Swollen lymph nodes - is there a connection?

[Lanchuan]

Hi all. I suspect I have endometriosis but not had a diagnosis yet.I've had swollen lymph nodes in my neck for around 6 months. It was picked up by a doctor who though it might have been thyroid swelling, but blood tests and 2 ultrasounds later and they're saying it's just reactive lymph nodes and nothing more sinister 🙏. They don't hurt and not as big as when you've got flu or anything like that. I've not been unwell in that time, other than the pelvic / back pain.

I wondered whether it could just be from general inflammation if it is endo? I tried to ask the doc to look at things as a whole but they just want to look at one thing at a time.

I'd be interested to hear if anyone's experienced anything similar?

(I will go back to the docs in a few months if it's not changed).

[parleystopaz0e]

Hi, this is a topic I’ve been curious about but haven’t found much information to say they are linked.

I’ve had swollen lymph nodes behind my ears as well as a high white blood cell count since I was a child. My mum thought both might be because of the fact that I used to have tonsillitis a few times a year. Then, I had my tonsils taken out but there was no change in my lymph nodes and my WBC count was still high. I also thought after my endo surgery they’d reduce - the nodes haven’t anyway, and I haven’t had a blood test since then so idk about the WBC count. I still think there might be a connection but then again there’s no definitive answer.

It’s good you’ve had it checked and they’ve ruled out anything bad.

[thebird1 in reply to parleystopaz0e]

I've also read links between thyroid issues and endo as I understand they are both thought to be autoimmune conditions. I had my thyroid removed due to thyroid nodules in 2010. Fast forward to 2016 and was diagnosed with DIE after 10 years of going back and forth! It's interesting isn't it!

Glad your results were fine x

[Cleo45]

Hi there,

Yes I have this too! I got sent for an ultrasound due to the swelling and wouldn't go down, everything is ok. They found nodules on my thyroid which gets checked yearly but there haven't been any concerns. Under my jaw are very swollen all the time but I get it behind my ears from time to time too and sour or acidic foods can sometimes trigger a pain

I hope you are doing ok on your endo journey, it is tough.

[Kelpiestryder]

yessss! I can offer no real clarity but based on my own journey I do think there is a link!

I’ve Had a sore throat, constantly feel like I’m about to come down with something, an annoying on and off again phlegm cough and an overtly swollen lymph node in my neck for years…kept on going back to my gp (amidst other issues) and was like clearly something is wrong here or my lymph nodes wouldn’t be constantly elevated and I feel like shit! Her response was ‘well it’s on your main artery so that’s probably why it’s so pronounced and obvious but it’s nothing to worry about’. Thankfully she referred me for ultrasound just to shut me up! In that app they were like, ‘oh all of your neck lymph nodes are swollen (funnily enough during a week I actually felt relatively normal), if they don’t go down in a couple weeks go back to gp!’

Back I went, because obviously they didn’t magically go away after years of being raised!! I Convinced her, after lots of tears and pleading, to refer me to haematology to check for lymphatic cancer etc…all came back normal! Specialist says yes it is odd that that one is larger than normal, but it does happen. It’s not malicious looking and not big enough to warrant biopsy especially as all other blood work, including inflammation markers, have come back normal!

When I queried and asked what could cause it he explained.. all Lymph nodes are supposedly localised, so if at some point you’ve had throat infection such as glandular fever (which I never have), then that one in particular could just get ‘confused’ from time to time and flare up on its own accord. Re endo (which he was keen to say he had no expertise on) if the inflammatory response is constantly stressed then yes it could trigger the already confused one to go into overdrive, (he suggested noting if it coincided with my cycle) or I might have an autoimmune condition where the immune system attacks itself but highly unlikely given how healthy all my results are!

Literally today just got back from another doctors app, she had thankfully agreed to refer me to gynae for suspected endo but when I suggested that maybe my immune response could be under ongoing stress from the underlying endo and causing all these other weird symptoms ie the swollen lymph, fatigue etc etc because my body is fighting something it can’t get rid of, she literally look at me dumbfounded as if I was suggesting something utterly absurd like trolls ruled the earth once upon a time!

I don’t think it’s absurd or that farfetched. From all the reading and knowledge I’ve gained from how endo, the inflammatory response, hormones and immune system work, I wouldn’t be surprised if they’re all linked! And unless I have some bizarrely weird or rare autoimmune disease that no one knows about then I’d say my hormones, pms, pmdd and suspected endo are causing my immune system to respond against my body ALL THE TIME and in general most of my lymph nodes are inflamed as an immune response to the invasive endo! Coincidently..been following a low histamine, anti inflammatory diet for nearly 6 weeks now and low an behold all my symptoms including the odd neck lymph have reduced by id say 50%! So that was interesting!

I know doctors aren’t magicians or gods but seriously why can’t they put two and two together and figure their shit out instead of us having to bleed and cry tooth and nail to be heard!!

This post (like so many others on here) has given me even more comfort knowing I’m not the only one with random weird symptoms that no one can figure out and that for the past 20years I really should of advocated for myself more in terms of woman’s health because I just thought all this shit was ‘normal’ and believed them when they said ‘it’s all in your head’

[Ps-endo]

I have stage 3 endo and for about 4/5 years now I’ve had a constant lump behind my ear and one in my neck, both of which I’ve had checked and scanned and were told were swollen lymph nodes. They don’t hurt, but they also never go down in swelling or anything and for the longest time I’ve thought there must be a link between the endo and the lymph nodes!