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Endometriosis UK
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More baffled doctors...I give up!

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Yet again I read of doctor's incompetencies and ladies battling endo having to take on a very lonely, long battle to be heard. If you want something done...do it yourself. My endo was finally discovered after 23 years, 15+ years of suffering crippling chronic fatigue, no quality of life and significant pain and being simply told by GPs it was all in my head. Articles like this make my blood boil, why is it up to us to diagnose ourselves in this day and age. Good on this amazing lady for researching and diagnosing herself, this happens far too often, how long do we have to continually read stories like this before the medical profession wise up and act?

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I'm the same sez73. It took me 18 years to even find out about endo been passed from pillar to post and told constipation and can't find nothing my dad thought I was getting bullied because I'd be up in middle of night in pain he'd take me hospital and. They'd find nothing or constipation

Fatigue has been by far the worst iv had no life because of it fall sleep in class I did soon as home from school I'd sleep when all my friends and siblings were playing I'd be sleeping. I'd bleed through clothes and my back would hurt real bad when I did pe my stomach would almost pull Like I'd pulled a muscle and I couldn't stand. It was horrid. Then after I finally had a child and stopped breast feeding. The pain hit with a vengeance I looked up dt Google and all I seen was endo evetywhere. I was happy and I was angry. Why had this not ever been mentioned to Me. Diagnosed myself drs rolled there eyes and reluctantly did tests referred me and in Feb this year at 32 got diagnosed although I believe they've missed some due to a band going from belly button to bowel area. Iv booked in to see a specialist in Manchester next month. So hopefully get on top of this and have my longed for 2nd child. It's heartbreaking because I feel iv developed other conditions due to been left so long to think this was just my normal. I feel like I'm very old with pains in legs hips back and hands that have been developing over the years and theyre now stopping Me from sleeping. Fatigue pain and indomnia is really not a good combo.

Sorry for the rant it's just too often this is happening. One thing iv noticed though is girls are getting diagnosed earlier. A few on here have popped up recently so hopefully it's going to continue. So they don't have to go through the same ๐Ÿ’ฉ we have.

๐Ÿ’—๐Ÿ˜˜๐Ÿค—

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It's atrocious isn't it. There would be uproar if any other illness was being diagnosed so late yet it seems ok for anyone suffering from endo to have to just grin and bear it. Unless you have endo, you'll never understand how bad it is or the impact it can have. So many times I just hear terms like "women's problems" and it is so insulting, it doesn't even come near to the damage endo can cause, especially if left untreated, I was near kidney failure due to endo completely blocking off my ureters.

I'm sorry you had to suffer too. Even when we tell doctors what we suspect, we are met with derision, it's appalling. I'm glad you managed to have a baby and got some relief from symptoms while pregnant, but not good news to be hit again afterwards. I hope with the specialist's help you get your longed for second baby. Unfortunately I could never get pregnant, think too much damage was done and left for too long. I guess you can live life feeling very bitter and twisted but you have to try and move on don't you, but I will never forgive my GP for fobbing me off and worst still making out like I was imagining all the pain, never have I been more insulted. I don't know if feeling like no one believed me was worse than the pain itself sometimes.

To finally get a diagnosis at least leaves you feeling vindicated, but you're still stuck with the consequences aren't you. I've had bowel related endo amongst many other locations too and I know how horrific it can be. I saw a well known specialist in Yorkshire, unfortunately he's in the process of retiring now and not taking on any new patients or else I would have recommended him to you. I hope your consultant in Manchester is helpful. I travelled the world in search of a good surgeon and it took me 8 years to find one. I was operated on by the top specialist in Australia but he made me worse. It is a never ending battle and a very misunderstood illness.

No need to apologise ranting, it's entirely understandable after what you've been through. While at least young girls are beginning to get diagnosed earlier, I'm also aware it is often a much more severe strain of endo seen earlier, it does seem to be getting worse and I would give anything to find a cure or for doctors to understand more thoroughly how it develops. Hopefully in our lifetime we'll see some improvements.

Keep going! x

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Oh hun. Sorry it got you that bad. That's horrific. It's awful to know a Dr can look at you in pain and believe your making it up. It's the most mentally disturbing thing ever I think. We trust them to know and care for us if they believe something is not wrong. Then we start to doubt our own selves. I know I did I know my dad did too if he was alive when I got diagnosed I know he would have finally understood all them years ago what it was I was feeling.

