Endometriosis and mental health

[Glitterbug123]

Hey,

I’ve recently been diagnosed with endometriosis and while of course we all know the physical pain and suffering that comes with it, I’m really starting to feel like it’s effecting me mentally. Does anyone else feel the same?

Maybe it’s something I’ll get used to and find easier in time... but at the minute I’m angry and full of what ifs, I’m heartbroken that this is so unheard of and talked about, I’m anxious about the future and how it’ll effect my job and livelihood, I was diagnosed in January so this is all still very new, maybe I am just worrying and it’ll get easier.

Sometimes you just need to vent I suppose, does anyone else have the same sort of worries or did when they were first diagnosed? If so how did you overcome it? Do you have bad days, is it normal to worry and get upset some times? How do you cope and manage it all?

Any tips/advice would be greatly appreciated x

[Bubble_by]

I was the same when I got diagnosed too. I had a horrible depressive episode that really scared me. I didn't get out of bed most days and I cried all the time.

Since then I've been diagnosed with biological depression and started on anti-depressants. I'm also having therapy once a week which is helping.

There is definitely help out there and you must speak up to feel better. Talk to your gp and they might be able to refer you to services in your area and see what could help.

I hope you feel better soon 💕

[Glitterbug123 in reply to Bubble_by]

Thank you for sharing! I guess the more we talk about it the easier it gets, makes me feel like I’m less crazy!

I hope you’re doing well with your journey 💗

[MrsIT]

Hello. same. diagnosed on monday but dont yet know how much of it is in my body / locaitons. they saw endo on my last transvaginal scan. i have anxiety/depression for years, so im already on medication for that plus pills to stop bleeding etc. its deffo a roller coaster still! day by day. i have such highs and lows and i try to work out to help that part. even if a walk is all you can do, get some fresh air and know that theres many of us.

but i feel same. and after diagnose its abit worse, as i dont know what to expect fully , maybe ill have years of being in stage 1-2 (dont know stage yet) or maybe not..

im glad to finally have an answer BUT at same time, i know know have to deal with this for life, and i was always hoping it would kind of pass...

[Glitterbug123 in reply to MrsIT]

I completely understand, i try to generally be quite positive and not let it define me but some days you just can’t help but feel down and anxious about it! I felt relieved to finally have an answer but at the same time it’s hard knowing that this is my life now and it’s not something that will go in time or have a “quick fix”I try to talk about it I feel like that always makes me feel better, getting things off my chest and I also go on walks or even drives when I can, just being able to clear my head and listen to music when I can always relaxes me.

I hope it all goes well for you! Hopefully in time it’ll start to become easier to at least deal with and manage and it won’t feel like it controls us

[Hidden]

Hi Glitterbug,You're right that there's a wild set of emotions that come with this.

I'm normally a cheerful, optimistic person, but for this time following a diagnostic laparoscopy, I've not felt that way. After this one, I mentioned to the nurse that I was quickly fatigued after my first lap (suspected appendicitis), and the surgeon gave me a sick note for 4 weeks. Wow. I felt greatful, yet guilty for receiving such a welcome gift of time to recover from the physical and emotional aspects.

The first while, I read everything I could about endometriosis - like a woman obsessed. That lasted about two weeks. During that time, the incoming information helped to steady me somewhat. It was a good distraction from the discomfort and upset. I also learned about endo management, so I'll be ready to ask j formed questions when it's time.

Before this lap, I'd been working a lot of overtime for work. I was very tired, perhaps burnt out. During the recovery time, I've refused to do anything goal-driven. Oh my goodness, there have been too many goals for work, education, and self improvement. For this recovery time - no goals! That may be the burnout speaking, but right now, I just can't. I've indulged in the guilty pleasure if sitting still to heal, and playing computer games. I know that sounds like a waste of time, but I'm just plain worn out. I've put my world on hold for these 4 weeks, and will start again when it's time.

I guess what I'm saying is that I think it's ok to hold space to heal when you need it.

Endometriosis can be managed, so I'm certain it's not really going to interfere with my career. I've checked with HR after sharing the endometriosis employer's guide by email, and they're happy to allow flexible working time so I can go to doctors appointments, and reasonable adjustments like an ergonomic chair work fine.

Also - there's a helpline no. On the endometriosis UK website. They sound like nice people to call if you feel really down. They are volunteers with experience of endo.

I hope that helps to shine a little cheer. 😉

[Papillon49]

Hi Glitterbug, I'm new here too and haven't yet been diagnosed with endo, but have suffered from painful periods for years, had a near diagnosis of PCOS and finally have a referral appointment to gynaecology next week to investigate potential endometriosis. I had to take time off work last week due to excruciating pelvic pain during my period and since then, it has been the mental anguish of wondering what may or may not be the underlying cause which has been tricky (combined with my mum also having cancer and a rollercoaster week on that front too). I think like others have said, there will be good and bad days and I hope that if this is endo, there'll be some ways to manage the bumps along the way. I just wanted to reach out to share and let you know you aren't alone and those days are normal- but here's hoping for brighter ones too. Take care

[kelsbels88]

Hi sorry this is long but as you are new to this I hope this might help...

my biggest thing if you are unsure or not yet diagnosed would be to do a pain diary. This really helped me before I went to my appointments. I logged every day my pain level on a scale of 1-10 and what times I got them. I called them episodes. If I could I would log how long the pain lasted too.

I had foods that triggered me for example caffeine was a big no no, so switched to decaf and I couldn’t have milk I could only tolerate skimmed.

I would log symptoms and anything I didn’t understand. I also had a period app tracker to see how regular/irregular my cycles were.

I wrote down intercourse was it painful?did I get bleeding?. I used to find it was fine in the moment but the next day I would get pain. I used to have awful stomach issues because I had it on my bowel, movements were painful.

I used to get 9/10days out of a month where I had no pain what so ever I could live my life like a “normal” human. For me the diary helped me get my life back and provide evidence to drs who didn’t believe me.

This disease is not easy. I had a long journey just to diagnosis and my first thought after coming round was “yes I’m not crazy- there is something wrong with me” it was slightly different for me as I did all my research beforehand. I told the dr what I thought it was and got them to do the lap to prove me right. I was right 😉

My thing is you know your body you know what it does and doesn’t do or should and shouldn’t do. Don’t let a dr tell you how you are feeling when they don’t live with your pain. What’s that saying “don’t judge my _years of med school” “ok then don’t just my _years of living with it” or something to that affect. Sadly this is worse with some male drs.

I am not 5months post surgery number 2 and have no pain at all. None. There is hope. I’m still not pregnant and I now only have one tube but I’m not in agony having to cancel plans or leave functions early or not attend at all. Please feel free to message me (anyone) if you want an ear to listen.

Be kind to yourselves, knowledge is power ♥️

Kelly x