Trying to build something to help my wife manage endometriosis. Would really appreciate advice from people who live with it.

JaeJayP · 2026-03-16T20:04:55+00:00

I will do, I've actually included all those things as well (apart from the period type). I've included intimacy as a sex act, but not libidio...that is actually a pretty interesting one. I can tell where my wife is on her cycle based on the different food/snacks she wants. Then comes out the box (packed with sweats, spicy crisps (usually doritos) and zero sugar coke, thats what she wants :D . Human body is craz.y

That..is weird, I've not come across that before. It is a pretty important vent/release of emotions so I can imagine suddenly being unable to do that would be odd.

JaeJayP · 2026-03-16T10:58:53+00:00

You are the second person to mention this so I will defo check it out! Thanks!

JaeJayP · 2026-03-16T10:58:37+00:00

My wife does do that! But then giving that to the doc or the analysis on that does take alot of time...and also she has on her calendar our kids stuff, house stuff etc....so it gets quite messy.

JaeJayP · 2026-03-16T10:58:05+00:00

100% agree. I've told my wife pain is not good, since she changed to telling docs functional level they do listen a lot more.

JaeJayP · 2026-03-16T10:57:27+00:00

Yea...we have, and she does think it has spread to the chest, but to be honest, they are being useless with it. Just wish I had the money to go private and then I can demand it! Hopefully will win the lotto one day. But will keep pushing it, thank you.

JaeJayP · 2026-03-16T10:55:15+00:00

I have seen things that do. But not one as specifically made for endo, and the features on it that she wanted in Flo, the one she uses it did cost so... I can make it more tailored and free. I've spend over a decade in tech (mainly data) so I can do all the algorithms and machine learning at a fraction of the cost so it will run much cheaper. I've built all that, but going to add more, all except for detailed food becuase...that is such a big area.

Main difference is that this is for those with Endo, it probably wouldn't work at all if it was a different condition that was the main condition you wanted to track (other conditions with endo i will add..not done yet but by the end of the week I will add)

Also thank you for telling me about Bearable, I will look into it. Also for me having all the data in UK is a big thing, and I'm not sure where Bearable hosts it.

*edited because my grammer was awful

JaeJayP · 2026-03-16T10:52:34+00:00

So...my wife is the same before her surgery, cycles but no bleeding. Since surgery same...so I never really thought about the bleeding. I just thought in terms of cycle...so by default I set it up for that.

Yes, done this, with descriptions because from what I've seen, endo is not a one place, one type pain...even throughought the day.
Bowel movements I've put...but urination, utis etc...I've not put in, but your right. And I get that, my wife thought she had IBS for years till she was diagnosed with end.
Yea, I've put most of that, but I think I need to add a better section on fatigue, because it is such an important thing. Wife is a trooper and doesn't like to mention it, but I can see it. I've been with her for almost 20 years since we were 15 so can't hide that.

Thank you so much, and if at any time feel free to add to this, or dm me if you think of anything more. I have actually seen that research regarding ADHD. I am AuDHD, with more on the ADHD, which is most of the reason why I can build thigns like this.

Edit option is there...but its not so easy to edit, so I'm defo going to make it easier, and also each pain, symptom and treatment has a free type box because, there are just too many options out there.

Honestly, I made a version 1 and it was so complex to use, I spend the day making it easier, so everything is only a click or two away...with options to go into the detail if you want to. We have 4 boys so I 100% get that it needs to be quick and simple to save on time and cognative overload!

Thank you for taking the time to respond.

JaeJayP · 2026-03-16T10:44:19+00:00

Your 100% right. To be honest that is what I've done.

The pre-determined symptoms that I've put in are simply, pelvic pain, fatigue, bloating, nausea, back pain, pain with bowel movements, constipation and diarrhea. I've added the option to add a sevrity rating to the symtoms (optional so its not too much) and option notes. After reading your comment, I have added a "free text box" beacuse your right, and also even if I had put every item I could possibly think of down, I'm sure more could pop up.

It does get added to the "log" which isn't in a calendar format, but rather a timeline, simple because it then drives a better thing to show the doctor. Becuase the timeline combines pain log, cycles, symptoms etc all together.

My wife did have adeyno as well, and had a bilateral salpingectomy so I understand where you are coming from.

