(Part 2) Top products from r/Endo

I'm so sorry they didn't treat you well or give you clear instructions on aftercare. I believe I waited 24 hours after my surgery to shower, but it could've even been 48... I'm pretty sure I was told it was ok to shower sooner than that, but I wanted to play it safe. (And definitely no baths or hot tubs or anything like that, due to infection risks.)

As for the belly button/incisions, I used a body wash called Hibiclens (small blue/green bottle), it's an antiseptic soap that my surgeon told me to buy to use before and after surgery. You can find it pretty easily at most stores/pharmacies, I think.

Good luck, and again, I'm so sorry your experience didn't go well. I too felt rushed out afterward and to this day it upsets me.

Edit: here's the link to Hibiclens: https://www.amazon.com/Regent-Medical-No-Model-Antiseptic/dp/B000PWE3CE/ref=sr_1_6_a_it?ie=UTF8&qid=1493430380&sr=8-6&keywords=hibiclens
I got mine from the store, though, not Amazon. I think I paid around $5-$6 for it. Also, I was instructed to get something to help with going #2 due to the pain meds causing constipation issues, so I bought Milk of Magnesia, which is pretty cheap and commonly found in most stores, as well. Don't wait too long to take that, which is what I did (I think I waited like 5 days lol. Not fun!)

I wish this was an easy answer but for be it has been almost a 20 year battle to find out what my body likes and needs. I will say you symptoms sound like mine back when I had leaky gut. The first step it to heal the gut and clam down the immune system then I highly recommend getting a food sensitivity panel and your 23&me results so we can examine your genetics. I am feeling awesome now but I do follow a specific diet for me with a lot of supplements and enzymes. Here are some books that have helped along the way..

https://www.amazon.com/Dirty-Genes-Breakthrough-Program-Optimize/dp/0062698141/ref=sr_1_1?ie=UTF8&qid=1542661699&sr=8-1&keywords=dr+ben+lynch

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https://www.amazon.com/Endometriosis-Health-Diet-Program-Your/dp/077880562X/ref=sr_1_2?ie=UTF8&qid=1542661718&sr=8-2&keywords=endometriosis+diet

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Good luck!

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Hi, yes of course! So, he gave me his special supplier stuff, but I looked at the labels, and this is roughly the same (and cheaper):

Adrenal complex - I took something like this 2x a day.

http://www.amazon.com/Jarrow-Formulas-Adrenal-Optimizer-Count/dp/B0015ZW6QA

Dandelion extract - I used this 2x daily, starting on day 15 of my cycle (ovulation). This really helped to relieve the mood swings that came with my late cycle. He said it would help me "conjugate my hormones". Whatever you say, doc!

http://www.amazon.com/Natures-Answer-Alcohol-Free-Dandelion-1-Fluid/dp/B000I4DH08/ref=sr_1_1

Progesterone cream - he said this would help support my low progesterone. I'll be honest - it did nothing for me.

http://www.amazon.com/Foods-Progesterone-Cream-Lavender-Ounces/dp/B0019LTGTA/ref=sr_1_6

Adrenal complex + dandelion extract worked for me. I don't know if it's right for you, but maybe it will give you some idea do what to try!

Before he gave me any of this, I did a saliva hormone test. It was pretty gross spitting into little vials every day, but he said it gave him a good look at my cortisol levels.

Please keep us updated!

Oh man. I hear you. Puzzles, coloring books (might I suggest: http://www.amazon.com/Enchanted-Forest-Inky-Quest-Coloring/dp/1780674880/ref=sr_1_1?ie=UTF8&qid=1449980561&sr=8-1&keywords=enchanted+forest+coloring+book), knitting, spinning ( seriously--so fun), drawing. I've also started sending letters and cards to all my friends and family--it's a creative way to let people know you care, and you don't have to leave your bed! Everyone has been really moved and a few people have even started writing back!

I also found it very difficult to put the different types of pain into words, but this book was really helpful, if you can possibly get one.

The author made it much easier for me to tell the different types of pain apart, and gave advice on which treatments or medications might be most effective. Even having read it several times, I could open it at any page and still find some useful information or advice.

Hi, I got bought an endo cookbook by my boyfriend for valentines day! It is fantastic. I have been following the diet for over 10 weeks now, and I am finally starting to feel the effects. I have slowly cut things out of my diet and I can't tell you how different I feel! I have got my confidence back, my health back, and after my laparoscopy I will hopefully have my life back. I can't recommend Wendy K. Laidlaw's books enough, as they have literally changed my life.

Hey u/excogito_ergo_sum, you should definitely look into mast cell activation syndrome based on symptoms and what meds have helped you. I highly, HIGHLY recommend reading this book about MCAS. Yes, it's $20 and not available in most libraries, but it is SERIOUSLY life changing. Best book I have read since I've been sick because it explains so. many. things. about mysterious symptoms and why the medications you're on are helping. Quite specifically, H1/H2 receptors are what Dr. Afrin (the author of the book and leading expert on mast cell activation syndrome) uses first in treatment - you are already on Zyrtec which is one of them. Next step is hydroxyzine, which you are already also on.

