Possible colitis as well as endometriosis?

Hi all,

I got diagnosed with stage 4 endometriosis in 2014 via laparoscopy which also removed as much endo as possible.... it was everywhere!! Most recently I have begun to have problems with my bowels got admitted to hospital 6 weeks ago in agony and needed morphine for the pain. Once they found out I had endometriosis it was put down to that although the pain was in my right side and lots higher than usual endo pain plus am on prostap at the moment which has hopefully dried up endo and no periods which is great! I have a sigmoidoscopy next week due to the constant diarrhoea mixed with blood and colitis has been mentioned several times... I was just wondering if anyone out there had experienced both conditions or anything similar ! Any info would be greatly appreciated! Many thanks x

14 Replies

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  • God this sounds like me same pain right side I'm not diagnosed yet . Not too convinced about cholitis I didn't have it this bad before the op MrI tues

  • Good luck with the MRI, I hope you get some answers. I spoke to my GP yesterday will wait and see what sigmoidoscopy shows and next stop CT scan. Hopefully we will both have some answers soon!

  • Yes I really hope we both do good luck to you too x

  • today had sigmoidoscopy which has shown colitis they are 99% sure and awaiting biopsy results but am been treated with steroids to reduce severe inflammation. another consultant to see, but at least have some answers! I hope the MRI went well.

  • Tiff_c

    Hi there sorry to hear about your pain,

    I've just come out of a laparoscopy this week where I've been told there's no endo, but I have every symptom of it. I have the same problem where I bleed a lot when I go to the loo- especially during my period- and at that time it's always runny too. I get such bad pains that go down my legs that I can't walk from it. They have diagnosed with PCOS and IC and the possibility now of either chrons or cholitis. I don't know if that's any help to you?

  • thank you for your reply, i have been diagnosed with colitis today and have been put on steroids to help reduce inflammation. they are 99% sure but biopsy will confirm 100% and new consultant to see! I hope you get sorted soon also.

  • I began with symptoms from Endo at age 10. Started my periods at 12,was constantly bleeding from my back passage & either running to the loo or couldn't go.

    I had a sigmoidoscopy at 14 (which was hell! I was screaming in pain, the doctor told me to stop being stupid it didn't hurt. Well as far as I know they know either use sedation or gas and air when people have it done? You didn't get anything back then. And when I was eventually dx with endo they said I have it in the pouch of Douglas which is an internal pouch located between the front and back passage & is reported to be the most painful place to have it, & causes pain during intercourse, using tampons etc so it was going to hurt me regardless).

    All through my teens they kept investigating my bowel, barium enemas, colonoscopy etc etc. Never found anything other than a polyp during the sigmoidoscopy. The doctors started trying to say to my mum & dad that it was all psychological, & that actually there was nothing physically wrong. Luckily my mum in particular had seen for herself the bleeding I was suffering, and that even at 12 years old I could be wearing a pad & tampon (which were painful to use), even the maximum protection ones, & go to the loo before the start of a lesson & half way through be flooding so bad it was going through to my skirt, so school was heaps of fun.

    Through the years I've always had a really dodgy & sensitive bowel, & bleeding, they could still never find anything. I was 21 when I was rushed to hospital with right sided abdominal pain that was absolute agony. They at that point took my appendix out. It was not that, they said it was normal, & some mention of something to do with my ovary was made but never followed up. A couple of months later I was rushed back to hospital with the same pain. This time I was really lucky that an expert in endometriosis from another hospital was at my hospital, they did a laparotomy. I had a chocolate cyst on my ovary, & the worst case the dr had ever seen of endo. They tried to run dye through my tubes & told me they were totally blocked, I'd never have more kids (luckily I had fallen pregnant at 17, unplanned - I was on antibiotics & didn't know they could affect the pill, but can never say he was a mistake as he's actually my miracle).

