Hi everyone,I've recently had a nosedive in my general health due to endo, going from working full time in a café (with a lot of stairs!), to only being able to manage two or three short (5-6 hours) shifts a week. I also don't go out much anymore as I'm often too tired, or scared that my energy will fail while I'm out and I'll have to drag myself home in a lot of pain and cut the day/outing short. I'm struggling to come to terms with my current levels of ability, and I'm confused as to why I feel okay some days, but so rotten on others!
I've also just finished Heal Endo, which has been great. But I now feel overwhelmed at all the advice in there, and confused about how to choose which lifestyle changes to implement, and which that are either too much for me right now, or are just too big a lifestyle change.
I feel constantly aware of every twinge of pain in my body, wherever it is, and it's exhausting being so anxious all the time. I feel so dejected every time I get a bad day out of nowhere, or have to call in sick, or cancel plans. Can anyone relate? Does anyone have any advice? My friends and family (and even work colleagues) have been so supportive, but I don't know anyone else with endo. Does it get better?
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hello I couldn’t read and run - this is how I feel every single day. For me things have got worse, not better unfortunately. Had 1 lap and 2 endometrial ablations of my womb, every day I am up and down.
I also suffer with fibromyalgia which causes pain and CFS which gives me severe fatigue. As well as endo and adeno I have a blood condition too. It’s so exhausting, mentally and physically I have changed, it makes me sad.
I don’t really have any advice apart from you have to pace yourself, surround yourself by people who are supportive and forget those who are not. Also a good GP makes a big difference.
It got worse despite taking the pill. Now endo is on my lungs and each time I've got periods (on average each 4 months), I get a pneumothorax. When it's taken too late, it's finished. It's even worse when they don't want to operate you. I'm surviving everyday and it's getting worse and worse, taking vitamins everyday + natural plants. It's like if I were dying slowly everyday from cancer.
Sorry you feel so bad and it’s on your lungs. I’m not sure if you’re aware of Edinburgh Uni research, they’ve discovered that Endo cells act in a similar way to cancer cells, but say it’s not cancer. I’m not saying this to make you more despondent but to say that the way your feeling about it you aren’t a million miles away from your thoughts. Drs are still to find a cause but we are left suffering and not getting the understanding that other conditions receive.
Can you not push for surgery? Maybe in London there would be a surgeon specialised enough for your case.
I'm pushing like crazy. The last time the specialist for endo laughed at me but defended myself (I was really mad and depressed after that). Am gonna see another one soon and if not, it will be in London or another country in Europe (I will check all options if I end up having to pay private). Have seen a pneumologist recently and that specialist finally understood that it was endo acting on my lungs during periods (she was so much more understanding and way better than the so-called endo specialist).Yes, I know that endo travels through your lymphatic system (like cancer), can even reach your brain! I talk about endometriosis everywhere that I go, even to men and in the slightest details so that people truly know what endo really is and is not just about having one day of "bad periods". It's really important for people with this condition to share their experience because I've noticed that often people are being told rubbish ideas about endo and that in other words everything is fine for endo sufferers.
It feels like we go crazy pushing 🤦♀️😂 it’s terrible we have to.
I think you can still get referrals to Europe through the NHS. They try to ignore that, but pretty sure it wasn’t an EU thing but a European thing. It’s been in place for years. You can definitely get NHS in London and I’d be sure you’d get a pretty good consultant. The pneumologist could refer you if they were willing.
Can’t understand how they say it’s ‘like’ cancer but isn’t. Classification would be good of some kind though. They haven’t a clue 🙄
There is so much rubbish about it, we’ve heard it directly from Drs, my GP was very dismissive when I told him about the research and cells act the same way as cancer, don’t think he believed me. I tell people as well, although pretty much don’t believe me either.
Let us know how you get on finding a surgeon 🤞 won’t take long.
