Feeling abit lost

Hi I'm new! I have had symptoms of endometriosis for the past 5 years and had a laparoscopy a year ago which diagnosed me with endo....finally! I had a Marina coil fitted and was basically sent on my way. A year on and I now feel very alone and lost, people almost seem bored if I mention it and it's like it should of all gone away. I'm so tired all the the time (no amount of sleep will fix it) and full off dread and panic every day. I don't particularly want to go back to the Dr's and was wondering if anyone had any advice on how to live with the mental exhaustion after being diagnosed. Thank you :-)

13 Replies

  • I'm sorry you feel down at the moment. I know how you feel, I sometimes think people tune me out to when I talk about it! It seems to me that you have not really been offered much of a treatment plan. From the stories I've read on here that seems to be a common thing. I was only diagnosed a month ago after battling with Drs for years to find out what was wrong with me. Initially I breathed a sigh of relief thinking I was now going to be looked after.. This however doesn't seem to be the case! All I was told was 'yes you've got endometriosis' this was from a different surgeon after lap ( only because I insisted on knowing ) she said your consultant will see you in 4-6 weeks. Got a letter through saying I won't even be seen for 3 months! So after researching it seems endo is best treated by excision ideally of the whole peritoneum. I went private and have decided to go full force and tackle it head on with this. All I've heard is bad stories about hormone treatment an laser on NHS and because they don't seem to see the urgency of the disease on a persons quality of life I have just lost trust in them to be honest. I wish I didn't feel this way but I really don't fancy going through years of hormonal experiments to then have it lasered off for it to come back again with added surgical scarring etc.

    I really hope I'm making the right decision as it's not cheap or a small surgery!

    Have you ever thought of seeing a endometriosis specialist about this?

  • Katietattie I'm not sure what excision of the whole peritoneum means I've never heard of this? I was told I had 3

    Area's of endo removed and that's it. I don't have any idea of grade's like others seem too and when I asked if I needed to come back was just told no. I haven't given it any thought before about seeing a specialist I thought after my operation that that was it and was under the impression it would all be ok from now on! Naive I know! What does the operation entail? Thank you for your reply. :-)

  • Mental exhaustion is something you need to see your GP about. Physical exhaustion is common with endo, but mentally struggling with dread and panic attacks is not healthy or normal and is a sign that either there is something adrift with blood pressure or hormones and possibly a sigh of depression (which is certainly a frequent bonus for anyone coping with a chronic illness.)

    All of which with the right treatments can get your mental state on the mend and feeling much better able to cope with everything life throws at you.

    Your GP will quiz you as an assessment, and may suggest some tests on your blood and hormone levels and thyroid etc. Depending on the results a plan of action to get you on the mend will be discussed. Don't ever ignore signs of mental ill health. it as important as treating any infections or broken limbs etc.

    It may be very easy to fix and quickly too, or it might be something that needs several months of gentle work to figure out the right balance of meds to suit you. The thyroid for example is a fickle gland to top up with the right hormone level, too little causes hypothyroidism and too much causes hyperthyroidism symptoms, so get your body to the GP to find out what is wrong and causing the panic and dread.

    You don't have to live with that and put up with that, without finding out what is behind it and getting the right treatment.

    Wishing you the best of luck - and please do visit your GP soon to try and find out why you are getting panicky and suffering feelings of dread.

  • Thank you impatient. I don't know whether it is a mixture of having added hormones in me as well as going through the last 5 years just not being believed. I have been worried about going back and not being believed about feeling so low as well. This is an exhausting illness.

  • I think you are right in your thinking that your exhaustion is down to stress on your body and also stress on your mind due to the long diagnosis. I got very depressed (and I had who wouldn't sleep to deal with at the same time). I started on Citalopram in March this year and it really helped with my state of mind, just calmed me down abit and helped me see things clearer. I truely believe I would not have needed this if I had been diagnosed earlier as I felt like a weak, inadequate person for years. Don't be worried if you decide to try some antidepressants, there are not many people who have to deal with such daily pain and lack of support it's bound to make the strongest depressed.

    Regarding the excision, the NHS usually just laser the endo which is like removing the head off a weed and not the root.. It usually comes back. Excision cuts the endo out removing the 'root' also giving a much better chance of it not returning. The total excision removes the entire lining around the pelvic cavity, the best specialists on this country believe that endo can be 'invisible' or 'microscopic' hence when only patches are removed they believe there can still be endo 'brewing' under the surface causing pain.

    So I didn't fancy turning into an old women (with the health implications) in hormone treatment or having multiple surgeries which can cause scarring and pain which cannot be rectified all that easily.

    I'm hoping to only put my body through one bigger operation.

