Endo pain : Hi does anyone else’s endo pain... - Endometriosis UK

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Endo pain

gemm_19 profile image

Hi does anyone else’s endo pain affect them constantly? I have constant lower abdo pain and I’m really struggling with it.

It feels like horrendous period pain but every day of the month and it feels like my insides are pulling down.

I’m really concerned as I have this pain every day and it seems to be getting worse. It’s so unbearable and nothing helps.

39 Replies

Hi.

Yes unfortunately this is me too. It made me quite confused because when I used to read up on endo, it only mentioned pain around the time of your period but I was in pain all the time.

It’s the horrible period pain feeling but allll the time. When I first used to get these pains, I used to take countless trips to the toilet because I had to keep checking if I’d started my period.

gemm_19 profile image
gemm_19 in reply to Hayayaya

Hi, thanks for your reply! Me too when I’ve researched or read other peoples stories it all seems to say pain around their period and I was so worried why I’m in pain all of the time. It’s reassuring to know that you’ve had a similar experience. I never know when my period is starting as I feel like I always have period pain. It’s so excruciating and affecting my daily life now. Nothing seems to help

Hayayaya profile image
Hayayaya in reply to gemm_19

In the same boat as you!

Hope you find your relief soon!

gemm_19 profile image
gemm_19 in reply to Hayayaya

Thank you, you too!!

Yep - me too! All the time!

I have the coil and don't have periods - the pain is the same as when I did have periods, but at least I don't bleed anymore!

Jobe2405 profile image
Jobe2405 in reply to EndoSuckss

Hi I was worried I was the only one. I have a coil, have no bleeding, but have pain. It also hurts when I go to the toilet. I was diagnosed around 4 years ago and they convinced me to have the coil fitted. I then went back end of 2019 as having pain when urinating and the consultant questioned my diagnosis, then covid hit and was referred back to my GP. Trying to get to see my GP now is almost impossible.

gemm_19 profile image
gemm_19 in reply to Jobe2405

Hi I also have pain going to the toilet. I get extremely bad pain after a bowel movement and more recently after urinating and when my bladder is full. I’ve read these are symptoms of endo. Hope you get some answers soon x

Jobe2405 profile image
Jobe2405 in reply to gemm_19

I hope you do to. I’ve been on this group a while and this was the first time I had written or responded to anything. Kinda glad I did 🙂x

Hi, my daughter has the same thing as she can’t go to college or work. Gynocologist can’t find anything but they think it is endometriosis. She has to take tramodol for pain but is still in so much pain. I hope you find an answer. I wish you all the luck in the world

gemm_19 profile image
gemm_19 in reply to Angellouise

Hi sorry to hear your daughter is going through this. I’ve had a transvaginal USS and they didn’t see anything on my womb or ovaries however I’ve had a laparoscopy and they told me it’s on my kidneys and bowel. Maybe something similar with your daughter? Thank you and hope you both get answers soon too x

Angellouise profile image
Angellouise in reply to gemm_19

Thank you so much. Good luck to you

Hi gemm! Yep I have daily symptoms, they used to just be cyclical but in the last 2 years (came off contraception) the symptoms have spread into daily pain. Its obviously way worse when I'm actually on a period or ovulating, but yeah definitely daily pain. So you're absolutely not alone in this babe! Try not to be too freaked out, I know that's easier said than done. We all experience pain so differently, and some of us have one symptom but not another, it really is a very strange condition!

Have you tried any heat relief? I use a heated pad, hot water bottle and then painkillers to manage. But heat is my life saver! I genuinely wouldn't cope without it. It doesn't take the pain away but makes it more manageable for me, like taking the edge off. I've also used a TENS machine but not everyone finds them useful. Probiotics are good for cramping and bloating, cut down caffeine and red meat etc. It's kind of a combination of lots of things that help me most, diet, exercise, pain relief, mindfulness, rest. The last two are most important for me, lots of self care can go a long way, it's amazing how much easier it is to cope with pain when you're mentally feeling stronger. So my top tip is to definitely manage your self care and ensure you're resting plenty :) don't push yourself past breaking! Xxx

gemm_19 profile image
gemm_19 in reply to CryBaby91

Thank you so much! Yeah I find heat is the only thing that gives me some relief. My hot water bottle is my best friend haha. I’ve tried all sorts of painkillers. I’ve just started drinking ginger and peppermint tea as that’s supposed to help with inflammation. Ive also heard turmeric and magnesium helps. I’ve just bought a TENS machine from a company called ovira. It’s specifically for endometriosis and menstrual pain so I’m excited to try that. Stress definitely doesn’t help so I will try mindfulness out too! Thank you x

