New diagnosis of Endo: Hi For the past... - Endometriosis UK

Endometriosis UK

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New diagnosis of Endo

Emnelli profile image

Hi

For the past 6 months I’ve been having severe pain and gone through a lot of different pain meds none of which seem to help.

I was scheduled to get a diagnostic lap op to confirm Endo but they are pretty convinced that it is going by my symptoms.

I’m really looking for advice on heat pad/ Tens/ anything else that may help the pain, because it’s constant at the moment and really starting to have an impact on my personal and professional life.

Thanks in advance xxxxxxxxxx

14 Replies

I recommend the Ova+ Tenscare tens machine - I got it from amazon but I'm sure it'll be available other places too. Its a lovely size for wearing discreetly. Also, the wearable heat patches are my fave!

Emnelli profile image
Emnelli in reply to EndoSuckss

Thank you will give that a look!x

Has anyone offered you birth control. I used to cover myself in heating pads esp around menses but after starting minipill, I haven’t needed to use them as much. I was on estrogen containing BC for 20 yrs. Once I stopped, I developed endo symptoms and didn’t know it. Thought it was my lupus. Birth control can definitely help if you can tolerate it.

Some topicals help too like bio freeze, arnica, icy hot, CBD, lidocaine if you rub it all over your butt and back. I take Tylenol 1000 mg around the clock every 8 hrs. Keeps me somewhat functional. Although marijuana isn’t legal there, you may want to look into CBD as well. I found great benefit from MMJ. I live in the US.

I’m in the UK and it is now legal for cannabis on prescription, only privately at the moment as NHS hasn’t jumped on board yet. Have you tried Cannabis? I know it’s legal in some states, just wondering if it worked for Endo. Hope you don’t mind me asking.

Yes. I use medical marijuana and it’s been a game changer. Highly recommend it. Happy to discuss further. I’ve attached a nice chart with all the different compounds found in marijuana and it’s active properties. It’s from my local dispensary. I feel like there isn’t enough info out there about this. I am a huge proponent.

Marijuana chart

Many thanks, I’d like to persuade someone to do it on the NHS, that would be a breakthrough. There are so many different types. I’m getting so tempted, never tried anything like it ever, never thought I would 😂 it would cost around £2-300, not sure of xrate but $400.

Not eating much so maybe I could go with that angle 😂

Lucyloo82 profile image
Lucyloo82 in reply to Jmiller623

I have not been able to get this on NHS . The law in U.K. needs changing ASAP. Endometriosis pain is debilitating. I had DANAZOIL IN 80’s fir short time until my voice completely went . But it was enough time to have both my girls . But it came back with vengeance . I’m now nearly 61 still suffering. So get treatment and pain relief . Make people aware how this changes your life . Husbands / partners aren’t always understanding and can be cruel .

Emnelli profile image
Emnelli in reply to Jmiller623

No not yet, they are going to do the diagnostic lap to confirm, then take it from there! My sister in law was telling me about going on the pill so will mention that to my doctor, they just keep giving me all these pain meds which aren’t helping.

I have actually just ordered some CBD oil to see if that helps as good as the real stuff! I am just trying to explore all the options right now cause I hate taking all this medication when it’s not actually helping!

Jmiller623 profile image
Jmiller623 in reply to Emnelli

I completely understand. I hope you find relief soon. I hope the CBD helps. I really do think it’s worth trying BC. It suppresses you from ovulating and building up endometrium as thick as you normally would. I think it saved me for those 20 yrs and didn’t know it. I can only take progesterone only (due to migraines and lupus) but even this has helped as it hits some estradiol receptors.

Sending hugs and well wishes. ❤️xx

Hi lovey it’s know how painful it is . At my age 60 I’m still in pain everyday . But have you tried METHENAMIC ACID ?? It doesn’t stop but but you can cope with less intensity. If men had Endometriosis there would be a cure of a pain medication invented .😡

I find suppositories helped when my oral anti inflammatory medication stopped working. Might be worth a try if you haven't already. Also are you taking your anti inflammatory medication before the pain happens, and at regular intervals? Mine doesn't even take the edge off once the pain takes hold but if I use consistently from a few days before it keeps on top of it. I find using 2 hot water bottles the best and also alternating with an ice pack sometimes. Have a look at your diet too if you have the will. Lots of info about anti inflammatory diets out there. I've found it has helped me a great deal but took months of trial and error and consistency to see real benefits. Hope you find some relief.

Emnelli profile image
Emnelli in reply to Gardenist

Thank you so much, not tried the suppository’s yet but people have mentioned them to me might give them a try! I am taking the regularly now but it’s been a lot of trial and error! I’ve bought a tens machine aswell now to see if that helps xx

An electric heat pad from Amazon £20 and a TENS machine for £25 from Amazon.

BeYou period patches, balm and bath bombs are supposed to be ace for helping with pain.

Anti-inflammatory diet can help with pain…you’ll have your own specific food triggers.

Supplements can also help too.

Understanding your cycle, what’s happening to your body and how you can help it, I guess is an excellent way forwards.

Google This Endo Life for a great podcast, website and stories of hope of Jessica’s Instagram reels.

There’s hope and support out there. Sometimes you find great Drs but the system is very broken.

SSRI antidepressants can help you feel better too as the pain can make you feel low.

You can google The endometriosis.uk helpline opening times and give them a call 📞 they’re excellent ❤️

I hope you get going in the right direction really soon - DM if you need a hand 😘

It's worth trying a few different things out to see what works for you. Some people find acupuncture can be good for pain. Diet can also make a big difference. I found that taking out inflammatory foods like gluten, sugar and processed foods helped along with adding in lots of anti-inflammatory foods like fruit and veg. Good luck finding the right thing for you.

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