Haven't been diagnosed yet.

[helenjayne20]

Hi I'm helen 27. I've always very painful heavy periods. Recently in the last year I have had unbearable pain in my rectum and stomach it's like someone's stabbing, pulling my insides out from both ends. I've changed doctors and thankfully my new doctor is great had a whole mot. the reports from my ultrascan show cyst with endometriosis appearance, I've been referred to a gynaecologist to see what to do unfortunately I've got to wait till the 23rd Jan :(. does anyone have the urge to pass urine alot during the day and you feel your bursting but only pass a little? and have bouts of constipation and diarrhoea? sorry for too much information. I'm not sure what's connected to endometriosis and what's not. thanks for reading

[gemmah6]

Hi there. Sort to hear about your pain 😞 I had ALL the symptoms you describe and I had a cyst and endometriosis. I was misdiagnosed for ages and each month was given antibiotics for urine infections. I joined this forum when I was eventually diagnosed by a gynaecologist. The one thing that I would one hundred percent recommend that I learnt from this forum is to make sure that you are seeing someone from a BGSE centre. My first gynecologist wasn't - I read on here that I should find a BGSE centre and did and found the treatment offered there was a much better option. In the meantime to help with the pain I used hot water bottles for the stabbing pains. It was draining, and I can only assume that the cyst was pushing on my bladder making me need to pee more. I do hope that you feel better soon and everything is sorted soon. Take care xxx

[helenjayne20 in reply to gemmah6]

Hi Gemma thanks for your reply. I have been reading about bgse etc on here. did you get your doctor to refer you? I don't think the one I have been referred to is bgse. where was your endometriosis if you don't mind me asking? thanks for the tips Im usually just doubled over I'll try hot water bottle. I hope yours isn't too bad now xxx

[gemmah6 in reply to helenjayne20]

No problem 😊 If you find your nearest BGSE centre and then ask your Doctor to refer you to that one. Mine is a bit of a long story so in the end I went private to a BGSE consultant to get treated. The cyst on my left ovary burst - I was admitted to A&E and they thought it was appendicitis. I was scheduled to have my appendix out the next day by keyhole surgery and when they opened me up they found that the cyst had burst. Unfortunately they just drained the cyst and four weeks later it was back. I then went to my doctor and asked to be referred to a gynaecologist. When I saw him he got the notes from surgery and told me that in the photos it showed I had endometriosis and the reason the cyst was 'back' was because they had only drained the fluid away and then left the cyst behind. He also told me that the endometriosis was on my bowel. So he prescribed Zoladex injections every four weeks along with livial tablets with a view to operate and remove the cyst. Since the operation I was in agonising pain where the cyst was so he also prescribed me some diclafenac for the pain too. Prior to the cyst bursting I had the symptoms you described - needing the toilet constantly, passing a little, then having to go back and pass a bit more. It never felt like I emptied my bladder properly - which is why I thought I had urine infections. I had a stabbing pain in my rectum - when I sat down it was a sharp shooting pain from my bottom up into my stomach - I thought it was possible haemeroids (?) inside but was constantly at the doctor for 'urine infections' I just left it. These symptoms would come a week after my period - every month. I would suffer constipation for at least three days before my period and then diarrhoea when it started for at least a week afterwards. After he diagnosed me with endo that's when I found this site - and that's when I found a BGSE specialist privately and realised that all these symptoms I had had for months and months was endo! She told me that she could cut everything out, whereas the other gynae told me he could remove the cyst and I would need ongoing treatment for the endo. I only had the op three weeks ago and it turns out that the reason I was in so much pain was because the cyst was stuck to my pelvic wall. She also said that there wasn't any endo on my bowel either. I only saw her briefly after the op so don't have all the info on where it all was until I go back and see her at the end of the month. So I would definitely recommend going to a BGSE centre to make sure that you are treated properly. Definately try hot water bottles, or heat pads for the pain. Careful with painkillers because they can cause constipation and then that can make it worse - I would go back to the doctor and ask for pain relief and explain about the toilet issues so that they can give you something that won't make it worse. I also found it useful to write down any questions I had before I went to an appointment - because I would forget everything otherwise! I hope this helps and sorry about the ramble! Keep us updated with everything and take good care of yourself too xxx

[helenjayne20 in reply to gemmah6]

Hi sorry haven't replied sooner been working quite a bit. ah ok I'll speak to her and ask her theres one about hour away. oh God sounds like you went through the wars with it. I'm glad you got to see someone at bgse, quite a few operations you ended up having bless ya. how are you now? I wouldn't wish this on anyone it's a horrible thing we all have to put up with. I've been trying to put it down on paper etc so will hopefully be easier to explain. I will defo search out a hot water bottle. thanks for your reply. I will let you know how it all goes xxx

[gemmah6 in reply to helenjayne20]

Hey 😊 I have my fingers crossed that I am now at the end of it all - but considering everything that's happened this year I am not counting my chickens just yet! I feel much better but for the odd twinge, but am hoping it's just healing and not anything more. It is an absolutely horrible thing, and so many people are being misdiagnosed, or waiting for ages for a diagnosis it's horrendous! Which is why this forum was a Godsend for me! It's important to try and stay positive and there will be an end at somepoint 😊 Good luck with everything and please let me know how you get on. I have everything crossed for you! Take care and hope the hot water bottles help xxxxxxxx

[helenjayne20]

Hi gemmah6 thought I'd reply I had lap done on 25th April they said they found a 2cm chocolate cyst on left ovary and a 1cm cyst on right ovary and endometriosis on womb and pod just recovering and taking it easy now. Thanks for all your advice and support, hope you are doing well xx