I'm sorry you haven't managed to have a child ๐Ÿ˜” it's heartbreaking to think you maybe could have if these professionals would have diagnosed you earlier. It's really quite complex endo and what the Dr's understand of it after I found out myself about endo I asked my mum if any of our large family had it and she said my aunt had it (she passed away now) they told her she'd never have kids and she had 3. It's bizarre.

Bless you you've been through the mill haven't you? Like I said to you yesterday "what doesn't kill you makes you stronger" you are one strong cookie and I admire your ๐Ÿ’ชstrength.

They do really need to find a cure though instead of spending crazy money on sending rockets up in space when there's so much suffering going on down here.

One thing though I had real bad bleeding in my urine on and off my period constantly and then while searching for something to try and rid of my dense band and partially blocked tubes I came across serrapeptase and although I don't know for definate if it's got rid of band or blocked tubes (I think it has my tubes because iv managed to fall pregnant but lost it) I have no blood in my urine any more. It's gone that was either endo or ic I think they never got to bottom of it I rid of it before they found it. Give it a look up kimttcnumber2 worked wonders with it in just 4 weeks. I take it now in the hope that at least any scar tissue I have or develops goes and maybe all my problems will eventually go with the help of that.

๐Ÿ’—๐Ÿ˜˜๐Ÿค—

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I'm taking serraptase too. I'd heard about it a few years but thought it too expensive. I was due to have a partial hysterectomy in October.

Then in July I was rushed into hospital where the doctors kept saying I have a pid. The worst 8 days of my life, the pain was indescribable. My sister kept asking them to do a MRI but they said it was no use in my case. My inflammation levels were so high they couldn't get my temperature down nor get rid of my infection and I felt as though my stomach was burning up. I had one really great gyne who explained what had been done to me and she advised that because so much scar tissue had formed due to my infection operating on me then would be a terrible idea.

When I got out my gp arranged another appointment for me with my consultant at Queen Charlottes. She then had a full blood work out carried out for me, blood tests and arranged a MRI within 2 weeks. My blood and swabs came back as negative with jo infection at all so I didn't have a pid. But the MRI showed endometriosis, my bowel is stuck to my uterus and my ovaries and cervix have adhesions too. All these years....over 30 I've been in pain and because I thought doctors knew better I just went along with any suggestion.

I started serraptase as soon as I was told I had endo ....wish I had started earlier. You do have to do your own research though...I'm praying for you both,

Much love

Windancer

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Awwww bless you. This disease has a lot to answer for. I started taking just after I found out I had endo (well after it had been confirmed) such a dreadful situation you've been in. When I read your stories mines is nothing compared. Its the fact of trusting doctors too much. I think iv seen so much go wrong in my family regarding illnesses and even death that that's what made me question doc's seriously but the most annoying thing is having so much symptoms to talk about and not being able to cover them with the gp because of time and it feels like they stop listening to you as your talking and already have in their head what v they are going to suggest prescribe etc. I don't know. But one thing I do know is our own research is vital because no one is going to care about us more than us. Thank you for your message and hope serrapeptase helps you too hun. Big hugs ๐Ÿ’—๐Ÿ˜€๐Ÿ˜˜

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You have been through the mill haven't you. It's heart breaking to hear so many ladies battling. I too had my bowel/uterus and ovaries stuck along with my ureters so I can sympathise greatly with you. Good to hear your feedback on serrapeptase, I'll do some more research...being that I continually have to do my own research on this horrible illness as no doctor helps! I hope you are feeling much brighter now? Thanks for your feedback xx

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Thanks v much for the info on the serrapeptase, I'll look into that. I had total peritoneal excision at the end of 2015, it was a very brutal long operation and it took me almost a year to get over it, but it completely rid me of all symptoms for about 8 months which was so lovely, I saw how the other half live! Unfortunately the endo started creeping back into other areas and I have suspected endo on my diaphragm as well as adenomyosis now so I know whatever I do I can't slow it down, I apparently have a very aggressive form unfortunately. I do know it's hereditary, my mum had it but never told me, she had twins in her early twenties but did go on to have a hysterectomy in her early 40's. I have a twin sis who's had 4 babies no bother at all, her last being at 42 which was pretty hard to deal with as you can imagine. The world is very unfair who it chooses to pick out and dish the hard stuff to.

