Best products from r/endometriosis

Hi there! First off, hats off to you for being so thoughtful. When I got my endo surgery there were a couple things that helped me feel better you could consider adding to your care package. Here's some ideas:

--First off I loved this eye pillow from amazon. (https://www.amazon.com/DreamTime-Lavender-Soothing-Aromatherapy-Relaxation/dp/B00005TZU8/ref=sr_1_9?keywords=weighted+eye+mask+lavender&qid=1574260628&sr=8-9 ) It smelled so good and helped me get precious moments of sleep.

--I enjoyed hot cups of tea to help me relax. Here's one I loved. ( https://www.amazon.com/Revolution-Tea-Tropical-Green-Teabags/dp/B004UHUUUO/ref=sr_1_4?keywords=revolution+tea&qid=1574260725&sr=8-4 )

--Whatever comfort food she enjoys (chocolate is always a good choice).

--Make sure she has a comfortable pillow. Also when she gets up to move after surgery, it helps to hold the pillow in front of the stomach and brace yourself with it.

I hope this helps. Feel free to PM me if you need any more ideas. Best wishes!

I follow my bedtime routine:

1. Nutrition is the most important part - it is very important we do not eat anything with sugar and have a very light dinner. I only drink water, as even tea can have caffeine in it.
   
2. Make sure my room isn't too hot, too stuffy, or too bright. Bedrooms that are quiet, dark and cool are optimal for a good night’s rest. I rest better in cooler places.
   
3. Stick to the same things every night - Excercise, a bath, pajamas, brushing teeth and a few pages from a book. I make sure to stick to it consistently so that my body knows what to expect.
   
4. During the day I do exercise as much as possible - biking, running, playing etc. At least one hour before bedtime.
   
5. I use a weighted blanket every night and it helps me relax and go the sleep faster.
   
   I got my favorite weighted blanket from a seller on Amazon for only around $65. Super worth it and the quality is amazing! I also bought one for my daughter and we can now sleep 8hrs straight and wake up feeling well-rested and energized.
   
   I really hope this helps and that it works for you too!

Research anti-inflammatory diet. It’s most likely the celiac diet as well. It’s recommended to anyone with an auto immune disorder (endo, celiac, ect). Basically it’s no gluten, dairy, sugar, and treat your body with healthy clean foods like chicken and fish and veggies. Not really rocket science it’s just good clean eating.

Endometriosis: A Key to Healing Through Nutrition https://www.amazon.com/dp/B00C0U6Y6W/ref=cm_sw_r_cp_api_i_K7csDbB6G64RE

This a great book along with a few others on amazon. I think it’s great that you are investigating this because how you eat has a HUGEEEE effect on how you feel and function, endometriosis or not. This is spoken from the girl who has endo, realized she was eating like shit, stopped eating like shit to lose weight and then my endo symptoms greatly reduced as a side effect. I also converted my bf who lived on Wendy’s when I met him to meal prepping and cleaner eating and he says he feels the best he has ever felt (he’s turning 40 in sept).

If I could make one recommendation it’s water. Your main drink needs to be water. And a lot of it. One of the biggest changes I made was giving up the “large French vanilla ice coffee extra cream and sugar” that I got every day in the way to work. Good lord I was starting the day hammering my system with all that sugar and every once and while I’ll pick one up and feel like utter shit after having it. You will start to feel better almost immediately if you make your primary drink the good ol H2O!!

For me
Prescriptions:
•Toradol (Ketorolac) - a strong anti inflammatory drug, given in injection or pill form.

•Medro (MethylPREDNISolone dose pack) - a steroid to help reduce inflammation.

•Indocin (Indomethacin) - anti inflammatory drug.

• Neurotin (Gabapentin) - a nerve pain drug

•Valium (diazepam) vaginal suppositories -works as a muscle relaxer directly into the pelvic floor to ease spasm. Can also be made with Baclofen and other drug compounded.

Over-the-Counter:
•Doan’s (magnesium salicylate tetrahydrate) - a pain reliever that isn’t acetaminophen or ibuprofen.

•Hot Hand’s adhesive body warmer -cheaper and heat lasts longer than Thermacare Heatwraps

•Bengay cream - active ingredients are: Methol, Camphor and Methyl Salycilate.

In addition, Pelvic floor physical therapy, very gentle yoga, hot tubs and water walking. I also have a Rollator I use to help on bad days (I also have hip chronic hip pain). I hope this list is helpful. Hugs

Yeah, of course! In case you're curious, this is the pycnogenol I have been using. It's the best price for the recommended dosage (100 mg/day) I could find.
https://www.amazon.com/Healthy-Origins-Pycnogenol-Natures-Antioxidant/dp/B00C3PKYCE/ref=sr_1_6_s_it?s=hpc&ie=UTF8&qid=1526964737&sr=1-6&keywords=pycnogenol

From what I understand a hysterectomy is not recommended unless you also suffer from adenomyosis. I recommended joining Nancy's Nook on facebook. There's a lot of info there and recommendations for an endo specialist. It looks like hysterectomies are not a cure. Some people recommend a keto diet for fertility issues. https://store.storkotc.com/products/the-stork-otc?gclid=CNzYveLhstACFYERgQod9YoLjg&id=1000019-2 Stork is an in-home alternative before trying IVF. I have a friend who works at the Mayo Clinic that uses acupuncture to help women with fertility issues. She has recommended this book too. https://www.amazon.com/dp/B000SEHRO0/ref=cm_sw_r_sms_api_tCZmybPG16K19 I haven't tried any of these suggestions for getting pregnant because I'm not sure I want any children but hopefully some of this info works for you!

