menopause and bowel haemorrhage

[Nat107]

hi has anyone had bowel bless g and turned out to be endo if the bowel after menopause as I had a bad bleed and lost blood clot over 3 days and had colonoscopy that was clear Gp says you don’t get a flare of endo after menopause to cause bowel bleeding and pain so I’m at a loss what’s caused it

[Poppyg16]

Hi Nat107, sorry to hear this is happening to you. I was diagnosed in my early 20’s with endo and after years of pain, various symptoms and surgeries put my post menopause pain and ongoing bowel symptoms down to scare tissue as I too had been told many times by doctors that it would stop at menopause.

However I have had an mri scan this year that is showing previously dormant endo that has doubled in size over a year. I am lucky enough to be under the care of a specialist endo centre and my gynaecologist has explained to me that, although rare, endo can make it’s own hormone supply after menopause that causes it to start spreading again.

She told me there is not a lot of research around post menopausal endo but it does happen.

I am now due to have a hysterectomy, bowel resection and total pelvic clearance to hopefully excise and remaining endo as it needs to be cleared before causing me even more damage as my insides are quite a mess of scar tissue now due to the repeated surgical intervention in the past that has only ever burnt the surface of the endo away so it kept growing back very quickly.

I also have adenomiosis, adenomyoma fibroids as well as long term stage 4.

It may help if you do some research yourself online about post menopausal endo and take it with you to show your GP to back up your case for a referral.

It is rare to have active endo after menopause, and something else could be causing your symptoms. It’s good your colonoscopy was clear, but you still need to be listened to and know what is going on.

All the best with this

Kind regards

Poppy

[Nat107 in reply to Poppyg16]

Thank very much Poppy, you have had an awful time of it best thing is you have a good gynaecologist that knows what she is talking about. I had routine yearly Thyroid assessment and I’m now anemic so repeat bloods and another fit test even though had one already which was positive but then scopes were normal & endoscopy just found multiple cysts which wouldn’t of caused it he said. I’m on waiting list to see gynaecology which is nearly a year waiting now, as had internal pelvic and external ultrasound after first heavy bowel bleed nothing like the 3 day one which showed simple cyst on one ovary couldn’t see other ovary ndver can we right one as gas there they say and cystic appearance of the endometrium so don’t no what’s going on there. I hope you get the best care so you can be pain free. And sounds like at last you are, just hope they find my cause now thank you for reply x

[Poppyg16 in reply to Nat107]

I really hope you get the help and answers you need and are soon in the right place, with the right doctors to listen and help you.I feel very blessed that I’m where I need to be in the best of hands who I have faith in for the best possible outcome for me. It breaks my heart every day reading how people, like yourself, are not being listened to and believed with their endo life limiting symptoms, so are not getting access to the experts they need. It’s not just the physical symptoms that affect us all, the mental health impact can make this so much worse. I’m sure many on this forum have raised anxiety and low mood made worse by the long years of struggle to be heard. It should not still be happening now with more undo information out there for gp,s to access but unfortunately the specialist centres are so difficult to get referral to. There are so many of endo warriors out here battling every day and doubting ourselves when we are sent away from doctors yet again. Also just getting a go appointment these days is a battle in itself! Remember YOU are important, as all the endo warriors are, and deserve to be listened to and helped to achieve the best of health possible for you.

Poppy 🌞x

[Nat107 in reply to Poppyg16]

Thank you so much I do hope I get the right investigations as I do need answers. Got to hz d repeat bloods repeat fit and take it from there now as well as waiting gif my gyny apointment to eventually come through. It’s so frustrating at the moment. Best of luck & wishes to you once you get the treatment you need Tufnell inwards and upwards for a new life To enjoy

[Dakrav]

It is a blatant lie that one cannot get flareups after menopause. This is an autoimmune disease, and it can happen at 60,70,40 or any age. It also attacks other organs of the body. Tbe doctors are gaslighting when they say it doesn’t happen due to this. They are the culprits for not validating what we are going through. There are only a handful of doctors who perform surgeries and remove endo from all parts of the organ that could be bowel, hesrt, thoracic diaphram, kidney, and many more places other than uterus. I have pain on my right shoulders. I have pain in all my joints. All Related to endo