Thank you so much! 💖💞💕💓 Well, it's not easy to feel good about it everyday. Haven't been able to see any of my friends lately because I had been sick since April until now (having a pneumothorax nearly each month wasn't much fun). And now, need to catch up studying + exams + hospitals (hope I'll be able to see some friends). And also I'm scared I won't be able to do much with my friends because of my lungs being more fragile and some of my friends don't seem to understand how bad it got (you would be shocked if you knew all I could do, crossing islands swimming...before it got seriously worse). So, sometimes, I feel like I'm worthless, can no longer do anything, can no longer do any sports (that makes me mad because even swimming now hurts). I would love so much to be myself again and achieve all my dreams.💕
I wish we did get pain free days, some reprieve would be helpful 🙂
It doesn’t shock me what you did, just sorry you’ve lost that and hope you get it back before too long. I used to have 2/3 jobs, very active from work perspective, never used to sit down much. It does all get to you when life feels like it’s passing you by. You’ve got some hope now that the consultant will be able to help, or at least willing to try.
You aren’t worthless, it’s a condition you had no option in getting, nothing you did gave you the disease. There is no lifestyle choice that would make any difference that anyone is aware of.
Pace yourself with study, it can be tiring just concentrating so much. Good luck with your exams, you’ve still got the determination to do them by the sounds of it 🙂
It’s so difficult for others to understand, you might find an article on researchgate that will link to the lungs and Endo, might help them understand, could help you as well if there is. Can be very interesting.
I'm sorry you're going through this, it's a big thing dealing with a chronic health issue. I can relate to the exhaustion and noticing every twinge, it takes up a lot of emotional energy as well as physical.
I haven't read Heal Endo but is there one small change you can implement that doesn't feel overwhelming? Perhaps introducing one anti-inflammatory food per week? Like I say I haven't read it so I may not be on the right track here but tiny steps may help?
It's good to hear you have a great support system. Keep leaning on them
Can totally relate and my heart goes out to you ❤️. This is exactly how I feel all the time! I have days where I feel absolutely fine and then I'll wake up one morning feeling utterly rubbish - severe nausea, pounding headache, aching legs, no energy......the list goes on! Usually last 3-4 days! Really struggle emotionally when feeling unwell.Only manage to work part-time because so up and down. Literally just phoned my boss to say having a really bad flare up today.....thankfully she's understanding!
Even though I'm on Prostap (3 monthly ones but having to have them every 6 weeks) the hormone specialist thinks my issues are caused by hormone fluctuations!
It's the same with me! Thank you for sharing! I sometimes really struggle with my mental health during these random down periods. I hope you and your doctor can work to find a solution soon!
Sure I can relate. Start small. Be gentle with yourself. Set your expectations that this will take a while to find your path. Perhaps write a list of the things that you are querying and go back star the ones that you feel might be top of the list, middle of the list and those at the bottom. Then choose one big hitter and maybe one lesser one for the first month.
Choose one area that you suspect might be a real problem . So I did a 48 hr lactose intolerance challenge. ( Dr Google has the details) which was simple and I felt the benefits so fast that it gave me a clear answer that I then implemented relatively painlessly after looking at where lactose is and isn’t. ( Don’t assume all dairy is an issue - it’s the whey and some dairy is very low or nothing and we all can tolerate apparently 250ml daily which means you don’t need to be a social outcast ). I then ( because have been a practitioner ) decided I needed to help my gut heal - for that I started using Omega 3 oil daily at the right dose and upped my water intake. In terms of changes I always allow 3 months to assess change as the body needs that long. Lastly my next first step was learning the 360 degree breathing technique that helps relieve abdominal pressure and did a little bit daily. It helped the pain, stress and oxygen levels which in turn made me feel a whole bunch better. There’s a good demo of this on Dr Angie Mullers Instagram feed @corerecoverypt. It’s very gentle and for me I found when I was so tired and exhausted that just stopping for two minutes and doing the technique relieved the pain enough to think how best to next take care of myself.
Thank you so much, that's a bundle of great advice! I tried 360 breathing and found that my chest started to feel sore. Don't know if I'm doing it wrong or if that's just the muscles getting sore from being still for so long! I'll definitely check out Dr Angie Muller
sore was normal for me too at the beginning. It had been so rigid and locked that it wasn’t used to moving. I did three of each exercise at first until building to 3x3 of each cycle after a while.
