Hi! I have had endo for a long time and am having my third lap and excision of the endo and adhesions next weekend but…
When I had my consultation the doctor asked me specifically about rectal bleeding when on my period and I said I hadn’t noticed any. Typically the two periods since that appointment I’ve had rectal bleeding and now I’m really worried that it’s all on my bowel and they’ll need a bowel specialist and the consultant secretary said that if they do then they can’t do that privately and have to send me back to the nhs. I’ve been on the nhs list for 15 months and I am so worried I’ll have to go back to start again!
So my question is has anyone had rectal bleeding during periods and not needed a bowel specialist? My consultant is calling me back but I’ve suggested we go ahead and remove what they can and if I need a bowel specialist for another procedure then at least I’ll have had the rest of the endo removed for now! She is an endo specialist and is very good so I totally trust her.
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Rjb_88
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Hello, I have had rectal bleeding and The Gp asked me if I was sure I was wiping the right hole 😂😂😂😬🤪
Then put in chemical menopause with Zolodex and Tibilone HRT. As pain was severe. had Mirena coil in.
Had a sigmoidoscopy and no Endo inside bowel. On MRI Endo in pouch of Douglas.
Last Friday, 2nd Laparoscopy- no Endo in pouch of Douglas but on both sides, it was excised. No mention of bowel with Endo on any part of it. Will find detail in 3 months time!!
I had to do a stool sample as could be an immflmatory bowel disease such as ulcerative colitis or Chrons. That came back all clear.
Trying low fodmap diet to see if IBS or SIBO. Need to do another stool sample.
My lifestyle and nutrition with movement need to change.
I don’t think my response is at all helpful but it provides some sort of example…which may or not be reassuring to you.
🤣 god some of the things GPs say! Mine likes to tell me I’m depressed at the moment, which is fine if I was or if that was why I’d been to see them, very strange!
I have had the same, prostap instead and HRT, then mirena but it didn’t help at all and the mirena caused more problems so they took it out.
Your reply is helpful, thank you! I’ve had endo removed from my pouch of Douglas twice now so it could just be there again and not the bowel. It has just freaked me out a little, and there I was thinking that endo didn’t have any more surprises left 🫣
I think I’m going to try and endo friendly diet after surgery, have a bit of a fresh start!
Just to mention a sigmoid oscopy can't find bowel endo because the endo is on the outside of thebowel not inside. There seem to be aload of doctors telling people to have sigmoidoscopys to check for bowel endo which is a waste of time. An mRI is the way for them to see bowel endo. I have really extensive bowel endo and have never had rectal bleeding as a symptom so rectal bleeding doesn't always mean bowel endo.
If you are having a lap and you think there could be bowel endo it would be safer to have one lap and to have a bowel surgeon too, every time yu have an op it causes scarring inside. I've only had two but that scarring internally is so bad they have said they can't operate on me again. Think carefully about what to do and get an MRI from a good sonographer.
GPs eh? I'd have been tempted to ask him whether he knew where his elbow was and what he was sitting on.....unelievable.
If you have had an MRI bowel endo will show up. A sigmoidoscopy is when they put a camera up your backside and guide it round your intestines but it will not find endo it's the wrong test for endo but useful to rule out other bowel problems.
yes, I understand this. But they were ruling out it being inside. It’s not inside and had my second lap and in 3 mo the time will know more, if it’s on the outside
i have DIE on my bowel which is deep invasive endometriosis it has penetrated my bowel... I have stage 4 endometriosis to so I'm waiting for a total hysterectomy and bowel surgery which will end with a ileostomy bag. I have bleeding from bum during periods and trouble going to the loo all the time. Please don't leave it and end up like me they left me 17yrs now I'm riddled ... and I just found out my 17yr old daughter has it. I can't even tolerate some foods.
Hi Endofighter. I hope you don't have too long to wait for your operation and it is successful. I don't mean to hijack this thread but I would be interested to know which foods you cannot tolerate.
onion , garlic , , veg particularly brocoli any sort of stuffing anything with even a slight spice...., but I'm getting to the point where most things upset my system. Its just miserable xx
Thank you for replying. I'm sorry you're having so much trouble. It's puzzling how foods can make the endometriosis flare. I also avoid garlic, onion and spices, too much fibre and acidic foods. If I feel an attack coming on, I take an antispasmodic and antacid - sometimes they work, sometimes they don't. I really do hope the operation brings you some relief.
Thank you ☺️ I’ve told the consultant and she’s happy to go ahead for now and see what we’re dealing with so hopefully it’ll be ok. She is a specialist and I’m dying for the op to be done as it’s gotten so bad since I had my son 🙏🏻
I’m sorry it’s been so bad for you and now your daughter. Mine started around that age and it was horrible as you’re still growing up! My mum also had it but they didn’t find it until they did a hysterectomy due to horrendously heavy periods and everything was adhered to everything else
im sure my mum suffered but years ago it was unheard of.... but I cant believe I have it so bad.... I have a little girl with special needs to and when the flare ups start its hell she needs me I just have to get up and get on I'm all my girls have xx thank you ladies for your kind words I hope and pray you to get sorted really soon
I have also had some rectal bleeding only during my period, as well as blood in my urine (even for days after my period stopped). At my lap they found adhesions which fused my cervix to my tummy wall (bloody random surgeon on the day told me it was my bowel but the person who actually did the surgery said they misinformed me and it was my tummy...so I've no real clue what was fused to what lol) from my old cesarean section, and then both fallopian tubes had endometriosis through them which they did ablation on. My hospital is BSGE registered, so I know they are experienced and knowledgeable on endo. They can't explain the bleeding though! I do worry something could have been hiding deep inside, I've not had an MRI and do wonder if things could be hiding. But either way I've been left with pain still and I've no idea if the bleeding would still be there because they've stopped my periods with gonapeptyl lol still having some shooting electric pains from the inside of my bum out, and severe lower back pain, pelvic pain etc. So looks like the lap wasn't as successful as we hoped sadly, feels like 1 step forward and 10 back to be honest! Especially when the nurse suggested I go to my GP about IBS 🙃 she actually said my symptoms don't sound gynaecological so I should look at other options....I was like are you serious? What do you think I've done since a teenager lol? I told her my GP investigated every basic issue over a decade and never found a cause. She just shrugged then! Feels like you have one person who takes these symptoms seriously and then the next person gaslights you and makes you feel nuts lol. Hang in there chick! Xxx
I understand your frustration, I am 46. Let's keep speaking, amongst each other and wih others, I am not ashamed to say I live my daily life with a lot of pain and compromise and I am happy.
argh the IBS thing! They love throwing that in. My GP asked if it was all down to depression 🤦🏻♀️
Thank you ❤️ that’s what I have, just during my period and it’s quite a bit but it’s all so confusing as it could mean anything and everything. I did have an MRI a few years ago and there was nothing deep infiltrating thank fully so I’m hoping that means it’s not inside the bowel. The consultant works usually at an NHS BSGE centre so I do think she would say if I needed a bowel person too, fingers crossed for a smooth op! Xx
I’m the other way - never had rectal bleeding but have severe bowel endo. I wish I had insisted on an MRI much sooner, before the endo caused a serious problem. I’m with Avourneen above, one lap knowing that any bowel endo can safely be removed would be preferable to doing two separate laps, I think.
Hi ladies! Had my lap yesterday and had lots of endo but no signs of it on the bowel 🙌
Currently nursing my wounds at home and stuck with a catheter for a few days which is just not ideal but glad it’s all done and thanks so much for your advice and help xxx
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