No relief whatsoever from my symptoms - feeling I have "hit a dead end". What on earth can I do now?

Feeling pretty unhappy at present. As some of you may know, I have Endo, and I've had 4 lap surgeries so far to try and deal with it. My most recent surgery was March this year.

I really don't feel I've ever been given much information (or the truth) about my Edno. All I can tell you is it took from 2002 - 2011 fighting for a diagnosis (my original Gyane was useless, and misdiagnosed me). When I finally got my first lap (April 2011), it was confirmed I had Endo, but the hospital I was under (Blackpool) simply told me afterwards they had removed it all, and discharged me with NO follow up! Not long afterwards, I ended up on several occasions in agony at A&E - literally doubled over, and could not move due to searing, ripping back and pelvic pain. The hospital refused to discuss Endo, and kept trying to say it was muscular. I ended up on crutches, and taking Oromorph!

I then did a lot of research on-line, and found an Endo specialist centre that I demanded referral to, as I was still in a lot of pain. I also have other ongoing symptoms including frequent urination or feeling of needing to urinate; diarrhoea (worst @ menstruation time); MAJOR bloating (tummy looks pregnant); bad water retention (especially in my fingers, which look like red sausages and go all clammy); back pain; nausea; gas; lower pelvic pain; fatigue... ALL these symptoms are still present today...

Anyway, I had 3 further lap surgeries at the specialist centre. Turns out that Blackpool only did laser ablation and had actually left Endo present. They had missed the fact I have deep infiltrating Endo in my utero-sacral ligaments; so more recent surgeries have included radical excision, or so I've been told. During the last 2 surgeries, I had ureteral stents (and ended up in bladder urinary retention), I also had a bowel prep. However, I was never really told fully what they expected to do. And afterwards, I've never really been sure what's been done.

Nobody has ever told me what stage of Endo I have. I don't really feel I've been told fully where it is, either. At each appointment, I've been shown different images of my Endo. All I know is it was in my Utero Sacral ligaments and Pouch of Douglas area, and somewhere near my bladder and bowel (possibly ON them). Before my last surgery my Consultant seemed anxious about doing more surgery due to risks of adhesions, and possible bowel perforation. However, none of the information I am given seems clear; and I tend to get evasive answers to questions.

After my most recent surgery, the specialist told me he thought he'd cleared all my Endo (but then he added he can't guarantee it won't be back). He was keen to discharge me, and I felt a nuisance for wanting to stay on his books, so I reluctantly accepted discharge.

However, I still had bladder and bowel symptoms, so I was referred to Gynae- Urology, who I'm still seeing. They recently did urodynamics tests, and I'm waiting for a further appointment. The Gastro consultant also did tests, but said they could find no problems inside my bowel that would be causing the diarrhoea, so they feel the issue is EXTERNAL (they have discharged me - saying they think my Endo specialist should follow up).

I have had a really bad week - getting up at night to pee. I had diarrhoea this morning with bad stomach cramping. My tummy is so bloated it feels tight and tender to the touch. When I had a shower today, the water hitting my tummy was painful and made me feel sick - it also triggered diarrhoea. I also feel nauseous, and fatigued. I have REALLY BAD water retention in my fingers (which even my Asthma nurse commented on during my check up), and a wheezy chest. My Asthma nurse, and chest specialist are concerned I may have lung Endo (as my symptoms get worse @ menstruation, and I have pleuritic pain on the right side).

I am unable to get through a day without pain killers - Ibuprofen, Paracetamol, Aspirin or Cocodamol. Today, even these are not helping. I'm also concerned that, despite my diarrhoea and loss of appetite, each time my GP has weighed me they say I am gaining weight. What confuses me about this is that I still fit into all my old clothes (no bigger than size 12) - and that is despite the bloating and water retention. If I believed the GP, I would have to be at least a size 16! To add to this, the GP thinks that because I am not losing weight, I cannot have any serious health problems!

I am at a dead loss what to do. None of my Doctors seem to communicate with each other, and none of them seem to think they can do anything to help. They all just discharged me while I still have symptoms - it's like each one thinks somebody else should be sorting things out! I've tried a Tens machine, the Endo Diet, painkillers, surgery, the Pill, the Mirena... nothing seems to be working. I've reached a point where I feel worn out by all this - AND I STILL DON'T EVEN FEEL LIKE I TRULY KNOW WHAT'S GOING ON WITH MY ENDO.

