Just over a year ago in November I had an ultrasound that detected a 20cm ovarian cyst I went on to have a laparotomy and then was diagnosed with severe endometriosis.
Pretty well from straight after the surgery, I started getting severe constipation, loss of appetite and bloating I went to see my gp and they just put it down to the fact that I had a major operation and potentially IBS.
My symptoms persisted and then in March I started getting lower back pain, pelvic pain and a dropping sensation down below (at the very time I also had uti symptoms and fever symptoms) so I was diagnosed with a kidney infection; unfortunately my symptoms did not get better and the back pain went to the other side (previously it was only on the left side) and with this I was booked in for an ultrasound for suspected kidney stones however nothing was then picked up, I requested a CT scan as they are more effective but we just went in to lockdown so that wasn’t an option.
A few month ago, I had a cystoscopy to fix adhesions on the urethra from the catheter from when I had my laparotomy. I had hoped that they would also be able to get to the bottom of my other symptoms but nothing was detected.
More recently, I had a pelvic MRI to finally work out what is actually happening and it just picked up scarring on my pelvis. I find it odd that that would cause so many issues but I also find it puzzling that neither a cystoscopy or MRI hasn’t been able to pick up anything. I was wandering if anyone had my thoughts?
Sophie ☺️
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Sophie_Louisa
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When you say treatment what exactly do you mean? It’s weird because I would say I have more and more severe symptoms than when I had the massive cyst but nothings come up..
Patches of endo were removed during surgery (but obviously as I didn’t have keyhole we can’t rule out that I might have it on my bowel) and after surgery I was put on the contreceptive pill. Unfortunately most of my symptoms only came after the op!
Sounds a bit like me last year and this. I’ve had two ops this year. I had scans for other things and so far always reverts back to gynae issues. It’s good to check for other things though. MRI didn’t show much in the way of endo, ultrasound definitely didn’t. I didn’t get both ovaries showing on either, only one.It got worse after lap, I’m assuming this was because of the organs dislike to being moved, 2nd op a lot of adhesions, fibroids, etc.
It’s exhausting but best to go back and ask questions of the gynaecologist or as plotments has mentioned referral from your GP to a specialist, not sure if who you saw originally was or not.
Thanks! I know, I don’t feel like I’m getting anywhere. I have an appointment with a specialist in a couple of weeks so hopefully she’ll be able to help more
When you say you have an appointment with a specialist is this at a specialist endo centre in tertiary care? Severe endo must only be treated in such a centre. Was the laparotomy done in secondary care - normal gynaecology? As soon as you were found to have severe endo you should have been stitched up and referred to a centre.
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Pain plus weird fever/chills, nausea, diarrhea... has anyone had this with endometriosis?
Has anyone had an infection due to endometriosis?
Something else? 
Something isn't right..
New to this! Help & advice please
