I am a software engineer that has been stuck with endometriosis pain for more then 15 years. Recently have been taken with an ambulance to St. Thomas for having internal bleeding. I am in the process of saving my eggs so I can potentially have a child before I endometriosis invades my surviving ovary.
The point is after all this I want to give back and help. Along the way I found things that helped and some that didn't. I want to build a free app that helps you find specialists near you, where I share all my research from all these years regarding foods have improved my symptoms and so on, recipes, studies, articles, websites & books that helped.
So my question to you is, what would help you on a daily basis to have a less painful journey? Is is knowing what can you do to reduce inflammation and the pain, what to avoid? Specialists near you?
Please leave in the comments your answer.
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claudia_d
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This honestly sounds amazing and super helpful. For me, some way of recording pain levels, when it’s happening, where and what kind of pain would be so so helpful. I’m currently keeping a paper diary of it so an app feature would be so much more convenient
Oh wow I used to track in google calendar but now is every day pain so... But I found this for your need, no need to wait helloclue.com/articles/cycl...
Tips and tricks, such as dealing with doctors, information on the best course of action (excision vs ablation etc.), best courses of pain relief, non-medicinal treatments ( holistic treatments, supplements and herbs etc.), some sort of symptom checker/ q&a for example just read a post about raised ca125 levels. I feel it would have been great if that woman could have typed ‘raised ca125 level’ into an app and got an instant answer and the reason why it is the way it is, instead of having to wait for responses to get her reassurance. Maybe a food diary tracker for those swishing to follow an endo diet where they could add food items or search for food items to see if it helps or hinders. I know that certain exercise can help such as gentle yoga, maybe some info on that. Sorry if it makes it too complicated I don’t know anything about app writing so I don’t know how much work this would take.
Regarding symptom checker is tricky. Right now I am typing from the hospital where yesterday they tested me first for a couple of things before they made sure endometriosis is striking again. So I would not feel ok to mislead someone, perhaps I could collaborate with doctors and ask what would be the steps to verify if something is wrong. And give information about what is CA125, AMH what are the options for infertility like egg freezing. I was already thinking about diet and started looking into available options for implementation.
That sounds like an amazing idea! I think what you said about reducing inflammation and pain would be great, especially over the counter/home remedies if you know any. Also maybe knowing what foods are most likely to trigger flare ups - i know some but struggling to work out what causes it sometimes when i eat...
I know its not daily but maybe even a section on what to do to prepare for a lap? I know without getting some advice on here and from ladies in met in the hospital I would have been totally clueless and unprepared just things like taking pads/baggy clothes/pillow for ride home, not sure if something like that would work on it?
- managing the pain: what you can get over the counter:
--- ibuprofen(200mg/400ms/2x200mg)
--- paracetamol
- for laparoscopy: someone kind to take care of you. But also basics you would use in a trip : towel, deodorant, shampoo, shower cream, LOOSE clothes - you don't want stuff pressing your cuts.
Hospital might give you towels, pillows but you never know so is better to have someone that can bring you that.
- last but not least: you need kindness to yourself, make your live beautiful and find time for YOU, find time to distress. This is essential to eliminate that nasty cortisol.
This is such a good idea. Tips to be taken seriously by the gp. What trigger words should be said so you aren’t prescribed the pill or other contraception for pain relief without looking at the source of the concern by pushing for an ultrasound first.
Advice/ tips on what the first appointment is like with the gynaecologist because in my experience the dr wanted me to repeat the ultrasound but his manager said I should do a MRI scan as I had pain for 8 years.
Advice/ tips about pre op assessments and what to ask the nurse as I felt like at my appointment they just wanted to get rid of me and didn’t seem to know when I would be fit to back to the gym.
Advice/ tips regarding the lap as I have found this app more informative than the doctors and the leaflets they give you.
Advice/tips regarding the recovery and keeping your wounds clean as I have seen a lot of lot of posts about being left with no information after the op.
Lastly if we could share tips about coping with pain at work. In my previous job I was given a hard time taking time off work due to pain and the going back and forth with the gp and hospital. Luckily in my current workplace they understand that I’m drowsy/ dizzy 70% of the time due to the pain killers that I’m taking.
Maybe it would be good to write out stories on the app as I have only met one person who has endometriosis and it’s hard that people can’t relate to you including your family.
For now: when you talk to GP be confident, informed and perseverent. Remind them in a kind but determined way that they are responsible and accountable for your health. Do not leave till you get that appointment.
Trigger words: "I respect too much my body, so before I put any hormones that could hurt it, I want to be extra-sure and try any other non-invasive tests that is available."
Regarding nurses, doctors that feel they can treat you like that remember: they have a responsibility towards you, they are also humans that have bad days and loads of patients, you have a responsibility to choose the best help, doctor, nurse. If you are not treated properly write reviews regarding that specific person, speak to their superior.
Coping with pain at work - take before period pain starts:
- ibuprofen: 200mg/ 400mg
- paracetamol
For my case (for you consult specialist before any decision) the specialist recommended to take the contraceptive pill or mirena endometriosis.org/treatment... to stop the 6.5cm cyst from growing. If you want to be fertile that may not be the best option for you.
After operation: doctors should provide you all the information. If they don't: keep the wound clean and dry, don't make a lot of movement so you let it heal (sorry no sport or sex while recovering)
My long story short:
Been having endometriosis for 15 years. Didn't took it serious in the beginning, there was not a lot of information at the time. Been having chronic pain that would stop me from work. Besides anti-inflamatory pills and food I use a hot water pillow but this might stimulate blood circulation so be careful. I have been fired for taking too many days of and now I am very upfront from beginning and select only understanding companies that are ok with me taking 1 month to recover from surgery. I am also looking into freezing eggs or embryos so I can still have kids one day
Great idea, it's such a minefield! Symptom tracking would be fab. I use Daylio at the mo. Could it be linked to suggestions for coping with symptoms on a daily basis. Also, pathways to diagnosis & treatment would be very helpful. Option to export/ print info for the consultant. Details of local support groups too.
Info and advice on how to manage pain and flare ups would be good i.e. practical tips for managing various symptoms of endo e.g. nausea, fatigue, irritable bowels, vomiting, bloating and of course pain.
I use a mix of strategies and remedies e.g. pain relieving balms, gels and adhesive heat pads. As well as binaural beats (frequency healing) to distract from pain.
Different things work for different women but a section with what might be helpful feels important.
Also a guide to pain medication and alternatives like CBD could be included. For instance, I can't take NSAIDS anymore and have been on a variety of analgesia ranging from cocodamol to morphine! I have now started using CBD products to reduce opioid tolerance.
It can be very scary when regular pain relief doesn't work, so knowing what other options there are, so survivers can discuss such options with their doctors, to help them to reduce pain would be good.
Best wishes for the idea development and your recovery*
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