I'm so fed up with these burning and stabbing pains.

[Sweetyassi]

I was in so much pain on Sunday I ended up in A&E. They took X-rays of my chest(don't know why, as I didn't have any chest pains) they did a CT scan on my bladder, kidneys and liver, they did an internal examanation which was very painfull, I had a blood test and urine test done. My stomach felt swollen and hurt to touch. My bladder was burning and had stabbing pains. After spending two days in hospital they discharged me saying I had a bad bladder infection, in the scans they found Endo on my left overires, and I have some Adhesions near my bowels and bladder. Upon discharge they gave me antibiotics to take for 3 days and told me to get more antibiotics next time I have the pains, they also told me I will have to take antibiotics for months to come. I was really upset that they didn't believe me how bad my pains were and were quick to discharge me. I'm still in pain, my stomach is still swollen, bloated, I'm still getting burning pains, stabbing pains. I get these really bad pains once a month that sometimes lasts for a week to 3weeks long. I'm on the Endo diet but finding that it doesn't help me when the pains get worse, I can't eat anything or drink anything. I'm weak, dizzy, feel tired and sleep most of the time. I'm taking lots of pain meds that they are not helping me, I use the TENs machine as well. But nothing helps when I get the burning and stabbing pains. Sorry for this post being too LNG I just needed to get this off my chest. I really, really wish someone could find a magic pill that us ladies could take and be magically cured of this horrible disease.

[Hidden]

You poor thing!

I'm no medical expert just an old woman (43!) who has had this bloody disease for 20+ years. It has caused me to miscarry two babies ( thankfully I have three

children also), given me chronic pain, affected my sex life and has seriously impacted on my quality of life.

In your position, here is what I would do.

Get an emergency appointment with your GP TOMORROW. Explain everything that has been going on. Then ask to be referred to a gynaecologist who is experienced in dealing with endometriosis. And if all else fails, DEMAND that you are referred.

I am not doubting that you have a bladder infection but the scans HAVE shown Endo which also needs to be investigated as soon as possible.

Also ask your GP to prescribe pain medication.

Best of luck. Please let us know how you get on.

Cyber hugs xxxx

[Sweetyassi in reply to Hidden]

Sorry to hear that you have been suffering too, and sorry to hear about your miscarriage. I'm really greatful I had my three children before I had my Endo. I've had it for 4 years now. These pains have really affected my sex life to, I'm taking morphine, pregablin and paracetamol for the pains, but they don't work when I need them to work.

Thank you for your advice, I will go see my GP tomorrow and explain everything to him that happened at the hospital.

Can I ask you if these pains affect your eating? Are you able to still eat solid foods while the pains are worse? The reason why I ask, is that I'm unable to eat anything and I sometimes go days or even weeks with just liquids or just eating baby food when I can.

[Hidden in reply to Sweetyassi]

The pains don't make me stop eating (definitely something else you should mention tomorrow). However my pain makes me feel sick and sometimes vomit.

I have a regime that I go through when pain hits (much too often at the moment). I take two codeine/paracetamol tablets

and one diclofenic suppository, I get two hot water bottles ( one for my back and the other for my tummy) and I go to bed for an hour or so.

My children are amazing. When they were small I told them I had a friendly alien in my tummy and that I needed to rest to make him go to sleep. My children are all teenagers now, but we still call the pain an allien

[Sweetyassi in reply to Hidden]

I will speak to my GP today regarding my eating problem when I'm in pain. I urnt my stomach and back by using the hot water bottle. At first my kids and hubby didn't understand what I was going through, so I made them read up on what Endo is and what it does to the body and now they understand what I'm going through and they help me a lot when I'm in pain.

[hellipops]

Hi

I completely understand of what your going through I've just come out of hospital after being there for 4 days, I get stabbing pains on my right hand side which was ongoing for 6 days and hence I took myself to a and e! They did scans and bloods found nothing! I've suffered for 20 years with endo, polps and now cysts on my ovarys when I was in I demanded they took out my mirena coil as this has been causing me hell! Turns out the coil was dislodged and sideways they managed to get it out after a hell of a procedure and it's been one day and I'm still having pains! Hospital dismissed me and now I'm back to square one! I know my body and I know when I'm in pain but sometimes people just don't believe you!!!! It's sooooo frustrating and upsetting!

Helen x

[Sweetyassi in reply to hellipops]

Hi Helen, I agree with you, it is so frustrating and upsetting when GPs and docs at hospitals just dismiss our pain and don't believe that we know what's wrong with our own bodies, they just rely on the scans and tests to them that nothing is wrong it's all in your head.

I feel sorry for you having a dislodged coil that must have been agony for you.

I had a bowel resection operation done 4yrs ago, Endo was inside my bowels and somehow my bowels had twisted and became blocked. I then had keyhole surgery to remove Endo on my womb, then I had a partial hystercretomy done. Having all these operations still hasn't helped me, I haven't had a day of being pain free. I saw my bowel consultant last week he said my bowels are stuck together, I still have Endo on my left overies and a cyst. I had an colonoscopy test done last week, they said my vowels are inflamed, I need to see a urologist to check why I'm bleeding and why I'm getting burning stabbing pains every month. Then I will know if I need further operation. It's just a waiting game now which is frustrating.