Tiredness/ memory problems : Hi, I have... - Endometriosis UK

Endometriosis UK

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Tiredness/ memory problems

Mel06 profile image
Mel06
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Hi, I have just joined the forum today, nice to meet you all šŸ˜Š

With my endo I struggle a lot with tiredness and chronic fatigue but also am really struggling with memory loss. My dr says it's nothing to worry about and I've not seen it as a symptom but was wondering if anyone else with endo has had memory problems?

Thank you, M

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Mel06 profile image
Mel06
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40 Replies
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Yup, I had them when I was ovulating the most then the minute I went on progesterone I couldn't even focus on class.

Mel06 profile image
Mel06 in reply to

Oh thank you for replying. Sorry to hear you suffer but at the same time I'm so glad it's not just me. I've been torturing myself over it and it's been really affecting me :( not a lot of people can understand it

in reply to Mel06

Mine tends to get worse with pain so before it happens I get really pale (and I have alabaster skin with a pink undertone so I look like a ghost) and most of the time people see that my skin has changed and that's why I screw up what I'm saying or doing.

But other times I'm confused.

Mel06 profile image
Mel06 in reply to

Oh i'm so pale also!!! Always having iron problems too!

in reply to Mel06

I'm waiting for blood work because I think I'm anemic and then I get told I'm not.

Mel06 profile image
Mel06 in reply to

Urgh it's non stop hey!

in reply to Mel06

Last time I was told my hemoglobin was so high it was a high amount for a male not to mention female and they did no further testing, which I found out is odd since I had really heavy periods, I dyed a bath tub pink after being in it for 10 min in July.

I wonder if I'm checking the wrong thing.

Mel06 profile image
Mel06 in reply to

Oh you poor thing. Keep pushing the doctors to investigate!

Starry profile image
Starry

Totally. I am really struggling with brain fog and fatigue on a daily basis.

Mel06 profile image
Mel06 in reply to Starry

Ah I'm so glad to hear it's just not me (& sorry for you at the same time) I thought I was going mad with it and it really gets me down. Sometimes I can barely think. Thank you for replying

Mel06 profile image
Mel06 in reply to Starry

I'm so relieved to hear i'm not alone on this.

Nicolebish-op profile image
Nicolebish-op

I'm not alone! I thought I had something wrong with me! I have the worst memory,I forget words all time..I'm in mid sentence and I either forget what I'm talking about or can't think of a word I was going to say and the past just feels so foggy if that makes any sense. I only really remember the bad events in my life

Mel06 profile image
Mel06 in reply to Nicolebish-op

It really is a relief to hear others are experiencing this. People ask me questions and my brain just freezes. It feels so hard just to even think sometimes. Unfortunately bad events seem to stick hey

in reply to Nicolebish-op

Strange enough I think it has to do with various parts of the brain, like you might get brain fog from one and not from another, if that makes sense.

But brain fog sucks, like sometimes I'll be fine or debating then the next thing I know my brain just goes "off"

Mel06 profile image
Mel06 in reply to

Yeah I know what you mean. Sometimes I feel like my brain is frozen and I can't even begin to think!

Amaria28 profile image
Amaria28 in reply to Nicolebish-op

So glad to hear that other people experience this! I always feel so ridiculous forgetting what I'm saying mid sentence. It's very frustrating! I think it's fatigue related for me, which most people with endo suffer from. I get what you mean, I sometimes think about even something I did the other day and it doesn't seem like it happened? Or like it happened to me!

Mel06 profile image
Mel06 in reply to Amaria28

I'm so glad I posted on here...so many people have the same issues, it's so comforting. The forgetfulness really gets me down

amy-28 profile image
amy-28

Yes I am struggling with fatigue and brain fog daily now since my last op 5 weeks ago :(

Mel06 profile image
Mel06 in reply to amy-28

It's horrible isn't it. Thank you for replying. I felt so singled out before I found this forum. I get very down about my memory which I think makes it worse. I hope you are feeling better after your op

amy-28 profile image
amy-28 in reply to Mel06

I know it hard :( I feel like in work something goes in one ear and out the other and all I can think about is getting home to bed! The forum is really helpful I'm also on instagram and speak to lots of lovely girls on there of your on it dm I will give you my details I think talking to people with it really helps it can be rather lonely having a chronic illness that people don't really understand xxxx

Mel06 profile image
Mel06 in reply to amy-28

I'm the same at work, writing down literally everything.

