My miserable existence...: This is more of... - Endometriosis UK

Endometriosis UK
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My miserable existence...

This is more of a rant than a cry for help so please forgive me.

I have just about had my fill of this rubbish. I am in so much pain all the time. In fact I don't even remember my last pain free day. I have been given numerous pain killers but what with their side effects and the delightful endo I haven't been able to empty my bowels fully for over two weeks, in fact probably longer and when I do it is a pathetic amount and so painful it makes my eyes water and often tears a fissure and bleeds. I am drinking lactulose like its juice and taking senna daily, drinking well over 2 litres of water a day eating almost nothing but fruit and veg but still no relief. I have cut back on the painkillers in order to help move things along but as a result I am in more pain than is necessary.

Working is a daily struggle and when I do make it I am too tired to function most of the time. My employer is not the most understanding and I don't feel like I can talk to them about my health problems but I feel like I spend more time at the Drs surgery than I do at home which they do not appreciate. I have a hot water bottle permanently attached to either my back or my tummy which leads to most of my colleagues questioning me.

Every time I go to the Drs he looks at me as if I am some sort of medical enigma and I am sick of feeling so tired and pathetic all the time. I don't want to go out with friends due to pain. I suffer with depression and this is making it worse. I have an appointment at an endo clinic next month and I am pretty much relying entirely on this one Dr to finally put an end to this....well for the time being at least.

You all know how lonely this can make you feel and this forum is such a comfort when you spend your days surrounded by people (including medical professionals) who don't understand how life limiting it can feel.

Sorry ladies, thanks for reading, rant over.

16 Replies
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Hi Beth, I'm so sorry you are suffering. Just wanted to let you know you're not alone. Sending you gentle hugs. Stay strong Hun.

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Hi Beth, I know how you feel. It can get me so down and frustrated I feel like a child because I just end up crying all evening! I too have a hot water bottle attached to my back, and taking co-codamol because it's the only thing that takes away some of the pain, but then I can't go to the bathroom!!

Have you had a laparoscopy? I've had 2 in the past 2 years and they used a helica 'laser' (not sure if it's actually a laser). I get about a year pain free but I would happily have this procedure done every year if it meant I wouldn't be in this kind of pain!

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Hi,

Yes I had a lap 3 years ago and got put on cerrazette and I was lucky enough to get a good 2 years pain free. What really gets me is that I don't even bleed anymore, haven't done for years. But I agree I would take the surgery over all these drugs that really don't seem to do anything any day. In fact if I had the money I'd pay for it to be done!

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Have you had a diagnosis of endo?

Are you only seeing your GP or have you been referred to an endo specialist?

You don't need to suffer like this forever. Pain killers will not get to the root of the problem and as you already know, make matters worse.

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I just did a brief check of one of your previous posts and see that you have had surgery in the past. The important question is what type of specialist operated on you - a general gynaecologist or an endometriosis specialist? If your surgeon does not appear on this list bsge.org.uk/ec-BSGE-accredi... then go to your GP and demand referral to your chosen specialist on that list. Endo is a complex disease with a specialism all of its own and a general gynae does not have sufficient skills or experience to remove it.

Apart from the effect of painkillers on your bowels, it sounds to me as though you have bowel involvement and the only place that should be treated is at an accredited endo centre from that list. They will have colorectal surgeons as part of their team.

Please read Lindle's posts on rectovaginal endo and also how to find a specialist healthunlocked.com/lindle

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Thank you, Lindle was one of the first people to reply to me on here when I joined a few months back. She really knows her stuff so took her advise and asked for a referral straight away. I hope it marks the beginning of the end of all this rubbish!

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Hi,

I had a lap 3 years ago which is when I got the diagnosis. I was misinformed that by me going on the pill after my surgery would mean that I was unlikely to get it back, but I recognise these symptoms anywhere and apart from the lack of crippling periods, as I still don't bleed, it is exactly the same.

I requested a referral to an endo clinic and I am going there next month so we'll see I guess

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Ok, that's good news.

