Feeling a bit lost - how to manage pain and moods?

[Littlebluejay]

Hello, I am new here, I didn't know there were places for support with endometriosis. I have no social support system really, it is just me, myself, and I for the main part, with a friend I talk to who lives in a different county now.

I started talking to my doctors about 6/7 years ago regarding my symptoms and was dismissed repeatedly regarding it. Eventually, I was blue lighted to the hospital 3 times for pain since they didn't believe it could be remotely related to my menstrual cycle and was told I most likely have endometriosis. This was last summer, I have since been referred to gynaecology but the waiting time is over 12 months and there is no way of knowing when I will be seen. They have also found evidence of cysts (endometrioma) on my left ovary but as of yet, there is still nothing they can do until I am seen by a consultant. As such, I have been told to take codeine and paracetamol daily and morphine when it is bad (which is a lot - the morphine is to enable me to walk as often times I am unable to stand now).

Coping with the pain and how it affects my daily life has been having a significant effect on my mood. I find things overwhelming as often I cannot manage tasks such as cooking, cleaning, or tidying when I am having a flare-up of pain so I find myself having to play catch up when I am okay. I mainly now only leave the house to go to work a couple of days a week, and as such, I have become quite withdrawn and socially isolated which doesn't help my mood either. I was just wondering if anyone has any tips for keeping on top of things, living with pain, or dealing with loneliness/how to become less isolated?

Thank you so much.

[MrsH80]

HiI’m so sorry that you are having such a tough time. Dealing with chronic pain at the best of times is difficult enough but with you being on your own, it must be even worse.

I used a concoction of pain meds to get me through, morphine slow release, liquid morphine, naproxen and paracetamol but also hot water bottles, tens machine and hot baths.

You need to try and find whatever gives you some kind of relief.

I also found mint tea helped with my digestion so that I didn’t become constipated which can add to the pain if you can’t go regularly due to all the meds.

Talking always helps and always on here to chat too.

Amy x

[Lynne_support Partner Endometriosis UK]

Hi LittlebluejayI'm so sorry to read that you are feeling lonely and isolated at the moment.

You may find some of our other support services of interest. We have a network of local support groups where you can meet others with endometriosis and get support and make new friends who will understand how you feel. You can find a list of groups on our website endometriosis-uk.org/find-a...

We also have a Helpline staffed by volunteers who all have experience of endometriosis, they can offer support and information or just a friendly listening ear. You can find out opening hours for the next week on our website

endometriosis-uk.org/helpline

We know that the pandemic has resulted in people having to wait much longer for appointments and treatment and has also meant that people have struggled with the isolation of lockdowns. Please take a look at our Covid 19 and endometriosis Hub, this has some useful advice on how to cope with the condition, plus some informative webinars endometriosis-uk.org/covid-....

I hope you find some of this information helpful and find some ways to deal with your symptoms while you are waiting for your appointment.

Best wishes

Lynne - Endometriosis UK