[Nat107 in reply to Dakrav]

Thank very much for your help I also read it can continue into menopause and that’s why I mentioned it as a possibility yesterday but the doctor cut me straight off with no that all stops as it’s associated with your menstrual cycle! I think doctors know a little bit about an awful lot but not specialist in any field to exactly be certain of anything to rule it out indefinitely. Oh my I did know it could affect your shoulder & joints Also that’s awful

[littlemisstaxi]

A hysterectomy may not cure endo as it depends on where in your body it has grown. As this can happen anywhere. I recently have had a hysterectomy and was told because of the endo I still need progesterone on top of the estrogen as part of my hrt to keep the remaining endo at bay. I had bowel issues for years and was told I had diverticular disease which cause bleeding from the bowel to me. Also I was recently told I have a rectocele which also can cause some bleeding. I hope you can get the answers you need.

[Nat107 in reply to littlemisstaxi]

Thank you for your reply, did it turn out to be diverticula’s disease or rectocele as a correct diagnosis or was that their presumed opinion trying to guess what it was, hope you found your real reason too lovely

[littlemisstaxi in reply to Nat107]

Unfortunately I have both alongside what they call a sigmoid colon with extra loops. All which work against me. Before my hysterectomy I really suffered badly with endo pain and bowel pain. I now have relief from both. Although I need to see a pelvic floor team for the rectocele next month. But I still get bleeding with bowel movements often which concerns me. xx

[Nat107 in reply to littlemisstaxi]

I’m glad you have finally got relief as it’s very debilitating especially you having more than one issue too, i eoukd Def not let it go if you still have bleeding from bowel unless that’s the diverticulitis as my mum in law had that and had bleeding because of it. But go back and just readdress it now you have had your hysterectomy xx

[littlemisstaxi in reply to Nat107]

I am currently on a waiting list for gastro again. Long waiting lists are awful.

[Nat107 in reply to littlemisstaxi]

That’s hood but I agree bed. Waiting g nearly a year now gif gynaecologist apt x

[Cocoacupid]

hun I have bowel endo severely am waiting on surgery for it. I had a colonoscopy as they found blood in my poo as my symptoms were getting worse and worse not like Ibs I like you had nothing found In colonoscopy. It’s because the endo is on the outside of bowel not on the inside like inflammatory bowel disease like crohns or ulcerative colitis. They only found out through my laparoscopic surgery

[Nat107 in reply to Cocoacupid]

Thank you for your reply, my heavy bowel bleed was over 3 days and not had anything like it since just still have pains, I have ibs but I agree feels different than that, I have been through menopause so dr saying it won’t be bowel endo as related to menstrual cycle, Iv always still had the pains and irritable mood as I did when I was menstruating just don’t bleed havnt for years now. Did you had endometriosis a before finding out bout your bowel endo, think I need more tests to be honest, dr just said repeat bloods and fit test and tss as he it from there. Did you pass any blood it was wiping on tissue as Iv had that gif many years they said ibs fir that too

[Cocoacupid]

constantly bleeding from back passage only found endo this year. But have had it years pain is excruciating. Have the coil so don’t get a period as such now as had an endometoma removed. And stripped during my lap. Am wanting a hysterectomy as well. I have to wait a while as gotta wait for gynea and coleractal team to be available for bowel rescection. Having mri on Monday am afraid as may also have high functioning autism so am on waiting list for that and I don’t like loud noises bright lights on anything like that. Have constant blood in poo. Since 16 was told Ibs but when I found out it wasn’t I felt a huge like relief as fort I was going crazy. Don’t like going out eating or anything anymore as always worried won’t make the toilet in time. Not fun at work as always in the loo. But gotta eat to live. It doesn’t matter what I eat now as always in that loo. Have excruciating pain in my abdomen all the time too constantly feel like am going to have a period with all the cramps and things too. Just hope you get the right help hun. They only did emergency lap as would get to the stage at times can hardly walk. The endo wrapped around my bowel , frozen pelvis and also wrapped around the sciatic nerves in pelvis. Am glad am on the right road now. Only taken 27 years as periods were never right when I started at ten years old. Pain only got worse and worse over the years would be down the doc every month due to the cramps and pain so that’s why had coil fitted. First one only last two years as it fell out of place and the doctor only touch it and came out. This one been in for four years nearly . But like you had the colonoscopy first before they found the severe endo. Am 37 and no children. Unsure if I could get pregnant now but also doubt I would be able to cope with crying babies . Am blessed with five nephew a and nieces and my friends children so it does bother me. I also don’t have partner as couldn’t cope now with sex as its extremely painful for me . So I just avoid the situation. Xxx good luck on your journey Xx am sure am pre menaposal as sweat buckets all the time

Moods all over place too . Sorry for long message.