I really wanted to try the gym after work today but I couldn't face it. I will message for your details, thank you

Cgrabbe profile image
Cgrabbe

I suffered with endometriosis for 20 years. I had over 8 endoscopic procedures to remove the endometrium. I had my left ovary and fallopian tube removed by the still suffered with pain, heavy bleeding etc. I could never have children. My doctor finally agreed to remove my cervix, right ovary and fallopian tube. After removing my female organs I hade pelvic organ prolapse and had to have a suburethral mesh bladder sling put in. I had that done in 2012. Now my transvaginal mesh implant malfunctioned my prolapse is back and we find out that the mesh implant was recalled by the FDA now I have a toxic implant in my body that has resulted in more health issues. I was just diagnosed with an auto immune disease called Gastroperiosis and my Vegas nerve is damaged causing neurological issues as well. Be careful my friends. Hysterectomy's and mesh implants for pelvic organ prolapse because all your female organs have been removed can cause more serious life long issues. No the facts before you make any decisions.

Mel06 profile image
Mel06 in reply to Cgrabbe

Oh my, I'm sorry to hear all that you have been through. I hope that you feel better.

Thank you for the interesting information x

Jcwy profile image
Jcwy

Oh yes 100%. See this is the problem with drs..there are so many symptoms or side effects from endo they don't put one thing with the other. They dismiss it. I've been dealing with this for 18 years and I can definitely say forgetting things that just happened or was just said is an issue. I'll go into a room for something and I do not remember why. It's scary.

Amaria28 profile image
Amaria28 in reply to Jcwy

I know! I feel like the doctors understand that you're tired but not really just how fatigued you are and how it affects daily life.

Mel06 profile image
Mel06 in reply to Jcwy

I was diagnosed with chronic fatigue years ago and when I asked if it was related to endo she said no. When asked what to do about it she told me to 'google it'!!! I was also told recently that memory problems weren't related also. Maybe they should listen to people's symptoms and take note instead of making you feel a bit stupid.

I'm trying meditation and mindfulness now as when I forget things I get so frustrated with myself

Jcwy profile image
Jcwy

Oh and fatigue forget it ..no matter how many naps I take or sleep during the night,I'm exhausted. And my body is always... everyday achey and sore.

Mel06 profile image
Mel06 in reply to Jcwy

Oh I know. Last Saturday I woke at 9:30 then was awake for an hour then woke again at 3:30!!!

I think exercise would help a lot but I'm mostly too fatigued to go!!!

Jcwy profile image
Jcwy

I've always exercised,I'd never miss a day. The past 6 months or so it has dwindled down from 6 days a week to maybe 3 days a week of exercise. My body is so sore and achey. I feel so drained. I also take long walks like 5-6 mile walks just to do something. It is getting to the point where as I'm walking I feel like I can't continue.

Mel06 profile image
Mel06 in reply to Jcwy

Oh it's awful. Especially when you actually want to do it. I keep saying I'll go tomorrow

Lindaminda profile image
Lindaminda in reply to Jcwy

I understand completely. I often feel like I can't continue and have need to lay down immediately. But I can't as I'm on the commute home from work. It's terrible because I then go a purchase a cookie or something sweet just for the energy to walk across Waterloo Station and onto my bus home.

Cgrabbe profile image
Cgrabbe

I Fatigue, brain fog, etc., are linked. With endometriosis you have heavy periods, extreme pain, even if controlled somewhat with birth control. You body loses iron, and the pain you endure physically and mentally drains you leaving you wiped out.

I don't let doctors dismiss me. You're there employer you pay them they work for you. Remember that ladies. My therapist reminds me of that.

If you don't have a good doctor fire him and get referred to a different one.

It's your body, it's telling you it's not ok by the symptoms your experiencing. Listen to your body, it's not in your head like doctors want you to think....it's real and it's happening.

