Endometriosis UK

My story

Hi... I'm new here...

Since a year I have suffered 7 days before my period..till fourth day with v&d with rectal bleeding temp and and pelvic pain. At one point it got Soo bad that I had it before and after my period was v&d upto 26 times . So i was admitted into hospital and then investigation began... I had a sigmoidioscopy in which mild inflammation was found..i had a follow-up to have another endo colonoscopy...mild inflammation not enough to be IBD

Was then referred to gynae as they found it weird that it was always around my period that is when I first ever heard about endometriosis

He referred me for an ultrasound ...in my ultrasound it was picked up that my ovaries were larger than normal..my right ovary was stuck to my uterus..my ivaries were larger than normal. My endometrium was thick and was growing outside too. So he referred me for bloods to check hormone levels and PCOS.

Results came back normal so PCOS was ruled out and then my lap was scheduled fir 3 months time... by a week prior to my next period the pains were soo severe I could not move... went a&e and they could not do anything besides give me pain relief as what needs to be done is already underway...all I could do was try and get my laparoscopy scheduled earlier. This pain continued through my period and my laparoscopy was scheduled fir the week after..

Yesterday i had my first ever laparoscopy to diagnose and remove endo...after recovery I was told in 3 months time i will have a followup with my consultant to discuss findings... obviously I was anxious to know what went on so I asked if they could try find out...luckily consultant was still around so he quickly popped up to see me.. All he said was that my Uterus and ovary that was stuck they separated that...also my large bowel was also stuck to tubes.Hence the severe pain.Hes separated it all with success.Got to come back in 3 months...need to keep a diary of the pain...No active endometriosis.. old endometriosis cleared...

So did I have endometriosis or just adhesions... was wondering if any of you have been through this...

Ooo I've rambled on an on...🐵🙃

4 Replies
oldestnewest

Hi YellowMad,

I hope you're recovering well after your first laporoscopy. Sorry to hear you've been through a lot confusion and pain. Has your specialist been BSGE accredited? This is a good link to find a BSGE accredited endometriosis centre: bsge.org.uk/centre/

In the meantime, as you mention its worth keeping your pain diary before your next appointment: endometriosis-uk.org/sites/...

Take care, wishing you a speedy recovery x

Ugne

Reply

Recovering slowly...got lots of family helping around thankfully...

Hmmm.... the private hospital doesn't seem like it's bsge accredited..just been searching...

My specialist is a consultant obstetrician and gynaecologist, who has interest in gynaecological endocrinology endometriosis etc...is that ok?

Thank You.. .

Reply

So I had my post laparoscopy appointment.. .

He showed me pictures of everything captured..he said they separated all the adhesions that were probably caused by endometriosis...he showed me some patches that they have left behind and said my bowel symptoms are most probably bowel endometriosis..so treatment for tolerating pain would be being on the 3.1 pill continuously no 1 week break for a year then trying for a baby...that means no periods...he told me to think about it and go back to my gp with my decision...

Thinking about it...would stopping my period help...what options did others try...

I feel that I need to go to a bsge accredited centre...

Any advice welcome!

Reply

so i went hack to my gp...she was dismissive and wouldn't believe that the gynae said i hv to be on pill back to back for a year...and he still hadnt written to her either..i managed to get an appointment a month after the postop consultation...she just gave me morphine to deal with pain...i made another appointment to see a different gp..he referred me to bsge centre and gave me fentanyl patches to try until the appointment...they have been my best freind since...

so today... i had my appointment at the bsge centre! and boy how amazing they were...soo understanding friendly and caring... she did an internal examination...she saw n felt exactly where my pain was...ive been scheduled for an MRI... they looked through the pictures taken at my laparoscopy and saw the patches the previous gynae circled that he was unable to remove.. they were quite shocked he couldn't remove them...so to conclude before going in for another lap they wanna see where it all is and how deep infiltrated it is... they gave me a choice to continue the fentanyl or start the pill...she as well as myself felt i should stick to the fentanyl until the MRI so everything gets seen as it is...

any of you had an MRI to spot the endo...and how did it go?

i should be having mine in 2 weeks...then the followup appointment will be 6 weeks after the MRI as the results get shared with other senior specualist and they have n MTD..Or something..lol..she explained everything to ne cos sge saw my face fall when she said 2 months..🙄

Reply

You may also like...