This isn't gonna be much of a question, just needed somewhere to vent because I am in struggle town right now.
Currently on day 6 of my period which, as usual, has been absolutely awful and has meant I've had to take time off work and also go and stay with my parents for a few days because I wasn't coping and could barely walk. I am now back at work (against their advice but gal's got bills to pay) and I just keep bursting into tears and silently crying at my desk because I feel like I can't really talk to anyone about all this. My boss and HR manager know the situation and are very understanding and kind about it but its a weird topic to bring up randomly.
Basically, I am just sick of feeling like things are never going to get better and I don't know if I'm gonna have a 'good day' anytime soon or ever feel normal again and I've just had enough at this point😭 I am doing 'better' today but still having awful cramping, back & hip pain, tugging pains down my legs, nausea and extreme fatigue but I just have to carry on as if things are normal at work and I am finding it so bloody hard today.
I have an appointment with my consultant on Monday to discuss the fact my symptoms are getting worse every month and that I keep losing the ability to walk as she thinks she may need to arrange further imaging (already been diagnosed with endo and adeno through MRI) and expedite my surgery as an urgent case. However, as its the NHS I don't really trust that this will happen as I have already been waiting so long and they keep building my hopes up just to destroy them again shortly after💔 Any advice on what to say to make them realise how bad its getting and move the process along?
Anyway, sorry for the long ranty post but I am just finding things very hard right now and don't know how much longer I can do this😔
Much love to all💗
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endo_the_stigma
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Ahh massive hugs to you, its so bloody hard when you're in a long flare up of pain and fatigue. You are doing amazing still going into work even though you feel so bad. I'm in week 2 of a horrendous flare and feel like every step I'm walking through concrete. I just forced myself out a walk and felt better whilst out and now I feel like I've climbed Everest!
Are you on any current meds? What about diet and supplements? I'm trying to eat plenty of anti inflammatory food lots of fruit and veg, seeds and flaxseed, oats and ginger tea. I take a multi vitamin, high dose omega 3 and I'm about to start DIM and calcium d glucarate which is supposed to help flush out excess estrogen which feeds endo. I've ordered a book from amazon No More Fatige by Dr Yani Feliciano. Can't comment as haven't got it but it was recommended on another endo forum. I have 3 young kids and feel like I can't function. Be kind to yourself and rest as much as possible. This current bad flare will pass. When you see the consultant just emphasise how much this is taking over your life and you feel you might need to give up your job. Lay it on thick and say you can't function and need the op asap. Is the extent of endo known through MRI? Best of luck x
Thank you for your reply and for being so kind - this disease is truly awful but its so nice that we have our little community🥺
I am on prescription co codamol (30/500mg) almost daily but try not to take it too often as its not good for you long term and I have morphine prescribed when I am in a very bad flare but only take that a couple of days a month when I think its bad enough. I do take a few vitamins and supplements including Magnesium, vitamin D and Vitamin B6 but I am still really struggling with everything😔 I already eat a lot of fruit and veg but thinking of trying to stick to a more specific anti-inflammatory diet to see if it makes a difference x
They don't know the full extent of the endo but they think it might be deep infiltrating given how much they could see on the scan as well as the adenomyosis which was very clear. Who knows but I will make sure to lay it on thick with the consultant because my mental health is completely dyer as well as my physical health at this point!
I can relate except I also have a 6 month old baby to look after. The pain and blood loss is horrific. I'm only in my 20s but I feel so weak when I'm on my period 🙁
Sending love ❤️ it's rubbish. Try to take B vits and if exhausted I take LTyrosine (you only take it intermittently). If you need time off then take it, but I know how hard it is. Push on the pain front with your GP. Take care x
the things that are helping me at the moment are cbd tea, tiger muscle balm solution, diclofenac suppositories xx i don’t know if you are on any medication but i alternate that and cocodamol when im on my period so im not on either too long. It’s the fastest working pain relief ive found so it might be worth a try. i hope you can get your surgery soon sending love xx
I believe your problem lies with the inflammation caused by your endo affecting your sacroiliac ligaments which is putting pressure on your back and in turn pinching your nerve causing leg pains and back pains. Have you tried an anti-inflammatory diet, avoiding wheat and gluten completely? That has been shown to work in many women with similar symptoms. For more help and advice you could try a good nutritional therapist like Dian Shepperson Mills endometriosis.co.uk/
I am so sorry you are suffering so much as many of us on here do. It is so wrong that we are left to suffer like this and for so long while we wait sometimes years for treatment. I am so pleased that you have a consultant appointment, write down all you want to say and take it with you, make sure you tell him all the symptoms and how it affects you .Ask him how long it will be until treatment, what you can do mean time to get some pain relief. I am glad your Boss is supportive-do raise how you are feeling with them even though it is difficult. They may be able to make some temporary adjustments /changes to your work to help you.be kind to yourself and rest as much as you can. Hope your consultant appointment gets you a speedy resolution.
Thanks for your reply lovely🫶 I have my appointment this afternoon and I feel completely sick with anxiety about it to be honest but I do have everything written down (new/worsening symptoms, questions about surgery and waiting times as well as other things I have noticed etc) so hopefully it will go okay and my mum is coming with me (she's a badass in situations like that😅). Thank you for your advice too, it is much appreciated and I hope you are getting through okay💗💗
I’m sorry to hear you’re going through such a rough time and hope you soon feel better. On the NHS front, I have family that work in the NHS and they book based on priority so make sure you really emphasise your symptoms to the consultant and you can always ring the department and ask for them to put you in if there’s any appointment cancellation spots, so your appointment is earlier. I did this with my initial ultrasound scan and got in on someone’s cancelled appointment a couples weeks earlier than when mine was booked for .
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