endo and failing immune system - Endometriosis UK

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endo and failing immune system

Becky2894 profile image
22 Replies

hi all,

I am currently on the waiting list for excision of endo. I have had an MRI and my results where “There was however some thick adhesions (scarring tissue) between the back of the uterus and the rectosigmoid colon. There is also thickening of the uterosacral ligaments” does this mean I have bowel endo? Or a certain stage?

My second question is - lately I’ve been getting poorly with everything - covid 3 times in a short space, chest infections, flu, tonsillitis etc. it feels like my body just isn’t fighting things off and it’s a real struggle on top of the other symptoms (I’m currently on ten laxatives a day plus pain relief medication). Has anyone else experienced this and could it be related? I’ve even noticed things like my gums bleeding lately and odd things that feels like my body just isn’t happy at all.

Any advice would be hugely appreciated - as I’m sure lots of you know, getting an answer in any form from a specialist is proving impossible. I do have a colorectal surgeon appointment soon - but I haven’t actually been told what for.

thank you x

22 Replies
Starry1977 profile image

Hi.my mri showed significant scarring between uterus and rectosigmoid junction. Think it was 1cm thick. Plus I have a 2cm endometriosis nodule in the same area stuck to bowel wall and uterus. I'm stage 4. It's not been described as bowel endometriosis to me as its not gone into the bowel wall . I'm very lucky though as only have discomfort rather than severe pain. I'm not sure about your other symptoms but you may be run down with it all.

Becky2894 profile image
Becky2894 in reply to Starry1977

thank you so much for your reply, that makes sense. Really appreciate it!

ocke2030 profile image

Hi Becky,you have the same situ as me with the endo and yes does seem.like there is bowel involvement and yes it can affect our immine system. but i think some bloods are in iorder to check things out . maybe lacking in something i lack vit d because of endo lts a weird one i know . goood luck and hopefully you start to feel better soon

Becky2894 profile image
Becky2894 in reply to ocke2030

thank you so much for getting back to me and sorry you’re the same - it sucks! You’re so right about the bloods - I have another GP appointment on Monday whilst I wait for the consultant appointment so I’ll raise that then I think and see if they can take bloods. It’s no good being unwell on top of the pain :( sending love

Billysugger21 profile image

just a thought… could you be anaemic? Anemia causes repeated infection. I would take a supplement even if the GP says you aren’t. Been there. Still am to a certain extent. Take care.

Becky2894 profile image
Becky2894 in reply to Billysugger21

thank you for replying - funny you should say that because last time I had my bloods I was apparently on the ‘verge’ of anaemia - I think I’ll see what I can take anyway for that then and ask them to do my bloods again. I never realised it could be that!

Becky2894 profile image
Becky2894 in reply to Becky2894

Ps sorry to hear you’re the same - sending love

Ecclesiastical profile image

that sounds awful having to take ten laxatives a day! I think malabsorption of different vitamins required for the body to function may be one reason you’re feeling so run down with illnesses. I have endo on my pouch of Douglas, bowel wall, and recently underwent a bowel shave. I couldn’t open my bowels without daily use of suppositories and took high strength fibre which just caused significant bloating. I was told I have vitamin d deficiency ( apparently not that uncommon in UK) and B12 deficiency which appears to be a common one in my family as both my sisters and mum have it as well. I paid for my surgery under an excision specialist in the end which is bittersweet for me, the juries still out on whether it’s worked (less than a week post op) all I will say is I’ve had to fight and advocate for my health every step of the way, nobody knows how it feels to be in your body and try and just get through the motions of life day to day and I have felt like it’s just existing not living at times. I truly sympathise with your circumstances and hope you can access some additional support x

Purple_Badgers profile image

Hi! I can’t really help with regards to the stage that your endometriosis might be graded as, but I just wanted to add to what the others have said above. It seems to be extremely common to have immune system issues alongside endo, and there is one school of thought which says that endo could be classed as an immune disorder itself.

