Just wondering if anyone could give me some advice on trying to explain the pain that Endo causes to a partner. So far I've had 2 hysteroscopies and 2 laparoscopies, the last one included a dye test and removal of adhesions. I've currently got an apt for an mri at the end of this month as my uterus is a funny shape and they want to check my kidneys or other organs are not being affected. My lap was in October 2015 and already I can feel the pain coming back even though I take the pill constantly without a break. I'm constantly tired and lethargic with little enthusiasm for anything. Regularly feel sick, daily bowel problems, back pain, everything! My pain at its worst feels like my ovaries are being squeezed and a burning feeling which also goes through to my back. Anyway, my point is, when I say to my partner I'm in pain he just asks me if I've been to the toilet!! I can't tell you how mad and frustrated I get that he seems to trivialise what I'm going through. Because I'm in some sort of pain on a daily basis I truly think he believes I'm some sort of hypochondriac who's putting it on to get out of the housework!! What are other people's experiences of their partners/friends reactions to this invisible illness?
Sorry for the massive rant, I only discovered this site yesterday and it's so reassuring to know I can hopefully get a lot of answers to questions I've struggled with up to now.
Thanks for reading
Kerry x
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Endogirl74
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I feel your pain (literally!). My husband is one of those annoying people who never get so much as a cold so he just doesn't get what I'm going through. There was a post on here a little while back where someone wrote almost like a letter describing to people what they are going through and it was great. I'll see if I can find it but I anyone reads this and has a link to it saved that would be great. I'll have a search...
Thank you so much, I've had some good advice but if you could find the post that would be great. If not, don't worry. I've done nothing but trawl this site for the last 3 nights so I could come across it myself. X
My husband is sympathetic most of the time but there was one time after my lap I said I couldn't stretch to open the curtains and he said "ok, don't milk it now!" What frustrates me is when I had my lap and people think you're then 'fixed'. They don't understand that there's no cure. Also, some days you're fine and the next day in pain and can't go out and I feel like people don't believe you- "well you were fine yesterday!" X
My hubby has been very supportive, especially since the pain was so bad I thought it was my appendix about to burst!
Although, for some reason (possibly because his sister has suffered tremendously with endo for a couple of decades now), he seems to look for other explanations for the pain. At first, it was "because I'd been on the pill for ten years and now my body was adjusting" (well how do you explain the pain before coming off the pill?!), then when I collapsed at work, gp thought it may have been a UTI (so perhaps I was just having these each month?), then the walk in centre thought I had grumbling appendix (to my hubby, must've accounted for all the pain I'd had, even though the uterus pain was different to this other pain under my rib), then the hospital thought it may have been kidney stones... he seems desperate for it to be anything other than endo.
For the first few months I tried to hide how much pain I was in but I couldn't really keep it up over Christmas when I wasn't in work as he saw more of me during that time... but recently I had a bad episode and he chirped up with "don't worry, it only usually lasts three days then you're fine again!"... I couldn't help myself but say "are you kidding me?!? Last (non-pill cycle) I had 5 days out of 34 where I wasn't in pain". It dawned on him that just because I'd not be in work for three days (plus a weekend) with the worst pain in a month, that the rest of the month was fine.
But because of trying to have a logical answer to all of this, I am desperately hoping they find something during my lap tomorrow.
Have to tried giving him the gory details? Telling him it's basically a bit like your uterus is built inside out, so when it bleeds, it has nowhere to go so forms internal scarring and lesions. Sometimes this helps to explain it to people (well, I mentioned this to two female colleagues, one then proceeded to tell us about her flaky skin condition, which was 'awful', so she knew what I was going through 😁)
It's hard for us to describe to men exspecially has they havnt experienced periods ovulation, giving birth etc etc.
I sat down with my 3 sons yesterday as I felt the need to go back over with them what's wronge, it's hard for them as I had a hysterectomy for Adenomyosis in July last year, and we was all under the impression that I would come out off that a lot better off than I did, I explained the science behind it and the tiredness and emotional side,
And the fact that I can wake up any day feeling bad/good, it dosnt matter how I felt yesterday, and tomorrow could be different, my husband is great most of the time, but it still wears him thin as does it me,
I think taking your husband along to docs consultant etc helps, also, if you come across a post on here that sounds like you, show him, so he can relate to someone else story,
It's a website with articles from husbands and partners of women with endo. Kinda talks their language. Written by men for men. He might identify with it.
Oh I am sorry, it can be hard to explain the pain you are going through.... We devised a pain scale and a nausea scale so I could explain where on the scale I was. I'm quite lucky(!?) because my hubby got with me when I was well and since being with him deteriorated healthwise. He has witnessed the change in me and often feels useless. He can't stop it as much as he wants to. I have a VERY understanding and tolerant husband... Don't get me wrong, this illness effects him too not to mention put strain on our relationship. He finds it all a bit too much sometimes and finds himself resenting me and hating himself for it. We talk about it and when i feel well enough i give him the best of me. It might mean that i'm ill for the next few days but that one day means so much to both of us. I know how it feels to feel sick, tired and in pain all day everyday but you'll be surprised how much it means to him for you to do the washing up or have a quick tidy up. You might even find that it doesn't make you feel worse than you already do. I found myself withdrawing from our relationship and my life but I was lucky enough to have a husband that would literally force me to get up, dressed and out the door sometimes... I needed that push. The key thing is communication, you have to keep the lines of communication open. If you don't talk to each other to find out how both of you are feeling you are going to find yourself in real trouble. I wish you the best of luck... Like I said throughout all of this crappy illness stuff our relationship blossomed and we're now married.
I have a large endometrioma, and have had a few episodes of severe, SEVERE pain, presumably from the cyst twisting on my ovary.
My husband recently came with me to a consultation, and the lovely young (male) doctor looked directly at my husband and said "It feels like having your testicle twisted - it's basically the same anatomy". Husband looked pretty shocked at that!
He has always been wonderfully supportive, but that really brought it home!
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