i feel like my GP and gynae have given up on me...im 26, is there really nothing more they can do for me? bowel & bladder problems with endo

[lm330]

I have been suffering for more years than i care to remember with bowel problems alongside the pelvic and abdominal pain i get with endo. in line with my monthly cycle i get very bad diarhea, but at the same time i get a lot of swelling. i have the swelling throughout the month but its worse in the days before my period. i have had a previous HALO procedure for piles but this didnt help, and caused large scale internal bleeding with no explanation. i ended up bleeding for three days (from the bowel) non stop before i had two emergency blood transfusions and was rushed back into theatre. to this day they dont know what happened but ever since then i get the upset tummy every month and the swelling was even before this. i am convinced that whilst i may well have piles that there is something endo related. particularly as there was so much unexplained bleeding. i also have bloody mucus in the stools before my monthlies (sorry for the TMI) and yet the GP wont refer me for more investigation, and the gynae palmed me off to the pain management clinic a year ago after my second lap, claiming there is nothing more to investigate and nothing more he can do. i am regularly in my GP complaining about bowel related symptoms as well as the pelvic pain which has been gettng worse again for the past year after my last lap. it feels like they have given up on me and my GP just says i should live with it and learn to manage the pain. this cant be the only option? i have the coil for my endo but other than that they seem to be unwilling to offer any alternatives. i also have problems with my bladder which started around the time i got my other endo problems. i bloat easily and feel pressure on my bladder even when its not full, to the point where it wakes me in the night without fail. it also hurts after i go to the toilet. i dont feel at all happy that i can live like this but i keep getting told there is nothing more that they can do for me. they tried amitriptaline for the pain and the pudenal nerve injection but neither worked and the amitriptaline had terrible side effects. im going for counselling next week . i feel like for the past 10 years ive been telling them something is badly wrong and its only 3 years ago i was diagnosed, and now even with the diagnosis it seems that they feel there is nothing they can do....does anyone else have similar symptoms and think it might still be endo? or can anyone recommend a test to have without having another lap to see if its endo or cysts? i just dont know which way to turn at the moment. its so hard to cope with work and relationship when you dont feel that it will ever get better. even a possibility would lift my spirits. a test they could run or some course of alternative action to try. i wont accept that im a lost cause. and no its not normal to bleed from your bowel every month and have such bad upset tummy that you re afraid to leave he house. once when i was out the urge to go and the pain was so strong i collapsed, and it was all black and totally liquid, but the GP just said oh its a tummy infection, gastroenteritis...i get this diagnosis several times a year. but this cant be so... sorry for the rant and graphic detail. please help.

[lm330]

p.s. much of the endo they found on my two previous laps (they found some both times) was on bowel, bladder (ouside) and pouch of douglas. they also found some inside my vagina at the entrance to the womb. my last lap was 1 1/2 years ago and i have the mirena for treatment. other than that its me and my hot water bottle.

[jojo777]

Hi

I'm so sorry you are going through all these. Could you afford going to a good provate endo specialist and make a fresh start?

You need someone which is an expert and will actually listen to you. You shouldnt suffer like that, I cant even imagine how hard it is. Try to see someone please, bleeding from the bowel is not something you can live with!

Endo can grown back within months from the lap, so they cant exclude this possibility.

Jo x

[lm330]

Hi Jo, thank you for your sympathy its so nice on here to know im not alone, and everyone seems so supportive to one another. i did see a private consultant before about my bowel (the one who did the HALO op) but this was before i knew i had endo. the gynae i am seeing is supposed to be the most knowledgable in my area about endo although i dont think that is saying much. perhaps i should ask the forum if anyone knows a good consultant in my area. thank you. and ya ive heard it can grow back...the best i felt in ages was after my first lap for a few months. i remember going running every day and feeling much better but it didnt last long and i never got that feeling back since. ya i am worried about the bleeding as you say. my blood counts are always low and im often anaemic because of the blood loss. it used to be a lot worse though before i had the coil as my periods were extremely heavy too. thanks again hopefully someone might know a good gynae or have similar symptoms to me xxx p.s fresh start sounds good lol

[jojo777]

Where about do you live? I'm in London, if you are here too, I can message you some recommendations, I have a brilliant doctor, and believe me, I'm not a straight forward case when it comes to endo too. x

[unoriginal_uk in reply to jojo777]

Hi Jojo I am also based in London and fairly newly diagnosed with endo - Sorry to jump on the original posters bandwagon but would be grateful if you could message me with recommendations for those in the area who could help!