You're absolutely right that it can really play with your mind when you're not believed. I really started thinking I was going mad when repeatedly told by doctors there was nothing wrong and my leg/back/muscle pain etc was all in my head. It really can do a lot of mental damage that which only goes to increase stress and increase endo symptoms, it's a vicious circle isn't it but at least we know what it is we have got and can take some control in reading up and trying things, doctors sure as hell won't think outside the box so it's up to us!

Thanks for your kind message admiring my strength, it sounds as if you've had your own battles too, we're all made of strong stuff on here, you have to be tackling endo and infertility, the fun never ends hey!!

I hope you find relief in your symptoms, perhaps a reduction in the scar tissue will help, it just causes so much damage doesn't it.

Sx

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Awwww hun. That's really awful for you to go through. Your ops the aggressiveness of disease and your twin sis. I'm sending you a massive ๐Ÿค— hug. My heart goes out to you. I don't know how I'd cope with all the pain you've been through. My endo is supposed to minimal but it really doesn't feel it one bit. I can't imagine how you feel.

The mental situation is real hard. My life exists of my hubby and my daughter my mum every now and then and my sis but to be honest it's me my hubby and daughter and when I go to mums it's to help with my daughter and I'm not socializing at all even with family. It's hard. I can only imagine how hard it's been for you.

That's it stress is a big culprit. I'm all v for trying new things and natural is my aim. Trial and error until I hopefully get the life I so incredibly want.

I hope you find some part of that life back soon hun. I'm here if you ever want to chat ever. ๐Ÿ’—๐Ÿ˜˜๐Ÿ˜™

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Yep, it's been quite a long road that's for sure, and still not over, hopefully one of these days! Thanks for the hug! I guess we cope because we have to, you choose to live and keep battling and you have to take what is thrown at you but it makes life very hard and tiring having to fight all the time. Just because your endo is supposed to be minimal doesn't mean you can't suffer as much pain as those of us with very aggressive forms, it can work in such mysterious ways. While I had terrible chronic fatigue and back pain for so many years before being diagnosed, in the early days I still think I got off quite lightly compared to the more traditional symptoms, it just shows how you can be totally riddled with it and sometimes have less symptoms than someone who has a tiny bit of endo, there is no rhyme nor reason to it. Whether you've got a lot or a little, everyone deserves the sympathy and respect of living with a chronic inflammatory condition. As you say, stress is a big culprit and can makes symptoms worse, but it is very hard to lead a totally stress-free life isn't it, no matter what changes you make. I hope you eventually get the life you deserve. Thanks for all your support x x

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Your right I know just the word minimal registers in your brain as nothing.

Sure is not nothing. The chronic fatigue has got me bad that's one of my main ones over the years.

It's true we don't have much choice to carry on no matter who's with us or not we have to try not let this rubbish beat us. As much as we feel to at times.

Thank you for the chat and hope you very soon get some pain free days and are able to live life to the full. I'm here any time you want to chat just message me. Take care hun ๐Ÿ’—๐Ÿค—๐Ÿ˜˜

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Thanks for your kind message, much appreciated. Re the chronic fatigue, I noticed a difference to it the first endo surgery I had where it was discovered. I woke up so woozy from the anaesthetic but I could tell instantly my fatigue had gone. I was elated as this fogginess/heaviness and aching I'd had for over 15 years suddenly vanished after all the disease was removed from y body. It was that quick and I shall never forget that feeling. Unfortunately as the endo returned, so did the fatigue, but after each surgery i have noticed a big difference, just shows what it does to slow down your body hey. You just have to try and pace yourself as best you can but I know how hard that can be, and how frustrating too!

Have a good weekend love x

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That's really interesting. Maybe what they removed wasn't all of it. I think the band they found and didn't touch is maybe hiding some. Thanks for that hun.

You have a lovely weekend too ๐Ÿ’—๐Ÿค—๐Ÿ˜˜

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Yes, the more i've had removed the bigger the difference in fatigue levels I've noticed. The first op was when they diagnosed it in Oz and said I was riddled wth over 20 years worth of illness, they couldn't remove all the endo as some was on my uterine artery and too risky, but I did see a good result with what they did remove. As you'll know endo does a good job of hiding very well and I guess it's impossible to say you can categorically remove 100% of it. I do believe my endo was 100% responsible for my fatigue though. Nasty piece of work isn't it! Happy weekend xx

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Bloody hell. I can't imagine being riddled with it. I know what you say is right about how much endo there is and the pain impact. Just the thought of being riddled for me is like not even making it down stairs on a morning. Too much. I feel for you really do.