    There are only a few people in the country who do this surgery, if you are interested just PM me and I'll give you details. Hope you're feeling a little better xx

  • Thank you. It's just so nice to talk to people that actually know what your talking about. That sounds really good I hope it all g:-) es well for you. My coil has cut a lot of my pain out I still get odd moments or days but it's no where near like it used to be but it's always scary when you get that first twinge of the day and straight away you think great this is it for the day, and I always find it amazing how you can learn to tolerate the general pain level to the point

    Where people around you don't even know all you wanna do is curl up, throw up or pass out! Do you have a date for your operation? :-)

  • Ha meant to put I had a baby who wouldn't sleep!

  • Hi I had a lap in January as an emergency (suspected appendicitis) but already knew I had endometriomas in an ovary. I had my second lap on Friday and at that time they drained the endometriomas again (they ended up being 5cm and 14cm so do fill quickly). When they saw me in the day unit before my op they told me that my blood count was 93 and should be 120 - 130. I was anaemic but had no idea before and was told there was a risk I would need a blood transfusion (I didn't, fortunately) but I can't be sure that the tiredness I've had is purely down to the endo and you may find the same although it is worth remembering that endo causes fatigue. Hope you feel better soon x

  • Yep got a date 24th oct! Can't wait as I'm having a rough ass week waiting for period to arrive. Plus had tonsillitis so on antibiotics too. Not a good combo!! I feel so drained at the min. My main worry about the whole thing is not getting any relief after the op. As you know after years of this you kind of give up hope I've read a lot of stories on here about people getting major improvements though. I know what you mean about just getting on with things, the amount of times I've been in the park with my toddler putting on a massive grin when all I want to do is curl up and cry is unbelievable.

    I also get major digestive pain with my endo so don't really enjoy eating anymore, infact it frightens me everytime I have a meal. I'm really hoping this will improve after op. Li look like a bloody skeleton at the moment and everyone is commenting which makes me feel bad. All I want to do is eat 3 meals a day with no pain and play happily with my son and have a good old hanky panky session with the hubby without being in pain!! Not much to ask for is it! Xxx

  • You'd think! Wouldn't ya :-) (made me giggle) I've got the opposite problem because of this coil I'm really bloated everywhere. This time last year I was 3 stone lighter! Just can't shift the weight. Have you tried any natural things to ease pain? I started yoga classes at the gym and they seemed to be really helping after a while. I stuck with it coz I was told it would help. I then missed a couple classes and went back to being in pain at first but hopefully it will calm down. I'm also

    doing alot of swimming but sometimes get a shot of pain and nearly end up at the bottom of the pool, and just try to smile through it :-) x

  • Hy,

    I was diagnosed 5-6 years ago but I have it for at least 12-13 years. I feel the same as you tired all the time even if I sleep all night in the morning is like i didnt closed an eye.

    I also panic and have moments when I am really depressed especially when I go for a check up which is every 6 months. Every time is the same story : the cysts are still there or one of them is gone and the only option is taking pills which I wont because I want to get pregnant or have the operation again which I dont really want to because I will get more scars and will be another reason not to get pregnant :( , so its a vicious circle.

    My advice will be to drink a lot of tea's, eat healthy like in a lot of veg and fruits, less meat, go to the gym ( apparently doing exercises is very good for us ) and just try to think positive .

    I know its very hard but we have to live with it for the rest of our lives, there is no cure so we might as well get used with the pain and everything else that comes with disease.

    Take care


  • Sorry you are struggling.....

    I was diagnosed last year but was told it's a small spot that fell away. It took me 9 years to he t to the bottom of what was going on. My cervix was corterised, I was sterilised as I can't take contraception and was feeling fine... until Feb this year. I started with chronic back ache and pain on the left and when passing water. I now have pain on both left and right sides, sometimes passing water or opening my bowels. I'm exhausted all the time and the stress from work (I'm a nurse in and understaffed community setting) pushed me over the edge! I have now been booked off for 3 weeks... I only have a week left. I woke this morning in agony and exhausted again. I'm now on citalopram but I don't feel tbh e benefits yet. Hoping it helps soon as I have to go back to work... The tiredness gets to me the most... I think it's because it's mentally and physically draining and it's hard to focus on the positive when you are tired. It's easy to get emotional when you are tired too and the little things get to you more... I wish I had an answer for you hut unfortunately I have not found a solution. But impatient was so supportive for me and made me realise that yes I was getting depressed and needed help....

    my hope is once the tablets start working ill be able to cope more with everything and be less emotional and more positive thus being less tired! If that makes sense...

    don't be afraid to ask for help xxx

  • Thank you for all your replies. :-) there are a lot of different pills and treatments everyone is on I've noticed. It sounds like everyone is having different cocktails of treatments till one clicks together and we're all cured (or at least it masks the pain) I did read about exercise and have tried I used to do zumba but ended up curled up in the corner a few times 5 minutes in to the lesson! So I gave that up. So far I have found swimming and yoga the best. Anything to energetic and the sharp, searing pains come! Does anyone else have good exercises that

    Have helped? X

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