Fed up and unhappy - how do I deal with a complicated situation?

I've never posted a question before; although I've replied to many. I never feel like my issues are that important, and I'm just so used to having to struggle to cope. Still, I'm feeling somewhat fragile at present...

I'm awaiting my FOURTH lap in March. Three so far have been unsuccessful in "taming" my Endo and its symptoms. The first just lasered away superficial Endo; but left other areas of deep infiltrating Endo present. Useless! The second located further areas of Endo, and the third was a radical excision.

However, I continue to have symptoms, which are REALLY debilitating. Chronic fatigue, chronic pelvic and lower back pain. Pain and tightness around my belly button, and surgical scars (as well as a nasty, "musty" smell from my belly button). Cramping, bloating, water retention, nausea, vomiting and diarrhoea... as well as my persistent heavy and painful (clotty) periods, with flooding if I move about too vigorously. Oh, joy!

At a recent appointment my Gynae Consultant agreed to my further lap, but with huge reservations. He seemed to indicate that he was not sure my symptoms would be relieved by the lap. He also indicated that there could be considerable risks, apparently because of where my Endo may be located. The feeling is that it may be on or around my bladder and bowel. I've certainly had it on my POD and utero-sacral ligament area previosly, and my last surgery involved ureteral stenting (catheters) because of the Endo proximity to my kidneys and ureters. My Gynae is saying that the risks of more surgery are very high. I suspect this is the last time I can have a lap. I have also been told that if it is on/through my bowel, the consequences are pretty major (resection + colostomy).

I'm somewhat freaked out by this (although to people about me I always seem calm - it's in my nature). Other than my hubby I have little support (my family were abusive in the past, and my mother has Bi-Polar, so family are NOT easy to talk to, plus always selfishly wrapped up in their own issues). Over the years I have grown SO USED to listening to and sorting other people's problems that I tend to just sort of cope with mine. Usually with grim determination and a heck of a lot of creative thinking!

Right now, this isn't quite cutting it. I just get the impression I do not know the full story with regard to my Endo. I can NEVER get a clear answer from anyone as to WHERE my Endo is/was, or WHAT STAGE. I go to appointments where they show me some pictures of it, and say they found it in certain places; then at other appointments, different pics, and different places. No consistency.

I feel it is difficult to get to the bottom of this. I also feel that the attitude of my Doctors may be deliberate, as in the past I have been misdiagnosed, and given no treatment. I have also been given incorrect medications, and have found offensive comments written in my medical notes (I am the lady who was told she could not conceive for years because of "anxiety"!). I was also bullied at work due to my symptoms, and need for time off sick, or to attend appointments. This resulted in formal complaints _ both against my Employers for bullying, and against my previous Gynae (now fortunately dead!) for negligence.

How do I get the facts, and make an informed decision? And how do I make sure that I am not constantly punished, or mis-treated for having complained in the past about negligent care?

6 Replies

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  • Dear Scooteeder, I am so sorry you are going through all this. You come across as a very together person and give great advice! But endometriosis is one hell of a disease and takes over our lives, no matter how hard we try! Your issues are as important as anybodies! I am an RGN and have been a senior sister and a matron, yes, I am that old!

    I agree with your Gynae, further surgery does have its risks, especially from further adhesions. I believe it's impossible to get rid of all the growths, and in any case, if you are still menstruating, new ones can continue to form and on and on. In my opinion,you do not get clear answers because the docs simply don't know and sometimes it is difficult to see and to reach without causing damage to other organs.

    I think it might do us bossy ladies good if we had a proper chat - I'm useless on these things anyway.

    I look forward to your reply

    Kate

  • Hi there, I really do no how you are feeling. I had my 1st lap in November last year and was diagnosed with sever Endometriosis and a 5cm cyst on my right ovary! After an MRI scan I was also told that the endo was stuck to everything including the bladder and bowel. I was advised that due to the extent of the endo and the mess inside that a full hysterectomy would be for the best. I am currently waiting on appointments to see a bladder and bowel specialist to find out if the endo has gone through. I was also told the same as you regarding the bowel problem and can honestly say I am petrified. More so of that than of the hysterectomy. Until I have seen these specialists then they can't go ahead with the operation due to the complications. I should hopefully have a date for these appointments by Wednesday this week so I am keeping everything crossed. I've only recently joined this group and I am glad that I have as I was beginning to think that no one else would understand what I wad going through. I had never even heard of Endometriosis until November last year! Up until then my pain was always put down to period pains as many women have.