It's probably too late, but I purchased one of these: https://www.amazon.com/Mattress-Genie-Lift-System-King/dp/B000CAAZSA

It made getting in and out of bed the first few days much easier, plus it forced me to sleep inclined which helped with the pain. I still use it when I have a cold or if I want to read sitting upright. It has a remote and basically turns your bed into an adjustable bed.

As for the first few days, I had a friend stay with me to help me get in and out of bed and also do things like cleaning my cats litter and feeding them.

Pain wasn't too bad (I had an ovary and both tubes removed). I personally didn't have issues with gas pain but I did have issues with constipation due to the meds. A little mineral oil worked when nothing else helped.

By day three I took a short jaunt to Walmart. Probably should have waited a week to do that as I did have some pain after, but I was feeling a little cabin fever. Mostly just hung out in bed and watched Netflix and slept a lot.

I am sure your lap will go great! Touch base and let us know how you are doing!

Yes, the growths unfortunately spread and the spreading can cause more adhesions as well. Any bleeding from lesions can irritate, promote scar tissue and build more adhesions.

I went from one surgery where my doctor said my lesions were minimal, isolated to my uterus and my bowel. Only a few years later it had spread to my bladder, ovaries and I've grown extensive lesions attaching my bowel and uterus.

Keep in mind that the amount of growths and pain being experienced don't always correlate. Prostaglandins can play a huge role in how much pain we experience. Women with minimal lesions can experience excruciating pain while others can have extensive growth and damage and only feel a bit of discomfort.

If you're experiencing bladder symptoms you should speak with your doctor, it could just be a bladder infection. If it's not, make sure your symptoms are thoroughly investigated outside of endo. Interstitial Cystitis is fairly common in women with endo and treated differently.

That being said, I get bladder symptoms (burning, urgency, pain) that seem to be associated with when I have cysts. Bleeding and irritation then it calms down when the cyst is gone. It's been a few years of that and while it definitely varies, it hasn't gotten worse over all.

this article under programming genetic pathways has a description of how growths can grow and change, it's wording is a little intense but it's the best I could find atm. I highly recommend this book . It helped me when I was first diagnosed to get a baseline understanding before doing research on my own.

http://www.amazon.com/Heal-Pelvic-Pain-Strengthening-Incontinence/dp/0071546561

It's under $13 on Amazon before shipping :)

Surgery is well worth it. A good excision specialists will be able to find and remove the endometrial lesions that are the source of her pain. Most women with endo see a tremendous reduction in symptoms after getting a laproscopy. So it's great she is on the path for one! Seriously - this is great positive news and there's really not anything better that she could be lined up for than a lap when it comes to reducing her symptoms and pain level.

IUD's and any other birth control tend to help the pain that occurs around periods by making them lighter or shorter or even non-existant (my favorite!). They are also really important in managing endo because the hormone they operate with (progesterone) prevents endo from getting worse over time (it suppresses the growth and spread of endometrial tissue). But ultimately, they can't do what surgery does - birth control can't remove existing lesions. That's why surgery is so worth it.

As for what may help your issue with anxiety - it's cheesy as all get-out, but seriously, buy and read this book if you haven't yet. It's "bibliotherapy" based in Cognitive Behavoir Therapy. It's 6 dollars, and it really doesn't have downsides besides it takes time to read and effort to practice the theory. While more focused on depression, depression and anxiety go hand in hand (and are commonly comorbid) in that you get into this habitual way-of-thinking that can lead to downward spirals of sorts, and this book really can help you learn to recognize, control, and re-program your mind. Seriously, even if you think it won't help - prove me wrong by reading it at least. I know it seems completely off-topic, but you've identified your anxiety as something that makes dealing with your SO's condition difficult for you. Let CBT or "bibliotherapy" help you with that. It really helped me, personally.

Has anyone read the book Ask Me About My Uterus?

https://www.amazon.ca/Ask-Me-About-My-Uterus/dp/1568585810/ref=mp_s_a_1_fkmrnull_1?crid=7XFVSIW2097C&keywords=ask+me+about+my+uterus&qid=1555051643&s=gateway&sprefix=ask+me&sr=8-1-fkmrnull

I found it to be very encouraging and made me feel less alone.

My absolute favorite is this oversized heating pad. It doesn’t get too hot to burn but hot enough to bring down the pain, and turns off after awhile. Full disclosure, I fall asleep with it on the highest setting all the time and have never gotten burned.

Pure Enrichment PureRelief XL Heating Pad for Back Pain and Cramps - Fast-Heating, Ultra-Soft Heat Therapy with 6 Temperature Settings and Auto Shut-Off Feature - 12" x 24" (Charcoal Gray) https://www.amazon.com/dp/B01KVYTV86/ref=cm_sw_r_cp_api_i_kHS1Db0KH64XH

Although, this is another one of my favorite options. For me, the heat from water is much more therapeutic (see my massive water bill for the several hot showers a day I take haha). But this is like an old fashioned rubber hot water bottle. A lot of them come with cute covers on them. You pour hot water in it and it literally lasts the night.

