Need some hope? : So many times I open this... - Endometriosis UK

Endometriosis UK

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Need some hope?

635703 profile image

So many times I open this forum and it’s the cries of despair from us as women. We are navigating a broken and outdated healthcare system and pharmaceuticals and surgery aren’t always the answer. But sometimes they are and oftentimes it’s all we know. Did you know that male scientists named all the parts of our female anatomy?

Sometimes I can’t bear to come here. Some days I feel so strong and try to offer comfort to someone else in the midst of my own Endo struggle.

It’s rainy and dull outside and I am putting on my trainers and going for a long walk with a podcast - in search of hope and in search of answers that mean I don’t have to feel so blurgh every single day.

See you on the other side of my walk. Anyone else so sick and tired of being sick and tired?

23 Replies

Today, yep. I feel completely swamped with uni work, have 2 kids off school self isolating only days before the end of term :( and I'm due my period on Friday... 1 day before my 30th birthday lol which I will likely spend bed ridden and pain riddled so unable to celebrate. Makes me so angry sometimes that we have to suffer so much and there feels like there's nothing that can really be done. Not without more side effects :( I really hate it. So yeah, today I feel exactly the same, sick and tired of being sick and tired.

635703 profile image
635703 in reply to CryBaby91

I know you from your posts and how amazing you are.

This is where we are today BUT we are not camping here.

I did a 50 min walk and am knackered and slightly less pissed off.

Hi a good post!

I feel angry, frustrated, upset at my life and how other people have treated me because I am ill, like I asked for it 🤷‍♀️

Fed up of the surgeries, the blood tests, hospitals appointments and surgeries. No end in sight.

I try to stay positive but some days it’s very hard, I cry, I am in pain & I am fed up of being ill.

Hope you enjoyed your walk.

X

It’s good to hear your honest feelings. They are real and they are valid and totally understandable. I enjoyed my walk even though my bum is bigger and need to do another one later on. We all have to start somewhere and this is where I am.

Reading a book for my book club today because I needed to make friends….this disease has sucked my energy….I am so exhausted I don’t know if I would be a good friend.

So I have made some anti inflammatory food, promised to drink my water and started afresh today. Washed my sheets and done laundry 🧺 and just want to be well.

I want my energy back!

I feel your pain, I cry for the girl I’ve lost and how I seem to have no control over my own life or my own bodies……doctors don’t realise how we put our lives in their hands.

Hope that one day it won’t always be like this xx

635703 profile image
635703 in reply to MyStar86

So true. We do our best and I just have to keep on trying because I want my life back. It’s mine and I’m gonna find a way.

I agree. Sometimes I come on here to offer others advice that (I hope) is helpful. Sometimes I don’t come on here for weeks as it’s too much to be involved for a bit. Today I have good news. I haven’t gone a month of my life in over 25 years without ravaging endo pain during my period. In the interim I developed another autoimmune condition called Sjogrens. For me it’s presents mostly as severe joint pain in feet knees hands and wrists. I went to rheumatologist and they prescribed prednisone to rule out joint disease. Well boy howdy did I respond! I felt 104 years old until day 3 of the steroids then I felt like a million bucks. No joint pain whatsoever. No fatigue. Started tackling my home projects like painting and joined a walk/run group (I used to run marathons). The kicker here though is that when I was on my period I HAD NO PAIN AT ALL FOR THE FIRST TIME IN MY LIFE!!!! Didn’t even need so much as a ibuprofen. Usually I’m bedridden with hot water bottles and Hooked up to a tens unit. Amazing. My rheumatologist refers to endo as another autoimmune condition. Not everyone in the medical community does. Will see what happens next with my joint and endo pain. Prednisone is not safe for long term so I stopped that and I’m now on plaquenil. Fingers crossed it helps me at least for my joints. If the endo pain comes back I’ll deal with it. But not being able to walk on a daily basis and feeling 104- I can’t live like that. But there IS hope!!!! Something DID work. And I have an MD on my side. So that’s something at least. And today I’m very greatful for that. Just wanted to share my positive experience. And share some hope. 😀

635703 profile image
635703 in reply to USgalwthendo

That is WONDERFUL news 🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳🥳 I am SO happy for you on the no painful period in 25 years!

The other stuff sucks but we navigate through because we are ace!! Not to lessen the emotional impact that sick news of a new diagnosis can have. So very sorry to hear this and thank you for sharing fantastic news!! 😃😃😃😃😄

Arty09 profile image
Arty09 in reply to USgalwthendo

This is great, so pleased for you! Amazing to have found such relief! When in a bad flare I also get severe unexplained pain in my wrists and generally am stiff and sore all the time, like you describe feeling 104 and not able to be active! I’m wondering if I should see a rheumatologist after reading your comment. It is looking more and more likely that endo is an auto immune condition. Let’s hope the science catches up soon as it could help women greatly and as we see on here there are so many of us suffering. Stay well! 😊 x

635703 profile image
635703 in reply to Arty09

It could be malabsorption of vitamins and minerals due to gut health.

The Endo Life Jessica Duffin is an expert on Endo and gut health. She has free podcast episodes on this. Suggest you look here.

I have sore knees and stiff achy hands and I think it’s my gut health…as these can be a symptom of SIBO or other gut health issues. All of which you can heal yourself.