[Nat107 in reply to Cocoacupid]

Oh god you have been through it and not listened to it investigated properly when all the signs were clearly there, it is just awful feeling not listened to, and if you were passing lits of blood from bowel and clear scope lije me you should of definitely been thoroughly investigated, it’s like oh we have done the gold standard colonoscopy and that’s clear so I’m a bit of a mystery they said, why couldn’t they just do more testing like mri I just don’t no. I hood you will feel a new life beginning g once you have had your treatment as you have suffered a long time, ask for help regarding autism they shoukd have someone that can help you ease a bit more comfortably through it as it’s not nice feeling like that before a procedure I have a lot of empathy with you on that subject. Take care lovely hood you feel lots better soon

[Cocoacupid in reply to Nat107]

Thank you so much you too sweetheart. Am hoping they will still do mri as have a severe chest infection and on antibiotics with steroids so fingers crossed as I don’t want them to think it’s Covid when that was negative as I work in healthcare I asked a friend at work if I could have a test just in case. Xx take care and am hoping you will get all the answers you need. Am hoping when they have the mri results they will book surgery quicker for me so I can get back to some. Kind of normal for me.

[Nat107 in reply to Cocoacupid]

Hood so too gif you they can always do a test if they wanted to double check for covid but they may wait till your feeling better but hopefully not too long to recover.

Let us no how you get on when your feeling better again good luck and thanks for your replys. Xx

[Cocoacupid in reply to Nat107]

Thanks for your reply’s too will let you know hun x

[Nat107 in reply to Cocoacupid]

Ty and you take good care lots of love xc

[Poppyg16 in reply to Cocoacupid]

Hi so sorry you are going through this. I too have been told I very probably have high functioning autism. It explains alot. I should have known really because I’m an ex teacher and used to work with a range of diverse students. It does help to know how my brain works and that my character traits are nothing to be ashamed of and try to change. Our brains are just wired in a certain way. I have been in the mri scanner now many times, and have an appointment for one at the end of this month. Like you I was dreading the noice and bright lights. Now I’ve had so many I think my autistic side of needing to know what is going to happen has helped because I know what to expect and although not the most pleasant thing to go through, no longer get anxious before the actual day itself. I do find the load bangs and buzzing hard to cope with but you will be given ear plugs and have music played in if you want which I finds helps to distract me a bit. I also ask to go in feet first so I feel that if I need to exit it will be quicker, also I can glance back over my head and see the out side. The scan operators are also very understanding and will do everything to make you feel safe. I do tell them about the autism so they understand me better. I think it would be very rare for anyone to not be anxious. I also tend to count things a lot in my head, which is one of my autistic traits, so I concentrate on counting the noises and focus on the rhythm of the machine. I’m also fascinated by, and love science, so also take my train of thought as to how amazing mri scanners are. I close my eyes and take myself off in my head to my favourite beach walk and imagine I’m paddling in the gentle rippling sea also to help distract me. My GP has prescribed me some diazepam to take on scan days which just takes the edge off for me. Good luck with your scan and take from it that it is one more step in the right direction of your health journey and if you ever need another you will know exactly what to expect.

