Hi, I've been diagnosed with Endometriosis for about 5 years now. I also have adhesions. I've no idea what stage it is or why I wasn't told. My endo was 'treated' during my first/diagnostic lap. Lasered all except a patch nr my appendix. Adhesions snipped. Then those god awful injections for 6 months plus hormone treatment. No improvement. Mefenamic acid doesn't work (tho I didn't take it correctly for at least a year!!!) Solphadine doesn't work, I pinch my husbands Zaipan (also codine) - doesn't work. No fertility probs. only diagnosed after first child.
My periods are very average, nothing to write home about. My pain which I now call "cramp week" comes mid cycle. I get cramp week, a few days respite and then my period for a week (no significant pain, just the same dull ache since puberty).
I've been keeping a careful monthly log of my medication/cramps for a while now and have really noticed a pattern (I'm not really very 'aware' of myself, don't notice things at the time, just try to power on) I get cramps when I'm driving, on the school run, if I get cross with the kids. I've also realised I can sense one coming and if I try especially hard to calm myself/remove myself it eases. All this escaping to lie down with my phone and relax really winds my husband up!
These cramps I speak of, don't last long, max 10 mins (I think they're getting longer) unpredictable, are very intense. Like a sharp stabbing pain, or someone with their hand in my womb twisting my insides violently sometimes they are VERY like contractions. I forget to breath. Then I try taking long deep slow breaths, then I forget again. I feel like I'm going to puke (never have).
Sex. Urgh. Actual sex is not really painful. Not penetration anyway. But during cramp week. Oof. If I get aroused (I HATE where this is going) I get a cramp, really intense. Have to stop. There have been many times over the years I've just had sex to please, completely switched off to avoid any arousal=cramp. This was not good for my mental Health. Proper resentment. Having sex with your husband and specifically trying not to enjoy yourself is very hard.
Not sure I've asked any questions. But I've never read any endo information that describes any of this. Every gyno I've seen (many in different countries) seem surprised my periods are fine and cramps/pain is PRIOR to my period.
So can anyone relate? I'm also tired. A lot. 3 kids under 7. I can't take Visanne as I have a history of aural migraines and prone to increased blood clots (tho never had one) as I have Factor V Leiden (very common 1:5) still, it's 2 risk factors...
I don't wish this in anyone, but I'd love to hear some similar experiences/symptoms.