Struggling a lot recently: Hi everybody... - Endometriosis UK

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Struggling a lot recently

uglyduckling profile image
14 Replies

Hi everybody,

I hope you are all have an OK day today.

I just needed to have a little bit of a rant if I upset or stress any one out then apologize I did not mean to.

I had a lap a year and a half ago to diagnose endo which I believe I have suffered from since I was thirteen.

Since then everyone has said we have removed all of the endo you have, which I do not believe.

Can any one help me please as I am losing the will to live and now have become suicidal.

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uglyduckling
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14 Replies
lillyflower profile image
lillyflower

Hi I'm sorry to hear how bad you feel and when people aren't listening to you its easy for it allto overwhelme you. Please, please call your doctor and tell them how you feel. I went to the doctors as the constant pain and the emotional wreck that I felt was all getting to much so she was very understanding and I have new pills to help with pain and as they're also used as anti depressants have really helped me memtaly cope with everything. I was a bit worried thinking they'd make me feel dopey but I can honestly say I feel much better and are keeping me sane! They are called nortriptyline but there are other types. Don't sit and suffer alone ask for help and if you feel you need urgent help from suicidal thoughts call NHS 111.its so hard to fight your way out from those thoughts but help is there and we all need help to cope sometimes xx big hugs xx

uglyduckling profile image
uglyduckling

I a all ready on anti depressants and I am also on Tramadol and they will give me nothing else I have had enough of them I really have.

Cloudyrain profile image
Cloudyrain

Call 111 and ask for help doing a self-referral to the mental health team. The problem is GPs haven't got the time to spend with people and palm them off with anti-depressants, rather than taking time to work with them. Even try calling the Samaritans - they aren't there just for people on the cliff edge, they also help when it's the metaphorical cliff edge (if that makes sense).

Counselling can help massively, but gentle exercise and diet change also contribute. However poorly you feel, just walking for 10 minutes, or dancing to a few songs on the radio gets your heart pumping and your positive hormones flowing. Also cut out all caffeine and alcohol, it's bad for endo and bad for moods (and that includes chocolate I'm afraid).

A lot of the time with depression caused by illness it's a feeling of helplessness and inability to control your health that feed the depression. It might sound daft, but feeling like you have that control back, even if it's just a bit can help loads. Accept that you will have up and down day, but make the most of the up and comfort yourself on the down days. Don't hesitate to seek help from friends and family, you don't have to go into why you need them, but people need to know you are hurting.

I think we'd be lying if we said we hadnt felt like you do now honey, i doubt there is an endo woman out there who hasn't felt like this.

I hope that helps a bit, we care about you honey and don't want you to be feeling like this x x x

uglyduckling profile image
uglyduckling

I try and go swimming at least four times a week. I do not drink caffine and I do not drink alchol.

I have been referred to a psychogist but I will not be seeing him again as he lied to me and let me down..

I just feel like there is no escape.

Thank you for being there.

Impatient profile image
Impatient

Something is causing your pain levels, is it all over or in one particular area?

And is it all the time or cycling with your period making things worse?

When did you last have a scan to check for any new cysts growing?

18 months from a lap op is ample time for new cysts to be growing.

Or the endo or surgery might have damaged certain nerves, so it's not the endo but nerve damage that is causing your pains?

You also need to review the anti-depressants you are on. Some of them can make suicidal feelings worse than others. Seroxat is one of those. Which one are you on at present?

The first one I tried didn't suit me at all, then I was switched on to Prozac which did work really well on me, though not without its own side effects. The drug that didn't suit me, is the one my mother was put on and wow what an improvement it made in her life, so it can be really helpful to try out different ones if you are not seeing benefits in the quality of your life on one particular sort.

Hugs to you, it is wicked being in severe pain, and depressing and exhausting, but somewhere out there is something that will help your pain situation. Tired out as you are you will have to muster strength to see your GP practice and speak to Doc about trying to get refered to specialists that might be able to identify what is actually causing you the pain if the endo has been removed.

Also to have a medication review as the ADs are not improving your life right now as they should be doing. Please hang in there, I know it's so hard to cope every minute of every day feeling like you do, but something in the world of surgery and medicine will be able to help, it's just a matter of finding it. If your own regular GP is not being proactive and helpful then try a colleague. Don't forget to book a double appointment as you have a lot to discuss and the regular few minutes appointment time will not be sufficient.

uglyduckling profile image
uglyduckling

Changed my anti depressants three times.

They will not give me any scans or anything else they say nothing is wrong and I a just making a fuss.

I am in constant pain and it is all over my stomach and back.

I am so stressed out at the moment.

Cloudyrain profile image
Cloudyrain

You are obviously fighting hard for yourself, you should be proud of that honey. Going swimming 4 times a week is brill, and well done you! :)

Sorry you haven't had a good experience with your psychologist. You have a few options from here.

- Firstly you can ask to see someone else: i had a similar situation a few years ago (serious breach of code of practice and they were struck off because of it) and was reassigned to someone who was wonderful!