    They wanted to just treat the cyst conservatively, but ended up having to remove it, and while they had me open removed endo & extensive scar tissue - they said I actually had "guitar strings" of scar tissue going from my pelvis up to my liver. I had further ops to remove cysts etc, in 2006 at 28 I had a hysterectomy. They wanted to leave my ovaries but had no choice but to take my left one. I recently had an ultrasound for my liver (I now have end stage liver disease, in part thanks to the endo as I ended up addicted to prescription painkillers), they spotted something on my ovary & indicated that I needed an urgent gynea referral. I am not bothering because I have known for a while I have got another cyst, but for lots of reasons, including how many times they've already operated (4 times to remove cysts, endo & scar tissue, once for hysterectomy, I have 3 huge hernias which address a result of all the surgeries, & are irreparable because I have virtually no stomach muscles left in tact that would hold any mesh to repair them in place), they won't do anything about it.

    Even now I have bowel issues, & stomach problems, I'm on an extremely high dose of pantoprazole for heartburn. One day I can eat something that the next will cause me severe stomach cramps. I still always know when I would have had my period.

    I have found out a lot of things myself about endo in the end, as doctors still don't really know much about it here in the UK. I have had junior male drs tell me that ovarian cysts don't hurt, I asked how he knew, did he get them often?!

    Endo is classed as an autoimmune disease, & can go hand in hand with food allergies, sensitivity to things like perfumes & other allergies. Irritable bowel syndrome is also extremely common in endo sufferers. The bleeding is probably an indication that you have endo in your bowel. I don't know how much information you are aware of regarding endo? It is possible to get it anywhere in the body, even the lungs & nose. Usually what happens is that when your body is going through its monthly cycle, because the bits of endo are actually the same stuff as the lining of your womb which is the endometrium, it reacts to your hormones the same. As basic biology teaches, a period is because your hormones got your endometrium ready for a fertilised egg to implant itself in the endometrium, that is what the umbilical chord attaches to inside us, & provides a baby with all the nutrients etc it needs while you're pregnant. If you don't have an egg fertilised and become pregnant, then that endometrium falls away, which is what your period is. As the endo in the rest of your body also reacts in exactly the same way, it swells & bleeds/sheds too.

    Sadly when you have it in places such as your bowel which is a confided space, the pieces of endo cause so much pain because they're swelling & bleeding. Nobody has managed to figure out as yet how the pieces of endometrium end up in the various places in your body they do. There have been a few different ideas thrown around, one theory was that it is travelling back up through the fallopian tubes in to the body, however as in my own case, there are many sufferers who have completely blocked tubes from it, so I think that theory is debunked.

    Endo is also linked to higher rates of ovarian cancer, cervical cancer, breast cancer, other autoimmune diseases & much more besides.

    I would suggest that you probably have endo in your bowel, hence the bleeding, possibly irritable bowel syndrome too, or perhaps food intolerances.

    After the hellish bombardment of tests I endured when I was younger, I wouldn't suggest anyone with endo put themselves through it, without some really really hard evidence of separate bowel problems. Sadly it really is extremely common to suffer bowel pains and rectal bleeding from endo, & in all likelihood it's that causing your problems, rather than you having colitis as well

    Sorry if you already knew a lot of this, I just thought it easiest to get everything right, then if you know it all but someone else doesn't they can always learn too.

    If you have anything else you're worried about, please don't hesitate to ask. I can't promise to have the answers every time, but I do have rather extensive knowledge about it. I have found out that it is sadly best to know as much as you possibly can about your own illness, because drs don't have time to go through lots of different aspects of illnesses, plus they aren't always that knowledgeable about things, especially endo which is virtually unheard of & sadly due to the nature of it many feel ashamed to speak about it.

    Hope you find this helpful, & you manage to get some relief

    K x

  • I relied to your post 7 months ago but don't seem to have received a reply. Are you being treated in a specialist BSGE accredited specialist centre as it is a requirement of the NHS that you are. General gynaecology can only treat stages 1 and 2 so you need highly specialist care for stage 4.