I have been experiencing problems with anaemia, raised glands and increasing joint problems which seem to be rheumatoid arthritis. I have been feeling almost permanently “flu-like” and exhausted, making me wonder if there’s something else going on that hasn’t yet been picked up. From what I read, there’s so many endo sufferers in the same boat.

Look after yourself, and maybe keep a diary of all the symptoms for the gp, as you deserve to be thoroughly checked over in case something else is going on xxxx

Lily1986 profile image

hello. So sorry you’re going through this too.

I have stage 4 bowel Endo and adeno, I have had multiple surgeries including two excision but it just returns, each worse than before very quickly. It’s permanently damaged bowel, bladder, nerves and ligaments. I’ve lost both tubes and left ovary.

I’m now in constant pain and it’s severely impacting my life .

My last mri results sounded something very similar to yours, considering mri’s only show the most severest parts of it there will be a lot of Endo and adhesions that don’t show up on scan only during laparoscopy.

I also have an absolutely shocking immune system, no one can quite believe how often I’m unwell with one bug or another it’s horrible. Especially as due to lack of research doctors often fail to recognise the connection.

My gastroenterologist told me that a lot of the bodies immune system is based in the gut, so if it’s effected or damaged by disease it will have a knock on effect. That seemed to make sense.

If you ever want to message me please feel free to anytime.

Best wishes to you xxx

ocke2030 profile image

Hi It does suck but good luck

Becky2894 profile image

thank you so much everyone for your responses it is so appreciated. It sounds like I need to prepare myself for a lot more being shown when they do a lap than what is shown on the mri … the thing is i want children so I am just trying for them now whilst I wait for surgery and hoping for the best to happen in the end. I’m going to see my gp again on Monday and ask for more bloods and tell them how bad the bowel problems are getting :( it’s just so debilitating sometimes and constantly having to think about where the nearest bathroom is because of the laxatives is not a nice way to live. Really sorry that you’re all going through similar. Sending so much love and strength xx

USgalwthendo profile image

hi. I’m so sorry you have not been feeling well. I too have endometriosis, as well as Sjogrens, asthma. And probably other stuff that has yet to be diagnosed. It is common for folks with autoimmune conditions to have more than one. Not to say that is happening for you. But you may wish to keep it in mind. For me I noticed light sensitive my eyes would hurt. Fatigue. Then my joints hurt. Got tested and now I see rheumatologist for my Sjogrens. Today my endo was bothering me. Used my heat pad at work. Diarrhea twice. Ibuprofen. Made it through the day. Sometimes both conditions flare and symptoms overlap, such as fatigue. I suggest you speak to your physician about any new symptoms and press for answers. That in itself is like a full time job, but necessary in order to get the help you need, take care.

Becky2894 profile image
Becky2894 in reply to USgalwthendo

that sounds so difficult :( I really feel for you. Thank you and definitely something I’ll keep in mind and raise at my next appointment. Much much appreciated sending love x

Avourneen profile image

That does sound you have endo in the bowel and probably DIE . You can phone or e mail your consultant and say that you don't understand the scan and would like some clarification.

New studies show that catching covid really weakens your immune system for about a year so the problems you are having might be to do with this. I think it's crazy that so many people are blase about catching it because even a mild case can have long term effects especially on the brain , but it sounds like it may have just weakend your immune system a bit.

You can help your immune system get stronger by taking vitamin D and cold showesr every morning a really meant to help (don't fancy that though). The Wim Hoff method which has been all over TV is meant to have scientific evidence that backs it up saying it strengthens the immune system but I have never tried it. You could look into it I suppose.

I hope your health in general gets better and push your cnsultant to clarify what your MRI says in plain English. Good luck.xx

Becky2894 profile image
Becky2894 in reply to Avourneen

thanks so much this is really great advice - really appreciate it x

Vickster23 profile image

Sorry to hear about what you’re going through.

But it’s an interesting question! 6 months after my endo surgery (excision and a hysterectomy for adenomysis) I got covid and I’ve had long covid ever since. I’m really starting to wonder if it’s all about how my body copes (or doesn’t cope!) with inflammation.