I'm usually quite a tough person, but this is really starting to frustrate me. I even cried in the shower this morning! Family and friends just DO NOT seem to understand any more. They seem to think I'm coping; and they really are NOT interested any more in hearing what is truly going on. They just keep telling me to go back to the GP. Fat lot of use that is!

Oh! Help!

7 Replies

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  • I'm not sure how much help I can be but I just wanted to reply to show my support to you.

    I've just seen a different specialist at the same provessional Endo centre. The male specialist I saw previously was useless... Infact despite me writing to request that I see him, I only ever saw one of was his registrars. The lady specialist I saw on Monday was so different. She drew diagrams and explained fully my extensive infiltrating Endo, adenomyosis and adhesions. I also have a "cystic fibroid" and nodiles on my bowel.

    I've been very lucky that I've had children. So with the lady specialists guidance, I have decided to have a hysterectomy, right ovary removed, uteralsacral ligaments removed, Endo cut and adhesions cut. I will also have my bowel "shaved"!

    I have made a real nuisance and demanded the opinion of three doctors. I've chased up referrals and I'm sure all the secretaries are completely fed up with me ! But I don't care... This is my body, my pain and my life.

    For you my lovely lady.... my advice would be to make a complete an utter nuisance of yourself. Demand an MRI scan to see what is going on with your chest. Demand further gastric tests. And if you aren't happy with one doctor go to another. And then another one until you are Completely happy... Also request copies of all your previous medical notes and surgical reports.

    We can never be completely free of endometriosis and we are living with a chronic condition. But we deserve great treatment from professionals who show us dignity and respect. These professionals are accountable to us!

    I sincerely wish you well and hope you shout as loud as you can to be heard!

    Barbara x

  • Delighted to hear your appointment went well and that the next step is ahead.Do you have any idea when the surgery will happen? I had my pre op assessment on Monday for hysteroscopy and biopsies,so at least now I can take a cancellation.For the moment all endo discussion is stopped due to the possibility I have malignancy,so I may be having hysterectomy anyway.It has been a real mess as thiswould never have been discovered if gynae hadn't sent me to a general surgeon saying it wasn't [possible to do any more surgery without significant risks of making me worse.I am feeling hopeful as they have said that there is no abdo lymph node involvement,so if cancer then it is still contained though causing pressure on bowel and bladder.It may be fibroids but the fact that they said I needed an urgent hysteroscopy is worrying.So much uncertainty.I think that is worse?

    Did you say you were a nurse or have I confused with someone else?Maybe you know how to work the system better?I seem never to get past the consultants secretaries,as in our case they seem never to answer the phone! Sometimes I have wondered if a letter to consultant would be an easier way?I am not pleased that gynae is not doing an exploratory lap( iys 2003 since my last one) at the same time as the hysteroscopy as my gut feeling is this is endo and possibly adenomyosis.I am having a mirena put in at same time for pain relief so am willing,if a little apprehensive about tring this.Dont like idea of something foreign inside me as I am very allergic to lots of things.

    GOOD TO HEA rFROM YOU BOTH- Elaine and Barbara.

  • I agree with barbara ask for a copy of all your medical notes from your gp it will or should all be logged!

    I understand where your coming from you can feel like your going mad...

    What I would say about your swelling is have they checked your blood?

    it sounds as if your kidneys may not be functioning properly Especially as you have had stents.. Call your doctor ask for a blood test to check your kidneys .

    Good luck you aren't alone.

    Sharon

  • I had been wondering how you are as you haven't been on forum in a while.So sorry to hear of this mess you are in -it just sounds so very like my own story.I feel conventinal medicine divides the body into bits and specialities and no one seem to really look at the whole picture! I have spent my whole life from age 18yrs being passed back and forth fro different specialists,pain clinics,etc and other than saving me ( after misdiagnosing) from death with Meningitis,I feel every other condition I have is a total mystery and I do feel they think its all in my mind or that I enjoy this very limited and painful life.Oh I so feel for you and every other lady who has to go through this.Since December I have been from gynae to general surgery,who refer me back to gyna,and now gynae saying the bowel pain is not endo(despite not having a lap since 2003_) so now its a gastro specialist to be seen and another referral to pain clinic.I am awaiting my hysteroscopy re womb and cervix abnormalities and don't know if this is connected in any way to the endo.The thing is we are in an accredited Endo centre,so I have no idea why the whole process is so unlinked.