Got gp today to discuss these bone problems that's progressed over the years flipping headache that scares the life out of me. Happy weekend to you too hun ๐Ÿ’—๐Ÿค—๐Ÿ˜˜

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Itโ€™s just such a horrid phase โ€˜riddledโ€™ isnโ€™t it! I feel grubby!! Thanks for your compassion, feel for you too.

Good luck with the GP-not sure if it helps at all but I used to get really awful arthritis/rheumatism aching feeling pain in hand joints, I started taking B12, my GP said he wouldnโ€™t even test for a deficiency so I paid privately for a blood test....I was deficient so yet again I diagnosed myself and am doing what I can do to help myself! Anyway after a few months taking B12 I noticed a significant improvement in my joint pain. Just thought Iโ€™d let u know if itโ€™s any help. Good luck with your appointment, I hope they can help even if Iโ€™ve lost all faith in medical profession! X

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I have too but my hubby keeps nagging me to go. Iv been taking b complex for months now aswel as multi vitamins and their whole food ones too. Thanks for info still could be I know I had a malabsorbtion problem last year so maybe again. Thanks hun means a lot. Take good care and keep strong I know you are a fighter which I admire loads ๐Ÿ’—๐Ÿค—๐Ÿ˜˜

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I had some tests in Oz which revealed I had the MTHFR gene (you can get different mutations of it which can affect different things to different extents, can cause miscarriage issues too) anyway to cut a long story short despite me taking loads of extra B vits & folate, I was never absorbing any of the goodness & still showed deficient. I started on Hydroxy B12 which is an easier form of B12 for people with MTHFR & also folinic acid instead of folic acid, certainly saw some difference but you never know how linked everything is or not I guess. I cannot metabolise โ€˜normalโ€™ B12 or folic acid but can with these other forms I take. A huge proportion of your immune system is stomach based and Iโ€™m sure malabsorption is affected with endo/immune system under stress etc.

Thanks for your kind text, v sweet of you, u sound a fighter too! X

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Thanks for that I'll look into it. Just got back from gp she's a good listener I explained my issues and said to her I really need her to listen told her about my fatigue and how bad it's been from a young girl. ( to the point falling asleep in class and not joining in fun holiday's instead I'd be sleeping) she really listened and accepted I'd been robbed off with depression from a young age. She is also taking bloods for my bones checking calcium and vit d etc go see her when results are in for a referral to rheamatologist and cfs clinic. ๐Ÿ’—๐Ÿ˜˜๐Ÿค— didn't know they exsisted xx

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Glad sheโ€™s taken you seriously and listened, thatโ€™s great. Hopefully you can get a referral for more info and get some help. X

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Didn't know cfs clinic existed I meant. I know it's good to find ones that listen. Iv found in the past they listen more when you come along with support. But this gp seems to listen loads. Thanks for your advice c and support take care hun and have a lovely weekend ๐Ÿ’—๐Ÿค—๐Ÿ˜˜

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I think that endo gets marginalised because it is a women's disease. Also it's not visible -and there is very little media coverage considering how many of us have it. It touches on very personal and sensitive parts of our lives so I guess people don't like talking about it.

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I agree love, but just because you can't see it or often the impact it has on women's lives shouldn't mean an excuse for ignoring it I guess. Breast cancer is a women's disease, yet that gets the coverage it truly deserves, that's still personal and sensitive, why can't endo be the same I wonder. Considering I was told my endo was pretty much growing like a tumour but it "at least wouldn't kill me" was hardly much comfort! I sometimes wished I had a more tangible illness. It's amazing the difference in people's reactions to the significant pain I've had after big endometriosis operations, to their reactions to my recent miscarriage. One condition people can recognise as heartbreaking, the other one they can't.

People felt uncomfortable taking about mental illness yet that is starting to begin to become a little more acceptable in this day and age, I can't see why endometriosis can get the coverage it deserves, it is so far away from simply saying it's "women's problems". The severe secondary issues the disease can causer just not highlighted, instead if endometriosis is mentioned in the press it is immediately followed by it being described as a "common women's illness", patronising and belittling to say the least! I hope one of these days the awkwardness of it being a women's illness will subside and people won't have to suffer like we all have had to. Too many GPs are not even aware of standard markers to merit more investigation and that's scary. I hope you are ok and managing the pain. Thanks for your comments xx

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Hi Sez73 I totally agree with your comments. This is a horrible disease and there is need for MUCH more awareness raising - not least amongst the medical profession. I hope that you are bearing up in spite of your pain. XX

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