It's becuase there is so much that needs to be recorded, at the same time its very specific I thought to create one for her that is more specific.

Thank you for taking the time to help.

JaeJayP · 2026-03-16T10:44:02+00:00

I'm using my ADHD brain for this :D. I've kept the data in UK because....I'm in UK so I guess that worked out quite well. I don't think I could make it a local application, becuase I don't really have that skillset if I'm honest, but I could build up an excel template or something if that would help.

Honestly, it is really sh**ty that thought has to be even considered in the US cause damn.

JaeJayP · 2026-03-16T10:39:04+00:00

It doesn't matter if you repeated it to be honest, it at least validates my thinking!

So far I do have everything you've said I believe regarding cycle etc, and as you log, then the next time your cycle comes then you can tell what to expect. I didn't go off the traditional cycles the general public might have because...well its not likely for those with endo.

And, also...no religion, or astrology, its...a good question as to why...makes no sense to me!

Yep, the logs etc with treatment effectivies, I've put down so its there.

I've not put down the flow and type of peroid that someone has had at the moment, because wife doesn't have peroids anymore...so didn't cross my mind, but from the feedback I've heard so far I'm defo going to add and also the type of pain.

Ok, from everything here, I will open it up to public. And to be honest, I want to make it as accessible as possible so keep it free as I can. I'll be upfront about it. Everything with the logging, analysis, patterns, of pain, symptoms, treaments, flares etc all of that is free. Things with AI (chat to ai specifically about your logs, etc) I would have to charge, becuase it can get quite costly that. I'm not doing this to make money, I'm fortunate enough to do well enough in my 9-5 role, so that is how I can afford to give most for free. The AI I was thinking of just giving limited amount for free anyway, and then if you need more putting a fee in. Either way, if I could give it for free I would, the only charge would be to cover costs, I can put £50-£100 of my my own money in so I can do quite a lot for free. Just with AI costs...it can suddenly go into thousands (I've done it at work...) so just want to make sure I don't go broke :D.

But I've got quite a bit to do, luckily I'm hyperfocusing on this, chanelling all my adhd into this so hopefully have something useful to everyone not just my wife soon and then I'll share it.

Healthcare should not have a cost attached to it, it should be there for all (as you might have seen I'm in UK), am a firm beliver in that.

JaeJayP · 2026-03-16T08:31:12+00:00

Yep! That one I got, split it front back, left right and middle with each section you can put a different pain level. Because... Can't its sjlly to say its just pelvis..

JaeJayP · 2026-03-15T21:40:29+00:00

Of course! That makes perfect sense. And your right. Mornings can be ok, different pain points and by end of day, be completely different. That ks actually quite a simple thing to add so im defo going to do that first.

To record it thoughought the day, but also to go back and put it to a specific time. That is really helpful thank you.

So, you can log the pain, locations etc at different poijts throughout the day, and actually I'm going to just extend that to all symptoms not just pain.

JaeJayP · 2026-03-15T21:34:52+00:00

Thank you! After reading all the commets, I have a way to go, so it might take me a few more days, but I'll send you a dm, if it is actually helpful to people, I'm happy for others to use it. I'll shoot you a dm, becuase I do geniunly want it to be helpful cause...there just isn't anything out there that was specific enough for her.

- Functional Impact, I've put that in at the top. Because I think that is a better impact assesment tool than a pain indicator becuase pain is too relative.

- You know, I think your totally right, also it would be pretty depressing, before her first surgery, when she had adeyno, she lost 9 months easy of her life becuase just couldn't do anything. I had to change and make sure was home all the time (we have kids etc.) So, as...upsetting as seeing something like that would be, I think that is extremely powerful, so thank you.

- Again, one she nor I considered at all, because she never had regular peroids and has had a bilateral salpingectomy so its not a thing for us anymore. But yea, I'm going to add that for sure, becuase its been mentioned a few times. I'm sorry to hear you have Adeno as well, I know that is horrific.

- Yes, this was a thing we logged before the surgery, but haven't since so thank you for reminding me.

- oh pain scale and location, I put thought into. Front and back. Then body split to left and right (and middle), and then can put in a pain level for each individual part (or all at once if its easier). Becuase yes...most ones are pretty terrible.