  • Oh-it breaks my heart to hear so may of us going through the same .Like other posters say, you come across as someone who has survived endo better than others and here you are suffering alone. Please know you are not alone,even if you feel this way and also that your wonderful posts are helping us all.From reading this forum it seems so many of us are at a similar stage -either being told the only way is total hysterectomy or that the risks of this are even greater.This has been my "stage" for the past 5 yrs,since I nearly lost life to Meningitis.I have not had any laps for 10 years- only lasering and cutting of adhesions - and now they are saying I have come to endo of road drug wise and it is hysterectomy or they can do no more ! I am now awaiting surgeon appointment as after admission hospital last Dec,they think endo has gone into bowel and bladder.I am in agony with bowel pain and no pain relief helps.Am not allowed any more than dihydro or tramadol in case my pain worsens and I don't notice it lol!! I am considering complaining as my pain is not being controlled, but am afraid to compromise the good relationship I have with my GP.I understand where she is coming from,but I have had pethidene( allergic morphine) before and at least it has taken the edge of and enabled me to get out of bed.

    Your story sound so like mine! I was dismissed at 18yrs,after a lap as suffering from stress and told to take a year out from uni! Was sent to a psychiatrist who wanted to give me antidepressants when I was not depressed -actually the happiest time of my life, barr the endo).I was told I had a hormonal imbalance and put on pill and sent away.Only at age 28 was widespread endo ,adhesions and "varicosity on ovaries"found and it was there in my report from age 18yrs! All this time I took the pill on and off and suffered agonies, fainting and collapse every time I came off it and it was just said to be period pain. The gynae I saw at 18yrs said that is why periods are called the curse lol!He suggested that I had a low pain threshold. Only at 28yrs was I taken seriously.!

    I consider myself lucky that the pill saved my fertility and that I now have 2 wonderful kids,but if I was made infertile through negligence I would be devastated and this seems to be the case with many ladies.

    From reading your posts you are a very well educated lady and its my opinion that most doctors do not like to be questioned or even taxed beyond what they know already?Being proactive, educating yourself on your condition, researching online- all very dangerous for us !!! I am very fortunate that my current Gp understands that I will research everything and will not always accept the treatment they offer.I have refused hysterectomy for 6 yrs as I honestly think it would finish me -I have ME/Fibro,on crutches and wheelchair due to Meningitsiin 2008,allergies,asthma etc. However, like you I wonder if I am marked down as a difficult patient. Unfortunately I was misdiagnosed with Meningitis at A and E and sent home, despite my protests and it is only by Gods grace that I am here still. I put in official complaint and was assured that this would not compromise future treatment, but I am sure that somewhere I have a black mark as a difficult patient!

    My only suggestion is that you politely remind them of your past mis treatment and assure them that you will be requesting all your notes in future and if you are not satisfied will take it further.When I suggested that I had grounds to sue nhs ( re meningitis) it was amazing how quickly I had an official grovelling response! I don't mean to put down any medical professionals as there are many wonderful ones out there,but sadly, also many ignorant, uncaring and dismissive medics who think they know your body better than you do.

    Feel free to pm me if you want to rant further -it is good to get it off your chest.You need t feel supported and have been such a support to others.Sending you a very big hug,on behalf of all us ladies on the forum.xx

  • Hi Scooteeder, You replied to my question so carefully when you were up to so much? I can't help you as much as you did to me but are you with an Endo specialist?

    I had 3 laps so far and all they were done by different consultants and they just "looked". First lap 2006 they did not very much found. But second time in 2011 they found a lot of adhesion but they just left them there even though I complained with a lot of pelvic pain. Why didn't separate them?! Third time last year they again "looked". They knew I have adhesion and they finally found endo on my PoD but they didn't do anything about it. Sounds like I have more adhesion than 2 years ago. I am on the waiting list since last lap (October 2013) for next lap to finally separate adhesion and remove any endo. I have been complaining my pelvic pain over 10 years now and finally they are going to do something about it.

    I was transferred to a doctor from the 2nd to the 3rd lap and the 3rd lap doc had see himself in order to plan treatment lap. Can't he read a lap note when the 2nd doc did? I have to suffer while I am on the waiting list?!

    I got my October lap's followup appointment in the end of February to discuss next lap so I am bit scared when and how it is happening. When I went to the GP he told me one of my adhesion on the bowel is in the complicated place. According to the notes, I have adhesion on my right and left and around belly button and back. I don't think my consultant hasn't checked my chest pain (diaphragm) which my GP has informed in writing well before my lap.