[Hidden]

lm33, i feel your pain, literally. could have been me you were describing there. Can i suggest you move gp? I was having similar problems and one day went to a different gp in my surgery. She took loads of bloods and found i'm microcyctic anemic etc and brought me back for more discussions when she examined me. Well i have a prolapse from bladder and bowel and she thinks it was caused by endo on my bowel and pouch of douglas which was previously described as obliterated! (three bad labours didn't help either!!) I've had 3 laps and 2 d &c's in past so now at the age of 27 i'm waiting on a hysterectomy, lap, excision of endo , tvt for bladder and bowel repair! extreme but at least i've had my kids! you may need repair for the pevlic floor repairs (tvt etc) and a referral to a different gynae who has experience in removing bowel adhesions would be good. You cannot be expected to live like this , quality of life has a big impact on everything, work, relationships etc and yours is suffering which isnt fair or right. when your pain is bad get yourself off to a and e for help- they might realise it is so extreme then. there is only so much pain anyone can cope with- your not superwoman nor should you try to be. I really hope you get some help and relief soon.

[lm330]

@JoJo, i live in Devon, but if there is none closer might still be willing to travel to london. im so fed up with the impact endo has on my life and i want a positive change.please do inbox me. would love to hear more about your story and your recommendations:)x

@Jolikyle- im so sorry to hear you have similar pains to me its really horrible to have this impact on your life. ya they do often take bloods at my GP but i have no idea what for or what they say. all im told when i ask is that white and red blood cells are permenantly low but stable over past 2-3 years and my ferroton (stores iron i believe) is up and down but sometimes im anaemic and this is very low. i was veggie for many years but have had to give this up and eat meat now and then because of the anaemia. aww im glad you have your children i still hope to have some in the future and this is often another worry to me as i dont know how feasible this will be. my last gynae seemed to think that i should be ok but who knows. it does impact on work and relationship right? my boyfriend is very supportive but it does make things difficult, and my ex was a total pig about it all- apparently its not possible to live without sex? clearly i have bigger problems than that...i love the fact that you say im not superwoman thats my boyfriend's favourite thing to say when he think i need to calm down, slow down lol. it pretty much sums up us women with endo though, i think in many ways we are superwomen the things we cope with on a daily basis anyway thank you so much for your message and i really hope all your suregeries go well. i have one for the bowel prolapse three years ago as part of the HALO (hemoroidal artery ligation op). is it a gynae surgeon who is doing your bowel op? i think this is one of the big problems, they are so keen to box you in to one type of problem. this is why for me it took so long to diagnose endo because if you look at the symptoms individually they often make no sense. its only together its like endo! get well soon xxx

[mablesky]

this all sounds like a nightmare for you .It does sound like you need a fresh start with gp and gaeni.afresh look at things you should not have to put up with these symptoms .hope you get some answers i really do xx

[lm330]

@mablesky- thank you so much. it sounds so odd but its so nice that everyone here feels that this is not acceptable to live like this. im so fed up with the medical staff telling me to just get on with it and that there is nothing more they can do. you do start to wonder whether this really is normal? well clearly not normal, but you start to wonder if they really cant help you. anyway thank you all for your reassurance that its not acceptable or normal to live like this. its very hard, and very frustrating when the consultants and GPs who should be helping you are not.

[Stelliestar]

Llm30- I suffered from lower pelvic pain for over six months, I was being investigated privately, no one could find anything or identify anything... Like you it was all about pain management, yet the root of the problem was being ignored and I too felt given up on. My kidnies started playing up and were not draining properly and there was talk of stents, removing the pipe work from my bladder etc... Andreplacing etc.... I had so many MRIs scans etc.... And nothing could be safely diagnosed and treated. I was getting worse and no one seemed to care. I was given a name of a specialist by a friend, she is based in Birmingham though, but I can safely say, that she is amazing, a guardian angel, here on earth. Her name is Miss Gabrielle Downey. She is at thetop of her game in the gynae field and also works with other specialists who are at the top of their game in other specialisations, so bowel issues canbe investigated also. They all helped me and within two days of being rushed into her hospital, I was being properly looked after. I had an absyss on my ovary that had developed from an Infection no one had picked up on, which spread and was causing swelling and distortion and scarring in my tummy, hence the kidney blockage.... Nothing to do with needing tubes being removed etc.or possible cysts that were 'normal' yeah.... Like septicaemia? Which is what I was on my way to... miss Downey knows her stuff, but also, will not let you suffer and leave her care unwell. I see her twice a year for check ups and she delivered my last baby. I can honestly say i trust her with my life and that of my children. If you can travel,I highly recommend. You're not alone and will be fixed, Hun xxxx

