Endo everywhere

[Nickster20]

Does anyone have symptoms all over the body? I've been for so many tests and seen every specialist in the hospital and nothing has been diagnosed. I had stage 4 endo which was removed in 2012 and those symptoms had never returned. However, I know have an almost constant sinus pressure and pain, shortness of breath, pain all over my ribs, dizziness, headaches, numbness in legs and arms, pins and needles, palpitations, head rushes, difficulty swallowing.....I just feel riddled and I don't know who else to turn to. My symptoms seem to swap week by week so no doctors believe me. Always the same things but they come and go. The sinus problems are there most days. Can anyone help? X

[Starry]

I am having excision surgery for deep endo in a couple of weeks and have developed the pins and needles and dizziness symptoms along with joint pain following quitting the zoladex and coil treatments a month ago.

Can you get re referred in case new endo has developed? It's rare but it can go other places.

There are quite a few companion conditions to endo that may be worth exploring due to its auto immune system connection. Eg thyroid, CFS, fibromyalgia, other hormone balance issues.

Have you checked iron, b12 etc?

[Nickster20 in reply to Starry]

Hi how did your surgery go? Hope you’re doing well. X

[Starry in reply to Nickster20]

Hi Nickster,

The surgery went on twice as long as planned as the nodule was more extensive than thought for the scans. Thankfully I escaped the bowel resection by a whisker but had to have major vaginal repair and lost 4cm2 of my vagina. It went well otherwise but unfortunately 4 days later I went down with viral meningitis and spent a week in hospital with that and have struggled with complications (most recently reflux esophagitis due to abdominal pressure in surgery and ibuprofen from my time with meningitis) and getting my weight back up since. I'm due to start an 8 week phased rtw plan in a couple of weeks time and am just praying that things start to settle.

On the plus side my back pain and bladder are much improved.

[Starry]

I am having excision surgery for deep endo in a couple of weeks and have developed the pins and needles and dizziness symptoms along with joint pain following quitting the zoladex and coil treatments a month ago.

Can you get re referred in case new endo has developed? It's rare but it can go other places.

There are quite a few companion conditions to endo that may be worth exploring due to its auto immune system connection. Eg thyroid, CFS, fibromyalgia, other hormone balance issues.

Have you checked iron, b12 etc?

[Alexcia_98]

Maybe get your iron checked?

[Ugne]

Nickster20- for sinus and inflammation symptoms i personally recommend a good quality supplement with different enzymes and natural anti- inflammatories like curcumin, rutin, bromelain, papain, especially serrapeptase. I'm taking the latter one for years and it has hugely helped me. But always consult your GP or other health consultant you're seeing for a second opinion.

[Nickster20 in reply to Ugne]

Thank you. Is this completely natural and safe to take? I’ve never heard of it for dissolving endometriosis. My main concern is the unknown blood clot in my vena cava. The doctors have told me not to worry about it but easier said than done.

[Ugne in reply to Nickster20]

It is natural, you can find more info online. It doesn’t mean it will magically dissolve endometriosis, but in a long term, it has an anti inflammatory effect and ‘eats out’ dead tissue in the body. I know lots of endo ladies who take it. I’m not a qualified medical expert though so always check with your gynaecologist/your chosen health consultant, or do your own research.

[Bella29 in reply to Nickster20]

If you have a blood clot you need to be v careful with even natural supplements. Anything that can have effect of thinning blood or dislodging clot could mean it moves or goes into blood stream. A qualified practitioner should be able to monitor your condition and advise on dosages. d

[Nickster20]

My vascular specialist has not advised to do anything at all. He said just live normally and forget about it. Very hard to. He has no idea why it’s there but seeing as it hasn’t changed in 2 years he’s not concerned. Thanks for this. I would have thought anything with a blood thinning effect has to be good so I’m surprised really. I was put on blood thinners when pregnant and for a couple of months after my baby was born but not on anything else.