That's reassuring! I can put my hypochondriac mind to rest over the soreness at least! I'm so glad you've been able to build up and feel the benefits. Which exercises do you do?
never a hypochondriac 💗 it’s a killer on the system . In the end I did some zoom sessions with her but the simple ones she’s shares are the foundation. There’s a really useful podcast of why pelvic core recovery is so key in a discussion between Angie Muller and Leah Brueg on Leah Bruegs website link on @leah.Brueg . I think it’s about number 52 or 57. Really worth listening to
What ever you choose to tackle first keep a tracker going. Keeping it all in your head it will only add to the sense of overload and add to the lowness. Main symptoms and a score and where you are in the cycle. I used to briefly note what changes I choose to make at the beginning of each month. It helps assess things more at a distance and is a record or whether changes are helping or not. Keeping your stress levels down is important emotionally and that’s so hard with everything you’re carrying right now if you can put it down on paper it’s not just rattling about inside your head .
I had to keep reminding myself that the changes are there to help reduce the overload stack. This is a body wide issue and while certain things can really load the stack in our favour and other things not. No food or activity will ultimately cure it and everyone’s system has its own quirks. So a girlfriend and I both find the omega 3 key, both of us needed more protein, both don’t handle lactose well, both needed less inflammatory foods but she can’t manage wheat and that’s dandy for me but potatoes aren’t brilliant for me and she’s just fine . She does okay with 2 litres of water I need 3 … I need the breathing process regularly, she just does a maintenance version a couple of times a week . I have to walk for my own well-being daily , she does half of what works for me …
Building your personal bible of what’s key for you to feel okay and functional happens gradually and you’ll get there eventually and that might need medical attention too 💗🙌💗
Thank you so much, that's really helpful and reassuring! I never thought to keep a tracker of all the changes. That will help me take it one step at a time instead of stressing over a million new habits I need to pick up!
No point overwhelming yourself or pressuring to do it all at once. Gradually adding stuff usually means you can see if it helps and by how much ( these thing’s normally build too ) and get used to new ways of doing stuff. No point adding to the anxiety or over striving to be “perfect “ . Only adds to misery instead of improving life and perfectionism . I learned the hard way after too long over trying just meant more pain.
You are so right! Trying to do everything all at once is my first instinct. But that's not going to build lasting change, it'll only build anxiety and pain as you said!
Sorry you are going through it all, you certainly aren’t on your own. Glad you are managing some work. If you are claiming benefits such as universal credit, there is also a health payment if you can’t work. Not much but something.
Where are you in getting treatment?
Endo is in the top twenty NHS most painful conditions as well. It’s not nice but it is an acknowledgment to how bad it can be and something to tell people who may not understand
Wow, I didn't know it was in the top 20 most painful! It's reassuring that it's not all in my head 😂 I've applied for universal credit and will hopefully get my first payment at the end of the month. Will I need a work capability assessment or a fit note or something for a health payment? And I've got a surgery next month, I'm just so worried it won't help with the fatigue, stomach issues, and the whole body symptoms!
Definitely not in your head 🙂 pain is never in the head in my book at least
Ask your job centre coach about it, you’ll need a fit note and an assessment, provide as much evidence as you can. If you have a fit note they can’t harass you to work either.
I hope surgery goes ok, I’ve felt a little better each time, but they’ll never make promises. What sort of op are you having?
Thank you so much! I'll definitely look into that if I have to work even less (or not at all!). It's a laparoscopic surgery and my surgeon will burn off or cut out any legions she finds. How many surgeries have you had?
That’s good they will treat as well, try to make sure they’ll get rid of all adhesions whether Endo or not.
I’ve had five, not all for Endo. Technically three for checking for Endo but none was found on the third but there were bowel adhesions, last two gallbladder, appendix and adhesions. The most I should have had was three really, possibly just two.
Hopefully you can find a solution for the tummy issues! Mine started playing up massively from taking too much naproxen, but omeprazole is managing it at the moment. I don't know if that would be helpful for you or not!
I’ve had omeprazole on and off last few years, doesn’t really do anything. It is good when taking Naproxen. I’ll chase gastro end of the week if I haven’t heard back.
Honestly, I feel like my life is chasing doctors at the moment! 😅 Hopefully you can find a solution soon.I'm okay, had a few bad stomach days recently though! (For no apparent reason, I might add!)
How long did it take for you to get universal credit? How were you able to get access to it? Was it easy or super difficult with people ignoring your symptoms...?
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