Take care of you because no one else will!!

Much love to you my friends,

I know your pain and suffering well!

Mel06 profile image
Mel06 in reply to Cgrabbe

Well said x

Lindaminda profile image
Lindaminda

Hi I am new to the site as well.

I have memory problems as well and I also work much more slowly. My job involves writing assessments and reports and they take me much longer than it used to.

I thought the memory loss and brain fog was due to being extremely stressed for a long period of time. Now I believe Endometriosis may play a large part. I also experience ongoing fatigue I am having trouble overcoming. I was diagnosed with stage 4 endometriosis in 2010 when I had an open myomectomy (surgical removal of fibroid tumor). That was a shocker as I never experienced any symptoms or had much pain. My surgeon cleared of the endometriosis which had fused my ovaries together and attached them to the back of my uterus.

A year ago February the fatigue got so bad I spent nearly every weekend sleeping, super irritable because I was so tired and couldn't exercise because it would become so exhausted I had to go to bed for the next day and a half. I walked around in fog using all of my energy getting to and from work. I gained over 80 kilos in a few months. I suspected my endometriosis was back and this month it was confirmed. My GP said the fatigue was not a symptom of endometriosis but I didn't believe her. The consultant said that I have to get used to the fatigue. No very helpful.

I was 43 when I was diagnosed with endometriosis I am now turning 50 next month. In many ways I feel very lucky as I don't suffer from much pain and when I do the pain is not debilitating or even severe. I have not planned on having children so the infertility issues are not relevant to me.

I believe there should be more screening for endometriosis and more research into the causes and treatment. Endometriosis silently robs women of their mental and physical well being, their children and quality of life. And the medical community isn't giving us the answers we need.

Mel06 profile image
Mel06 in reply to Lindaminda

Oh you poor thing. I sympathise completely. I tried to write a letter yesterday but just stared at it. Been trying for two weeks!!! I was told the memory thing was stress which I believed at first but then thought I would ask on here as I was not convinced wholly. A doctor told me I had chronic fatigue but it wasn't related to the endo. When asked what I do about it she said 'google it'!!! I now feel so much better knowing it IS all related as real women can relate to the symptoms. I agree more should be done to recognise this and it should be taken more seriously. I had to hammer it home to my director as I think people just think it's period pains!!!

I hope you don't suffer too much with your fatigue for your birthday x

Lindaminda profile image
Lindaminda in reply to Mel06

Thanks Mel06

I do think some of it is stress, I changed jobs twice, planned a wedding and got married last year. Plus I have a 3 hour commute to and from work each day. However, I think the stress exacerbates the fatigue. The fatigue got really bad when I had surgery in 2010 and never really went away.

I'm sorry you are suffering as well. What happens when you get diagnosed with Chronic Fatigue? Isn't there a support group or a management program your GP can link you into?

Mel06 profile image
Mel06 in reply to Lindaminda

Wow that does sound stressful! I don't think I'd be still standing if I did all that!

The doctor was really unhelpful and I think just diagnosed cfs as she didn't know what else to say!!!

Coming on this forum has really helped me and realising it wasn't all in my head and others experience it all too is great.

I hope you are feeling better :)

Lindaminda profile image
Lindaminda in reply to Mel06

I thought I developed dementia. Now I believe it's endo.Someone on this site mentioned endo may be an autoimmune disorder.

I'm sorry your doctor didn't give you more direction as how to manage the fatigue.

kerri- profile image
kerri-

hi 2 or 3 days before im due on i get fatigue and feel like ive been hit by a bus . when i have my monthly i sleep for a solid week and i carnt get out of bed because of the fatigue I am on morphine when the pain hits so this does not help with my tiredness.

I also suffer with memory loss too i struggle to recall peoples names and what i was just thinking about, the other day i had this feeling of anxiety and i was very worried but i had forgotten what i was anxious about and could not remember šŸ˜€

your not on your own xx

Mel06 profile image
Mel06 in reply to kerri-

Oh that sounds horrendous šŸ˜• You poor thing thank you for the reply tho it's lovely to know I'm not the only one.

Ha ha thank you that just made me laugh! x

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