Question about mental health and endo

[Beth_E]

Hi everyone, this is my first time on one of these groups but I really need to chat with some other people who know what it's like. Does anyone else find that having the condition affects their mood and their mental health? Like I can be having a perfectly normal day and then out of nowhere I feel terrible and can't bring myself out of it. I've seen some people talking about connections between mental health and endo and I was wondering of anyone has any stories or advice about how to handle the mood shifts?

[Lucypop]

Hi, I am having a bad week with endometriosis and feel so down and a misery, so I was thinking the same thing that maybe it is effecting my moods x

[Beth_E in reply to Lucypop]

Hi, thanks for replying! I've really noticed a link between the two. Whenever my endo starts to flare up my mood plummets and there's not really anything that I can do to pull myself out of it. Do you ever find yourself getting really irritable for no reason? Xx

[Nikki84]

It's the pain, when you are in a lot of pain it affects your mood and the hormones don't help either x

[Beth_E in reply to Nikki84]

The hormones are the worst! I'm wondering whether some kind of medication might help combat the side effects? Xx

[Runner92]

I suffer with depression and anxiety because of it, what if I feel ill, having to cancel things because of it. Iv wanted to end it a couple of times but I just have to remember what I have got in my life and I'm ok again x

[Beth_E in reply to Runner92]

I'm so sorry that you have to go through that but I'm really grateful that you shared it because now I know I'm not the only one! I always feel so guilty when I cancel plans, it just adds to the whole mess! Xx

[Hidden]

Yes, I used to think I had bipolar or something, but now realise it's all hormone/Endo related !

I take supplements now, which seem to help slightly x

[Beth_E in reply to Hidden]

I'm glad that you've managed to find something that helps a little. It's so frustrating that mostly the docs just say "you'll have to live with it" xx

[Sam341 in reply to Hidden]

What do you take? Xx

[Hidden in reply to Sam341]

5HTP x

[ccsmith]

I'm the same ☹️ I've been on antidepressants since it's been so bad as I got so angry at my little girl I hit her. I go really low then angry then tearful. It's a horrid rollercoaster. My gp says it's my own hormones, endo & the mirena coil. It's pushed me lower than I've ever known & have considered the end myself but my gorgeous miracle girl keeps me going. We're all there for you xx

[Beth_E in reply to ccsmith]

I'm really glad that you've got such a good reason to keep going and to keep fighting. Thanks for sharing your story with me, it helps to know that I'm not the only one xx

[Hidden in reply to ccsmith]

I'm glad you have your daughter who keeps you going ! Hang in there . Suicide is never the answer, because it just passes the pain and misery on to those you leave behind ☹️Xx

[Heloo85]

After my first injection with zoledax i slipped into a huge depression. Like couldnt talk or anything. That was due to the hormonal surge. Once my hormones leveled again i was fine but not 100%. So yes, hormones have a huge impact on mental health. Thats why we get PMT. Couple that with chronic pain and fatigue, im surprised any of us are sane. But yes. Chronic illness is a major cause of depression.

[Beth_E in reply to Heloo85]

How long did it take for your hormones to level themselves back out? I don't feel like mine ever will! Xx

[Heloo85 in reply to Beth_E]

Unfortunately they havent. Although ive tried alsorts of treatments. Combi, progesterone, zoladex, major surgery, doing nothing and i still have active endo. Ive tried healthy eating, pushing myself through pain and drinking plenty of water. xx

[Beth_E in reply to Heloo85]

That sucks, I'm so sorry that it's still affecting you so badly. There seriously needs to be more research put into effective treatments because the ones we have a pretty shoddy or quick fixes xx

[Sam341]

Yes, I don't think I have a mental health illness though. I think it's hormones, pain, suffering and I have just been treated very badly by the NHS. Which results in me questioning if life is worth the fight. It makes me feel angry all the time. It make me cry. And sometime I feel ok.

Better treatment for this condition would reduce the amount of people feeling so mentally challenged. That's my thoughts anyway.

[Beth_E in reply to Sam341]

There definitely needs to be much better treatment for this condition. Nobody knows about it, and for a long time my doctors were simply testing me for STIs which was absolutely ridiculous.

How does youranger manifest itself?

[beth18087]

Hi Beth I feel exactly the same! I haven't been officially diagnosed because I am still unsure about diagnostic laparoscopy but it's pretty clear I have endo it's textbook symptoms!

Even when I'm not in that much pain but my pelvis feels a bit heavy and unsettled, I get such terrible moods! Today I have felt so fragile and I become tearful for no reason. I've just started the progesterone-only pill 4 weeks ago so maybe this has contributed to my mood swings (after being on the combined for 5 years). Hope you are feeling better today, you're not alone!

[Beth_E in reply to beth18087]

It's so frustrating how much it affects my mind and my mood. As if the pain weren't bad enough it messes with my head too. And the treatments they offer are all hormone related so it just makes it a lot worse. I hope that they managed to balance you out with your new treatment. What's holding you back with getting the diagnosis? Is it the thought of surgery? Xx

[beth18087 in reply to Beth_E]

That sucks I'm exactly the same, the new progestone-only pill is crazy with my body, one minute I'm in such a great mood or I'm just normal, then the next I'm really tearful and one small thing will upset me or make me angry. You start to doubt if it's your hormones or if you're just a really negative person but I don't think I am!

