I just wanted to know how everyone manages to stay positive and live a normal life whilst dealing with debilitating endo on a daily basis? I got my diagnosis a few months ago for severe stage 4, at first I thought I was handling it pretty well but now I just feel so down all the time. I’m in constant pain every single day from the minute I wake up to the time I go to bed. I’m trying to live life as normally as I can but everything is just sooooo hard, life is just a struggle. I don’t want to give up my job that I’ve worked so hard to get but all I can think about is the constant pain I’m in ☹️. There’s no support anywhere gp’s just don’t care you get passed from pillar to post.
Sorry for the rant I think I just needed to write down how I’m feeling! Hate endometriosis with a passion!
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SK2021
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I know what you mean.I changed career last year and now I’m a teacher. I get up every day and stay happy for the kids. They need consistency and they go through so much that I do it for them. I give everything I have but end up with one day a week where I’m in bed not moving.
Currently taking regular meds but also have a tens machine that helps too. Big hugs xx
Hey thank you for reaching out it means a lot. It’s lovely you’re using the kids to motivate you. I’m going to keep fighting it too hopefully take each day as it comes xx
I know how you feel. I am still waiting to see gynae after being messed around at a previous hospital. Everything is delayed with covid. My GP has been really supportive but I feel so low mentally at the moment. I’m tired of being in pain, trying to stay positive for my children and continue to work. I’ve started following the endo life on Instagram and trying to make small changes which is helping xx
Hey thank you for reaching out. I know endo is just so cruel. I’ll will have a look at endo life on instagram thank you for that. Stay strong hope things get better for you xx
Hi sk2021 I feel you, I have end stage endometriosis and my pain is unreal, I’m just about to have another lap done in February to drain cysts and see how bad things are inside me but predicted to be bad. I gave my job up in January 2021 (very reluctantly) I couldn’t carry on working with the pain and the meds I take I didn’t feel safe to drive or carry out my work. After this lap I have a choice of another cleanup with multidisciplinary team present as I have endo on bowel bladder and kidneys or opt for hysterectomy, I’m going to wait until after first surgery then decide what to do. I also have adenomyosis which doesn’t help with the pain. It’s constant for me all day every day. Sending hugs to you x
Hey thank you so much for reaching out! I really hope things get better for you soon it’s no age for us to be living like this. Hopefully your larproscopy in feb will help. I’m waiting for a lap too hopefully March/April time. It’s just hard to function when all you can do is think about the pain your in all day xxx
It certainly isn’t a joke at our age, it is debilitating and nobody seems to take us seriously. I hope things get easier for you too and good luck for your op xxx
Don't be afraid of taking anti-depressants if you're not already. They may may a huge difference - some even help pain. Mine help to ease the feeling that someone turned the gravity switch up too far, if you know what I mean!
Even a little bit of exercise is better than none- remember to be kind and praise yourself when you do it (even 10 minutes of something gentle) and try to build it up as it really is the BEST thing for your mind and body. I have a tick list to encourage and remind me to do some. Yoga, the exercise bike and walking in my local park help me personally, and believe me it takes me a lot of effort to get on that bike- I do it in front of a favourite TV programme as motivation/reward.
As my nanny used to say "count your blessings". It usually works to have a think about the things you are grateful for- it moves your mind into a more positive place and worth doing every day. When you're really down, find at least one good thing that happened to you that day- then you set your mind to try to notice good things- like; the train was on time: I got a seat; someone smiled at me. Etc... this builds up until you notice more good stuff than bad.
Having said all this, pain sucks, be kind to yourself and ask for help from loved ones when you need it because you are struggling and deserve some help and kindness.
It’s really hard to your not the only one feeling like this doctors and consultant don’t seem to realise how bad my pain is I’m on a waiting list for another laparoscopy xx
They really don’t realise atm I’m having norethisterone 2-3 times a day I have a mirena coil and monthly zoladex injections is it any wonder I’m feeling like this?? I just get fobbed off each time I try to tell them how I’m feeling xx
It’s been the worst year of my life I’m constantly in agony and they’ve got me drugged up on morphine and i fee so poorly like there’s an infection in my body I was on antibiotics for 6 months now I’ve been put back on them till my next laparoscopy don’t know when that is cause they couldn’t give me a timeframe on how long il be waiting I physically can’t do much now and before this I was at work everyday and did everything in the house now I can’t keep up with my housework the doctors just look at you like your stupid and I’m at the end of my tether mentally.hope you don’t have to long to wait and thanks for replying this group really helps just to talk to people in the same position xx
I feel the same - I think my anxiety has doubled since my diagnosis and when I miss things at work because I’m ill it spirals me even worse as I feel like they are going to get annoyed at me. (They don’t, my employer is luckily fantastic) but I build it so much in my head. My endo has really affected my bladder as well so no matter where I go I’m always anxiously thinking about toilets which makes me panic.
To help though, I do a lot of reading, list making so I can tick things off, lots of walking and listening to podcasts to try calm myself. I’m utterly terrified to ask for medication for my anxiety - I don’t really know why though as I wouldn’t decline the pain killers I need for my pain!