I have this one, though it's not the pretty plaid, and it was fairly cheap https://www.amazon.com/Sunbeam-Flexi-Soft-Massaging-Settings-Auto-Off/dp/B016WK51DW/ref=mp_s_a_1_17?keywords=sunbeam+heating+pad&qid=1570413693&sprefix=sunbeam+&sr=8-17. It has a massage feature that I like. It is fairly small, and not flexible at all. I use it mostly for my tailbone, so I sit directly on it.

I also have this one, which was great for the shoulder pain after my excision surgery. https://www.amazon.com/Sunbeam-Contouring-Shoulder-Settings-Auto-Off/dp/B0753PSVY7/ref=mp_s_a_1_7?keywords=sunbeam%2Bheating%2Bpad&qid=1570413859&sprefix=sunbeam%2B&sr=8-7&th=1&psc=1.

After surgery I had one going on my shoulder and one on my tail bone and it was great. I'll even be using the shoulder one during the upcoming cold winter months.

Is it constipation? Magnesium glycinate works best for me to not be constipated. There is also the Magnesium "Calm" drink.

Other ideas:

-psyllium husk pills / oatmeal
-B12 gives me loose stools
-stomach massage, specifically the "I Love U" massage where you basically repetitively spell out the letters "I- L- U" on your stomach to aid your digestion
-milk of magnesia
-colace
-over the counter hemorrhoid suppositories, it sounds gross but it basically lubricates your butt

It may be worth going to a gastroenterologist if you can.

​

Absolutely. This has lasted over a year now, I use it every night. Heats up super quickly, like in a minute, and had a setting so that it won't turn off by itself.
https://www.amazon.com/gp/aw/d/B008744QM4/ref=mp_s_a_1_7_a_it?ie=UTF8&qid=1475183925&sr=8-7&keywords=sunbeam+heating+pad

Don’t buy a livia!! They’re like $150!! You can buy literally the same machine for $30 on Amazon it’s just not cute like the livia. This makes me so mad!!! They took a cheap, useful technology and “pink-ifyed” it so they could upcharge women in pain over 100% >:( I have a TENS unit (https://www.amazon.com/dp/B00NCRE4GO/ref=cm_sw_r_cp_api_mUfcAbGPT84CF) and it definitely helps but the livia thing just makes me so furious about capitalism and patricarchy!! Sorry for the rant lol

https://www.amazon.com/Enlighten-Tea-Relaxing-Anti-stress-Supply/dp/B015VHWWRU
Hopefully it comes back

Of course! I bought this one from Amazon.

Post Maternity underwear from amazon are a life saver. Found them after my lap.

Edit: here’s the link! wirarpa Women's Cotton Underwear... https://www.amazon.com/dp/B07MYQMH5D?ref=ppx_pop_mob_ap_share

There’s probably similar products out there. The fabric on these is really soft so great for recovery from my lap.

Lara Briden recommends Meriva turmeric or Davidson laboratories. I buy this [one] (https://www.amazon.com/gp/product/B01LWA6WO8/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1) and it seems to be working.

https://www.amazon.com/Before-Your-Time-Menopause-Survival/dp/1439108455

Hi! I do not have experience with a twisted fallopian tube, but definitely do with endometriosis. Just like you, I am still rather young- 18- so I do understand the struggle of dealing with this at such a young age.

A connection I've noticed with endometriosis is it generally starts a cycle of pain after some sort of trauma to the abdomen. For you, you had a twisted fallopian tube, and then the endo pain came with a vengeance. For me, I had kidney stones with multiple stents and ureteroscopies which touched off my endo. I suppose this isn't necessarily helpful so much as interesting.

On the help side of things, I did write this post dealing with pain and the ways I approach treating it. I would like to add that since I am currently in a flare, my doctor has added hydrocodone, meloxicam, and flexeril to help with the pain. These types of plans are likely something to be discussed with your OBGYN. I am on these medicines purely because we want to avoid the ER at all costs.

I also want to add that the Livia is ridiculously expensive, although it is much more portable. You can go to Amazon for a TENS unit for $25 that has varying modes and you can experiment to find which works best. I got this one. It has worked wonders. :)

Another newer tip I have is to take 3 ibuprofen, 3 times a day, starting 3 days before your period is due. This helps the pain before it begins. The sooner you start with pain management, the better.

You may also want to consider finding a wide excision surgeon to potentially fix your pain long term. I believe you can find a link in this subreddit, but you can also find a list in Nancy's Nook, a facebook group for endometriosis. I am actually going to an excision specialist next week! Very excited!

Other than that, stay strong. It's really hard having such a painful disease at such a young age, but it's possible to push through. Take rest when you need it, and take advantage of every good pain day you have. You can do this :)

Hope this helps!