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Hello everyone, I would be grateful for any advice or experience

I was diagnosed with Stage 4 Endo on the 16th Jan (Confirmed via Lap) 12 weeks on I now have pain where I never had pain.i had my first Zoladex on the 17th feb, no increase pain in the first 3wks, however did bleed for the full month. On the 21st March had my 2nd injection and had lots of side effects itching, hot flushes, weight loss/gain, headaches, nausea and swelling of my legs. Still have not stopped bleeding. i went to my pilates session on Monday and was not able to do a lot of the basics, then tues at physio, he was not comfortable in going ahead with my session. I saw my Endo consultant last night I'm now having an ultrasound to rule out cysts on my ovaries.

The consultant is also sending me for a 2nd opinion in order to make a decision on whether I need more surgery now to remove the remainder of my Endo on my bowel. Secondly to also consider a hysterectomy and is that right for me etc...

My case is getting very confusing as my scoliosis has joint in and my hip is twisted, post the Lap! If there is anyone out there that has Congenital scoliosis (S shaped) and Stage 4 Endo, I would love to hear from you and your experience. Also did you scoliosis get worst post hysterectomy?

4 Replies

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  • I was diagnosed April 26,2013 with Stage 4 endo, huge endometrioma during a Davinci Hystrectomy & was suppose to have my rt ovary removed due to the fibroids & endo BUT my gyno called in another surgeon that day & they thought it was too dangerous since I only have 1-Kidney Right / donated left to sister.--So gyno only removed uterus & cervix.. Well the problems started --I continued having monthly perioids as heavy as before. He said the first couple visits you're not having periods, other people couldn't believe it either since I didn't have an Uterus but I was so after weekly visits I decided to take pictures.. Then I showed them to him & said Are we on the same page now, this shouldn't be happening, I've had to wear something everyday since April 26th... Needless to say I started doing my own medical research & found out how devastating Endometrioisis is & as we know Stage 4 is the worse. Now as far as I'm concerned the April surgery should of been converted to open from the robot to do it once because in Sept I ended up in the E.R. with severe rt lower & upper pain, nausea,vomiting & temp.. Doc thought it was kidney stone in my only Kidney but NO--IT turned out to be a huge mass 6x6 by the rt ovary & Kidney again that was infected. I had to have surgery where a Gynolcolgist Oncologist who has more surgical experience removed Both ovaries which the endo feeds off of, the mass & cleaned out the infection from within.. I felt great for 2 weeks then on Oct 30th severe side pain,nausea & vomiting.. I was scared I had another mass BUT I've had MRI's.CT,Transvaginal ultrasound --ALL rule out mass.. Now the doc says it's ALL FROM THE ENDO, INFECTED MASS & Adhesions.. So I've been going for the past 2 months for Pelvic floor PT--which has helped slowly.. I was nauseous/vomiting daily,loss 30lbs & follow up after the Oct surgery has been terrible.. I feel like just because I didn't have cancer I don't matter.

    *** Sorry it's so long, but I've been suffering for 1yr now & Finally feel a little better ONLY BECAUSE I DID MY OWN MEDICAL RESEARCH.. YOU MIGHT WANT TO TRY PELVIC FLOOR PT, IT'S NOT YOUR NORMAL PT-manual internal & external, stretching etc/ my therapist is great. BUT YOU HAVE TO BE CAREFUL WITH REMOVING ENDO BECAUSE YOU ONLY GET MORE ADHESIONS & USUALLY IT MAKES THINGS WORSE/// That's why they don't want to do surgery on me.. Hope this helps some.. If you need contact me.. take care

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    Mturleykeeble

    a day ago Mturleykeeble

    Confused.com

    Hello everyone, I would be grateful for any advice or experience

    I was diagnosed with Stage 4 Endo on the 16th Jan (Confirmed via Lap) 12 weeks on I now have pain where I never had pain.i had my first Zoladex on the 17th feb, no increase pain in the first 3wks, however did bleed for the full month. On the 21st March had my 2nd injection and had lots of side effects itching, hot flushes, weight loss/gain, headaches, nausea and swelling of my legs. Still have not stopped bleeding. i went to my pilates session on Monday and was not able to do a lot of the basics, then tues at physio, he was not comfortable in going ahead with my session. I saw my Endo consultant last night I'm now having an ultrasound to rule out cysts on my ovaries.

