Really scary thoughts

I know I'm on hormones but recently I feel like life seems to be pointless and that there is no hope. I have never felt like this before and I'm really hoping it's a side effect of the hormones. I just feel urgh and reading covid is on the rise just depressed me further. Not sure whether it's the circumstances of my grandad not being very well and being torn between a new job and going to see him or just on the internet too much.

[R_elep]

Hi. Really sorry to hear you’re feeling this. It can be so difficult knowing when something is actually up or if it’s just the hormones wreaking havoc! Just wanted to reach out as I had the exact same last month when I had my surgery and the mirena coil fitted. For 4 days I sunk into what I can only describe as depression and then after the four days were over it went. It was the most bizarre feeling and came on out of the blue but at the time it literally felt like a storm cloud over my head, I was crying at the slightest thing and could barely get out of bed :s

Maybe it might help keeping a diary and that way you can see if it’s a repeated occurrence if it’s a particular time of the month. I’ve started to that with both my physical and emotional symptoms to help. I know it’s difficult but try focussing on anything that makes you happy - reading a book, listening to music etc and talking to friends / family around you.

Are you on the mirena / pill? My friend’s partner tried three different options and eventually found one that worked for her so it might be worth talking to your GP / gynae doctor?

All the best xx

[Hidden in reply to R_elep]

I was planning on going back to tennis and dance but now I feel that I might as well spend the rest of my life inside the world seems terrifying and I don't feel like I can cope with it anymore. I'm on Zodalex and it did say it was a common side effect I'm scared if I talk to a Dr they will admit me to hospital and I'm terrified of that prospect at the moment there seems to be a lot of random bugs going round. I wonder if it's worse because this is technically when I would be on my period. I don't have much confidence if I would survive covid even though I have lost a lot of weight. I was offered a temp position next week in the hospital but honestly I'm too scared to take it now and I'm worried that I'm not going to be able to do anything with my life apart from stay indoors. I can't even talk to my mum about it as I'm not allowed to mention covid.

[NoEndoInSight in reply to Hidden]

Hello Cloverwolf, you said you were on Zoladex? Are you also on “add-back” HRT at the same time?

Endo treatments like Zoladex can have quite an impact on mood and though processes for some people and many people find HRT can help with that. But there are other ways your GP and prescribing Specialist can tweak your treatment or supplement it with other medications too and they can provide emotional support as well.

Please give your GP and Specialist a call asap and tell them how you are feeling.

Doctors are all keen to keep people out of hospital at the moment and not admit them where possible but provide care and support at home instead.

You said you can’t talk to your Mum about Covid, but can you tell her how you are feeling generally so she can help you talk to your GP / Specialist?

[Ollie2512]

I am really sorry you are feeling this way. I think it is normal to feel despondent and despairing at times with endo, especially as it’s so disabling and we have such a hard time trying to access proper treatment ie excision surgery with an expert.

You are not alone.

Depending on the hormones and dose you’re on, that could be contributing to your intrusive thoughts and low feelings. It is absolutely worthwhile to share these symptoms with your doctor and trial being off hormones for a time.

There is also a condition called PMDD - it has all the feelings you describe and basically can cause intense suicidal ideation, but is cyclical with your hormonal/period cycle. So you wold notice that you feel yhese feelings regularly but they seem to be worse than get better then worse again etc.

Then there are the realities of the world - climate change, Covid (increasing pandemics are one of the results of climate change), shitty governments and corporations, financial and housing insecurity - life is pretty tough and scary.

Basically it is completely understandable you feel this way but also serious and worth paying attention to it, telling your doctor about it to see if meds and therapeutic support might help, (and removing hormones). It is an absolutely awful feeling but if you feel anything scary and start considering a plan or options for suicide, please call emergency or a friend or anyone who loves you and can sit with you and talk to you.

[Hidden in reply to Ollie2512]

I'm well aware about climate change but that is more depressing to have increasing pandemics so there is basically no point in anything as I can't fix climate change and neither can anyone make much impact unless the big companies or industries care which they won't.

[Ollie2512]

One way i think about climate change is that as one person it can feel like you can’t do much - but you have enormous power with your vote. I’m in Australia and we just voted out a complete psycho who has been in love with coal. Change is absolutely possible.

I also struggle with anxiety and depression. One thing I have found that really helps my anxiety is action of some kind. Feeling helpless fuels my anxiety. But action really helps. You have to figure out what action you can take, and what action you will take. Big and small, and with everything - I’m not going to suggest specific ideas because it’s much more meaningful abd more likely to help you if you come up with ideas for you to action. I’m not just talking about climate change - action can include things like cleaning, going for a socially distant walk, volunteering (online or in a covid safe environment) - the list is endless but again it has to come from you in order to be meaningful, in order for you to engage and take those steps.