CryBaby91 profile image
CryBaby91 in reply to gemm_19

Oh I wish I had known before hand, I was speaking to a lady about the Ovira a couple of months ago and it turned out to be just an expensive TENS and not worth the extra money :( but we did both agree that it was worth trying because you never know. If it doesn't help I would recommend getting a cheaper TENS off Amazon or something, I got mine for £20 and its fab. I can use it in 4 places not just 1 because I have large electrodes :) so if it helps but you want something that covers more area then defo look at that :)

If hot water bottles are your friend and can't recommend the plug in heated pad enough! I was so tired of having to make hot water bottles every few hours, it was exhausting lol I can plug this bad boy in and just lay down on it :D it's wonderful! Can set a timer so no worries of it being left on too long, can wash it in the washer, set the temperature etc. It's really good and was only £20 :)

Ooooh on the supplements and tea, probiotics are honestly a life saver for the endo belly! And chamomile is wonderful too if you want something for sleep :) defo agree with peppermint and the ginger, heard magnesium helps so yep definitely recommend that. Basically get hold of what you can and give it a bash haha :) xxx

Have you considered antidepressants? This can break the low mood pain cycle.

Also go google This Endo Life. Lots of free resources including managing pain naturally. Possibly used to complement meds.

I can use meditation, mindfulness, breath work, cold showers, yoga, distraction, flooding with nutrient dense foods according to my cycle. Walking in the woods. Cuddling my dog 🐶

gemm_19 profile image
gemm_19 in reply to 635703

Hi, thank you for these suggestions!

635703 profile image
635703 in reply to gemm_19

I hope you find out what works for your symptoms at a pace that is manageable 💗

Hi it’s horrible to be in pain every day I have experienced this too but I think I was more mild than your experience.still it really takes a toll on your mental health I found. I eventually saw an endometriosis specialist and he said he thought it was also Adenomyosis contributing to my daily pain which included an inflamed cervix.

I think the experience has really made me realise that endometriosis is a full body disease.

I found that reading some great books like “period power” “fix your period” and “woman code” all helped me look after my body and bring down my daily inflammation. Then following surgery with the specialist I would say my pain came down to only 10 days a month compared to the 25 days a month pain previously.

I wish you all the best and I hope you find what works for you xx

Hi thank you for your reply. I’m glad your pain is better now. I’ll give the books a go! X

HiI’ve had this for the last couple of years. At the moment I don’t know if it’s Endo, lots of Endo excised at hysterectomy last year, but no colorectal involvement when there should have been. So now on list to be reviewed at a different hospital MDT.

It’s very difficult to manage at times. What pain relief are you on? Have you seen Gynae? Your GP can refer you to the pain clinic.

I’ve been taping my abdomen and I think it helps a little. On various painkillers, plus heat at times. I’ve been told it’s nerve pain.

gemm_19 profile image
gemm_19 in reply to Moon_maiden

Hi, I’m the same I’m struggling to accept this could be endo. All ultrasounds have been clear however my laparoscopy showed pelvic adhesions and endo on my kidneys and bowel. I don’t understand how I’m still in so much pain after my laparoscopy and how the small about of endo can cause this much pain. For pain relief I’m taking paracetamol, ibuprofen, cocodamol and using heat patches/ hot water bottle. I find heat is the best thing to relieve the pain. Hope you get answers soon!

Moon_maiden profile image
Moon_maiden in reply to gemm_19

I think mine is still Endo but until they take a look they won’t know.The amount doesn’t relate to pain going by what I’ve read, but I doubt anyone would ever know.

At your laparoscopy did they remove the Endo from pelvis, kidney and bowel? Some it’s a look see first. You have quite a bit by the sounds of it.

There was supposed to be a colorectal surgeon when I had hysterectomy but there wasn’t, there was a complete lack of any mention of bowel or bladder on the op report, but extensive everywhere else 🤦‍♀️

I’ve reported gynae to GMC and hospital to health ombudsman. Neither I did lightly.

I keep being told nerve damage and that the body retains pain. I’m on Amitriptyline, pregabalin, butec patches instead of oxycodone and Oramorph as back up. Just tried taking stuff to tip, only to find it shut, so pain and petrol in vain, I hate this, can’t face it again so will look to pay someone to get rid.

The Amitriptyline and pregabalin is for nerve pain. None of it really does much

gemm_19 profile image
gemm_19 in reply to Moon_maiden

They removed most of the adhesions in my pelvis but the left the endo on my kidneys and bowel as it was too dangerous to remove. Can you request scans or anything to see what’s going on? Try heat for the pain that definitely helps for me. I hope you get answers soon

Moon_maiden profile image
Moon_maiden in reply to gemm_19

I think it’ll depend on the experience of gynae/team. Did you have full MDT for op? MRI is best but it’s notoriously difficult to see, it’s why NICE say don’t go by scans for diagnosis.

