Endometriosis UK
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Endo pain makes me want to die

I am 35 and suspected endo. I saw a consultant in dec who put me on progesterone tablets and sent me on my way until march. After demanding to see a different consultant because I couldnt take the pain I have a laparoscopy scheduled on 19th march. I am taking codeine and paracetamol as well as ibuprofen but when I get an attack, like now, I just lay on the sofa screaming in pain. There is nothing, NOTHING that helps. I have tried a hot water bottle, sitting, lying down, having an orgasm, laying in the bath. I have not eaten red meat, eggs, dairy, caffeine, gluten or wheat since 1st January which has been tough but even that doesn't help. Can anyone suggest something that will get me through to my op? I am at the end of my tether.

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Awwww lovely. I'm so sorry you feel this way big hugs.

I changed my diet too hun and that helped me loads I think the key is to do a cleanse first before you change your diet as them nasties will still be in your body and the fact that you've ate like that hun for a long time really since Jan the 1St isn't that much of a long time it has to become part if your life lovely,

I think going to your Dr or AnE to help with the pain as they'll be able to give you something stronger although tbh it doesn't really help. The only other thing are you attacks mid cycle on your period or just random try and work out if it's after you've done something or are/drank something.

Up your magnesium that may help and look into serrapeptase that helps some rid of endo cysts and adhesions helps with inflammation also, try to look into meditation and stress relief as stress certainly causes pain too.

Also maybe talk to someone hun your post headline is really concerning hun you could ring endo uk or the Samaratans if you feeling in anyway helpless my inbox is always open too lovely.

Big hugs hope you get some relief soon

💗💗🤗😘😘

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Thanks for your reply. I don't have a cycle. I need everyday. There is no rhyme or reason to the pain at all. I'm on slimming world so tracking my food and drink well and that doesn't seem to be making a difference either. I'll give detoxing a try but the pain really is killing me at the moment.

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If it's too much hun. Go to A n E they'll help give something stronger. I know how you feel hun iv been there when all I would do is curl up in a ball and cry. Xxx

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I was Slimmingworld for a whole year hoping and praying this would help. I lost 4 stone. And I’m sorry to say it didn’t help me at all in regards to flares or easing the pain. Like you there is no rhyme or reason to my pain/flairs and crazy symptoms. And again like you I was put on pop pill and sent on my way. Iv had 4 laps in 2 years and it was only the last lap after begging for it they finally found endo, this point it was on my bowel bladder and pod. I was sent away with the advice of change your diet and have the coil. Iv already had the coil, horrible just horrible. I sit at home most days trying to find the will to get through the next couple of hours, let a lone years. If it wasn’t for my daughter I don’t hesitate to question if I would be here. But we are the woman at the beginning of the publicity of this horrible disease finally being spoken about, by struggling through and making ourselves heard we are paving the way for many others after us, who won’t have to suffer as much or for as long un heard of. I’m here for you. I mean it. Message me. Xx

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I am so sorry you are in so much pain. I know it really sucks. Have you tried a tens machine? There are a couple that are made for specific conditions like endometriosis but until you get a diagnosis maybe try a cheaper version to see if it helps? Also for me mefenamic acid works a bit better than ibuprofen so maybe ask your doctor abt it if you haven’t tried it? For some people things like Yoga and meditation also helps, there are loads of free resources on the internet if you are interested. Also, one thing I have also seen is that you need to take the medicines before the pain starts, once it starts the medicines don’t do much. I always try to take my pain medications in advance on the days I know I am likely to have pain. I really really hope something works out for you to take the edge of pain until your lap. Don’t be afraid to ask your doctor for alternate or stronger medicines if you are really in agony. Nobody deserves to be in so much pain. Just hang in there and March 19th will be here before you know it. I will keep all my fingers crossed for you.

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If this disease has taught me anything it’s that you’ve got to be a bit obstinant to get anywhere. I remember quite clearly once laying on my bed sweating in the foetal position in too much pain to even scream but my other half describes how I was doing a kind of silent scream so I know that feeling and the despair that comes with it only too well and you have all my sympathy. It’s great that you asked for a second opinion and have a lap booked. That’s a big part of the battle. Have you considered the mirena coil post-lap? I was too afraid to have the coil after reading the horror stories but it honestly gave me my life back and has really cut down my pain.