I have asthma which is also about inflammation. A couple of years before my endo op I broke my ankle and had to have two operations on it because the metal pins didn’t settle properly.

Maybe it just helps me to not think this is all just bad luck but surely there’s some sort of connection.

Becky2894 profile image
Becky2894 in reply to Vickster23

I have asthma too! That all makes so much sense. I also get tonsillitis all the time which is inflammatory .,, suggests a link doesn’t it! Thank you xx

Kater66 profile image
Kater66 in reply to Becky2894

Just a small contribution here as I aso suffered from similar things and have had a hysterectomy to sort out the endo, then after all sorts of inflammatory conditions including asthma, intercostal inflammation (thought I was having a heart attack!), as well as tongue swelling, rashes and all sorts which was getting pretty scary. Last spring I was struggling to recover from a bout of Covid and someone suggested that I might have underlying infections which meant I wasnt shaking it very fast. Long story short I saw a functional practitioner (Dora Walsh of Nutriheal) and after a lengthy questioning session she suspected mould /mycotoxin poisoning, so sent me for tests. Lo and behold I came back really strongly showing infections for 4 separate moulds that I could have picked up at anytime in my life. One of these is usually caught from exposure to hay or animal feed (I grew up on a farm) - and this one is highly estrogenic which I believe is part of the reason behind endo...another was probably from a water damaged flat in 2010 when I was first diagnosed wth Asthma.

Fast forward 8 months and I have been on a liver support and body detox journey with Dora. This cold weather would normally have kicked off my asthma but I have zero wheezing, I feel so much better, no more symptoms at all and have lost an amazing 11kg...

Obvs I have no way of telling what my endo would be like now as nothing left to check, but I would wholeheartedly reconmend people checking out possible mould exposure and infection. I hope this might be useful for some of you. Best of luck

Becky2894 profile image
Becky2894 in reply to Kater66

this is so interesting thank you I’ll definitely mention this next time! Glad to hear things have been a bit better for you x

BJ13 profile image

Hi I'm sorry you are suffering. I have later stage endometriosis and it has resulted in a weakened immune system. Since endometriosis is a chronic inflammatory disease, it means it causes significant inflammation throughout the rest if my body. When I have a flare up, I become sick and pick up whatever bug is going. I also have rectal bleeding and my gums and nose too. It's disconcerting but makes sense when we consider the nature of inflammation and hoe it impacts tissue. In order to avoid becoming ill I have to take stringent steps re: self care. Eliminating stress is crucial (though not always possible) and my body needs A LOT of sleep so I'm strick about getting at least 9 hours and I only do one thing per day so if I'm at work, I won't be socialising. I realise this strategy isn't possible for most women particularly if they have kids. But basically you need to begin accepting that you have a chronic illness and must therefore alter things that are within your control to improve your quality of life. Unfortunately, even that doesn't always work, but it will lessen the frequency of bouts of illness etc. It's a hard pill to swallow bc mostly we just want to live like we don't have an illness, and it took me time to grieve for the life I'd wanted and accept that I had to change the way I lived bc I had a chronic illness. But in the long term it means that I have a much better quality of life and suffer less than I used to. I hope you can do the same xx god bless xx

Becky2894 profile image

thank you so much - this is so so helpful. It’s strange you mention bleeding gums because I’ve recently started getting that so badly out of nowhere and never even thought it could be anything related. Your comment about acceptance really resonated with me - I think that’s what I’m struggling to cope with at the moment. I have definitely changed my lifestyle now e.g like you say, self care and sleep is my priority but I like the idea of either work or socialising and not doing both in the same day. It’s tough accepting and I’m only 28 and I think I’m going through the grief/anger stage of it all at the moment, but ultimately, I need to accept life just needs to be a bit different for me to feel my best. I’m glad you’ve been able to do that and I’m going to keep working at that!!! I do notice when I am not stressed and when I prioritise self care I do genuinely feel a bit better. Really appreciate this so thank you! Xxx

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