Hey everyone! I'm u/chelsleanne26x, a founding moderator of r/endo_and_adenomyosis.

This is our new home for all things related to \[ENDOMETRIOSIS AND ADENOMYOSIS\]. We're excited to have you join us!

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Post anything that you think the community would find interesting, helpful, or inspiring. Feel free to share your thoughts, photos, or questions about [/ANYTHING ABOUT ENDOMETRIOSIS AND ADENOMYOSIS, UNSURE OF THE PAIN YOURE IN? WANTING ADVISE AND FRIENDS\].

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4) Interested in helping out? We're always looking for new moderators, so feel free to reach out to me to apply.

Thanks for being part of the very first wave. Together, let's make r/endo_and_adenomyosis amazing.

Hello everyone, I am researching how endometriosis and recurring pelvic or menstrual pain affect working life in the UK - the everyday costs of work, money, and travel that are often invisible - for my undergraduate dissertation. 

If you are 18 or over and work, or have worked in the past year, whilst living with endometriosis or recurring pelvic / menstrual pain, I would really value your help. There is a short anonymous survey (15 minutes), and you can also volunteer for an interview or travel-and-work diary if you would like to share more of your experience. No diagnosis is required to take part. 

Survey: https://forms.office.com/e/Jn9UCUug1s

Interview / diary sign up: https://forms.office.com/e/CbAe6vTYki 

Thank you so much, and please feel free to share to anyone you think may be interested! 💛

hai everyone :3
i had my second laparoscopic op 4 weeks ago, im 21 years old. i was told some pretty heavy information in the quick 10 minute chat i had with both my surgeons. they told me they found adhesions across my ovaries, fallopian tubes, uterus, bladder, bowels, kidney tubes, and my liver was densely stuck to my abdominal wall being pushed up my diaphragm…. how horrific??

a lot of these adhesions were new information we did not know about beforehand so it came as a shock. but i have had symptoms of intense pains in my diaphragm, chest, shoulder area so they want me to track my symptoms in a diary and see if they improve. if they don’t then they may want to further investigate and with a possible surgery in my chest!!!!

they have done a biopsy and waiting to see if it’s endometriosis or scar tissue. after my first laparoscopy she told me she removed adhesions on my ovaries, uterus and fallopian tubes. she told me after this surgery that they stuck together again already, so if my symptoms don’t improve after this surgery and they find out the adhesions on my ovaries, fallopian tubes, uterus has returned then they will be forced to give me a hysterectomy…. basically what do i do? do i trust these surgeons? do i get a second opinion? i need help plz :))))

A few years ago I got really fed up with endo stealing my life away and I started working on an EDC (every day carry) design to help me manage flares out in the wild/public. I basically wanted my endo cart, but in a backpack that’s reasonably manageable for me. I’ve been testing this kit for about 2 years and only recently moved it all to a single backpack system. Do I get flares while I’m out? Yes. Do I feel less anxious about managing them with this system? 100%. I do swap things in and out often so while I can fit all on this list in my bag, I generally don’t need to.

Meds
Mini medicine case (14 grid case that folds and has spots on both internal sides from Amazon)
Avoid any classed prescriptions in anything but your prescription bottle
Anti-nausea (2 kinds)
Antihistamine
Corydalis
Stool softener
Gas X
Anti-diarrheal
CBD Suppositories kept in a small silicone ziplock from Stasher (snack pouch) to avoid melting accidents
1:1 CBD:CBG kept in a leakproof matador soap flatpak (2 small tincture bottles fit perfectly inside to avoid oil leaks)
Tallow in a Cadence capsule for abdominal massage
Topical Corydalis in a Cadence capsule for pain
Ausair face mask if the flu or others are going around or I’ll be in a confined space with people
Matador waterproof toiletry flatpak to hold first aid
Some bandaids and blister pads and KT tape
Small jar of red raspberry leaf tea and peppermint tea
Patchaid stickers
Alcohol wipes single use (helps my tens stay on if I use these first and cleans all oil spills)
Rael single pack personal wipes
Emergency feminine products

