Hopeless!! Not sure is endo anymore!

[Live4422]

My pain started last July of 2016...I've had 3 yes 3 ct scans...one endo lap excision surgery this past April. Found out I have stage 2 endo but my pain has always been on my right side! At my post op appointment doctor said no endo was found in my right side!! My appendix was removed as a possible cause of pain. The odd thing is that before my surgery my pain would get better after taking birth control. Now the doctor is saying it might have been coinsidence!!! What?!?! That it might be an inguinal hernia but ct scans don't show anything!! It could be hidden but my pain is worse when I start bleeding! I am so confused and feel like it might be something more serious. I have horrible back pain and abdominal/pelvic/groin pain! Urogynecologist don't perform hernia surgeries which I don't understand especially if they are chronic pelvic pain specialist!! Someone please help! Anyone had onesided pain it feels like appendicitis but I don't have an appendix anymore!!

[Kazza331]

Oh ! sounds just like my pain ! I have endo and have already had 2 laps but for over a year now I have had terrible lower right pain been in and out of hospital with suspected appendicitis but always sent home even thought the pain is so bad I pass out !

Finally got date for op on 5th October my gyne thinks I have endo on appendix!

Will let you know if this works

I hope you get more treatment and better soon

[Live4422 in reply to Kazza331]

Thank you for responding! I hope you get answers! Endo is such a horrible condition...my pathology came back negative for endo on my appendix and my gastrointerologist says it can't be gastrointestinal so hopefully I find a good doctor that believes my pain!

[Kazza331 in reply to Live4422]

I hope u get answers soon too it is such a horrible condition, I've suffered with lower right pain since my last op 2&1/2 years ago let me know if u get anywhere

[Abigail16 in reply to Kazza331]

I'm exactly the same too! I have my first lap on the 9th October. I hope things work out for both of you! Good luck with your lap Kazza!

[Kazza331 in reply to Abigail16]

Good luck with ur lap too Abigail let me know how u get on

[Dangermouse381]

Have you been seen and trated by a bsge centre? I had endo completely missed by general gynea surgeons. Turned out i has extensive deep infillteating endo on ligaments, pouch of douglas, bowel, bladder,ovaries and also

Adenomyosis. My main daily symptom was bad lower back/tailbone/groin pain and Diahrrea daily .

General gynea surgeons are not qualified to recognise or excise endo if it is in these areas.

I would ask to be reffered to a bsge centre to see a specialist. Only then you can rule out deep infiltrating endo in these delicate areas . Do your researcg into rhe nearest centrw to you and reas reviews about the surgeons and when youre happy, go back to the gp and ask for a referral there.

X

[Live4422 in reply to Dangermouse381]

I actually went with an endometriosis excision specialist he had great reviews he is a urogynecologist. So many awards and things...but I feel like he missed looking in my right side. I just can't believe nothing was there if that had been my main cause of pain. My symptoms are so confusing! Thanks for responding to my post!!!

[Dangermouse381 in reply to Live4422]

Pre surgery i have a stabbing pain in my right groin. Yet to see if that still remains until im over the surgery and back to whatevwr my new normal is!

[KerryKB]

Hi. I'm the same in that most of my pain is on my right side and lower back. I've had 2 surgeries now and been told both times that there's no endo on my right, its all on my left! I was really confused by this but my last surgery was done at BSGE Centre and they told me that that it's really common to have 'referred pain' with endo and that where the pain is felt doesn't always means that's where the endo is. I'm due to have a stent fitted in my ureter on my left side and then removal of endo on my bowel and rectum but they've reassured me that they think it will give me some pain relief.

Hope that reassures you a little bit x