You seem a bit angry by my first response. I hope you’re doing ok.

[Hidden]

Not angry but honestly it seems silly to worry about bugs when I look after my nephew's who get all the childhood illnesses I'm more annoyed at my brain and considering covid is never going away I'm going to have to try and adapt somehow. Weirdly I felt ok last week this week I just seem to have a really low mood went to the village fete and to a pub outside. All the rest of the family is so positive even my mum who is clinically vulnerable doesn't worry as much even though she's had cancer four times.

[Nikkky in reply to Hidden]

Hi Cloverwolf, a lack of oestrogen has a dreadful effect on the brain as we need oestrogen to make brain chemicals such as serotonin. It causes lots of psychological symptoms such as low mood, dark thoughts, fear, overthinking, lack of confidence, low self esteem and a general inability to cope with every day things. I had all of these after a hysterectomy and felt completely joyless and like I was losing my mind. Are you on HRT as well to add back some of the oestrogen into your system? It’s an essential hormone for us to feel well and gives us a zest for life and sense of well being. x

[NoEndoInSight]

Hello again Cloverwolf, Nikky above is right - Zoladex suppresses Endometriosis by reducing your oestrogen levels, but your body (and brain) use oestrogen for lots of other processes including metabolising “happy hormones” like serotonin and dopamine and melatonin that helps maintain good quality sleep.

It does sound like you need to get in touch with your GP and Prescribing Specialist asap on Monday as it is their job to make sure you get the best result from your treatment and that includes monitoring and helping you manage any potential side effects.

In the meantime you can call the Endo UK helpline as they are so lovely if you are having a tough time:

0808 808 2227

[Hidden]

Thank you no I'm not on any add back treatment they already know I'm having problems and have referred me to a talking service.

[NoEndoInSight in reply to Hidden]

That’s good that they are already aware, but I’d give them a bit of a prod Monday and try to get some solid support set up asap. Sometimes sadly you do have to chase a little.

Hope you are feeling better soon - sometimes it can be a huge help and relief just to know that these kind of side effects can occur and you’re not alone in feeling how you do. ❤️

[Nikkky in reply to Hidden]

Hi. You really do need some oestrogen as that’ll make you feel much better in yourself. You could ask your g.p to prescribe a low dose 25mcg oestrogen patch and see how you respond to that. It is body identical rather than synthetic so you’d just be replacing a bit of the hormone you’re lacking in. Otherwise, you might need to contact your consultant’s secretary for some advice. Please don’t put up with feeling like you do as it is treatable x

[Hidden]

Thank you it is a relief to know it can occur as a side effect. I expected the hot flushes but the last lot didn't affect my mood this much.

[Keukenhof]

Any artificial hormones have the same effect on me. In fact, natural hormones do too sometimes. Please talk to your doctor; they can look at alternative treatment options for you. Please don’t suffer because of this, just get help. Sending love x

[Purple_Badgers]

Hey, Cloverwolf xxx You feeling any better today? It’s easy to slip into a very dark place when you’re dealing with endo on the daily and the world seems to be going to 💩 I deliberately stopped reading/watching the news & it improved my outlook somewhat. It gave me some headspace back and I gradually felt more peaceful. I also realised I was shutting myself indoors too much and resolved to get outside at least once a day for whatever length of time. Not only is it great for mental wellbeing, but our bodies need the sunlight to produce Vit D and keep your serotonin up, so good for balancing mood, helping you sleep, reducing blood pressure etc etcI bet some of what you’re feeling is stress and upset due to your grandad’s illness and the new job - these things are hard enough to cope with at the best of times, but when we have health issues it just piles on the pressure further. Remember that you are good enough & you’re doing your best under very trying circumstances. There is still so much good stuff in the world and you are part of it!

With endo we have been dealt some 💩 cards, but we can only play with what’s in front of us. Look after yourself xxxxxx

[Lynne_support Partner Endometriosis UK]

Hi Cloverwolf.

I'm really sorry to see that you are feeling very hopeless and down at the moment. It's good to see so many members of our community supporting you.

You may find it helpful to speak to someone about how you are feeling at the moment. Endometriosis UK has a Helpline where you can speak to a volunteer who has personal experience of endometriosis and will understand how you are feeling. We also have a webchat if you feel more comfortable messaging rather than speaking to someone. You can find out about these services and check out the opening times on our website endometriosis-uk.org/helpline and endometriosis-uk.org/web-chat.

If you are feeling really down and need someone to speak to immediately then please consider phoning the Samaritans, they provide emotional support 24hrs/day. The number is 116 123.

I hope that the support you have had from other community members has helped.

Best wishes

Lynne - Endometriosis UK