Endo coming and going

[Star-girl]

Hi ladies,

Does anyone else have endo that constantly comes and goes within moments? For example I can walk around my home and be ok , but if I turn a corner or keep going, I can’t walk up the stairs without dragging myself up there. It’s almost like my body locks itself down or goes into spasm and then comes and goes at different time spans, regardless of the monthly cycle.

It confuses me all the time to the point where I’m like I must be making it up, but I have a surgery for endo on my utero-sacral ligaments soon.

I would love it if someone could explain it, while I’m housebound, and constantly afraid to leave the house in case I ‘break down’ on the road outside when I can’t get home, two minutes usual walk away.

Many thanks , I often read your posts when things are tough and they really help to feel solidarity. X

[Lou93]

Hi I get this sometimes I can be fine for so long then get a sudden flare up I only had endo removed in april this year so I’m confused aswell x

[Star-girl in reply to Lou93]

Thank you for sharing Lou, I hope all becomes clearer for you and I.

x

[Mparstoy]

Hi! I'm so sorry. It is quite confusing. The Endo is always there, it is the flare ups that are intermittent. In a certain way, you can be thankful that they do go away and the pain does not remain constant. Hopefully your surgery will help you! Until then, you can take care of yourself. Do you excise? Have you tried the Endo diet? Keep your pelvic area warm at all times, avoid walking bare footed on a cold floor. Find a massage therapist or pelvic floor therapist. Meditate.

Observe if there are particular moments that might simulate the flare ups. Like not sleeping well, less than 8 hours. Stress, eating inflamatory foods, not excercising the body.

I wish you the best!

With kindness

[Star-girl in reply to Mparstoy]

Thank you for your kind reply Mparstoy.

I hope you are feeling well today.

I know you are right about flare-ups, I’m sure there are triggers. I’ve made dietary changes and am taking a homeopathic course which really help.

Exercise is a sore subject because yoga is not poss due to organs stuck together and on ligaments. I do gardening when I can & keep moving most of the day. I miss walking a lot.

Am having physio sports massage post op, to help get movement back stronger.

I’m hoping to discover the basic science of how the endo affects the body during flare ups,. does the disease pulse, grab the skin tissue tighter and then let go of its grip, how does it come and go?

Thank you for caring 😊

[Mparstoy in reply to Star-girl]

I personally would recommend a pelvic floor therapist instead of a sports therapist. They tend to know know about Endo and what you need post lap.

As far as the flare ups, there are inflamatory mediators and a hormone called prostaglandins that are released from the Endo tissues that create inflammation and pain. These are not constantly released which is what explains the intermittent episodes.

Big hug

[Star-girl in reply to Mparstoy]

Thank you for the advice, I shall look up a pelvic floor therapist in the area.

Thank you also for giving me info to look up regarding flare ups, much appreciated.

Many stars and love 😌