Please can you help?

Hi I'm 25 and just been diagnosed with severe endo after having a 15cm chocolate cyst out. I've suffered with lower back, hip and knee pain. The back pain is the worst reducing me to tears when walking or standing for more than 5 mins it feels like my bones are crushing. is this due to endo? And also I'm on tramadol and co codamol for the pain these aren't working is there anything else I could take to help.

7 Replies

  • I too suffer with the lower back pain, that sometimes goes deep into my hips and makes my legs ache. What is your pain like? Mine is a nagging, dragging, dull, heavy, ache, that I have always had with my period, but in October it didn't go away. I have had this pain every day now for 5 months. Like you I can't stand for long periods, pottering about for 10 -15 minutes puts me straight back into bed. I am on a cocktail of meds including Cocodamol, Buscopan, Voltarol, Tramadol, Gabapentin and Morphine, still the incessant pain persists. The best thing I have found by far is my trusty hot water bottle and heated cushion I can lay down with under my back. Have you tried this?

    I had a Lap where Endo was found on both ovaries, but "nothing to explain the back pain." My post op appointment is in a couple of weeks. In the meantime I have had a Lumbar Spine Xray (normal) and seen a Specialist Nurse at a back pain Clinic. She has said my pain is not from any issue with my back but linked to the Endo. Soooo, have to be ready to be firm when I go to my post op appointment in order to get this horrible, debilitating pain diagnosed. Have you ever been told the cause of your back pain and where was your Cyst?

    Wishing your pain away xxx

  • Thanks for answering. The pain is sharp crushing pain and is unbearable and slowly getting worse. I had a lap 2 weeks ago which found I had severe endo in both ovarys womb and diafram (sorry about the spelling) the cyst was on my left ovary and I had to have an emergency op. I'm going to the doctors in a few days to see if there's anything stronger I can be perscribed. I'm at the point where I'm desperate. X

  • Bless your heart xxx Did they say your back pain was related, or has it happened since?

    Yes, definitely see your Doctor, he can prescribe other meds for you but be aware they are stronger so may well make you drowsy etc. Even if I could drive, I wouldn't be able to because of all the side effects of meds. You must stress how bad this pain is and how it is affecting your daily life. Also, if not much joy there, you could ask to be referred to a pain clinic, who have more of an understanding of how each of these drugs work and will get you on a minimal amount but still have the pain under control. That's the help and support I am getting at the moment.

    You really have been through so much, please do take good care of yourself and rest as much as possible, your op was quite extensive and your body needs time to rest and heal. Sending you the strength to hang in there. xxx

    (You could also ask about Voltarol Suppositories, not a nice thing I know, but they have helped me, they are fast acting and in the right area xxx

  • Thank you I will take your advise and ask to go to pain clinic. Thanks again. Xxx

  • Call the gynae ward that did your op.

    Not your GP or the pain clinic just yet. You are still too soon after surgery and the gynae ward is responsible for investigating after your op if your recovery is not going as it should.

    Their phone number should be on the hospital discharge letter. They might ask you come back in and see them about this.

    2 weeks post op is still very early days after significant surgery. I am quite sure the ward staff would have said to you, if you have any problems give them a call. And this is a problem and this is something you should speak to them about as soon as you can.

    also don't forget you've had a melon removed from inside you, and that leaves a lot of room for your other organs to now flop about in, and until they settle down (which won't be for a few more weeks) it will feel like your insides are falling out every time you get up or stand up.

    In addition you have been poked and prodded and stabbed and everthing will be kicking up a fuss for a while.

    However it being 2 weeks, and so soon after the op, you cannot rule out having picked up an infection, or having some other reason from the op for your severe pain other than just healing.

    So the hosp will probably want to scan you to make sure there is nothing sinister apparant and test you for infections, and if all is well on that side of things then it is a matter of managing the post op pains and not over doing it for a a couple of months at least, giving your wounds time to heal properly, and your organs which had been pushed out of their normal place by the alien cyst, have settled back to where they feel comfy again.

  • Hi I had my lap nearly 2 weeks ago and the pains are worse now than after op, so I asked on here last night and it sounds like we need more time to heal inside than what we are told. The painkillers don't take my pain away but codine does reduce the tummy pain a little. My leg , hip and back pain is worse than before and painkillers don't help and someone sugested it could be from the nerves being irritated but if its got to much for you call the hospital. I'm going to try and rest at the weekend but if its not improving I will be calling hospital or off to doctors for some stronger pain relief soon. I hope it starts easing soon for you, and try and rest as much as possible. Heat is my only real relief either hot bath, hot waterbottle or the stick on heat pads which you can put on your back. X

  • It's so nice I'm not alone. I've got a dr appointment in an hour so will wait and see what he says. Hot water bottle has been a god send but I am literally bed bound because of my pelvis and back pain I only go out when I have to and when I do I usually end up in tears. I'm just so desperate. X

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