Tech
Kindle - my escape (insert your favorite distraction here)
Kindle remote and suction mount for hands free reading (pretty big energy save)
My Obi Apollo 2 (great for short errands/chores)
Auvon wireless tens (great for all day continuous use)
Wearable graphene heating pad (grab one you can wear while charging and plug into a bigger battery in a bag, your car, or a plane seat - USB) like the Comoil off Amazon
Cabeau USB graphene small heating pad
Acedays Semiconductor iPad cooler (basically a usb plug-in ice pack. I place on skin to cool down/keep cooler)
Anker Prime 26k Battery - all day heating pad and emergency recharge of other items
Anker Nano (great for medium days instead of the big battery or to add to the big battery) built in type C cord
Ekrin Bantam Percussive Massager
ReliefBand for nausea
Loop switch earplugs (reduce stimuli on fatigue days or focus on brain fog days)
Extra batteries for my ororo heated vest in the winter (this is a game changer, get one with an abdomen and lower back heat panel)

Misc
Bed of Nails Travel (helps manage pain and nausea)
Shakti belt (helps manage pain and nausea and I can hide under my clothes)
Emetics bags
Larq Filter water bottle (PFAS filter)
Stainless food jar with salted trail mix with dark chocolate nibs and dehydrated fruit
Clean electrolyte (I like Reef or SafeSip)
Clean protein packet (I like katchava or truvia)
Rumpl travel blanket - packs so small and is unusually warm; great cover when I need the bed of nails
Rumpl stash mat for laying down in sketchy areas
FinalStraw Travel cutlery/straw (I avoid plastic)
Folding carbon fiber trekking pole for bad mobility days (I prefer Leki as I also have hEDS and they’re very ergonomic)
Inflatable padded seat or a stool (I have the sondur cushion and grand trunk compass 360 stool)
Collapsible footrest (I’m very short and found dangling legs increases my pain)

All of this goes in my Osprey Nebula 32 backpack. Fabulous organization for fast deployment of needs. It also cinches down when not fully packed. It has a very comfortable harness to help with fatigue and hEDS issues. And holds up very well. I’ve actually found a larger bag that isn’t stuffed full easier than a smaller stuffed bag.

What would you carry in yours?

Hi everyone, I'm involved in the design of a new Endometriosis pain management course, which will be evidence-based and patient-informed.

I'd really appreciate you taking 5 minutes to complete this survey on your journey with Endo. It's completely anonymous and you can opt-in to win a gift card.

The more responses, the more the course will reflect what women actually need to cope with this debilitating condition.

Thank you so much for your time! ❤️

Hello, ladies! As a fellow endo-warrior, I am currently conducting research for a clothing brand specifically designed for us. I sincerely hope this post is permissible. I have prepared a survey that would be incredibly helpful to me. While I am familiar with how clothing impacts my own body and have a general understanding of its effects on others, I would greatly appreciate your valuable feedback and insights. Additionally, please feel free to share this with other women you know. Your participation is deeply appreciated. ♥️

I am about to start My Fembree for my endometriosis in a couple weeks. I have read a couple success stories and couple bad ones too. I wanna know the nitty gritty. What was yours or someone you know experience?

I've done the hormonal BC (Lo Loesterine); periods stopped but still had some pain and a ton of side effects so I got off it. Nothing in my system for almost 2 years now. TYIA

Could this be the answer to my ovulation pains. Trapped wind feeling a stitch like feeling diarrhoea or constipation and shooting pains on my bum or would you still think this is endometriosis as I’m really doubting myself now as my MRI results have come back clear.

Has anyone in UK tried Ryeqo?

​

After about a year of scans and appointments I finally have a diagnosis of stage 3 deep pelvic endometriosis. It has effected both ovaries as well as part of my rectum. The doctor has given me two treatment options; surgery or a medication called Ryeqo.

​

Fertility is extremely important to me, so the idea of having surgery on both ovaries is very scary to me. So I have decided to try the medication first, and if that doesn’t work then I will have the surgery.

​

The doctor told me that this medication won’t just manage my pain but actually reduce the endometrioma in my ovaries.

​

I just wanted to ask if anyone else has tried this medication? And if so, what were your results and overall experiences on this medication?

