Hello everyone, I am 40 years of age, living in Scotland, on waiting list for Hysterectomy (88 weeks so far)
I have suspected endometriosis - symptoms of pain and heavy bleeding from womb. In past 6 months, have also been having issues with my bowel - extreme pain with toileting and anything vaguely sexual, and bleeding on and off from bottom.
GP referred me for Colonoscopy because I did the Q-FIT (poo test) and it came back with blood detected in the sample. I have an appointment for Colonoscopy next week.
I think I am likely to have Endo which is causing both problems (womb and bowel) but I understand that they have to check to rule out any other causes.
While I don't want them to find anything else, I understand that they would be unlikely to be able to see any bowel Endo on the inside from the Colonoscopy.
Has anyone had experience of this procedure in similar circumstances? What should I request if it looks normal inside the bowel? Is there any kind of scan that they could do for me to check bowel and pelvic area?
I really need the Hysterectomy so that someone can look inside my body and see what is going on. I have had to take time off work due to anxiety and pain/bleeding. The mental impact of these issues is the worst I think. Thanks in advance for your support x x
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Kittie5117
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Hello I have had numerous colonoscopies and they have never showed endometriosis or my adenomyosis. You need to have a laparoscopy to find endometriosis and a MRI for adenomyosis. It was my bowel consultant who put me forward for an MRI as he thought I had other problems, he was right! I wasn’t told this at the time, I got referred to gynaecology and had an initial consultation with a gynaecologist who then decided it was time to start looking into gynaecology issues.
I’m also in Scotland. Wow that 88 week wait is so long for surgery.
Thanks All That Glitters - you have replied to my posts in the past, thanks again.
Yes, when I called the Gynae waiting list last week they said "87 weeks" and that the theatre spaces are limited just now because of the time of year and winter pressures. It's so hard to cope not knowing when my operation might be.
Maybe I can ask about an MRI scan if the Colonoscopy comes back with nothing (eg - no other issues inside bowel)
I am struggling as I have had to take some time off work and I really can't afford to do that not knowing when my Operation might be, as I will be off again then.
All of the NHS staff are doing such a good job, the systems are just under so much pressure it's awful. Have already asked for anything, cancellation, etc. Just keep hoping that I must be getting closer to the top of the list.
Hello! I had a colonoscopy last year whilst having suspected endometriosis due to my horrible gastro issues.
They only found one polyp which was harmless and everything else looked healthy.
I didn’t want them to find anything but I was deflated as I have so many problems with my stomach and bowels.
But after researching and learning more I understand that colonoscopy won’t pick up endo as endo is on the outside but it still causes absolute havoc with your bowels.
I’m glad I had it and it also helped when I saw a specialist and told her I’ve had that it’s already ruled that out and more backed up our theory of endo.
I’m having my first surgery next week hoping to finally get a diagnosis 🤞
I’ve never had an MRI as I’ve actually never been offered one, my specialist just wanted me to go straight to surgery.
I will say, that for me I found the colonoscopy incredibly painful. I don’t want to panic you at all, you still should have it and I would still do it again if needed but it surprised me.
People who I know who’s had them said it was pain free but I had sedatives and pain relief, gas and air and I still struggled. It could just be me… but I think if I have endo it might have just like not done any good poking and prodding in there that it maybe pulled on the endo, I don’t really know. But I wanted to share my experience and I would take the light sedative if I was you.
Thankyou for your reply. Yes, that is what is frightening me, I am in extreme pain already doing nothing or going to the toilet, I can hardly bear to think how much it is going to hurt. I will take all offers of sedation/pain relief, thankyou! I hope to get to the bottom of things, pun fully intended.
Your situation is very similar to mine. I’ve had symptoms for years also there was blood in my stool so my GP referred me for colonoscopy. The consultant who did my colonoscopy diagnosed me with internal haemorrhoid !!!!!!! he also took 12 samples from my bowel as he found several lesions! The results of biopsies came back as normal and my final diagnosis was internal haemorrhoid!!! I was very surprised and disappointed as I knew haemorrhoid could cause discomfort anytime but my pain and bleeding would start a few days before my period! I gave up on NHS because I knew something was wrong with me and NHS Drs wouldn’t be able to find it! I went to my country, I did a MRI there and they diagnosed me with stage 4 Endrometriosis. Drs there and a private Dr in England told me that I need an extensive operation on my bowel and my rectum and uterus need to be removed!! So, I don’t have haemorrhoid!