    One suggestion -can you afford to see a herbalist? I have been seeing a medicinal herbalist for a year or more and she has been the only therapist( they are very highly trained) who has looked at my entire life history - medical,social,everything and whohas taken the time to make links between all my chronic health issues.Basically poisoning from antibiotics ,pills ,allergies,leaky gut ,stress and inability of the liver to detoxify at stage 2.

    Second suggestion as Barbara says -keep on fighting.You are an intelligent,articulate lady .However I know exactly how you feel as chronic illness and pain reduce us to much lesser and needier personalities.Try to go with your gut feelings.I am not terribly assertivebut I am articulate,but find when faced with a doctor who is doubting my gut feelings I cave in ! eg meningitis rash which I was told in no uncertain terms was a viral rash and nothing to worry about,numerous ovarian cysts treated as UTIs ntil they burst.When you are so poorly it is hard to be strong and assertive as really you just want someone to make it better.

    I am phoning ,y Gp tomorrow( she is very supportive but tends to say follow the gynae advice) to ask for my recent gynae and Ct scan reports,as like you I never seem to know juts what is being said about me.We are all entitled to view or have copies of all reports and consultations but few of us ask.

    Can you take someone to Gp to support you? One tactic( not that I thought it was a tactic-I just was at the end of my tether with being awake all night with so much pain and NOT being allowed pethidene which is the only thing that works for the pain that Im not allergic to.I just broke down and said I had actually wondered how many dihydrocodeine I could take to get the pain away as I just wanted to be knocked out.Then was given 10 pethidene tablets to take for worst times and was given a sleeping tablet which works a treat to get me off to sleep before the pain kicks in and I need yet more painkillers.Sometimes if you are normally a strong person,showing your vulnerability and just how ill you are feeling makes he doctor sit up?

    Could you have inflammatory bowel disease perhaps or an ulcer from the anti inflammatories? One thing I am trying is omneprazole as it struck me I might have a duodenal ulcer,even though the pain is lower down and going right down the bowel.I asked a locum doctor to consider this and she was very dismissive BUT she has given me a months trial and after only 3 days my pain in the upper lhs( which I have taken to be endo on the bowel orin it) has improved.Not one doctor has suggested this and this was a sudden ah haa moment as I saw that an ulcer causes a deep gnawing ,cramping ,glasslike ache which is what I always asscociate with my endo.If it is an ulcer of even just an inflamed gut from all the pills Ive been taking,I am annoyed that this has just been ignored.

    Am so sorry that this last surgery hasn't fixed or at least radically improved things for you but keep fighting and we are all here to support you.Sending you a great big hug.brave lady.xx

  • Sorry not to have replied sooner - I so wanted to reply individually to everyone who responded, but here I am, and I just don't feel up to it!

    Today has been a pretty naff day, to say the least. Up at least 4 times last night to go to the loo! Woke up in intense pain, and hardly felt like I'd slept. Felt bloated and sickly. I took some painkillers and put on my Tens machine, and went back to bed! Must have been so shattered, I slept until midday!

    Up and about, now, but had to take more painkillers. This is NOT good for me, as the only tablet that seems to be touching my pain is Codeine - which I rarely take, as it usually knocks me for six (I have a nasty reaction to Codeine; makes me nauseous, dizzy, tired). I don't like taking loads of painkillers, anyway, but usually end up resorting to them on a daily basis.

    Haven't visited the Forum as much recently, as I just felt so grotty. I'm convinced that my surgical incision scars are causing problems. Feels like the one just above my pubic bone is stuck inside to my bladder. I'm finding this area, and my belly button incision area, increasingly painful. It's not easy to stand up straight at present, as things feel like they are "pulling" inside.

