endo flare

[Sprocker23]

how does everyone cope mentally with a flare up. I feel so mentally drained having to keep going through flare ups time and time again it’s not fair 😭

[Joonaspryte]

I know it isn’t fair, and there is plenty to be angry about.

Lack of education by the ones that should know, meaning the medical professionals.

Lack communication between the different nhs specialists.

Lack of education in the general public.

Years of misdiagnosis.

Gaslighting.

The way the nhs just seem to want to throw pills at us.

The terrible lack of attention on our mental health, because the way we feel, has a direct effect on our metal wellbeing.

Unfortunately, we have to keep going, because we have no choice, and it’s not fair , your right.

It’s damn hard, and lonely.

Try to find a support group near you.

Unfortunately my nearest is 1 1/2 away, but I may make an effort some time.

In the meantime, come on here and rant to us, there will always be someone to listen xx

[Sprocker23 in reply to Joonaspryte]

I cant find any support groups round my area which is so frustrating

[sweetgrassandpine in reply to Sprocker23]

It's really tough going through flare-ups, it is so physically and emotionally draining. I've had a lot of them this year and they're absolutely exhausting.

I'm sorry there aren't any groups near you. I know it's not the same as meeting in person but Endometriosis UK has a phone helpline. Another option might be joining the support group closest to you and asking if they ever do online meetings. Some of them do a mix of remote and in person to make them more accessible.

The other things that have helped me are talking to people in groups like this one, and I've been doing therapy (private but low-cost fortunately, you might also be able to get it for free through the NHS). I got very lucky finding a therapist who happens to have endo herself and she has been incredible in supporting me to be a better advocate for myself.

Hope things get better for you soon

[Moon_maiden]

Hi it is exhausting physically and mentally. Where are you at in seeing Gynae/op type stuff and are you prescribed any medication?

[Sprocker23 in reply to Moon_maiden]

I’m on my 4th operation in 2 years. I’m constantly in and out of hospital with flares. On the medication reaquo. I’m on a waiting list for another operation to remove my ovary at 23 years old.

[Moon_maiden in reply to Sprocker23]

That’s so much on your body and psyche, not surprising you are struggling. Have you had a referral to the pain clinic? They focus a lot on psychological side of pain with things like well-being and meditation.

It’s hard and no one but us really understands the situation. It’s really hard to explain at times.

[PotatoSalad]

sending love to you. It’s so difficult to manage. I’ve recently read ‘Coping with endometriosis’ by Kirsty Harris. She lives with the condition and is a clinical psychologist and the book focuses on compassion focused therapy (CFT) and dealing with the impact of the mental experience. I’ve had really good outcomes with CFT and am trying to put what I’ve read in the book into action for my endo. 💕

[BloomingMarvellous]

Hugs. Be utterly kind to yourself is how I handle the flares. 🔥 It’s a bad time but it’s not the whole time I remind myself but sometimes I don’t go there with that one - it can feel a touch bitter to taste.

Now I use Curable App - they have an emergency 🚨 set of sessions which does help me navigate the tough days. It’s been a lot better with that . If I get mentally low it can be a spiral down into hopelessness all too easily and feel like others hold the key to my welfare. I find that hard to deal with and cope better when I approach it with this is what I can do for myself whilst they might get their shit together- or not 🙄. It’s that that gives me the best results long term and less flares rather than medical interventions when I’ve had them. Everyone is so different but in the end being kind to myself is probably my best wheeze.