You know what? Our section here for Q&A often reads like purgatory. Lots of us land in when we're at our lowest. But, things can get better. So, I wanted to share what's in my "pain remedy pack" because.... Drum roll, I went for a walk at normal speed and didn't have to slow or stop for endo cramps!!!! Yay! (It still aches, but is much better).
So, to share the hope...
Background: I have endo stage IV, 5 weeks after laparoscopy, awaiting MRI scan
- Mirena & cerazette. I've had these 1 month, and have light spotting all month with light period cramps. Anticipated to calm in a couple of months
- ibuprofen 400mg, 3x a day with meals, and omeprazole 20mg in morning to protect stomach. This is helping the period-like cramps that come with spotting
- Buscopan for cramps
- Amitriptyline 20mg/day taken in evening (taking these for 2 wks + now with some reduction in pain). Endo nurse advised increasing at 10mg/week until pain was ok, or side effects bothersome, up to max 50mg/day.
- supplements - peppermint capsules & probiotic for digestion, ginger and turmeric & black pepper as anti-inflammatory, multi vitamin and omegas and vitamin D and calcium
I know everyone finds Thier own remedy pack based on what their unique bodies are like. I wanted to share what's helping me because I was so sad and sore when I found this forum. I've done oodles of research & tested this pack, so wanted to share incase you found it helpful.
It's been under "adjustment" as I go, but this is the "snapshot" of where it is now.
Thanks for sharing - so glad for you that you've found a formula that's helping 😊!
I'm not quite at your stage yet (waiting for lap & amitriptyline script etc) but in my general observations, I have found the following is linked to less intense pains (although I don't stick to the as plan much as I'd like because it's so difficult with young children around) : -
Going to bed at a good time each night (sleep debt builds up & makes the whole body sick... I know)
Trying to stay, otherwise, physically fit so the toll on my body is not so great on down days (work in progress 😉)
What peppermint oil dosage are you taking? Which probiotic are you using? Do you have links to the ginger, turmeric and black pepper supplement? Which multivitamin, omegas and vitamin d do you use? Do you take just one tablet of cerazette?
Hi Izzy,I ordered my supplements through Amazon.uk
For the peppermint, I use Colomint 0.2ml peppermint oil, one capsule with water a few minutes before each meal.
For probiotic, right now, I am using
BioCultures Complex - 16 Live Strains with 50 Billion CFU Source Powder - Vegan Time Release Capsules - with Lactobacillus Acidophilus and Bifidobacterium - Made in UK by NutriZing
Taking two per day, one at bearkfast and one at dinner
Ginger
Natures Aid Ginger Root 500 mg 90 Tablets (Botanical Supplement, Providing Gingerols and Shogaols, Vegan Society Approved, Made in the UK)
Taking 3 per day, one with each meal
Turmeric and black pepper... I stopped taking these because I wondered if it was making me bruise more easily.
Organic Turmeric Curcumin 1440mg with Black Pepper & Ginger | Certified Organic by Soil Association |120 Vegan Turmeric Capsules High Strength (2 Month Supply) I Made in The UK by Prowise Healthcare
Vitamin
Vitabiotics Wellwoman Max, 84 Capsules
At the time I wrote the original post, I was on the Mirena coil plus one Cerezzette daily.
Instead, I am now on medical menopause, using decapeptyl and tibolone as HRT add-back. This change was an effort to reduce pain symptoms from endometriosis. I'm hoping for surgery to further reduce symptoms.
Have you altered any other part of your lifestyle or diet because of endo and trying to manage things? Did the mirena help you? Did the cerazette help you?
Does decapeptyl and the tibolone combination help you?
Hi Izzy,How are you doing? Are you just starting out on a journey with endo, or have you been coping for a long time? You have lots of questions. 🙂
Yes, I've changed a few things to try to manage endo, stage IV
Diet....
- I avoid resistant starches to try to reduce digestion issues
- Avoid all-white extra-high gluten foods like pre-prepared pizza base to reduce constipation
Supplements.... As above
Work...
- Temporarily working altered hours with a GP note to try to cope with fatigue
Hormonal treatment
- Tried Mirena coil plus Cerezzette. It did help to reduce endo pain. It was enough to help me stay out of A&E when my endo period pain arrived. However, I was still in a lot of pain
- Currently trying Decapeptyl & tibolone. It takes at least 2 weeks for the initial side effects to wear off and to see if it helps to reduce pain. I've been taking it for 1.5 weeks do far. Cautiously optimistic it's starting to reduce abdominal pain, but need to wait to really know for sure.
Pain management...
- Tried amitriptyline, but had an adverse reaction. Stopped taking it on advice of GP
- Diclofenac 3 tablets a day, one with each meal. Anti-inflammatory, does help reduce abdominal pain
- Duloxetine 3 capsules at night. For neuropathic pain & mood. This does help reduce abdominal pain & helps mood because since starting it, I'm not crying often the way I was before
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Does anyone have rectal pain?
What does your endometriosis feel like?
What was your laporoscopy experience like
I would like to hear your experience with Zolodex injections.
How would you describe your pain?