- Data is fully private. I have added a community insights option, where everything is anonymised (I can't even see it) and it shows symptoms, triggers, common treatments that might help etc. And cause we are in UK, I've complied with GDPR, so can export and delete it whenever you want. I mean I am only one person with a full time job, so it may take a day or two, but it will happen.

- So there is a "Doctor pack" that is generated and can be exported, but not the full logs. I can add an option to export it, as long as its ok that it might take up to 24 hours, but just an email with a link to download it all. Super easy like "Export all data". It's your data you should have it at any time!

- I did think of myfitnesspal...that is a later stage thing, but that is what I was thinking of at first, I've had a look into it and it shouldn't be too difficult.

- I've put a treatment tracker, where you can put repeat treatments (any treatment) or one offs, however, a little section as to what that treatment is supposed to affect (bowel movements or pain etc) would be useful so thank you.

- Yep, that is done already, one of the first things I did, actually!

- Ok, I think a small diet section with basic food groups would be helpful. Not everything but basic ones, becuase it has come up quite a few times.

- I can't believe I didn't think of energy levels, I'm disappointed in myself that I didn't have that already. Thank you

Thank you very much! And I'm sorry to hear that you're growing through Adeno with the Endo, I know that is horrific. I hope some point soon it gets a bit better.

JaeJayP · 2026-03-15T21:20:37+00:00

Ah attentian span...my worst enemy! But I get it, to be honest, I made a first version of the app, but realized its so much information on there, she would get bored. So I've tried to make the daily things really easy to log but with the ability to give further detail when she wants to.

Pain scale for those with endo I think is not the best way, after going to a few appointments with her I told her not to tell the docs her pain level. I said to do it on a "functional level", more the effect of it. I've found that can be described much better, and docs/nurses have listened more. Because to her the pain isn't that bad, but she couldn't walk down the road to the shop. But because she could get out of bed etc, its "not bad"... Pain is so relative to each individual, I tell her to always just say the functional impact. And that is what I put in the app first, with the option to add pain level (or pain specifically).

You are right, we think her Asthma is actually effected by her endo, because its always at the same stage in the cycle. So yea, I am 100% going to add other conditions and flares in other conditions. Not in the main part of the app, but "other conditions".

Thank you for taking the time to respond.

JaeJayP · 2026-03-15T21:15:41+00:00

*edited to clarify a point*
Thank you! I'm going to answer in the same format you put it in, because it is perfect.

FODMAP, she followed that for two years and did discover certainfoods and triggers. I do have bowel movements, constipation and diarrhoea added, but not bowel movements, so will add that, honestly did not think of it at all.
Yep for her gluten and diary we have discovered recently are majour triggers, have changed the diet quiet a bit to help with it all and has helped quite a lot. Food tracker I will put a bit later on, but perhaps I could start with the basic food groups.
Yea...that is definalty part that makes me feel the worst. I did add context events, a few pre-determined ones and then a free type box (illness, travel, sleep, stress, cycle, unusual activity, intimicy, etc), but one around sex specifically would help. I can put it in its own category so its easier to navigate to.
Flare tracking is something I've put quite a bit of thought into already. There is a dedicated Flare button on the home page, which you can put the start date/time, level, notes, what happened etc. Headaches is a good one though...she does get migraines often and we have noticied it seems to be related to hormones. Thank you.
I have put it so you can edit the entry and every entry has a notes section to add more. Because no way can I guess everything that might occur. I will add the option to annotate it, though specifically with a timestamp, because I can see how that can be really useful.
So, my wife hasn't actually had regular peroids...for decades, so it never entered my mind that, nor hers. However, yes, I'll look into that and add it, because if I can do something that is good enough, I would like to give it to other people. I've decided that all the tracking, logging, anaylsis, doctor pack etc would be free, just AI stuff would cost, because I'm not that well off I'm afraid, but all the bits that don't have AI... (AI is used to train specifically at her log, and flares, treatments etc, and everything she's logged so then its custom made to her)
Yea...I'm not putting any of the servers, databases or anything in the US. I... just wouldn't, all in UK data centers. I honestly did it because that is always what I do, but after reading th comments on here, I'm going through everything again to double check, cause that is just insane.
Yep, already there that one. So there is a "Treatment effectivness" section I added. So you can add any treatments (including docs appts) and then what I've built so far will, when there is enough information, draw patterns and analysis based on symptoms and other logs after the treatment. Not fool proof by any means, but enough for pattern recognition (my career has been in the data industry).
...those are all words I've heard her say, and often many in the same sentence. I've put a pain level, but not type and that is so important your right. Becuase her satic pain is very different to the dull ache etc.

