Hi

1, I would recommend trying to get through 1 day at a time, don't try to think too far into the future (living without this seems like a life time away).

2, Never give in going back to the doctors until they listen.

3, Try all the options that are recommended before opting for surgery.

4, Remember the bad pains do pass.

5, Make sure you have people around you who try to understand what you are going through.

6, Make sure you take time to relax.

7, Never be without pain killers by your side.

8, Join a site like this for information purposes and to chat to others.

9, Trying to keep busy takes your mind off it (most of the time)

10, It helps knowing where your endo is, so when your in pain you know which bit is causing it.

I have recently had a lap, a mirena coil and I am now waiting for surgery and a hysterectomy. I do manage to work full time which I think takes your mind off your own problems most of the time. Never thought pains could go on for so long or be so draining.

Hope this helps.

Miranda xx

Thank you this helps a lot. Good luck with your surgery. I know what you mean with the pain. xx

1) If your pain often becomes unbearable around your period:
take your medication from the first twinge of pain.... do not wait until it is unbearable

2) If your pain often becomes unbearable around your period: Remember to take your pain medication with you everywhere in the lead-up to your period and during so you don;t get stuck somewhere without it....

3) Learn about your rights at work i.e. your right to request flexible working hours etc... even if you don't need this now... some day you may so keep yourself informed.

4) Make sure you read up about endometriosis and get the FACTS as often as possible.... for example if you are conserned about fertility read the EndometriosisUK leaflets about it.

5) Be assertive but polite to your doctors, they can be uninformed and dismissive at times so you need to do your own reading about symptoms and referal routes and treatment options.

6) Again be assertive, read up on all the treatment options and decide what is right for you.... if your doctor thinks one way is better for you but you have reservations then get them to explain why they think it is best and then think about it....

7) Don't forget who you are... often people with health conditions allow their identity to get swallowed up in the illness. What makes you, you? keep up with your hobbies and interests and career etc

8) Indulge in self valuing activities. Whether that is hobbies or getting a nice haircut or a massage or going for a nice meal.

9) Get counselling if you have having trouble making life affecting decisions for more than 3 months.... indecision paralysis is not a way of life but remember doing nothing IS an option too.

10) join a site like EndometriosisUK so you can get support from people who understand.




Good luck with your uni work and when you have finished maybe EndoUK would like to see what the top tips are? xx

whjat subject do you study?

Happy to help! I've been living and working with endo for 15 years, had 3 surgeries, various hormones and now post surgery and attempting a more natural approach while waiting for follow up with my consultant. So, here it goes, my top 10 tips:

1. Stay positive. Not easy I know, but no matter what make sure you still smile and have a laugh; appreciate the good days and save the tears for the bad ones. Don't let your whole life become about endo, keep up with friends when you can and have other interests. Moan when you need to, but not all the time! You are an amazing woman who just happens to have a disease.

2. Eat well and regularly. I try to avoid too much wheat or dairy, tried cutting out, that was too hard, so have just cut down! I have treats still, some days are better than others, but I feel better when I have a balanced diet and eat regularly to keep energy levels up. Also cutting out caffeine has been really good for managing my fatigue.

3. Keep warm! Hot water bottles, microwaveable pads & hot bubble baths at home. Sticky heat pads for work days. Heat soothes my pain and is very comforting. I find the cold makes me sore so wrap up on cold days.

4. Painkillers. Whatever your attitude to pills, they help take the edge off. I hate taking them, so take the minimum I can get away with, but often forget and suffer for it. I have accepted I need them sometimes, I use an alarm on my phone so I know when to take them. Make sure you manage your meds.

5. Rest and relax. Again, easier said than done. I forget this one all too often! But take time to just chill out and not worry, maybe do some deep breathing, get a massage, a manicure or just have a cuppa, get cosy and watch a lovely film. Also, make sure you sleep, it's all about the early nights!

6. Stretching. Exercise is supposed to help, but I tend to over do it. On bad days I get very stiff and uncomfortable, and at work I sit or stand for prolonged periods, I definitely feel better for some gentle movement. About to start yoga and tai chi, so hope that'll help too!

7. Get a TENS machine. I have one with a heat setting too, it's from Lloyds but I got it cheap off ebay. It definitely helps manage pain.

8. Try some alternative therapies. Acupuncture has helped me a lot and highly recommend. Reflexology is also good for pain mgmt and relaxing and very nice too, although I can't afford to do it very often now. If money is tight, try a little DIY! Like aromatherapy baths with geranium or lavender. Also google acupressure for endo, there are points on your wrist and ankle that you or a lovely partner can massage which are supposed to help.

9. Be honest and ask for help. It is much better to be honest, straight-forward and open about your endo and your needs. Most people will help if you ask them. Those that don't want to know, you are better off without. Get ready to let go of some people. I know this isn't always possible, depends on your boss/company, but I have a open and professional dialogue with my employer about my health, which helps me lots. Same goes for University lecturers too. Remember other people have needs too and be prepared to negotiate. e.g. sorry bestie I cannot go out clubbing all night with you, but I do want to see you, how about coming round for pizza and movie, my treat?

10. Accept you have endometriosis, there is no cure and it sucks! Then deal with it, however you can, take responsibility for your health. I was in denial for ages, and still slip back there from time to time. Find out abut endo, and about your endo specifically (where is it, etc.) there is lots of stuff online and brilliant sites like this. Read up and research, educate yourself and your friends and family. Also research what support you can get from NHS yourself, your GP might not know what to do other than refer you to gynae, and they are all about the surgery and the hormones. So far I have found and am waiting for Community Chronic Pain referral (they offer pain mgmt, acupuncture, physio, counselling and tai chi) and the Expert Patients Programme. Acknowledge and accept you have endometriosis, but don't give up, no matter what!

tattontastic.blogspot.com/
my top ten tips published on 19th December 2011

Kind regards
Anna

Thank you you have been a big help when I have finished the article I will put it up on my blog and send you the link so you can read it if you want. If you can think of anything else to help it would be greatly taken xx

I'm studying Journalism as a BA hons degree in my second year. I think that would be a good idea to show Endometriosis UK about what people's tips are it will help others in the future to cope with this horrible disease xx

Some great responses here. Not sure if mine are completely different but I'll add them anyhow!:
1 + 2. Remember you know your own body so listen to it. It can be hard to express what's happening with your body to medical professionals and if you're not getting the response you need, be persistent.
3. There's not a lot that makes the pain bearable but make sure you're stocked up with painkillers and the hot water bottle is close to hand.
4. Talk to people about the condition and how it affects you, whether it's family, friends or work colleagues / bosses.
5. Joining a forum such as Endometriosis UK really helps with talking to people who are in similar positions and know how you feel, allowing you to vent / chat and listen to other people's stories and experiences.
6. Never underestimate the emotional and psychological side of this condition. If you need to cry / feel angry / let down, so be it. Know that there will be days like this and have a plan for when you feel like this - whether it's calling a good mate or curling up under a duvet with a book or a film.
7. For me personally, I have found that writing down my thoughts and feelings / keeping a journal has helped me try and make sense of it all and learn coping mechanisms.
8. Eat well and exercise. Easy to say when you're feeling ok, not so much when you're not. Make the most of those good days in this respect.
9. Information is power as they say. Read up on endometriosis and don't be afraid to ask questions to the medical professionals.
10. Take the positives and think of all the things you have in your life to be thankful for.

Good luck with your work, look forward to seeing the finished piece.