[Juleyanne]

Gosh reading these comments is like looking in a mirror! it seems only sufferers really appreciate the complexities of this horrible condition. I too get frequent bouts of problematic piles and fissures and blood in my faeces from time to time. They say if it is bright red blood it is probably piles, it comes usually from lower down but if it is dark blood you definitely need to get it checked out! In fact any bleeding from the rectum should not be ignored. My mother had piles (but not endo) and ignored it, eventually my father persuaded her to get it checked out and it turned out to be bowel cancer. She is 6 years on ok but that is why although often it is piles you should always get it checked. Anyway, I always wondered if piles where related to endo/adhesions

and it does appear other women with this condition get problematic piles too, interesting! As for the main question Gp's giving up on you - my medical practice has a few different Gp's. One is brilliant and understands why, because she has a best friend with the same condition! Another Gp in the practice recently said 'we are going round and round in circles', which made me feel as if I was a time waster! Reading between the lines I think this particular Gp thinks I should 'grow some' and be referred to a specialist for either another lap or as has been suggested a radical hysterectomy!

Trouble is I really don't think this Gp understands how absolutely terrified I am of yet more major painful surgery which has the real potential to worsen my symptoms due to adhesions. Yes, of course it might do the trick, but it is one hell of a risk when you have a history of bad adhesions

and endo. The last op I had lap and hysteroscopy showed I had extensive endo and adhesions

which had travelled to my stomach too. I've had two ops to remove tubes previously and after that ovary stuck to bowel and tube stump to bowel other side - plus they removed as 'much as possible due to close proximity to bowel'. This I presume means they had to leave some deposits! and probably that is why I am still in pain! I have complication of Divercultis Disease and small Hiatus Hernia so for the majority of the time I am in pain/uncomfortable, bowel/bladder hip pain, continence issues/piles/fissures/low back pain/poor sleep despite taking sleeping tablets max strength and I even experimented with taking half amitryptaline and half zopiclone in the hope it might allow me a few hours uninterrupted sleep as pain wakes me often. I keep trying different anti depressants but the side effects are horrible and I end up going back to just pain relief, various laxatives and stool softeners, anti spasm medication like Merbervine and Colpermin and a sleep tab to get by. I am a few months into menopause so it's a waiting game to see if symptoms reduce but so far not alot! I fear this will end up again on the operating table. Want my life back, so tired, so scared and but for this wonderful site I would feel very alone!

[missteal]

Sounds to me like they need to stop you bleeding first and foremost! I take norethisterone 5mg twice daily (a very strong progesterone). This stops all of my bleeding and it's a very traditional way to treat endo long term! I only have a break every 6 months and it's literally given me my life back.

I have been diagnosed with adenomyosis so it might be worth asking your gp if there's a possibility that you could have this too?

Hope you get somewhere hun xxx

[Hidden]

Reading this has rung alarm bells with me too.

I am currently waiting on a gynae referral for second time (had lap 2 years ago, found endo and adhesions sticking everything in my pelvis to everything else!) and for the last 2 years and 2 months, since a very traumatic colonoscopy, I've suffered from bleeding every time I go to the loo (no 2's). Sometimes I even find blood in my knickers which I know is from my bum cos when I wipe my bum there's blood on the paper.

I have been thinking that this was related to the colonoscopy doing damage as well as traumatising me so I've only been to the GP once about it (about 2 months after the colonoscopy, which took a lot of guts for me to go, and they insisted on examining and I was crying in pain the whole time, then told me it was piles but the medications did nothing. I've been too scared to go since, partly for fear of painful exam, partly for fear of being told "it's only piles", partly for fear of being referred for another traumatising test). But after reading this I think I may go back to my GP and see what they say. Or should I wait until I see the gynae and mention it then? Or tell both?