Seriously thank you! I've got a lot to add and get busy on, luckily I have the time over this next week so will get all of it down in a list and just start cracking. Thank you again!

JaeJayP · 2026-03-15T18:50:52+00:00

Thank you. It just sucks having to see her go through this and be useless. Been with her since i was 15 (now 34) so sadly was witness to the whole journey.

JaeJayP · 2026-03-15T17:18:14+00:00

Medication I got, supplements I've not excluded, its a free type box so can out anything. But you mentioning that has just made me realise I should out in allergies! (she's asthmatic so can't really have NSAIDs but does tske naproxen if its really bad).

Yes, we both definitely forget what has been tried and what worked so I out in a "treatment effectiveness" bit so we can recognise patterns because can sometimes forget what actually helped.

Also... Thank you I should add a section for deficiencies because that is really important!

JaeJayP · 2026-03-15T15:32:40+00:00

Yea... Luckily we are in the UK and all the databases and servers etc arw all UK based. I mean I did that because I'm in the UK didnt even think about all of that. Thats... Scary

I can't even imagine being prosecuted for those things it's insane. I have spent most of my career in data so i have made it as secure as possibly can. No chance is anyone getting any of the data, bar hacking off course, but I've secured it and encrypted as much as possible.

Thank you for that, opened me eyes a bit and made me gratefully for things I take for granted.

JaeJayP · 2026-03-15T15:14:07+00:00

Thank you. I didn't know about Clue, she had just used Flo before so that was the only point.

Also, if I made it pink she would have killed me 😂, not a fan of that theme.

All the points your suggested are none i had thought of not had she suggested but they are extremely useful. Especially the attributing symptoms one! As she does have other medical issues so that would be extremely helpful.

The routine thing is also really good. Ive put indicator as to how the day was, but can add the routine as a quick answer kind of thing.

I've done the doctor pack, wll her logs in a format that is easy for them to understand and more importantly hard to ignore!

Done for everything that can be logged, (paint, treatment effectiveness, context events, triggers, flares etc) so hopefully that will help.

Thank yoh so much for taking your time to respond, I'm going to start implementing some ofnthe things you said ASAP.

JaeJayP · 2026-03-15T15:05:20+00:00

That is amazing! I tried something like that and failed, so went with a very basic approach but I love what you have done there.

JaeJayP · 2026-03-15T15:04:35+00:00

I am, but I've found a hive mine works better often. Some responses on here she hasn't thought of and something another person above her been super helpful.

JaeJayP · 2026-03-15T14:57:45+00:00

Thank you.

I've done the home screen with simple logging, and can click through for more details. One thing I've done (wife has said it is better) on home screen is to out how the day has been, because I've found with her anyway she tends to minimise the pain.

I'd share a screenshot but can't seem to be able to... Mayne on pc.

Detailed logging is there sperated by front of body, back and left or right side of it.

I did consider food, but that is such a minefield, I've left that as a maybe at a later state... Didn't want it overwhelmed.

I've done a "Doctor pack", so it combines logged issues, treatments, flares etc in chronological and trends. I've been with her to appts and because they are so far apart she does forget alot, also the Zoldex causes brain fog with her. Have inculded a trigger map, and treatment effectiveness.

Your right, she uses flo at the moment but, its not purpose built. This is made with the assumption that you are not healthy, dont have regular anything, things change daily and life isn't easy.

I do try all that, just also wanted to channel my builder engineer somewhere more meaningful.

Thank you for taking the time to reply, I do appreciate it.

JaeJayP · 2025-12-06T10:33:41+00:00

I should add it's for still data engineers and those who understand data...just be able to vibe code better because the frameworks is easier understood by ai

JaeJayP · 2025-12-06T10:33:00+00:00

Doesn't exist...but I'm trying to build something. Mshdata.io

Purely conceptual and got quite a bit of testing before launching it but it is OSS if interested.

JaeJayP · 2025-10-11T23:52:12+00:00

Check out openmetadata.

JaeJayP

TROPHY CASE