    If this consultation or lap doesn't go well I want to ask my GP to refer me to an Endo specialist but the nearest one is quite far. I don't think it is in my county. So I am not sure if it is possible.

    I haven't seen my consultant since the lap so I don't exactly know what he found only from the note from him to GP.

    Dear Scooteeder no one is punishing you. Sometime it feels like that though...why me.

    Endo is the illness making so many women crying but none of the person in the universe found the medication to cure so it is not surprise your doctor couldn't give you the right medical treatment. I know it is not fair they should have admit it that there is no medication to cure it. They try to tell you that THEY can do something about it. All they can do is a tip of iceberg really.

    I wish there is a machine which can transfer the pain for even one minutes so the doctors can understand what we go through every time. Are there any doctors who has endo themselves? They would be more understanding I think. But they would be offsick most of the time:(

    Take care Scooteeder xxx

  • Thank you ever so much to everyone who answered my question. I've been racking my brains (unsuccessfully!) for ages... and going round in circles, thinking I was doing something wrong.

    I do feel that, a lot of the time, I just want to struggle through and try to cope. With my family history (parent with mental illness, child carer) I have grown up very used to self-sufficiency, and the feeling that I have to deal with my own problems. I do not come from a very emotional or "touchy-feely" family background, and I grew up understanding that if I ever had any problems, I most definitely was NOT to ask my parents for help or advice. Thus, I guess I've just got used to "going it alone".

    That's why I found it so fantastic when I discovered this forum. It was just brilliant to be able to discuss things with a group of women who KNEW EXACTLY what I was talking about, and had THEIR OWN experiences of Endo. It's SO MUCH EASIER to talk, here, because the people like you, who I am talking to, really know what they are talking about. I finally don't feel like I have to endlessly try to explain myself to people who have no idea what I'm talking about.

    I can't describe what it feels like to be able to talk to people who just "get it". Who know what you are going through. Who are supportive, and have good, common sense advice to give. Women who share their experiences freely and openly, and who have lots of knowledge and ideas. I guess the more us women with Endo talk together, and share our experiences, the more we are also pooling our knowledge. Many of you have methods of coping, and of dealing with your Endo that others (like me) have not yet tried, or heard of - and vice versa. Some have tried treatments that are unfamiliar to others. That's the great thing about this forum; there's always some new piece of information there, something new try, which makes you feel like you have a heck of a lot more options (which you need, when you have Endo).

    So, thanks to all of you... I've read through things a few times, and I've also gone back over my own advice to other people. Which has lead me to a common sense response. I'll have my next lap, see what the outcome is. If it's Endo that they can easily remove, then they will do so (good). If it's majorly bad Endo, then I'll discuss the possibility of further surgery after this op. Either way, I then know what I'm dealing with. I'll also ask to see my medical notes so that I fully understand what I'm up against (nothing remains hidden) and can make the best decision possible about future treatment. I'm resolved now that this is the best, and most sensible way forwards. And I know that I'm not alone in what I go through... so if ever I need a chat there are always plenty of helpful women on this forum I can talk to.

    It's MUCH BETTER talking to YOU, because you understand. As far as family are concerned... my hubby is supportive, and the rest of them who don't want to understand... well, I'll stick to telling them as little as possible, and instead concentrate on my healing. What they don't know, they can't ask stupid questions about... and I don't have to endlessly keep trying to explain things!

    Thanks for everyone's help. I'm going to keep using this site, as it is a wealth of first-hand Endo information and advice. Now, just to keep myself calm in the build up to surgery...

    Best wishes,

    Elaine Ellis. x

  • Hi I am glad that you got calmer.

    You were talking about your family that you don't talk about Endo to your family. Well I don't either. My mother had me and my brother when she was in her 20's without difficulty and she didn't have any woman's problem. She doesn't understand what Endo women suffer. She knows what I told her before what my symptoms are but she doesn't really understand what I am going through every month. I am in pain somewhere in my body most of the month and these thing is only shared with only with Endo people. Like I don't know how painful heart attack is. So I stop telling my mother every single thing I am getting as I live far away from her now anyway. I only see her once a year. She just get worried and both of us get unwanted stress.

    My husband is very supportive and understanding. I tent to talk about what I learned in this site or on the internet nearly everyday if I am not careful as this Endo shares most of my life at the moment, sadly. Even he can't cope with everyday update so I try to back down.

    So this forum is very important for me. I can ask a question when I want to. I can post something what I think silly but people reply with very warm words.

    I think I am a bit too emotional as I am on period now.

    I hope your next lap goes well. I am thinking of you. Take care

    xxx

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