Pain constantly: Hi im new to this site... - Endometriosis UK

Endometriosis UK

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Pain constantly

Loveyourself88
Loveyourself88

Hi im new to this site/group. I read up online about how the pain comes with periods.... i feel like im always in pain. I probably get about 4 days a month pain free. I feel so low most of the time. I have had endo for years bit was only diagnosed with laposcopy 3 years ago and had excision done but it did not seem to help. I also had lupron injections last year. I feel as though the pain is just getting worse, no pain killers help and some days i pretty much feel like giving up. Its such a drain being constantly in pain and feeling like no one understands. Sorry for the rant so hard when you have no one to talk to x

13 Replies

I'm going through severe pain and nothing helps and it's every day and not just when I'm on my period. I feel your frustration. I'm new on this site as well.

Continue to stay strong.

Hi thank you for replying. Its so tireing isnt it. Im always here if u need a chat x

Hey I can relate to you so much I feel the same right now. I’ve had surgery in feb to remove endo but was ablated not excised and it hasn’t relieved my symptoms. I haven’t had a pain free day in over a year and a half and I seem to only be getting worse. It’s horrible but also good to know we are not alone in how we feel and it’s good to be able to talk to people who understand.

Sorry that I can’t give you any good advice but please free to message me if you want to talk or anything. Hope you start to feel better soon xx

Thank you for replying. Its frustrating isnt it when u have surgery in hope that u may get some kind of relief and it dosnt help. Im 30 and alrdady had this for a good 10 years now and the thought of having to live like this forever absolutely deflates me. Im lucky enough to have 2 children that keep me strong and going forward or else i honestly don't think i would get out of bed. Im always here if you need a chat too! Although it kind of sounds selfish sometimea its nice to hear you are not the only one and can make u feel abit better x

Hi

Sorry to hear you’re feeling like this, unfortunately I don’t have any answers but just wanted to let you know that I’m in a very similar situation which may be a comfort to know you’re not alone in feeling like this. I was diagnosed with endo 4 years ago and was it under control until 12 months ago. The last 6 months have been constant and increasing pain- literally every day is a struggle. I now don’t just feel in pain, I also feel ill and completely run down. I’m waiting to go back to see my consultant to start Zolodex injections, so I’m hoping that will help. I’ve been taking CBD oil for the last few weeks and it seems to have helped with the pain (and the anxiety about being in pain!) I’ve also ordered magnesium bath salts and spray in hope that it will offer relief in some way. It’s too easy to underestimate the impact of endo on women’s lives. You must be a very strong person to have already endured what you have, so please stay strong and know that you’re not alone xx

Loveyourself88
Loveyourself88 in reply to HH87

Thank you for replying. I completely hear what your saying. Its mentally and physically draining. I 100% get what your saying about feeling ill! I feel the same. Do you feel sick often? I dont usually stay up this late but past few nights the pain in my hips and legs is almost unbearable.. do you get this?

I have had zodlex. Ionly had 2 injections though as my experience was not pleasant unfortunately. Im always here if you need to chat x

HH87
HH87 in reply to Loveyourself88

Thank you for replying. This was my first post on here so it’s lovely to hear back.

It’s funny that you say that as I’m not usually up this late either but my hips and legs are driving me crazy. I feel like my pelvis is about to snap. I’ve just had the hottest bath I could tolerate to try and helps. Does it ever get to the point where it’s very uncomfortable to even walk?

I’m suffering with terrible sickness at the moment too, I don’t know if it’s the pain, medication or something else.

I’m nervous about starting the Zolodex as the list of side effects I was given in the leaflet was huge, but I’m willing to give anything a try at this point.

I hope you’re feeling better soon.

It’s hard to explain all of this to people that don’t quite fully understand so it’s just a weight lifted to speak to someone who knows exactly what you mean xx

Loveyourself88
Loveyourself88 in reply to HH87

Omg yes some days i find myself walking funny because of the pain. I wouldnt worry about the zodelex i have heard bad storys but great storys too. Hopefully we will have a better sleep tonight xxxx

Gentle hugs. Unfortunately endo, in fact any chronic pain condition, can trigger the central nervous system to become over sensitizised to pain. Also surgery can cause nerve pain itself and so can resulting surgical adhesions so isn't always the silver bullet its made out to be.

Don't give up, you can get help. Xxxx

Its well worth asking to be referred to a pain specialist or pain clinic if there is one most nhs trusts have them. There are specialist non opioid medications you can try.

Also there is a lot you can do yourself to self manage pain using tips and resources like retrainpain.org and paintoolkit.org and the book by neville shone "coping successfully with pain" .

Good luck and take care xx

Sorry to hear you're suffering a lot with pain and discomfort. It's not something I suffer with a lot, though last day or so I've had sharp stabbing pain on my left ovary, but I know there's cysts there so at least I know what's causing it, and it's not constant, debilitating pain like many get. I'm just grateful I have a coil and high pain threshold (though both are a bit of a double edged sword sometimes)!

If you haven't already thought about it, it might be worth trying some dietary changes? There's are a lot of foods that cause/exacerbate inflammation and therefore pain. I'm almost entirely wheat/gluten free as it makes me bloat when I have too much, also don't have too much dairy (except cheese, love it too much), I stick to decaff coffee and herbal/fruit tea, don't really drink much alcohol either, and too much refined sugar isn't great either.

Hope you feel better soon. Love, light and massive hugs xxx

I remember someone asked me if I ever had days where I had no pain, and I said no. It was a sad realisation. I found exercise to really help me, believe me I didn’t want to do any at first but now I find it gives me more good days than bad. Don’t get me wrong there are still many days I can’t manage anything at all, and it’s the last thing I want to do but it does help when I can manage it. Hope you feel better soon xx

My pain never really went away.....just worse mid month and end of cycle. I had a lap done three months ago and a Mirena IUD placed about 6 weeks ago. The IUD seems to have helped with the pain.

Hiya,

Completely understand it is terrible. I've had a really bad month, often feeling like I'm constantly in pain.

Although I had hoped to conceive, I have been back to the GP and I am now back on the contraceptive pill to combat the hormones. I'm taking painkillers. Trying to eat a bit healthier too. Keep going back to your GP. Hope it gets better for you. X

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