Yeah it is the thought of surgery and recovery, and also if they did the surgery would they be able to help anything or treat it, and what if it's not endo? What if it's all in my head! The consultant suggested we go with conservative treatment first then reassess in October. I'm still not sure how I feel about it - what was your diagnostic lap experience like if you don't mind? xx

[Hidden in reply to beth18087]

I'm exactly the same, started progesterone only over a month ago and next week I'm going back to ask to either change the pill or for some anti depressants because I can't stand feeling so low and miserable for no reason at all!

[beth18087 in reply to Hidden]

Oh bless you! Definitely go back and see your GP, hopefully they will have some helpful advice for you and be able to alter your prescriptions. It is so miserable feeling low all the time. Just know that it's not you and this is only temporary! x

[Beth_E in reply to Hidden]

It sucks that the "treatment" that's on offer makes other things worse. And because there are so many different types of pills or contraceptive options you have to go through before you hit on one that doesn't give you massive, unbearable side effects xx

[Beth_E in reply to beth18087]

I totally feel like I'm losing my mind. I feel weirdly disassociated from my moods, especially the anger - it's my emotion but there's nothing that causes it so I feel like I'm an awful person.

Of course I don't mind! My lap was really helpful, it confirmed my diagnosis and they were able to lazer away what had grown so far while I was knocked out (I gave my permission before of course!) The recovery was pretty painful, I but it was over quickly in the grand scheme of things - I was out of action for about two weeks which seems about standard from what I've seen on here. You bleed for a while, but it's nothing we aren't used to already! If it's not endo - which it sounds like it totally is! - then it's on to the next thing until you finally know what's going on and can get the right help. Either way, it'll answer the big question hanging over you at the moment xx

[beth18087 in reply to Beth_E]

That sounds awful I'm so sorry you're going through this! Please don't feel like an awful person, it isn't your fault at all. Do you think this mood change has a direct link to a medication change or something? Try to weigh up the benefits the medication you're on has on pelvic problems, but the disadvantages it has with your mood. You could try talking about this with your GP whilst you wait for a consultant appointment. I find it helpful to keep a symptom diary. Like I'll write down which days I feel tearful, have a headache, have bad cramps, have bleeding. This is really useful when I next go and see the doctor so maybe you could try that, and it's also helpful in linking it with your menstrual cycle etc.

Thank you so much that is really helpful I would love to know if it's confirmed or not and you're right - even if it's not endo surely it must be something!

[Beth_E in reply to beth18087]

Thank you for your kind words, it really means a lot that everyone on here is so nice and supportive! I think I might take up your advice on keeping a symptom diary, because every time I've been to the docs about it I get flustered and confused and forget everything I meant to mention! I know I definitely want to come off the depo, but I don't want to go back on the pill either, so I need to have a research into my options I think.

It's bound to be something, symptoms as bad as they are definitely have a cause. I understand why you have your reservations about the surgery, it scared me to, but I'm so glad I went through with it and have my diagnosis. Xx

[beth18087 in reply to Beth_E]

It's no worries - I am new to this forum too and it is so lovely that everyone has the same thoughts as me and you don't feel so alone! But at the same time you think - wow all of these women are suffering with such a common condition and yet they all think they are "overreacting!" There should be more awareness!

Definitely - I'm a med student so I sit in a lot of clinics with doctors, and it is really helpful when patients write a list of questions or a diary over the 3 months between appointments because a really bad episode a few days after your 1st appointment, might not be remembered at your 2nd appointment! xx

[Beth_E in reply to beth18087]

I know, it's ridiculous that we all feel scared that docs are going to tell us that we'reover reacting to what our bodies are doing or that we're weak when neither of those things are even remotely true. I'm definitely going to write all the things down before my next appointment, that's a really great tip, thank you so much for it xx

[lizalily]

I'm like a lunatic sometimes just really can't be around people so I just lock myself away from

Everything . I even get aching legs and very fatigued with it . Don't have any children it's never happened so I now know why 😢

[Beth_E in reply to lizalily]

I'm so sorry that it's affected your ability to have children as well as your body and your mind. It really does a good job of getting in the way of the things people take for granted in their everyday life. Always here if you need to talk about it when you lock yourself away from the rest of the world. Internet anonymity is a blessing sometimes. Stay strong, you're not alone xx

[lizalily]

This disease is awful it ruins your life big time when the pain comes , rite now I'm mid cycle and getting ovulation pains bag back cramps acheing legs and so tierd and just generally feeling yuk, it can even make me feel sick sometimes to c

X

[Beth_E in reply to lizalily]

I've seen someone say on here how frustrating it is that it's invisible because then other people don't understand just how painful it really is. It's not an illness you can see so it doesn't register. I've been feeling queasy for days - i think I'm due on but I have no idea really as they're so all over the place. Do you get the feeling like your legs aren't your own? Like they feel weirdly disassociated from your body but somehow really painful at the same time? Xx