    I'm convinced there remains some Endo present, as all my symptoms are still there - no different from before my surgery (if anything, slightly worse). Can totally identify with you "daffodil", as I'm also at an accredited Endo centre, but things seem to move VERY slowly (if at all), and NONE of the processes seem to be very well linked. I'm now seeing Gynae-Urology to try and sort things out. Personally, I don't feel any closer to knowing what's going on for definite; nor do I feel any closer to getting much relief.

    I'm utterly puzzled as to whether this is still Endo, or whether it's adhesions, or perhaps inflammation of another kind? Because a lot of the pain is focussed in my back (sort of waist area), and is very sore until relieved by peeing (which I do a lot!), I do wonder whether it's kidney related. However, I haven't ruled out the possibility that it may be adhesions, surgical scarring, or irritation following the surgery that is affecting bladder and bowel. Still, that would not account for why the symptoms were present BEFORE surgery!

    I just feel like you end up spending ALL your time going from Doctor to Doctor - Specalists, Gynaes, the GP, Urologists... on and on... with NO real answers. I've tried the Pill, the Mirena, laser ablation, radical excision... I've had lap surgery, physiotherapy, tried a Tens machine, and painkillers... It's just feeling like an endless succession of trial and error... all just offers temporary relief at best, and nothing more.

    I know that I am usually pretty tough and articulate. I see myself as not being the sort of person who gives up easily. So, I'm finding this pretty frustrating now, as I feel I'm getting to the point of having exhausted many of my options. My Endo Specialist clearly presented as not very keen to do further surgery... so, the only options that seem left are:

    1. manage it myself without help

    2. just rely on painkillers all the time (plus hot water bottle and tens machine)

    3. go back to specialist and demand that he does something else (no idea what, and can't imagine him being very keen)

    4. seek a 2nd opinion NHS or private

    5. try alternative therapy (I'm considering acupuncture or a chiropractor)

    6. accept a hysterectomy or hormone treatment to induce a menopausal state

    O.K. - there are still options. I think it's more a case of I'm tired and fed up with this. I don't feel up to sorting through the options, at the same time as dealing with constant pain, fatigue, nausea, upset stomach, bloating and water retention (which are daily constants). Even typing this, I can feel my stomach is tender, sore and bloated. My surgical scars hurt, and my back is throbbing.

    TRULY FED UP. It's starting to pee me off considerably, as I'm not even looking forward to going on holiday soon (which is NOT like me). I'm rather DREADING having to travel, and DREADING not knowing if I'll feel tired and achy all the time. I rarely feel like going out much - eating out is a nightmare! I'm trying to keep going out walking, and doing other normal activities like housework, shopping, study, etc. but the next day I really pay for any activity I do! I can't get my head around the fact that I feel WORSE now than ever!

    Heck! SO SORRY to be moaning and grumbling!

  • It's hard to stay positive when everything hurts. My back has been really hurting for 2 days and just want to feel normal and have some energy again. I'm sure we'll get there - it's just such a long process. Don't give up. X

  • Hope u get sorted out soon I feel for you I have had a carry on gettin diagnosed with endo and then nothing has worked for me. As I type this I am doing bowel prep for op tomorrow. I had hysterectomy in march and then emergency op end of march as I had grown a large cyst tht had blocked my kidney and I now have kidney damage. since march I have grown a large 12 cm cyst as last check 4 wks ago which is getting removed tomorrow. I have stage 4 endo it is on my bowel bladder ureters sciatic nerve in my hip pouch of Douglas was all over ovaries tubes n cervix hence y I had hysterectomy. I'm gettin to point where I don't even know y I bother anymore I am on oramorph and lots of other pain killers and have t use crutches t walk. I also have to use catheters as my bladder is damaged and I am unable to pass urine on my own.. I keep gettin told we have removed everything etc n then when I go for post op check n scan it has all grown bak again. I am constantly in pain etc I have to see a dietician as I'm losing about 8 lb a e

    week and have lived on anti sickness tablets for the last yr. since march 5th I have lost 5 Stone . They just keep blaming the endo but it is leaving me drained and lethargic etc if i didn't have endo and went to doc with this rapid weight loss they would investigate it but as I have endo they blame everything on tht. really hope u get somewhere soon feel free to message me anytime . I'm norm awake most the night in pain so literally message anytime. big hugs n keep ya chin up n keep fighting .

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