If you didn’t have a specialist team for your op ask GP to refer you. The current specialist centres are BSGE registered. I thought I was home and dry, but they didn’t do what they should for me so I would go for experience above this now. I have 😂, I went straight to colorectal surgeon on the Endo team, paid to see him, but he said full MDT might be better.

I have a rechargeable hot water bottle, means I don’t have to go downstairs during the night, highly recommended them. Are heavier than normal or wheat bag, but great if side sleeping.

Moon_maiden have you tried the heated pads too? I lay down on mine and it's fab for the lower back pain :) will be hopping on Amazon now to find a plug in hot water bottle! Xxx

I’ve seen them, but not tried one. I’ve used wheat bags and looked at USB recharging ones. I’ve found the hot water bottle really holds the heat well. So many different things to try 😂

Oh my gosh me too!

The Pain is awful! I have started taking Gabapentin which I think might be helping!

It's comforting knowing others feel the same, I had a TSS and they said it all looked normal, and that the pain is with bleeding (I know this can't be right because too many women here have the pain all the time) I wish doctors were more clued up on endo to help soothe the anxiety surrounding it! Xx

Me too I have such bad anxiety around it and it’s because I’ve not had any clear answers. I feel a bit more reassured now knowing others have constant pain too. Although it’s not good that we should have to go through this! Xx

Definitely feels like being handed the short straw doesn't it, there seems to be some developments in research which is comforting, you would just this something as common would have more research!

Hey

Yes i am the same ive recently started getting pain both side where as it was always containted to my left side

I foned my GP yest who said they would update hosp

Goodluck and know we’re all in same boat and glad we can communicate

gemm_19 profile image
gemm_19 in reply to Lady1978

Hi, it’s horrible isn’t it. My pain is all across my lower abdomen. It’s constant but worse after bowel movements etc. My flare ups are happening more frequently. I hope you get your hospital appointment soon! And I agree it’s so nice to speak to others who are in the same boat x

Lady1978 profile image
Lady1978 in reply to gemm_19

I feel ive got some form of pressure across my pelvis atm

Im not sure whats worse the pain or uncomfortableness

Thank you and you too

This forum has been so helpful as its all new to me (not the pain unfortunately)

I can relate to this. I feel this pain constantly every single day. Is like a pressure in my lower groin area and lower back is always in pain. I started using heat pads to help as I am in pain everyday. Got so bad I had to ask for emergency appointment with my GP today. He explained this is all part of my endometriosis which up until today had not been explained to me by any GP. He has now prescribed me co- dydramol as I was only taking paracetamol and ibuprofen. Seeing this post really helped me as I was getting so worried about being in pain like this everyday. Now that they’ve explained to me all this pain is part of this diagnosis and I’m seeing other people with similar symptoms , I’m not as worried as I was before and don’t feel as alone as I did. But yes, I definitely relate to what you described above too.

gemm_19 profile image
gemm_19 in reply to Mami06

Hi I’m glad my post has helped you! I know how worrying it is being in constant pain and it makes you question what’s going on! The pain is so bad I had convinced myself that it must be more than just endo. I’m also glad to know that others have the same experience and it’s not just me. I hope you get some relief soon x

Mami06 profile image
Mami06 in reply to gemm_19

Thank you , you too x

If you look up NHS top twenty most painful conditions Endo is on it. It was a couple of months back, unlikely to have changed so soon. It’s something to explain to others who may not understand

Hi yes I totally get you as I have daily pain. Diagnosed with endo and adeno 4 years ago, doctor tells me the pain is from the endo which is labour like and the bleeding is the adeno. The only relief I have had is the last 6 months of being on decepeptyl injections, monthly ones which has helped with the pain and bleeding but given me other symptoms like a very dark mood as I call it & my whole body is puffy and bloated so not taking the injections again. Prior to this I was on tramadol, which is so strong and makes you feel nauseous and a bit drunk like but it helps the pain.

I also have the Lloyds tens machine which is £21.99 and has 4 pads, hot water bottle, nortryptaline for pain for gynaecology problems and fibromyalgia.

Do you live with other conditions too?

It’s so hard and sending you a hug 💗

I hope you have a good GP too as that seems to be had the battle x

Hi, thanks for your message. It’s really reassuring to know that other people have the same symptoms. Before this post I hadn’t seen many women saying they have daily pain which was worrying. I was prescribed cocodamol but they gave me that sick/ drunk feeling so I’ve now been given tramadol, although the gp said that will probably give the same side affects.

I don’t have other conditions but I did have pelvic adhesions on my laparoscopy so I think that is also contributing to the pain. They removed 80% of them but I think they’ve probably came back as the daily pain is excruciating.

Thanks for your suggestions with the pain. I’m waiting on my tens machine arriving and I can’t wait! Xx

Good luck with your tens machine 🥰 hope it gives you some relief x

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