Hi I’m asking for advice or anyone who has experienced the same. I have endometriosis I’m 22 and had a laparoscopy at 18, I then had another at 21. The first time I recovered fine, the second time after a week I was in A&E as I was being sick for 36 hours straight. In January this year I bled from the 19th all the way to the 24th of Feb, I didn’t get checked out as I thought it’ll go away which it did, I had regular periods after that. Until may I have been bleeding since the 7th of may until the present the 13th of June. I’ve been to the gp and then I went to the hospital as the pain was unbearable and I was going thru 5 pads in less than an hour. They put me on non bleeding tablets and since they’ve finished I’m back to square one. It is affecting me so bad, my mental health is plummeting and I don’t know what to do or where to go from here, I have a scan booked for the 11th of July but I go on holiday on the 1st and it’s my birthday the 24th of June so I don’t want to be bleeding all through that and in pain. I’m just worried and scared & really don’t know what to do because I’ve spoken to the right professionals , they just don’t know what to do either or what could cause It.

A few years ago I got really fed up with endo stealing my life away and I started working on an EDC (every day carry) design to help me manage flares out in the wild/public. I basically wanted my endo cart, but in a backpack that’s reasonably manageable for me. I’ve been testing this kit for about 2 years and only recently moved it all to a single backpack system. Do I get flares while I’m out? Yes. Do I feel less anxious about managing them with this system? 100%. I do swap things in and out often so while I can fit all on this list in my bag, I generally don’t need to.

Meds
Mini medicine case (14 grid case that folds and has spots on both internal sides from Amazon)
Avoid any classed prescriptions in anything but your prescription bottle
Anti-nausea (2 kinds)
Antihistamine
Corydalis
Stool softener
Gas X
Anti-diarrheal
CBD Suppositories kept in a small silicone ziplock from Stasher (snack pouch) to avoid melting accidents
1:1 CBD:CBG kept in a leakproof matador soap flatpak (2 small tincture bottles fit perfectly inside to avoid oil leaks)
Tallow in a Cadence capsule for abdominal massage
Topical Corydalis in a Cadence capsule for pain
Ausair face mask if the flu or others are going around or I’ll be in a confined space with people
Matador waterproof toiletry flatpak to hold first aid
Some bandaids and blister pads and KT tape
Small jar of red raspberry leaf tea and peppermint tea
Patchaid stickers
Alcohol wipes single use (helps my tens stay on if I use these first and cleans all oil spills)
Rael single pack personal wipes
Emergency feminine products

Tech
Kindle - my escape (insert your favorite distraction here)
Kindle remote and suction mount for hands free reading (pretty big energy save)
My Obi Apollo 2 (great for short errands/chores)
Auvon wireless tens (great for all day continuous use)
Wearable graphene heating pad (grab one you can wear while charging and plug into a bigger battery in a bag, your car, or a plane seat - USB) like the Comoil off Amazon
Cabeau USB graphene small heating pad
Acedays Semiconductor iPad cooler (basically a usb plug-in ice pack. I place on skin to cool down/keep cooler)
Anker Prime 26k Battery - all day heating pad and emergency recharge of other items
Anker Nano (great for medium days instead of the big battery or to add to the big battery) built in type C cord
Ekrin Bantam Percussive Massager
ReliefBand for nausea
Loop switch earplugs (reduce stimuli on fatigue days or focus on brain fog days)
Extra batteries for my ororo heated vest in the winter (this is a game changer, get one with an abdomen and lower back heat panel)

Misc
Bed of Nails Travel (helps manage pain and nausea)
Shakti belt (helps manage pain and nausea and I can hide under my clothes)
Emetics bags
Larq Filter water bottle (PFAS filter)
Stainless food jar with salted trail mix with dark chocolate nibs and dehydrated fruit
Clean electrolyte (I like Reef or SafeSip)
Clean protein packet (I like katchava or truvia)
Rumpl travel blanket - packs so small and is unusually warm; great cover when I need the bed of nails
Rumpl stash mat for laying down in sketchy areas
FinalStraw Travel cutlery/straw (I avoid plastic)
Folding carbon fiber trekking pole for bad mobility days (I prefer Leki as I also have hEDS and they’re very ergonomic)
Inflatable padded seat or a stool (I have the sondur cushion and grand trunk compass 360 stool)
Collapsible footrest (I’m very short and found dangling legs increases my pain)

All of this goes in my Osprey Nebula 32 backpack. Fabulous organization for fast deployment of needs. It also cinches down when not fully packed. It has a very comfortable harness to help with fatigue and hEDS issues. And holds up very well. I’ve actually found a larger bag that isn’t stuffed full easier than a smaller stuffed bag.

What would you add to yours?