I’m currently awaiting plans for next surgeries so trying to remain positive! Some of the posts above have also helped me greatly so thank you! X
Thank you for reaching out! It’s good to know that there are nice understanding employers out there. I’ve just started a new job so I’m putting extra pressure on myself I think. All the best xx
Sending massive massive virtual hugs. As you can see from the responses above you are not alone and its learning what works best for you. Although I have undiagnosed? Endo ? Ibs ? I have found great relief from tricyclic antidepressant for pain relief. I've tried Amitriptyline and imipramine and now starting a new one just from the side effects but they helped with the pain. I've also started on 4 drops of CBD oil x 3 times a day as well. Sending love x x ❤️
Awww thank you it really does mean a lot when you’re feeling low! Did the amitriptyline make you feel drowsy? That’s the only thing that scares me. Has the cbd oil made a difference? Xxx
Hiya. I tried Amitriptyline for a few months and pain actually went away so I made the mistake of coming off it. When my pain returned I was reluctant to go back on it because it gave me a hangover every morning and I get up early for the gym. It did work though. It didn't make me drowsy during rest of morning just when I awoke. It wasn't scary just a bit of a wonky feeling. Then I went onto imipramine but that made me constipated. Now trying a new one Nora... just starting today. I do feel more relaxed with CBD oil which does help.
Everyone reacts differently with meds so why not ask your Gp to see if you can do a trial. I would recommend buying the CBD oil expensive I know but I think it works in conjunction with meds. Good luck and let us know x x
Hi there. It is completely understandable that a chronic condition which is so debilitating and painful affects our mood and our ability to cope. I completely empathise with your experience. In addition to endometriosis I have experienced clinical depression and anxiety. I believe you can now self refer for help with mental wellbeing on the NHS here nhs.uk/service-search/menta... but if not there is no reason you can demand this of your GP given that your health condition is chronic. I wont say its always perfect but like everything else you have to push for decent help. My most recent experience was for depression associated with menopause and chronic back pain. Initially I was referred for 'group' stuff but when that didn't work for me they referred me on afterwards to one to one counselling and I found that helpful. It doesn't stop the pain or change your condition but it can help you with strategies to manage the burden, be kind to yourself and to perhaps feel a little less helpless. At least that was my experience. I truly hope you are able to get some decent support.
Yes. It is so horrible to feel pain constantly, especially when no one can see what causes our pain. I’m sorry you are going through this. I too have severe endo diagnosed 8 years ago. Robotic lap to remove but no follow up care. I felt I should be happy especially after my son was born. But I never felt worse in my life physically but mentally too. I blamed myself. Until I finally reached out for help(soooo hard to do sometimes!) and talked with a counselor who mentioned medical induced depression. I also developed anxiety with endo. I was so resistant to taking meds (afraid of side effects) but now that I’m taking them I wish I hadn’t waited so long. I’m taking citalopram for over a year now and it’s made such a difference. I can take stock of my surroundings and manage life calmly now instead of always being overwhelmed tearful and rage. Makes me a better mom too. Exercise and talking to friends who get this disease helps, but it’s ok to take medication too if needed.
I don’t have any great advice for you but I wish you good health and I hope you can feel better soon. I have been feeling very down due to endometriosis but it is my partner who has it and has shut me out of her life so I am a second hand sufferer and feel equally powerless as all the brave women and NB people with endometriosis who wish for a cure. But one thing that helps me is to celebrate the small wins in my day. I don’t know if that will help you but I am sure this group is a good place for you to seek some advice. Good luck for the future! 💛
Sorry to hear you're in constant pain and are suffering from low mood due to your endometriosis. It's lovely to see that so many of our forum have reached out to you to offer support and to share their stories.
Alongside our forum, we also have face-to-face support groups all over the UK, where you can discuss your symptoms and concerns with other sufferers. To find out if there's one in your area, just visit endometriosis-uk.org/find-a....
If there isn't one in your area, we also have an online support group.
On our website we also have a downloadable Treatment Pack, which contains a variety of suggestions for pain relief. You can download it at endometriosis-uk.org/endome.... It also contains suggestions for complementary therapies that can help to improve mood - hopefully you find something that works for you.
Finally, if you ever feel like you're really struggling, please don't hesitate to call our helpline (0808 808 2227), which is manned most days by our volunteers - all of whom have personal experience of endometriosis. Details of the helpline and other forms of support can be found at endometriosis-uk.org/helpline
I wish I was able to tell you, but I'm failing at living a normal life and my mental health isn't good either, it's a struggle to stay positive each day. I spend most days resting whilst my daughter is at school so I can try and be a normal Mom when she gets home. Most days I can't drive because of my pelvic pain and I live in a very rural village. I had a lap done 3 and a half weeks ago and I've not left the village since then. Most of my friends don't bother visiting even though they know I can't get out. Thank goodness I have a wonderful partner for support and our daughter to keep me sane. Sorry not very up lifting, I think I needed a moan! 🤦🏼♀️
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Endo and Mental health
BOWEL ENDO/FATIGUE/PAIN MANAGEMENT OPTIONS & MENTAL HEALTH.
Mental health
Endo returns way to quick! So fed up!
Suicidal thoughts