I had bad bowel issues prior to surgery and I found aloe vera juice very helpful. Best if you can get organic and from the inner leaf. I use the Pukka brand but there are others. A bit pricey but very good for the bowels among other things.

There are plenty of other things to try like chia seeds. You need to make sure you drink a lot of water when consuming these. Plenty of ideas in the internet. Here's one example purehealingfoods.com/chiaHo... I suggest the Chia gel. There are also recipes online for Chia pudding.

Google 'constipation natural remedies'

Ultimately, the origin of your bowel issues is gynaecological compounded by the painkillers.

Some websites that have plenty of valuable information on diet and lifestyle for endo:

peacewithendo.com

endoempowered.com

Good luck. x

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I think we all totally feel your frustration! You are certainly not imagining or over exaggerating your condition people are generally ignorant about endo and how much it affects women. Don't give up with doc until you get help! You should have to suffer every day. Good luck! ❤️

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Hi Beth,

I really feel for you, I joined here last week and I'm amazed at the enormity of the effects of endo! So many sufferers! I just wanted to suggest when you get moving again to try milled flax seed mixed with your daily diet, I had struggled with bouts of constipation and now have 2 desert spoons a day and it really helps, you do need to drink pleanty of water but It helps me a lot and touch wood I haven't really suffered since, it's completely natural I get mine from morrisons as it's cheaper there but Holland and Barrett do it too I would think most health shops would supply it? it looks a bit like brown readybrek, I spoon it over weetabix put it in yoghurt add it to stews etc

I hope you get sorted soon,

Kind regards Fay.

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Thank you, that is something I haven't tried yet. Will give it a go.

This forum is amazing, such a great support system and you have plenty of people to help advise and share experiences with.

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It is Beth! Hope it works for you as it has me! 😊 On top of all the horrible pain from endo constipation is an added suffering you don't need! Good luck 👍

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Reading your post is almost like I wrote it myself, sorry you going through this and not having support from work and doctor by sounds of it. I take movical sachets daily and on Saturday I was told to take 6 in a litre of water over a 6 hour period to completely empty my bowels as I like you ain't been in over two weeks. I drank the sachets and spent the whole evening running back and for to toilet to which I then started to bleed there was not as near as much poo as I thought there would be and again ain't been since. When I walk I constantly feel like there is poo waiting to come out though nothing happens when to gp again yesterday for anal check as she thought I may need suppository she said there was no poo there so has told me to continue taking movical daily and she has also prescribed tablet form laxatives which I've to take two before bed every night if no improvement within a week I've to go back is so hard and mentally draining. Good luck and don't suffer alone Hun we all here to listen and help you xxxxx

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I hate the narrow minded people who don't understand or even try to understand!!

I feel so sorry for you, I hope you get this sorted as it isn't right you're in pain every single day.

Also, I recommend maybe trying to eat prunes? And perhaps drink lots and lots of orange juice.

The good old painkillers make constipation worse, which makes your pain a lot worse than it is (if I manage to go, I feel abit relieved).

Don't take any painkillers that are codiene based. I found this on the Internet, it can in fact aggravate endo. (After a doctor prescribed them to me).

I hope you feel better soon and maybe I think if your employees and co workers keep this up, you take it further as it is in a way discrimination (this makes me so angry, I know how you are feeling here). I hope you get some help and start to feel better soon xx

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Sorry Lwilliams20 I thought I was replying to you but obviously not! I have stopped taking the co-codamol last week due to being so blocked up but it doesn't seem to have helped me much as it's still terrible. Interesting to hear it can aggravate endo more though. Definitely something to bear in mind.

It has got to the point where I am frightened to take days off sick as I know they don't approve. That's the trouble with having a condition that isn't visible I suppose.

Thanks for the advice and support though

xx

I have tried Prune Juice but I just couldn't drink it...really not for me but I know I like Orange juice so will throw that in the mix too.

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I couldn't empathise more with your symptoms! Its just horrific isn't it? I have literally just got back from the Dr who has prescribed me Laxido which I seem to remember having last time and it was disgusting. But if it works it will be worth it.

Good luck to you too and be safe in the knowledge that I am sharing your pain and am always here for support too xxxx

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