I also had a miscarriage 2 years ago and a gynaecologist from NHS told me nothing was wrong with my uterus as they did a vaginal scan which obviously doesn’t detect endometriosis. My gynaecologist from NHS investigated my infertility issues for almost two years but they didn’t realise that my problem was endometriosis!
It’s very scary that NHS is so useless. Many people are dying of late or wrong diagnosis in this country! Please go private if you can.
I'm experiencing the same as you I've been referred for a colonoscopy I'm trying to get a gynecologist to confirm that I have endometriosis but the same gynaecologist keeps saying I'm going through the menopause when a blood test said I'm not as my blood test showed it was too high I'm at the end of my tether
Hello 160467It's difficult because it always feels like one way or other they blame hormones/menopause/age but there are so many variables. It just feels never-ending getting blood tests, etc. I'm sorry to hear that other people are suffering in similar ways x x
Hi, I also had a colonoscopy following a positive poo test. I knew I likely had endo as my extreme rectal pain only occurred during my period. The colonoscopy was extremely painful for me and I had to stop a 1/3rd way in as it was too much for me. They found a few small polyps but nothing else and I anyway found it useless to go all the way through my bowels as my pain was only in the rectum area…
When receiving my results I asked the consultant to send me for an MRI which then thankfully showed endo behind my rectum.
Hey! Hope you don’t mind me jumping on here. My colonoscopy was so painful, I had the sedative, pain relief and gas and air and I was still screaming out in pain. The thought of it now gives me shivers😂
No one at the time explained if that was abnormal or why… I felt embarrassed like I was being dramatic as I had loads of people tell me there’s were pain free. The doctor just said everything looked healthy!
It wasn’t until a few months after and more I looked into endo I felt the pain could have been due to that!
Do you think that’s what it was for you? I guess it’s just like moving it all around in there and maybe pulled on the endo? 🤔
I’m not diagnosed yet, hopefully will be next week but I’m certain it is on my bowel and rectum. I too have awful rectal pain! Xx
Hi, so from what I ve heard some ppl find it extremely painful while others are painfree. My mother (who doesn’t suffer from endo was also screaming in pain) so I’m not sure it is related. I personally was screaming in pain (even though I had 5 painkiller free vaginal births and no screaming). They tried to give me gas and air which was useless and did make me feel like I was being dramatic. They said I was scaring off the other patients 😂 I was offered to do it under general anaesthetic but thought it was a waste of time as endo cannot be seen inside the bowels. The positive side was that I was then fast tracked for an MRI which did show endo and was painfree at least.
As for what caused the terrible pain, my mother thinks the age might play a role as she had colonoscopies in her thirties and now in her sixties and said the pain disappeared when she got older so maybe the muscles are more loose which makes it less painful🤷♀️
Thanks to everyone for all of your responses. I will let you know how I get on. My instinct is that this is Endo and recto-vaginal related. Want to know what they find when I finally do get my Hysterectomy. Am worried about how bad my bowel might be affected too, will ask for an MRI to see if they will do one. Something is very wrong inside and it's difficult to ignore when it's constant pain and you need to use the toilet at least Ince a day! x x
Hello everyone - quick update - I went to get the Colonoscopy procedure yesterday. It all went well, apart from that I didn't manage all of the nasty prep drink so that meant that the bowel wasn't 100% clear (how embarrassing and totally my fault!) but the staff were so professional and kind. I did as best I could and had explained what my concerns were and where the pain was. They couldn't find anything else that might be causing bleeding (internal haemheroids or polyps) and no evidence of deep infiltrating Endo in the rectum. Nothing bad found, although they noted that there could be a polyp missed due to not being able to see everything clearly.
I am satisfied with that result, I asked if they could do a scan instead (CT Colonoscopy) but they said that I would have had to come back again. I decided to be brave and go ahead, I took the sedation which was Fentonyl and a pain relief.
I didn't feel the sedation at the time, except back on the main hospital concourse on the way out. I tried to use an automated till at WHSmith and I was sort of staring at it . . . .like . . .uh . .my partner was with me to make sure I got home safely.
So, nothing else found to explain the pain and bleeding from behind. I have tried to call my Gynaecologist again to find out when my Hysterectomy operation might be. I just want it all to be over. Thanks for all of your support guys, stay strong and keep a sense of humour when you can . . that's what I have learned so far! x x
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