  • Wow where abouts in the UK are you Lindle? I can honestly say that nobody in the last nearly 18 years of various treatments & surgeries, has anyone ever mentioned what grade my endo is. Nobody has ever suggested that I needed to be referred to any kind of specialist unit for care either, it's always just been the gynea unit at my local hospital.

    I was very lucky at one point, in & around 2006 I lived in Leeds, the gynea Dr I ended up under at St. James hospital was (no idea if he still is), one of the Countries leading experts in it, & was doing much research into it. He was one of the lead clinicians in a study where they used mice with & without endo to look for differences, & found that the move with endo had higher levels of iron in their pelvis. I am not sure if I had not been under him at that point if I would have gotten a hysterectomy. Where I live now, I also lived round here back when I was first diagnosed, & I have had my 4 surgeries for cysts, endo & scar tissue removal at this local hospital, which have occurred before & after being in Leeds. However even in Leeds there was never any mention of grading or going to any sort of specialist unit.

    I can't say that I am surprised at the local hospital here not telling me or implementing the specialist referral - they are an absolutely appalling hospital, for example with my liver the so called liver specialist tried to tell me my fatigue was down to weight & not liver disease (so wrong! You speak with anyone who has liver disease one of the worst things is absolutely one of the most debilitating factors from it), he also neglected to bother tell me I have stage 4 cirrhosis & compensated liver failure. However I'm surprised that the Leeds team didn't allude to any of this.

    Is it all fairly new policy & procedure? Or has it been used for a long time?

    Thanks

    K vxx

  • The centres have been operating since around 2008 but in 2009 the BSGE list was published and is here:

    bsge.org.uk/centre/

    Centres awaiting accreditation are here:

    bsge.org.uk/bsge-provisiona...

    There has just been a recent publication that confirms that women anywhere in the UK must be treated equally to those in England, because those in Scotland, Wales and NI have been having trouble getting referred. It has been clear since 2008 that women in England must be referred to centres for severe endo, but doctors and gynaecologists have mostly not being applying the required provisions.

    I have just put a huge file on my private FB group about this massively important new publication with a review explaining its importance. If you wish to join we can follow through your care.

    facebook.com/groups/1148144...

  • Thanks. I am currently not going on Facebook, long story, the short version is that with several physical health problems, & having bipolar too I'm currently in a mental health rehabilitation unit & don't feel strong enough to face Facebook right now.

    I have not ever heard about these centres, & I would actually question how well services in England do treat sufferers. My last op to remove a chocolate cyst was in 2013. So 7 years after my hysterectomy, & even now 11 years later I still suffer, but have never been informed these places even exist. Even when they eventually found out that it was endo causing my problem back in about 1999 I was still made to feel like I was making a fuss over nothing. I was actually an inpatient on an acute psychiatric ward after a serious trauma & subsequent bout of mania & attempted suicide. I needed a cyst removing then, & one of the psych nurses took me to an appointment with the gynea consultant I was under back then. I kid you not that this man told me that I had to give up smoking for HIS operation (not mine his lol), the nurse with me tried to tell him that while yes there were increased risks with anaesthetic etc for smokers, that actually because of other factors I wasn't in a position to attempt it right now. I promise you this was the response she got - "Frankly I don't care if she throws herself out of a window, as long as she stops smoking for my operation!" The thing which made it even worse is that I found out from the nursing staff on his ward not long after that appointment, that he chain smoked cigars! Lol 😁

    My last op & admission I was under a female, she was hardly a beacon of empathy, you'd think female drs would be slightly more approachable regarding what is an issue females face, but I have actually found they can be harsher than men!

    I must admit I haven't done a great deal of reading about endo for a while as I sort of know the majority of the how, where, what bits regarding symptoms etc. And I am extremely aware of the reluctance of any gynea Dr to do anything more with me, not just because of all the previous ops, but also some of my other physical problems, which means they don't really want to do anything else for me, particularly from a surgical standpoint. I only wish they'd listened to my wishes at the time of my hysterectomy & taken my right ovary too. Typical of course that they had no choice but to take the left one, as it's always be the right one I get the cysts.

