Endo pain

Hi. I am 27 and have had pain in my lower back for quite a few months. It is getting worse and each month leading up to my period it is unbearable. I can barely bend or get out of bed. I get heavy aches in my thighs and in my pelvis. I also feel very tender in my lower abdomen. My stomach also swells a few days before my period and I could quite easily pass for four months pregnant. I am seeing a private doctor next week who specialises in endo to get his opinion. I was writing to this forum to get others opinion and see if they have similar symptoms. I'm 27 and this pain is horrific and I can't seem to go a day without painkillers which seem to only numb the pain slightly. Grateful for anyone to write back to me. 

8 Replies

  • Very similar to myself stage 4 rectrovaginal deep infiltrated Endometriosis localized to the bowel, colon, rectum, pouch of Douglas is fully obliterated and although my uterus is free of endo I gets massive cysts that come and go I've had a lap to deroof 2 big Endometriomas (cysts) that encased my ovary and tube on each side I also have organ binding xx

  • Thanks for your reply, I also get shoulder pain which radiates into my neck which is unbelievably sore. Could this also be connected? There are times when I am drifting off to sleep and I wake up gasping from a sharp stabbing pain in my abdomen. It actually feels like someone has punched me hard. The pain was so bad on Friday night past I sat in a&e to be sent home barely looked at with a box of pain killers

  • Hun the shoulder pain is consistent with blood filled cysts or Endometriomas on the ovaries not always visible to the naked eye u need an internal/vaginal scan. The pain in the tummy sound like spasms do you suffer with (and I know this is VERY private) stabbing in the bumhole or burning in the abdomen when u need to move ur bowels? Xx

  • No I don't get that. The stabbing pain in the abdomen only occurs in the two weeks leading up to my period. Bowel movements are usually fine. I do however get full quite quickly wen having a meal. Even if I haven't had very much to eat. Thanks so much for your reply. I feel I'm going mad sometimes and the constant pain can really get to you. 

  • Everybody gets different symptoms if I were you I'd discuss it with your Dr and ask for a scan. Everything you've said is a really valid reason to get further investigation. It may be something very trivial, it may not, don't take the risk hun, your Dr will understand xx

  • Hi Denise! I don't have answers for you but I'm here to say I know what your dealing with! I'm 25 and have always had menstrual related issues that have been getting worse over the last few years. I live in Los Angeles California and have had the hardest time finding a local surgeon who specializes in endo. I'm hoping to see Dr. Andrew Cooj who is a few hours north of me.

    I feel you girl! This is tough stuff we are dealing with and it is so difficult to find concrete information because so much of what is available on the Internet is false.

    You are on the right path!

    P. S. I have lots and lots of neck and shoulder stiffness in addition to constant headaches. I'm sure lots of stresses in my life contribute to this however I thought it interesting to point it out as it seems you may be experiencing something similar. 

  • Hey this really does sound like Endo and possibly adenomyosis, a similar condition. You are right to see the private doc to speed things up. You can have a lap privately to investigate things, bear in mind there will be a limit to what they can do privately - if there is severe disease with bowel involvement that has to be carried out near an icu in nhs setting and you'd also need a bowel surgeon present. In saying that first lap nhs is only investigative anyway so private could be the way to go for lap too if you have the money and want diagnosis fast, otherwise doc could move you onto nhs list.

  • Thanks ladies. Wat happens on your first initial consultation with doc? I'm going private nd have a appointment next weds. Has anyone came across effective pain relief even if it's not full pain relief but helps make things easier? Xx 

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