Arty09 profile image
Arty09 in reply to 635703

Thank you, yes I follow her on Instagram 😊👍🏻

USgalwthendo profile image
USgalwthendo in reply to Arty09

I have read that autoimmune conditions often run in threes. I have asthma endo and arthritis. Sometimes having one makes it more likely you will have another autoimmune condition. My primary doctor referred me to a rheumatologist after he ordered labs to rule out lupus rheumatoid arthritis and Sjogrens among other things.( sjogrens came back positive although 60% with Sjogrens are negative on labs so there’s that)My rheumatologist did labs to rule out low ferritin (which I have) and celiac( I don’t). Rheumatologist also mentioned diet of low or no gluten can help those with endo as we can be sensitive to gluten even if not true celiac. I tried this before my prednisone and it didn’t seem to help but I’m sticking with it for now as it makes me choose healthier foods so that’s good for the bigger picture. It never hurts to advocate for yourself and try different approaches. We are in our bodies and are the specialists here😍

Arty09 profile image
Arty09 in reply to USgalwthendo

Thank you so much for sharing this info! 😊 there is a lot of IBD in my family. I also have asthma and feel better on low gluten and low dairy diet though not I’m not celiac. It is difficult to get gp’s to order extensive testing I find but definitely something for me to monitor. I’m so interested to see how current endo research will develop further. Sorry you have so much to deal with and hope you continue to feel well with the new medication. I agree we are definitely the experts of our own bodies xx

Just bear in mind most people come here when they need help, when they don’t they are getting on with the life they’ve missed so the majority of posts are people needing advice or support and it will seem negatively biased. Personally I still try to read the posts when I’m having a good period as I worry about those desperate people at rock bottom (as I once felt). I hope your walk made you feel a little better. x

635703 profile image
635703 in reply to JulesUK

I do acknowledge that people come here for help and have been at Rock bottom and still visit there regularly.

But there has to be answers other than operations and medicines. My walk was good. Hard good and hard good today too.

I went to a sewing class and cried today but still went because I want my life back. 😃

I understand where you are coming from. I also get so frustrated by the lack of understanding and answers. I’m currently frustrated myself having had what I thought would be a relatively simple hysteroscopy and coil change last week and still in a lot of pain. The pain I will deal with but reflecting on the process, not seeing a doctor beforehand, not given notes afterwards, no follow up, not even a mention of my endo, one of the staff being rude to me etc etc I feel angry. it s brought back all my feeling of anger when I was first messed around. I continue to get angry when I hear of all the stories from women continually getting fobbed off and mistreated. There doesn’t seem to be any progress despite the national survey that was put to the government last year. (Or was it the year before?).

635703 profile image
635703 in reply to JulesUK

I am doing a course with an excellent Women’s health Coach specialising in Endo and Gut health and it’s been so hope filled. I feel empowered to understand ans take action!

Also I got an NHS appointment to see a Medical Psychologist and that’s helping lots too. I have medical trauma and so many of us do.

Today I went scared to a sewing class and cried for the first 20 minutes of the class. It was so much fun. I hand sewed hexagons to make a quilt. 😃 when Endo is bad I have tools and this is another one 🪡💛

My relationship with my Partner is ending and I am so sad. Yet so hopeful!

I’m so sorry to hear about your relationship ending but pleased that you have positives going on in your life at the moment. 😊

635703 profile image
635703 in reply to JulesUK

Thank you x x x x

It was good to read this today. Really fed up of all this. Fed up of not being able to describe it properly. Fed up of the pain. Fed up of not being the best me, mum and wife I want to be. Fed up of the effects of it and having to try to make others understand it (at work more than anything else!)

635703 profile image
635703 in reply to mrsswinnydm

Ugh 😩 I am so sorry this is really really hard for you right now.

If you want suggestions let me know but your feelings are normal and valid. I see you trying so hard 💪🏻💛

I would love to wave a magic wand for you but would really like to just give you a hug 🫂

I am exhausted and tearful after a mixed day. But listening to an uplifting podcast and sewing 🪡 as we are making a community patchwork quilt. Where we all see a bit. This makes me so happy as I am on ESA of £74.20 as too ill to work and waiting for a laparoscopy. I am exhausted and trying to eat well and take supplements and drink water and walk my 10,000 steps.

We all have so much to battle through and cannot live like we did before. I am different. I have Endo. I don’t know what that means.

But I am doing what I can with what I have. I went to the foodbank today and the social supermarket. I could cry happy tears at peoples kindness from my day.

This is my Endo rock bottom.

They will take £20 a week away from My next Universal Credit payment in October. I am trying so hard to make changes. I wake up exhausted 😩 but today I got to bed happy that I tried. I have no children. I won’t have any children.

So I have to accept that now. Endo has changed my life, I cannot do things people without Endo can do X

mrsswinnydm profile image
mrsswinnydm in reply to 635703

You’re doing bloody amazing!!! The struggles of this are so unreal, so many things you wouldn’t think of until you’re actually going through it.

And yes to suggestions, even if they don’t work it’s worth a shot!

Sending love ❤️

635703 profile image
635703 in reply to mrsswinnydm

Receiving that love ❤️ thank you ☺️ and right back at ya!

This EndoLife google it because it’s changing my life to discover so many things I can do to help myself. It might not be good for you.

For example. There’s a free resource on managing pain naturally. Podcast - there’s one on fatigue. It’s just so good, I cannot express in words but it’s saving my life (as in helping me live not just exist) and giving me hope again and empowering me.

Please please give it a go 🥰

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