    I have got to the point where I accept it, I don't like it, & my extremely negative experiences with doctors for many, many years over it have left me with a very deep mistrust of doctors. Any other physical health issues now I research and research them myself to find out what I can. Even before I get any diagnosis from doctors most of the time. I am not one of those people who looks at a few things & convinces themselves they have cancer, I may not have a certificate like drs do, but I am clever enough to be able to work out what is happening & more than once now have done drs jobs for them & diagnosed my own conditions, & only gone to them to get it officially diagnosed & put on my medical records.

    The "suspect" abnormality they saw on my ovary when doing the liver scan, I let them check my CA125 with a blood test which was absolutely fine, I don't have any familial history of ovarian cancer, & I am sure it was only suspect because the radiographers who did that scan only do them for liver, spleen, & ascites, so they're just being cautious. Besides which I can't have an ultrasound for it that is going to be successful abdominally, I always have to have it done transvaginally because abdominally they can't get a clear enough scan. At the moment due to spinal problems I am unable to get into the position they would need me to get in to be able to do that (that's a hard thing to say without it coming out as rather crudely lol) I don't believe it will be anything other than another cyst, which won't be treatable, so I think it would essentially be a waste of time.

    If & when I feel up to going back on Facebook I'll join your group, if only to be able to help others at the beginning of their journey.

  • I was undiagnosed for 20 years and could barely function, written off as physiologically unstable and imaging all my 'supratentorial' symoptms - 'in the head'. I had a TAH and BSO at age 44 and when my symptoms continued I had to research myself to know that I was at risk of renal failure due to what correctly turned out to be endo on both ureters. I had excision at age 55 for aggressive post menopausal stage 4 endo. After contacting the BSGE to bring attention to the lack of awareness and access to proper care the BSGE list was published in 2009. I for one am very grateful for the centres and the care women can now access - my surgeon, who undoubtedly saved my life, now heads one.

  • Ah I know that one well - it's all in your head!

    Unfortunately I do have Bipolar disorder, and complex PTSD, so I am even easier to write off as a looney tune. I am still in currently stuck in a perpetual vicious circle between mental health services, & physical health professionals. It is an ongoing battle for any physical issues to be taken seriously. I do to some extent understand why, because in my time as a patient in mental health services, I know there are people who are hypochondriacs, whether it is for attention, or because they are suffering somatic symptoms due to anxiety. I am currently in a mental health rehab unit, & since I came here some other health problems have worsened. I find it extremely difficult to maintain my composure when I get comments from others like "I know how you feel now, I am aching all over" - I have to remind myself they're not well, it's not personal. Then there's the other end of the scale where some of the other patients are just down right lazy, moan they're bored, but never want to do anything suggested to them. I am sat there wishing I could do anything without suffering for it, & daydream about shaking some life into those people, but again I bite my lip & try to remember they must have issues of their own. The fact I'm here is, well, wrong really, but in terms of the law it's correct - I know that's confusing, I'll try to explain. Although I do suffer from bipolar with rapid cycling & psychotic symptoms, & complex PTSD, & have historically attempted suicide because of those issues, that is not why I am here now. The reasons are many & varied, but mostly I'm sick & tired of being sick & tired, even if I had no underlying mental health problems, all the physical health issues put me in the position of being unable to do a great deal, I am in chronic pain with various things, my life expectancy is not in anything near double figures, & so I am in what I describe as a state of pseudo depression already, by that I mean because I miss out on so much, can't work etc etc etc. That regardless of mental health problems I'm living the life of a person who is depressed. Coupled with the fact that in some ways my own intelligence is a bit of a curse, because I can read & fully comprehend some of the things which are probably in store for me, and none of them are nice. I absolutely do not want & will not end up being cared for (much of that is down to abuse in my past, the rest is from not just personal experiences, but having witnessed, heard & even seen when I could work how some people treat those in their care). As a result of all these issues, in the last 2 years I've attempted what I see as Euthanasia countless times. They don't even know how ive survived some of the overdoses I've taken, by rights I shouldn't be here. It is also unbelievable how many times I've only been found by chance. People try to appease me with platitudes line it's obviously not my time to go, and there's a reason I'm still here, which just makes me mad to be honest. As there's no such thing here in the UK as Euthanasia I end up with the mental health act being used to protect me from myself. So right now I am in a mental health rehabilitation unit, it's not all bad as I have a bungalow of my own on the grounds, so get some degree of privacy & personal space. However I am not here because my mental health is behind what I do, so it's a bit ambiguous how they're actually using the mental health act, as even if it's coz you're a threat to yourself it is supposed to be due to a mental health problem. Now I am not saying my mental health is fabulous, but I don't know of anyones who would be under these circumstances. So when it comes to anything physical it's ever easier for them to attribute everything to my mental health & psychological state!

