that you can do to find out what bacteria is in your endometrium and then you can start to find a way to get rid of them. Sometimes it’s a two week course of antibiotics. But this early stage and not effective for everyone as there are biofilms in the body where the bacteria live and they can therefore return after you stop the antibiotics. That’s why probiotics and diet are crucial to try and squash the critters.

I can’t remember the name of the test. I’ll look it up if you’re interested.

https://www.thelancet.com/journals/lanmic/article/PIIS2666-5247(23)00221-5/fulltext#:~:text=A%20translational%20study%20has%20suggested,women%20of%20reproductive%20age%20worldwide.

This is the future of dealing with endo, like so many inflammatory diseases.

Co-dose painkillers
Hormonal contraceptives if not trying to get pregnant
Heat - baths, hot water bottles, bean bags, heat pads.
TENS machine - boots or Amazon, mine really helps.

I’ve had to come off the pill to TTC and found that cutting way way back on sugar has helped, but it’s been pretty extreme.

@SoySaucePls that's really interesting!

I've had 3 lots of laser ablation surgery but it has been a Mirena that's finally kept it away (I'm on my second). I'm past my childbearing years though (I did have one child after the first round of treatment but I wasn't diagnosed till my 30s).

I suggest going on the website of the Endometriosis charity and seeing what resources are there.

Only thing that helps my pain is the pill, painkillers don't work for my pain for some reason

The only thing that truly helped me was excision surgery. Even on strong painkillers I had breakthrough pain, and the drugs made me feel out of it.

I have endometriosis and have had laparoscopic surgery
Strangely evening primrose oil eased the pains for me (not sure if it was just random,or anything to do with it but it did )
I was offered the pill but I didn't want it
Nothing really helps unfortunately but things can ease it (good painkillers,hot baths ,heat pads )
It's horrible

Thank you everyone. I didn't know that about the bacteria soy sauce. We're working with a nutritionist, acupuncturist and getting visceral manipulation so we're very pro the long game. Will research that. Has anyone heard about the use of mushrooms for this.

Mefanamic acid helped me enormously. I had to start taking it 2 days before the start of my period, otherwise it was useless. Was fortunate to have regular periods (usually).

I craved hot water bottles, comfy clothes and cosiness.

I had a couple of laparoscopies which helped temporarily.

I'm now well past the menopause, and can't tell you the relief.

Oh, and I remember the fear that my fertility was affected. I know this is a known issue but happily was able to have my DD when I was 39.

Seek out a surgeon at a BSGE centre of excellence, the BSGE website is online.

Do not be fobbed off, complain to PALS

Do not have any more surgery than is absolutely necessary

I found nutrition had no real benefit.

That's helpful - I've been referred to a specialist centre and they're listed on there
A years wait but oh well!

Good to know you're willing to think beyond current NHS guidelines and prescribing. The new research doesn't reach the NHS for years, sometimes decades before it's rolled out. If you're willing to roll your sleeves up and really get into the detail you may find the answers much earlier than the vast majority of the public. The microbiome work is in its infancy for many many diseases and it will change health forever once we understand how to manipulate it better. Some early front runners are available for you to start testing privately. I found the test if you're interested to trial it. Often women test here because they can't fall pregnant due to endo but there's a test that will identify pathogenic bacteria regardless of if you're looking for help with fertility and it's from there you may be able to find the solution to stop it in its tracks. Wouldn't it be nice to be cured?!

https://www.igenomix.co.uk/genetic-solutions/alice-clinics/

Nutrition goes way beyond what most people think of as a 'healthy diet'.

So for someone who said it didn't work for them, I'm afraid it's much more complex than that and you'd need to have a gut microbiome test to work out what you need more and less of. All the biomes are linked and talk to each other.