[lm330]

@stelliestar- im sorry to hear that you had bad pelvic pain too. Its so frustrating when they give up on finding the cause and just want to manage the pain (which even then they don’t do very well lol). I am having an MRI scan now on Friday after having pushed for it to see if they can find anything else. My goodness that sounds really bad with your kidneys!! Thank goodness you found someone good though? Thank you very much for the recommendation. I will definitely look her up. I don’t know how they don’t pick these things up when it sounds like you had so much going on! I definitely feel like that, with no one taking me seriously. Im a very happy go lucky person and I always go to work etc even though I have no home life because I am so exhausted all I do is sleep at home lol; I don’t think it helps being cheerful because people think you are coping even when you’re not. Wow you have a baby now too! Congratulations. Thank you so so so much for telling me your story and for your recommendation. I suspect I will have to wait some time before I can afford private treatment, but I will get there. Thank you for you positive outlook? its really nice to hear a happy endo story for once ? take care xxxx

[lm330]

@juleyanne- im really sorry to hear that you are having such similar problems. I know how hard it is to suffer with these afflictions so I feel your pain (literally lol). My problems in this area are worse than ever at the moment unfortunately and no amount of creams or suppositories seems to ever help. I am due to start a new treatment with my pelvic physio (don’t ask…another affliction recently diagnosed with misaligned rotated pelvis so having physio for that) to reduce the swelling in the bowel. Its not a cure but she thinks it might relieve some of the discomfort until they find the cause. Cant remember the name but its some kind of machine using electric pulses. Doesn’t have to go inside which is a pleasant relief. I also have an appointment to see a bowel specialist again through nhs seeing as gynae s wont accept my bowel problems are gynae prob. So round and round we go in circles. That is interesting as you say that there is a relationship with piles. How odd. Haha funny that ive just read you also wrote “going round and round in circles” its all we ever do! Its so bad how they just think we are making a big deal out of nothing. I dotn know why so many medical practioners are not sympathetic about endo and don’t recognise how bad it is and the impact it has on our lives. Oh my goodness hysterectomy? Is that what you want? Well not what you want obvs. But have you had your family etc? that’s quite radical. And ya sure im terrified every time I go to the hospital. Surgery is not a pleasant experience. I hate being so dependent on other people afterwards and missing work. And ya reading some of the other posts I don’t think hysterectomy is any guarantee. Oh my goodness, when you say travelled to your stomach. Do you mean inside? Because they are not willing to look inside my stomach or bowel despite all my symptoms in this area. Do you know if mri will show any there?oh my goodness a hernia! That’s probs from the stress of all this! And from straining. You poor thing ? I was put on antidepressants for the pain on a low dose but they made my bowel symptoms much worse. Don’t know how you found them? Really hope you and I both manage to get this sorted. Wishing you all the best and please do keep me posted. Take care xx

[lm330]

@missteal- yes that is true! Well im not bleeding any more at the moment, but im still in a lot of pain and things are still not very good down there. However it’s the fear as much as anything because you never know when it will happen. In public or when you cant get to a bathroom? Or if it will make you collapse again or if its cause for concern? Etc etc/ I have looked up adenomyosis online and im quite confused what it actually is? Im having an mri this week in my pelvic and bowel region. Would it show this? Or only if they are looking for it? Not sure what they are looking for actually lol. Hope you are well xxx

[lm330]

@karatepanther- I think that this is one of the great things about this forum because we can talk to each other rationally about what is normal and what is not. We often get fobbed off with symptoms being normal when they clearly require investigation. It sounds like you like me have had probs following the bowel surgery. I don’t think they understand the complications that surgery in this area can cause with endo. I never had any of the bleeding prior to surgery. Its so scary. And that was 3 years ago now I think. My bowel op was very bad. I was bleeding for days after non stop and had to have two emergency blood transfusions. To this day they don’t know why it happened and I would have thought that was something important to find out? Lol. Yes please do go back to your GP hun and get it sorted. Its not fair and its not safe.dont wait until you see gynae. Your gp might be able to speed the process up if she agrees it is urgent. Mine has done in the past. But then my GP although is super nice. Keep me posted xxx