    Meanwhile I'm sort of stuck here because even though I am lying through my back teeth during assessments, they must be aware of the fact I am lying & won't take me off the section & let me go home. There is an absolute mountain of crap going on here at the moment, & you just couldn't make some of it up, & because of a very useless, yet nasty ward manager staff are miserable, there are completely unsuitable patients here, & all sorts, including the manager more or less telling me not to make a complaint, because she knows full well that I am someone who will when 15 other patients are being neglected because of one, I have currently been without access to a GP for months now. Which is absolutely fantastic when it's my physical health issues that are the root cause of my attempts to end my life. Some of them laugh when I say this, but it is absolutely true, if I were an animal they'd be prosecuted for cruelty for keeping me alive! We don't have drs here other than on a Wednesday afternoon, & the guy who is supposed to be the medical doctor is a junior doctor, & when just for one example it took me 20 minutes to get through to him that if I have an absolutely raging infection, because I'm immunocompromised with my liver, I can show absolutely no outward symptoms, not even a temperature & he Woodbridge believe me that I had cellulitis starting in my legs again for about the 7th time last year, you can understand that I don't ever refer to the man as a dr! So I have nobody looking after my physical health, I'm past the point of caring, I am no longer doing anything at all that will help prolong my life, including abstaining from alcohol - I have never drunk much & still don't, but if I want one I no longer stop because it's so bad for my liver! I just feel like a rat caught in a trap!

    I'm really sorry for offloading quite that much, I guess it's an indication of just how bad things are. I started because of the psychological issues blame thing & it just snowballed.

    Good for you for turning your own experiences in to such a fantastic achievement! I woke dearly love to set up a specialist support service which deals with people who have both serious physical & mental health problems, as there is not a single service in the UK that covers both, it's either one or the other, which in this day & age, with the absolute mountain of evidence that there is some link between physical and mental health I think it's ridiculous that there is nothing official for people like myself. If there were a specialised service, with dual diagnosis nurses, then it would make things so much easier with both aspects. They have dual diagnosis nurses for those with mental health problems and addiction, so why not for physical and mental health problems too then?!

    I'm glad you have been able to find a way to use your bad experiences for something so good & helpful to others. And apologies again for spouting on about everything.

  • thank you for your reply and information, I really need to look into this more fully. My treatment so far has been under general gynaecology alongside fertility treatment. I had an unsuccessful IVF treatment in summer and then have been on prostap to dry up the endometriosis for the last few months, so have been in temporary menopause with delights of hot flushes, unfortunately my frozen embryo transfer got cancelled after being admitted to hospital. Today I have had a sigmoidoscopy which has been diagnosed with 99% certainty of colitis with severe inflammation and ulcers (awaiting biopsy results for 100% certainty have been put on steroids to help reduce inflammation , will hopefully get sorted before trying for frozen embryo transfer. I will look into BSGE specialist centre as never heard of this before, many thanks.

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