I think you need to get back to your GP and demand, in the nicest possible way, something stronger to help you with these attacks. Because it sounds like to me you’re doing all the right things (diet etc). Tens machine *is* worth a try as I think it can work great for some and it really helps my back pains I get from endo on the bowel but it does nothing for my actual stomach pain. I’m sorry you’re suffering so much :( and I really hope you get some relief soon xxxx

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Try Belladona for your tum from health food shop. With TENs try putting electrodes on your sides if you haven't before at the widest point. Fennel Tea, Chew Cardamom seeds.

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I feel your pain.. literally!

I've not been formally diagnosed with endometriosis either and there's a long wait for a gyneacholigist.

My pain became so bad, that I actually called an ambulance! When I eventually saw a doctor there, she gave me a Diclofenac suppository and the pain just melted away. At the time, renal stones were suspected as the pain is in my right flank, lower abdo and lower back. It feels like I've had a kidney operation, it's that bad.

Now, the GP suspects endometriosis.

I've been off work since January. I'm a nurse and I just can't afford to stay off any longer. So I've had to try every painkiller possible.

I'm currently taking; Naproxen and Pregablin (for the referred back pain) and strong co-codamol at night.

I've even had Tramadol when it's really bad. Also taking Turmeric and Black Pepper supplements as it's a natural anti-inflammatory.

And (touch wood), seems to be bearable.

It sounds to me, like your pain hasn't been taken seriously enough. If your GP won't consider further analgesia, then change GP.

You're not alone.. so many of us on here going through the same. This whole ordeal for me, has pushed me into depression.

I really hope you feel better soon.

Let us know how you get on.

Much love. X

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Also waiting to see a gynaecologist without a confirmation of a diagnosis - I can’t take NSAIDs as they make me throw up but I take Amitriptyline, Provera, Tranexamic Acid and have codeine/co-codamol for when the pain is unbearable. I use a TENs machine to get through the day - sometimes you have to be pushy to get pain relief but am lucky my GP is supportive. One time I had to be literally sobbing in front of the nurse practitioner before she’d prescribe anything but also said I’d just have to ‘deal with it’.

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Lots of good pain medication suggestions here. I haven't yet tried diclofenac suppositories but they have been recommended by 2 friends who felt they worked so much better than oral nsaids. What dose of codeine have they given you? Tramadol helps me a bit on top of 30mg codeine and Nurofen Plus Sodium when I'm at my worst plus hot water bottle. Do go back to the Drs asap and show them the painkiller suggestions everyone is sending. If you're on progesterone pill and bleeding constantly I would request declofenac suppositories or take naroxen or nurofen plus sodium (kicks in quicker) consistently along with a stomach lining protector from your GP. They are all anti-inflammatories and work best if you start taking them 4 days or so before the worst pain (I'm on progesterone pill right now so pain is unpredictable like yours. When my pain was horrific just during my period I would start taking them 4 days before it hit). Good luck. Keep in touch with others on here and if unsurprisingly the unbearable pain is making you very depressed do phone endo UK helpline. It can make you feel more in control speaking to others who understand xx

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I don't have anything extra to add with regards to the pain, everyone above has really good suggestions; all I've been told is to pre-dose your pain killers, so take them for 24 hours before you know the pain is coming - if you know your cycle, sometimes it's difficult I know. The pre-dosing works better at relieving pain than waiting until it hurts.

With regards to the lap, as you have suspected endo will it be an investigative lap only? If so this won't offer any pain relief afterwards as they won't remove anything. If your specialist can, I'd ask for remove of any endo they find (if any) and anything else that can be removes (cysts) plus biopsies of any other irregularities. They won't often suggest it, as it'll need additional consent. If you say you consent now and would like it all to be added to your operation then at your pre-op you'll be able to sign (they'll confirm again before the op). Hopefully it's something your specialist will be fine with. Recovery may be a bit longer than just an investigative lap. If this is what you're having, then I hope it all goes well xx

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Im 45 and i had endo for years. Ive had 2 laparoscopies. The coil is a gamechanger for endo. I didnt want one after my operation and it flared up again after a few months. I didn't make the same mistake after the second operation. I know diet can help it but it sounds like you have a lot of pain. You need it removed x i know your pain x

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I have the mirena coil in. My body hated it for about 6 weeks. My last consultant told me I had to stop taking mefanamic acid because I coudlnt take it long term. I hadn't realised how much difference it was making. I will see what happens after the lap. Also I can't take pain killers prior to an attack because I get no warning. I have no cycle, I just bleed everyday 🙈 I feel like a baby always having sanitary towels on, which I also don't think is healthy. The area never gets to breathe. Hey ho, 3 weeks to go.

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