- The other option is attending a drop in clinic for a while to build up your confidence. This might suit you as it's more patient-led and as you are obviously working hard yourself they can support you.

- independent counselling which will cost anything from £30 per hour, but make sure they are appropriately accredited (BACP for example).

- look at groups or activities that can be helpful, for example a writers circle, photography club, tai chi class, local self-help group.

- try writing a journal. Make yourself write a good thing for every bad thing, and always a tomorrow thing to look forward to: e.g. Up at 3am in pain...Saw an episode of Friends haven't seen for ages made me laugh so much....going to get some strawberries tomorrow to make a fruit salad with.... (well in a bit more detail than that, but you know what I mean).

Sorry i have rambled on, i just hate to think of you being so sad because I know how it feels. There is light in the darkness though honey X x x

maeline profile image
maeline

Please don't give up ! Change gp... The medication could make you feel worse or before periods or your progesterone levels are high due to cysts .

Carry on the swimming , do things you like watching TV, taking a bath , spending time with friends and family .

I am awfully sorry you feel like that but it will get better . Take a day at a time .

Thinking of you take care xxxx

Juleyanne profile image
Juleyanne

I tried just about everything and several anti depressants. Each one gave me horrible side effects which differed such as nightmares, grogginess, some made me hyper and I nearly had a couple of accidents. Then I tried Mindfulness Meditation through my local Wellbeing Centre (Buddhist Centres also do these) and I found a way to cope at last! When I arrived for my first session, I was a wreck physically and mentally, anxious, depressed and unsure. It took me a couple of sessions to learn to breathe which sounds bizzarre as we breathe all the time but just that aspect of it changes everything! I could not imagine I was capable of achieving a quiet peaceful meditative state, but when I did, the whole way I was changed dramatically and even my pain softened.

Mindfulness Meditation is taking the world by storm, being adopted by the NHS! It is a mindfulness based cognitive therapy) developed as an extension of Jon Kabat-Zinn's work in the USA. The core aim is to prevent the consolidation of self perpetuating patterns of negative thinking and feeling that may escalate via mood states into depressive relapse to help people prone to depression/Anxiety to stay well. All revolve around means to become more aware of negative patterns of thought and feeling so as to 'step out of' ad stay 'out of' them. MBCT introduces practices and skills that aim to bring about a different way of relating to experience, replacing 'old mode' of 'fixing and repairing problems with a mode of allowing things to be as they are, in order to see more clearly how best to respond. Since it is often continued attempts to 'fix', escape or avoid difficult experiences that keeps negative circles turning, the key skill revolves around non judgemental acceptance. Sessions focus mainly on teaching skills that develop awareness of body sensations and pain, feelings and thoughts which surround them. To recognize automatic pilot and stepping out of it. I could not believe that this could make a difference to my pain but it did!

It of course is not a miracle cure to a health condition and the psychological effect that tends to follow it, but it teaches you to 'notice' how you are feeling in the moment ie breathing patterns and where the pain or discomfort is in your body and how that relates to triggering of negative and depressive thought patterns which can spiral 'out of control' quickly and to slow down and stop the exhausting stream of thoughts and images 'stories and associations' which continually run through our heads' and just let them pass through and leave. Thoughts are not facts! Utube has a quite a few free Mindfulness Meditation CD's and it is worth watching some of Jon Kabat Zinn's talks to

many huge companies and medical institutions around the world, it will explain it better than I can.

Sorry this is a bit long winded but I really think it would help you longterm. All the best

uglyduckling profile image
uglyduckling

Thanks everyone being there for me.

I think I have just had a bad couple of days as I am on my first period in the last four months.

lucythom profile image
lucythom

As others have said please don't give up. Change your gp (I've done this) and keep talking until they listen, both about your endo and your mental health. Seeing the right mental health expert is crucial because as you have sadly found out, if you don't trust them they really can't help. I understand what it feels like to want to give up but with the right help you can start to get better. I lost my brother to suicide, it's had a long lasting devastating effect on my whole family. I wish I could have helped him. Can you talk to family or friends and get them to help you fight for the right care? Xxx

uglyduckling profile image
uglyduckling

Hi,

I dont think my friends and family understand how I feel I do not know how to talk to themabout how I feel.

lillyflower profile image
lillyflower

Hi, have you thought about writting how you feel either a letter or email, I find I can say a lot more to my mum this way than if I talk to her as I tend to put a brave face on when I speak on phone. If you find it easier to talk to someone not related then asking to talk to a different doctor or even Samaritans as someone else sugested may help, they may not be doctors but are great for supporting anyone who is having bad days. The pain and hormones from period is probably not helping . if you can try and confide in someone even if its only telling them bits of how you feel then I'm sure gradually it will get easier to talk about, and you will feel more supported but until then we are all listening and want to support you through these bad days x

Lillil profile image
Lillil

Hi so sorry you are feeling like this. Am not feeling too great today, but wanted to add a few quick links that may be of use to you in regards to helping explain to friends and family;

endometriosis.org/support/p...

And the following is a video I found help me explain it to friends and family;

vimeo.com/m/20910143

Hope you are feeling brighterxxx

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