    The consultant is also sending me for a 2nd opinion in order to make a decision on whether I need more surgery now to remove the remainder of my Endo on my bowel. Secondly to also consider a hysterectomy and is that right for me etc...

    My case is getting very confusing as my scoliosis has joint in and my hip is twisted, post the Lap! If there is anyone out there that has Congenital scoliosis (S shaped) and Stage 4 Endo, I would love to hear from you and your experience. Also did you scoliosis get worst post hysterectomy?

    Tags

    Swelling

    Headaches

    Zoladex

    Nausea

    Congenital scoliosis

    Cysts

    hip

    joint

    bleeding

    Hot flushes

    Scoliosis

    Pain

    bowel

    Weight

    Physio

    hysterectomy

    I was diagnosed April 26,2013 with Stage 4 endo, huge endometrioma during a Davinci Hystrectomy & was suppose to have my rt ovary removed due to the fibroids & endo BUT my gyno called in another surgeon that day & they thought it was too dangerous since I only have 1-Kidney Right / donated left to sister.--So gyno only removed uterus & cervix.. Well the problems started --I continued having monthly perioids as heavy as before. He said the first couple visits you're not having periods, other people couldn't believe it either since I didn't have an Uterus but I was so after weekly visits I decided to take pictures.. Then I showed them to him & said Are we on the same page now, this shouldn't be happening, I've had to wear something everyday since April 26th... Needless to say I started doing my own medical research & found out how devastating Endometrioisis is & as we know Stage 4 is the worse. Now as far as I'm concerned the April surgery should of been converted to open from the robot to do it once because in Sept I ended up in the E.R. with severe rt lower & upper pain, nausea,vomiting & temp.. Doc thought it was kidney stone in my only Kidney but NO--IT turned out to be a huge mass 6x6 by the rt ovary & Kidney again that was infected. I had to have surgery where a Gynolcolgist Oncologist who has more surgical experience removed Both ovaries which the endo feeds off of, the mass & cleaned out the infection from within.. I felt great for 2 weeks then on Oct 30th severe side pain,nausea & vomiting.. I was scared I had another mass BUT I've had MRI's.CT,Transvaginal ultrasound --ALL rule out mass.. Now the doc says it's ALL FROM THE ENDO, INFECTED MASS & Adhesions.. So I've been going for the past 2 months for Pelvic floor PT--which has helped slowly.. I was nauseous/vomiting daily,loss 30lbs & follow up after the Oct surgery has been terrible.. I feel like just because I didn't have cancer I don't matter.

    *** Sorry it's so long, but I've been suffering for 1yr now & Finally feel a little better ONLY BECAUSE I DID MY OWN MEDICAL RESEARCH.. YOU MIGHT WANT TO TRY PELVIC FLOOR PT, IT'S NOT YOUR NORMAL PT-manual internal & external, stretching etc/ my therapist is great. BUT YOU HAVE TO BE CAREFUL WITH REMOVING ENDO BECAUSE YOU ONLY GET MORE ADHESIONS & USUALLY IT MAKES THINGS WORSE/// That's why they don't want to do surgery on me.. Hope this helps some.. If you need contact me.. take care

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  • So I ended up having a BSO-Bilateral Salpingo Oophrectomy with removal of the mass in Oct but now 5+MOS still have severe rt upper pain, front pelvic pain, tightness internal .. I will continue with the Pelvic PT have gone 2mos & pray things continue to get better.

  • Thanks for your message. I have 1:1 Pilates sessions weekly ans physio weekly as well for both my scoliosis and my Endo. But as I got worst over the last seven days everyone has stopped treatment me until we get the results of the ultrasound. My bowel ans bladder are also not working correctly. I'm sure life will improve one day for me ans I get back some quality of life. Look after yourself as well.

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