Hot Water Bottle with Knit Cover, UBEGOOD Rubber Transparent Hot Water Bag, Good for Pain Relief (2 Liters, Blue/Gray) https://www.amazon.com/dp/B07K6BMNPX/ref=cm_sw_r_cp_api_i_FJS1DbKPR4BFD

Finally, I personally don’t like this because it is too tight on my belly, but some of my other friends with endo swear by using this at work. It might be more discrete in the workplace.

DOACT Waist Heating Pad for Back Pain, Heat Waist Belt Hot Compress Therapy for Menstrual Abdomen Cramps, Lower Back Pain Relief, 5V Electric Heating Pad for Women Men https://www.amazon.com/dp/B07SR1JRHR/ref=cm_sw_r_cp_api_i_PKS1DbQTMM4CR

Mustard soaks are well known for muscle relaxations

like this one is highly regarded and is/was sold on Goop.

Also plenty of DIY recipes on the internets.

This is the product I used until I had them rip out my lady bits altogether:
http://www.amazon.com/gp/aw/d/B000IMQE5U/ref=mp_s_a_1_1?qid=1376844399&sr=8-1&pi=SL75

Oh man, that makes me super nervous about my next cycle! I'm on Cymbalta which helps a ton for fibro, but my docs refuse to prescribe any narcotics. So if its bad (which I'm afraid it will be) I'm going to have to hope the Tramadol will handle it.

I actually have a friend who has fibro and a lot of hormone issues (not Endo or PCOS like I have, but her cycles are awful too) and said reading this book explained a lot about how her hormones might be messing with or causing her Fibro. She can't take Cymbalta or Lyrica (or the Gabawhatever other one) because of bad side effects so she's trying to do more homeopathic treatments and its working well for her. Anyways, I haven't read it yet but might be something to look into. Also, there is a suspicion that a lot of fibro might be caused by progesterone, but I'd recommend doing some research and reading things like this before trying anything on your own!

Your pain is your pain and no one can tell you that your aren't warranted of answers. my partner (GF19) has been dealing with endo since she was 16. She was very fortunate in being able to have it diagnosed early. I encourage you getting a book called "Beating Endo" on amazon. I just purchased it with the advice of some individuals on here and it goes into an explanation of why it is so difficult for people to just accept that you have it,especially at an early age.

It isn't the easiest to test, it isn't the easiest to see the symptoms, most times the symptoms can be side effects of other issues from the pain, bloating, bleeding, lack of energy. Most medical professions know it is a thing yes but it is generally glazed over in medical school because of what I had just mentioned. The only piece of advice I can really give you, as a man who just got into this world for a loved one, is barring the results of your test if you are not happy with the answer look for an individual that is specialized in diagnosing Endometriosis or other sister condition.

You cannot have other people push their thoughts on you. Waking up every day keeled over in pain, being terrified at the thought of never knowing if you will be able to move because of how debilitating a period will be, and whatever other conditions you may have are not what healthy people face. You deserve an answer and I am sorry it hasn't been as easy as it should be but keep searching until you are given an answer. Good Luck

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Here is a link to the above book: This is what really helped me understand Endometriosis!

Had similar pain after laparoscopy. My surgeon said the cyst they removed was on the back of my ovary. It seemed like anything I ate made the inflammation worse. Here’s what worked for me:

1. Chaste tree berry pills every day +
   
2. CBD oil (like a 5:1 CBD THC ratio, if you live in a state where it’s legal) +
   
3. Avoiding inflammatory foods (dairy, gluten, alcohol, soy, whatever makes the pain worse) +
   
4. Embracing anti-inflammatory foods, like salmon and coconut oil.
   
5. Hot yoga 1-2x a week to stretch out any scar tissue
   
6. Yogi Tea - Woman’s Moon Cycle
   https://www.amazon.com/Yogi-Tea-Womans-Supports-Healthy/dp/B0009F3QLQ
   
7. Avoiding hummus/chickpeas seemed to help but idk if that’s just me
   
   Other things to try:
   
8. Progesterone-only (no estrogen) birth control pills - worked for me relatively quickly but made me feel weird after a few months. I would try again if needed. I don’t think you can take them AND chaste tree berry at the same time, since they both act on your hormones.
   
9. Definitely call the surgeon and make sure they know about the pain
   
   **when healing, my body was REALLY sensitive to certain foods. I slowly brought back some gluten (sourdough bread mostly) and occasionally cheese... but I can tell the dairy causes inflammation. Also brought back alcohol but, when I drink too much, I feel slight pain on my right back side creep back until I take or rub CBD oil in that spot.
   
   

I have had the same experience with my back pain in recent months. I read a book called Explain Pain by a specialist in chonic pain who talks about the interaction between pain, threat signals in the brain, and stress. Educating myself helped a bit, because the truth (for me) is the pain was always there, but now i can learn coping skills to deal with it. Its not easy though, part of my current coping skills involves antidepressants to break some of the connection between stress amd my pain. Heres a link to the book if it helps. https://www.amazon.com/Explain-David-Butler-Lorimer-Moseley/dp/0987342665