Endo pain links to stress? Sex? Hormones?

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.

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  • Hi,

    Since being diagnosed it has struck me that people seem to suffer in so many different ways. I can see a lot of what you experience in myself so can definitely empathise.

    I get cramps mid cycle and on cycle, I feel although the consultants doubt this when I explain!

    Recently in a&e with similar waves of contraction like pain and told this is probably due to cysts bursting - which I have a history of. Was given diclofenic suppositories to take at night which have helped.

    I was diagnosed last February following a diagnostic lap when for good measure they ablated as much endo as possible but they were unable to do a lot around my ovary and Fallopian tube. Following lap whilst coming round from anesthesia they told me I should start zoladex immediately, I refused as wanted to make an informed decision. I did decide to go ahead and stuck it out for the 6 months, during which time I have to say I feel like a new (if slightly sweaty and for the first couple of months panicky) woman. These stopped in December and my body has slipped straight back in to the cycle of pain and flooding it was in before.

    I am ridiculously tired all the time which comes across as incredibly insensitive when your in meetings with staff (I'm in HR) but I'm not about to start every meeting with 'sorry if I yawn but I have a medical condition ' !

    the difference for me now though is that where I didn't feel pain in sex before I do now. Following my trip to a&e I've been urgently re-referred to gyne so who knows what they'll come up with.

    I have been given mefensmic acid - but this isn't doing much I wonder if I'm taking it wrong - how did you find out?

    I feel completely drained by it all, had to leave a meeting recently because I flooded - the meeting was with a man whom let's say, is not the most tactful so I'm dreading our next face to face. It's just exhausting Having to think ahead and plan your life round this and only half the population can attempt to empathise!

    Then there's the issue of explaining al of this to a consultant who is a man!!!

    I think it's about being clear of your pain and managing it as best that works for you, we need to be strong with the consultants and stop doubting our sanity.

  • "we need to be strong with the consultants and stop doubting our sanity."

    I think I need this as a sign over my door!

  • For years I had uterine cramping pain starting about 2 weeks prior to my period, then during, then one week after. I also had a lot of clots with my period.

    They felt like contactions and would ease if I breathed deeply. I also tended to notice them while driving!

    My health since then has been a roller coaster, and some of the pain has let up, because I have celiac that was undiagnosed and I was getting low in sex hormones, plus I got hyperthyroid, so my endo pain decreased a bit.

    So I don't know enough to explain what was going on, except hormones and my thyroid play a role. My thyroid and sex hormones have improved partly with celiac diet changes. The constant uterine cramping is gone and I did not need surgery or meds.

    I'm not free from pelvic pain, but those contraction cramps before my period are greatly diminished.

    I'd recommend looking for a really, really good endocrinologist. It sounds to me like your pain might be more uterine than endo in this case, and hormonal imbalances can cause uterine pain. There is also the possibility of fibroids, adenomyosis, or adhesions.

    Gynecologists are too often surprised about anything hormonal! I asked SO many gynos about my cycle irregularities and got a shrug each time. An endocrinologist figured it out for me.

    Functional medicine doctors also claim to treat this sort of pain, but I have not had good experiences there. Too much woo for me.

  • Oh my, this sounds awful - poor you :( I too had adhesions snipped 1.5wks ago as my ovaries and fallopian tubes were stuck to my wall, and my womb was tilted as being pulled by endo. Some endo was lasered but they couldn't get rid of it all apparently.

    Please may I ask what the "injections for 6 months plus hormone treatment" were for? I only ask as I've had such a weird time with my hormones, especially over the past year (was only diagnosed with endo just over a week ago). To the point where I'm very up and down. About 3 or 4 times over the past year, I've almost dumped my poor boyfriend - who I love dearly!!! I literally can't bear to be around him, don't want him to touch me etc It's awful for him but I can't control it.

    I'm now just wondering if this could be linked to endo?

    Anyways, sorry for waffling on on your post - but what you wrote got me thinking that's all.

    Hope things get sorted for you :)

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