How to cope with endo pain??

Girls I can not cope any longer with this agonizing pain!! Its ruining my life, im only 27 and had had it since i was 18. I dont no what to to!! I went to my Gp, she said u have a condition, deal with it. Ive collapsed twice in the same week due to the pain, Got taken to hospital by ambulance twice. Gas and air and morphine didnt take the pain away. When i got to the hospital its the same story from the docs, its ur endo, here is some painkillers go home and take them. Only last time I fought to be seen by a gyne team. I had a burst cyst which was causing major pain. I feel now i have no one to turn to, not even my gp. They think its all in my head, but i know its not. Why are they treating us like this?

10 Replies

  • You poor thing, it's a horrid thing to put up with, are you under a endo specialist, if not I woukd go to your Gp and demand to be referred to a specialist, have you had endo removed in the past?

    There might be something else a specialist can do for you, don't give up, we shouldn't have to live with daily pain, and pain killers, have you tried the coil, or other treatments?

    Don't give up and if you get nowhere with Gp I would get a newgp until you get a more responsible one that will send you to the right people,

    Good luck xxx

  • Yes Tboag I am under a specialist,going to see him in a few weeks for another op. Im just so, so frustrated that doctors dont take this seriously!! its like a joke to them!! Im just tired of fighting all the time, i would love to have a day when i wake up and have NO pain,

  • I think you should change gp ! That's just not fair, and as crazy as it sounds try sparkling water really helps with cramps unusual I know but it honestly helped me a lot when tablets wouldn't take the edge off good luck with everything and I hope you get some help soon xx

  • You poor thing that's just awful. I had a burst cyst a few years ago and it's agonising. I was treated appallingly by doctors and told it was indigestion or period pains! Absolutely change gp and before you sign up with the new one, check if any of them specialise in gynae. Stay strong and I wish you lots of luck. xx

  • I just don't understand all the GP's saying it's just something you have to live with. It's not, it's so painful and so crippling. I'm sure if it were a male problem they would have invented a magic pill by now that cures all. But I think you should switch surgeries, that's what I'm in the process of doing now. You need a sympathetic doctor who wont just send you home with pills. I wasn't diagnosed for quite some time because they thought I had UTI's so they just kept giving me anti-biotics, it wasn't til they had to put me on codeine full time that they did anything. Keep pestering, keep ringing, if you become enough of a pain to them they have to do something. I know it sucks but you have to keep going, keep pushing for options. We have to help ourselves with Endo I'm afraid. I hope you get what you need soon. xxx

  • Def change doctors! I changed doctors and my current doctor is brilliant. I know it's hard to keep fighting them all the time (I wasn't believed for 13 years) and when they say it's in your head it's absolutely gutting as we know it's not. Why would we make up the pain- I just don't get it. I am now seeking alternative therapy to see if that helps (willing to try anything) I was recommended reflexology (by a friend who's having it who's not a doctor but she's seeing results) so I am giving it a go. Hope the specialist appointment goes well xx

  • What area do you live in? X

  • I am really new to this, I found out about my endo less than a year ago.

    Initially they thought it was a hernia in my belly button, until I consulted the hernia specialist and he was almost certain that it was not a hernia. He made an appointment for me to see radiation, which during my ultrasound they explained I had a "non reducible" mass is my belly... I was so scared hearing them talk amongst them selfs, I thought tumor, cancer...then finally they brought in a woman with a little more knowledge. She then told me I have endometriosis, and that meant nothing to me, I never heard of that before... So then she explained the best she could. I was still unsure of what I had. So needles to say, I educated myself via google (thank God for google)!!

    After all that, I had a followup visit with the hernia specialist again...

    Where I told him, he was right about it not being a hernia, I told him my diagnosis and he tried his best to give me better information on my condition. His plan is to still do the surgery on me as his area of expertise is the umbilicus, he also said it's a very rare thing to have endo in your bellybutton, so if he had to guess, he would think that I also have it in my pelvis... In which case it's hard to determine that without a minor surgery. He proposed that he proceeds with the surgery on my umbilicus and bring in a specialized a surgical Gynecologist, and they will asses the area and if they find endo there as well he will be the man to remove that.

    I was all for it...

    At this point my belly button was black!! hardened and somewhat bulbous. Not only did it look bad aesthetically, but it just felt horrible... It was painful! Laying in bed was a challenge! So I wanted this surgery!!

    Needles to say I still haven't gotten the surgery, as a few problems arose with my insurance and other things... But I am wondering what should be my next move!! I am so frustrated! And also very new at this, so I haven't tried anything... So jumping into surgery might be a little premature, yet it looks like the only viable option right now.

    My belly button is still black, the creases have gotten deeper, it has gotten harder, more bulbous... I've also started to get blood bubble on it during my cycle, in which case the cause a lot of pain, they burst and I bleed from my belly button! Is not only painful, disconcerting and debilitating!! Its embarrassing as I do have a BF!! thankfully he has be great and is not grossed out by it! But still!

    I wish I could attach a photo so you guys have an idea... Maybe I will on my profile, so check back if interested.

  • I started taking Duloxetine and may pain is now manageable with acetaminophen and ibuprofen. I have stage 4 endo and until I found Duloxetine I was dependent on narcotics and facing a third surgery. Duloxetine is not only used for chronic pain but depression which helped on so many fronts. I am taking 20mgs which is a low does. It took about 4 weeks to kick in but it has changed my life!!! See if your dr will let you try it. Good luck!

  • I know exactly how you feel...I feel so alone in this. No one wants to help. I've had the worse two weeks of agonising pain in kidneys, bladder and bowel. Which is also causing pain in my legs and hips. I feel ready to give up this fight. If this was cancer we would be treated differently. It makes me understand why Marilyn Monroe overdosed. As the painkiller just don't cut it! I feel so low...when will this ever end?? I'm praying for help for all of us Endo sisters. No one knows our struggle but us. Peace and love to you xxx

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