All the best of luck

Poppy

[Cocoacupid in reply to Poppyg16]

Thank you hun. I take antidepressants and antipsychotics which do help with anxiety but I always knew inside they diagnosed me wrong as always said it was borderline personality disorder but I knew different but when I was told by the NHs occupational health doctor who worked with people with Asperger’s it just like lifted the weight off my shoulders as I said I knew I was more clumsy have sensory issues have dyslexia and dyspraxia and I always wrote as I spoke so hopefully next year will get the diagnosis I need. Have tried very hard to come off the antidepressant s and antipsychotic drugs as I said I want to feel me again as been on them so long that they give me terrible restless legs and if I miss a dose even though the dose is so small I get sick. They decided not to take me off the drugs but to give me another one. At least am not like a zombie anymore like I was for about 8 years or more. Am getting new coloured filter glasses as stupid me sat on mine and when I haven’t been wearing them have had terrible migraines and eye pain also have found the loop ear plugs good a lot of money but they have helped dim down noise for me. Xxx

[Poppyg16]

I know how difficult it can be! You know yourself best so I hope a diagnosis of Asperger’s will help you. I haven’t been officially diagnosed but my gp has written on my records previously missed Asperger’s as I took a test myself that was 100+ questions and came out at 97% likely! I also told her my life’s difficulties and always being the outsider, just not belonging, and having to mask to fit in. I also watched a tv programme which Chris Packham has made about autism and had an aha moment when he described how he sees trees and plants when walking in the woods. I said to my husband ‘doesn’t everyone’ and he said no. It might help you to watch it. I also understand the character of Sheldon in the Big Bang Theory as I have been called ‘hard work’ by others sometimes . I have found the dealing with sensory overload and my need for hard facts so very difficult in my endo journey, but I now know why. I also can be driven to distraction by patterns and small detail which make busy cluttered hospitals exhausting. My doctor is fantastic and I will say the same to you as she told me. ‘We are just people, all have different brains and personalities, we are not damaged or broken. So please embrace who you are and don’t feel the need to explain to anyone if you don’t want to. Looking back in my childhood and life so far it makes so much sense now. No liking being touched unless by those I’m really close to makes it very difficult and traumatic with all the medical stuff! I’m telling you all this in the hope that you do not feel alone and understand why your medical journey may be even harder for you. I tend to use logic a lot so with the mri I know it’s the best way to see what’s happening inside and helps me find comfort with my need for hard facts.

If I can be of any support to you please feel free to DM me, id like to know how you get in with your scan.

All my best wishes Poppy ☀️

[Cocoacupid in reply to Poppyg16]

Thanks hun I will let you know. Thanks for replying to me. I did watch a program called the reason I jump or something but that was about severe autism but it clicked in my head and also watched programs with tony Atwood that is a world renowned worker who diagnosed autism in girls. I did understand sheldon too from the Big Bang theory. I get told hard work wear heart on sleeve and things like that. I’m very clever in about healthcare things and am also bunny rabbit mad. I like you just want answers and hate being touched even by people I know. It has to be like on my terms. Sister was a ta now a qualified teacher and worked with Asperger children and was like she realized that I was like that and she even told mum. For me having that diagnosis would be breakthrough and also give me more information about one self. I get told also am selfish and self centred but that’s what autistic do. But really deep down am very caring and I’m very empathetic but with that take on other peoples issues and feelings. Which can then be difficult. For me it would mean if need time out at work if things get difficult could say please can I take five ten mins because the environment has caused me to suffer sensory overload. Always feel like outsider and would copy people to feel like I fitted in by the way they would dress. Always feel like I have to rehearse conversations and feel like I have to justify myself as feel I wouldn’t get believed. Family more understanding now but feel the dialogue would help them understand me more too. But the wait is so long. They were always told it’s mental health but it’s not just we think different and act different as we see the work in a different way.think could have adhd as well as extremely impulsive and addictive behaviour too. As have a lot of piercings and tattoos and really I may look hard core but deep down am one of the most caring people out there. Which goes to show looks are definitely deceiving. At least am not a zombie anymore but just want to understand myself . Dad going with me to mri and will take a cd to give them to play . Xxx

[Poppyg16]

Thank you so much for sharing. When I read your words your characteristics sound very like me 😀. I too used to work with autistic students when I was a teacher and aways understood and got along very well with them as I guess looking back we were on the same page. It’s just about finding your own tribe. When I was younger I too used to copy others dress sense to fit in but now just go with clothes I feel comfortable in, even if sometimes they are a little out there. I’m so glad you will have your dad with you to go for the scan, taking your own favourite CD is also very good as it will give you an idea of the time passing by how many tracks you have even played.

Take care Poppy x