Endometriosis and inflammatory conditions

[luthien]

Has anyone with endometriosis (post surgery, pre surgery or just managing it) been diagnosed with other inflammatory conditions?

I'll explain:

I've been seeing my physio post surgery for lower back problems and inbetween surgeries for other things such as upper back / shoulder aches, neck aches, neck tension, knee pain, ankle pain and maintenance of my Thoracic Outlet Syndrome. She think's I'll need further treatment / diagnosis by a specialist as after taking to a few of her colleagues including doctors they feel all my conditions are linked to my Endometriosis. I also have high white blood cell counts, sometimes low haemoglobin concentration and low ferritin, my thyroid antibodies are high. I agree with my physio; there's strong indicators for autoimmune problems causing bone / muscle / joint pain. I've not had a CRP test for inflammatory markers. We have looked up Fibromyalgia and Chronic Fatigue Syndrome; we think my symptoms match these conditions but cannot work out whom we would see to diagnosed these,

Has anyone else had similar problems and what did you do? What specialist were you referred to?

For reference; here's one of the studies / research carried out on Endometriosis and autoimmune conditions - which create inflammatory conditions. pubmed.ncbi.nlm.nih.gov/312...

[635703]

Medical science doesn’t seem to know if Endo is or is not an autoimmune condition. Please verify this with your own research. Interesting to note for your case.

I am so deeply sorry to hear of your struggles with your health. Wishing you all the best! X

[luthien in reply to 635703]

It's widely known that Endometriosis can cause inflammatory responses and thus is related to conditions which are autoimmune for example Hashimoto's. It's more the links between which are suggestive rather than itself being autoimmune.

I have updated my post with one of the research articles my physio + her medical colleagues have listed, there are more on the email she sent me but they are all pretty similar findings.

[635703 in reply to luthien]

Thanks for the information and clarity ☺️ Learning lots and fumbling me way forwards.

Appreciate this, thanks again 🙏🏻

[Moonglo]

As well as endo, I have diabetes and a thyroid cyst. My bloods don’t indicate anything like hashi’s and I don’t have the typical symptoms. I also suffer from myalgia, joint pain and fatigue.

I believe everything is linked - it’s all happening in one body, after all, but I’ve struggled to get doctors to have a holistic approach.

[luthien in reply to Moonglo]

Glad I'm not alone, it's not great is it

[Moonglo in reply to luthien]

I would love it if doctors shared their expertise with each other - there’s a department for this part of the body and that, but often they don’t collaborate or exchange ideas.

[Peppermints]

Yes I have all of the above that you listed. Have seen physiotherapists, been to two pain clinics, tried medication but it made me too drowsy so stopped. I had an MRI which shows I have disc degeneration and herniated disks but my back feels like it's going to snap in half. I've stopped asking for them- but I've begged for crutches in the past, just to give my back a rest.

I have right shoulder pain that last year, before endo was even mentioned, i had to go to a private physio as I couldnt breath through shoulder pain. I was guarding so much, my muscles had just become so tight around my chest, I couldnt take a breath.

I've been also been diagnosed, years ago, with hypermobility syndrome which causes multiple joint pain but I'm so used to that level of pain now that I've stopped asking doctors to see what's wrong.

I also have alot of neurological random problems. Partially numb face, back and toes.

Sorry for rambling on but noones been able to put two and two together for me and like you, I believe they are all related.

The progesterone only pill has helped with my horrendous PMS and I havnt had a period in 3 months but still get random stabbing (crippling) pains due to my suspected endo.

I'm due a diagnostic lap soon and if nothing comes back I'm going to be asked to be referred back to MSK as I'd like them to investigate further into rheumatoid arthritis.

The hospital departments are not great at speaking to each other especially when there hasnt been too much research for the diseases to be linked.

I hope this helps as you are not on your own and writing in this forum has helped me to somewhat come to terms with my problems and given me some possible solutions to my problems.

I hope that you get the care you deserve at whatever hospital you are at and always push for answers and medical notes!

[luthien in reply to Peppermints]

Ahh wow, you've been through lots already

The hypermobility syndrome is something my physio has also mentioned. We're just struggling trying to find the right department / specialist to refer me to for all the inflammatory things.

Have you been referred to the rheumatology department? I'm looking into that as they deal with all things inflammation.

I hope you get to the bottom of what's wrong with you regarding your diagnostic lap? are you having that with an endo specialist or just general gynae? only asking because it's best to have an endo specialist as they look for endo all over the abdomen. Sometimes general gynae will only look at the ovaries, tubes and uterus. If you're only going for a diagnostic perhaps ask - you can always contact their secretary to see if they'll do biopsies and excise anything they find which could be endo. It'll mean you'll have some answers and have some healing.

Thanks for replying to my post, it really does help me feel less alone!