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Sep 29, 2014 10:08 AM

The invisible illness! How do you deal with your pain? What medicines ? Has anyone tried any natural routes?

Sep 29, 2014 1:41 PM

I did the usual ibuprofen and heating pad. when it got too bad I went to the emergency room! I finally ended up taking Depo-provera injections to help with the pain and bleeding but I gained 40 lbs! At the age of 37 I finally had a complete hysterectomy after I had been bleeding and cramping for 6 months straight! Before that I had a laparoscopy done and they burned the endo out but it just grew right back! the hysterectomy was the best thing I ever did! Before I was old enough to have it done though, the only thing that helped was birth control meds.

Oct 05, 2014 2:39 AM

I've actually made myself sick with how many anti-inflammatories I was using (everybody make sure you're eating with your painkillers or they'll mess your stomach up!!!) but have also tried Boswellia Complex and fish oils eg DHA/EPA, omega 3 etc plus magnesium as natural pain relief. Definitely not for strong pain days though, but a good natural way to help fight off pain.

Oct 10, 2014 6:28 AM

Acupuncture is brilliant! It reduced my bleeding it reduced my pain by loads! I can't afford it anymore but if you can it was the best thing!

Oct 10, 2014 3:17 PM

Good to know about other people's experiences with acupuncture. I have been meaning to look into it. Where did you find your practitioner?

Oct 11, 2014 9:59 PM

Hmm. I might try out the acupuncture. I could definitely see it helping!

Oct 28, 2014 2:47 AM

I'm now on tramadol as pain that I'm getting is worse than ever. But again gyne is saying its not endo even tho iv had two ops to remove severe patches.... I find a tens machine helps too

Oct 28, 2014 5:02 AM

Andra, did the hysterectomy also involve removing your ovaries?

Sep 26, 2016 7:17 AM

I sleep a lot so that I'm not awake through the pain. I lay on heating pads a lot and have to take warm baths every day.

Sep 26, 2016 7:21 AM

Birth control ended up making me worse. And anything that messes with my hormones makes me suicidal. Leaving me with not many options. I have strong pain pills, but I'm only allowed to take them for up to 5 days in a row. And I've tried acupuncture, massage therapy, exercise, eating only organic food,and being on a bunch of different whole food supplements. After 4 years of all that. I don't feel any better.

Oct 01, 2016 6:54 PM

Hi Kitty 66. I feel for you and empathise with what you are going through. I'm lying here with my hot water bottle.

Have you seen a gynaecologist who specialises in endometriosis to explore other options like excision surgery? Not all gynaecologists have the training to perform this surgery or the training to manage endometriosis effectively. You may need to do a bit of research to find the right gynaecologist.

Unfortunately, I've been left with painful adhesions after multiple surgeries where they only abated the endometriosis and did not excise it, so it grew back. I have been to a pain management clinic and I am on the waiting list for a pain management course. If you have that option, it may be worth trying to get a referral.

I hope you can find something that helps you manage your pain better.

Oct 01, 2016 8:42 PM

I had two surgeries to get rid of my endometriosis. But when it was really bad i took Ponstan and Panadine Forte

Oct 09, 2016 6:00 AM

TENS machine! It's the best thing to have happened to me in a long time. I cannot live without it, and it's on almost all day, every day.
I use it along with tramadol, paracetamol, gabapentin, cerelle

Oct 09, 2016 10:31 AM

Used to have a tens machine but it messed up my skin so much I'd get sores and rash so I don't use it anymore. Can't take any NSAIDs (ibuprofen, diclofenac, naproxen etc) because it gives me severe gastric pain. I take omeprazole 2x a day to help my stomach even tho I haven't had NSAIDs for years. Tried acupuncture and the relaxation really helped reduce the endo pain for a few hours.
Have had 2 laparoscopies and supposedly they removed the endo but am back in pain again, the first time was within weeks! Got discharged by gynae and referred to pain clinic. So typical. 2nd time different consultant they put mirena in during surgery and I kept it in for 10 months but I had so many problems with bleeding, cramping and just feeling rubbish so had it removed. Back on combined pill now but pain came back really quickly. Been waiting to see my consultant for months - appointment is in November. Can't use private even though my partner has cover from work that includes me because it's a 'pre-existing condition'. Anyway I trust the NHS better than private.
Just rely on codeine and hope I don't need to get stronger stuff. It took me months to get off my pain meds after my last surgery - really awful withdrawal symptoms! Grrrr

Oct 09, 2016 11:56 AM

I didn't realise the tens can do that. I've burnt my skin really badly with a hot water bottle, as it only helped with the pain when it was scorching hot, then I couldn't use anything until the skin got better..... My pain levels are 8(very rarely) - 10, even with the help of everything I use.
I cannot take NSAIDs either, because of my stomach. My GP tried to put me on morphine, but it was awful, made me feel like a zombie and did not help at all with the pain. The progesterone I'm taking filled my with acne.
There is basically not much out there to help with the cases of constant pain. I have fibromyalgia as well, so my back hurts just as much as my pelvic area. My joints (knees, ankles, elbows, wrists, hips, shoulders) are always throbbing with the pain.
Have you tried gabapentin? I'm not entirely sure how it helped, but I do know that I'm not getting bad cramps as often as I used to, just the constant pain.
I hope you get a consultant worthy of his job and he helps you with all your problems. Endometriosis is so complex, that they need a team of more than one consultant to effectively deal with the effects it has on our bodies, but why bother? It's mostly women who suffer from it, and we're staying silent, not bothering to tell the world how f***ed up the system is.
I'm waiting for a surgery, but I have to see the consultant first (the endo nurse was the one who said u definitely need another surgery).
Welcome to the world of endometriosis.
Where the only thing that goes right is that the patients stay strong and fight for their health.

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