Why do I do it๐Ÿ˜ž

Hi all,

Good morning ladies, happy Saturday to you all. Hope you're all having a pain free day today.

I'm just having a little moan.

I just don't learn my lesson do I. I know I can't eat solid foods every day and yet all last week I did and now I'm in agony, my Endo pains are so bad I can barely walk or do anything. Eating really does irritate my insides.

Does anyone suffer like I do by eating solid foods and does it make the Endo pains and adhesions pains worse for you? I think I have have adhesions wrapped around my bowels.

I'm going back to my liquid diet today, how I hate it at times, I feel so left out at meal times when my family are eating proper food and I'm there with my liquid food.๐Ÿ˜ž I just feel so depressed I want to cry and feel sorry for myself but can't I don't want my family to know how much pain I'm in today, they will only be stressed and I don't want them to be.๐Ÿ˜ž

Sweety.

117 Replies

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  • Hi I'm sorry to hear you are in so much pain and discomfort. I have alot of pain when eating solids but never put it down to my endometriosis. Its difficult not to show your emotions to your family as I do exactly the same as I don't like them worrying so I'm new on here but its nice to have people to talk to who know exactly what your going through. I'm in agony daily and seem to be getting nowhere. What liquids do you eat as I may try it if you feel it helps .

  • Hi alisonic,

    Thanks for the reply.

    I have Endo in my bladder and bowels, I have adhesions around my bowls too, so what ever solid foods I eat I can feel the irritation in my bowels and bladder my stomach swells feels bloated, although I don't eat a big meal, after a few bites I'm full. But I can feel it that I have over eaten with solid foods I know I need more liquids than solid foods. I have no problems with liquids.

    My dietitian has prescribed me meal replacement drinks I have to have 2 bottles a day as I'm underweight, but I've been bad and haven't done that all week.

    I steam or boil any veg I have in the house and cook fish, chicken, rice, I then blend it with little water as I don't like my liquids meals very watery then I flavour it the way I want it so it's not bland. The days I don't have any energy or I'm in agony I just have baby food.bi try and make sure I have some of every food groups in my liquid meal.

    Sometimes when I cook a family dinner I just take a portion out for myself and blend it so it's a thick consistency but drinkable. I avoid all gluten, soya, dairy, red meat, wheat. It's difficult at times but like today I remember why I stick to liquids.

    Yes my liquid meals are boring but I have to come to terms with that I can't eat solid foods all the time only occasionally, but it works for me.

    Sweety

  • It's hard because you don't want to upset the ones you love by showing how much pain you're in. But you can't pretend you're not in pain. What is the liquid diet? I haven't heard that one before. I went out for tea last Saturday and I had a glass of alcohol to drink as well as some sugary drinks (Coke). I had a tomato pasta dish and a passion fruit cheesecake. Big mistake. That was a very big no no and I payed the price not the next day but as I soon as I got home. I was rolling around in pain for hours. It then took a few days to settle.

  • Hi Moore94,

    The liquid diet is just homemade soups, or any meals you cook for the family just take out a portion for yourself and blend it to a consistantcy that you like that you can either drink it from a mug or a bowl. I'm okay with wine as long as I only have a couple of sips, I can't eat out at all I've been diagnosed with celiac disease so I'm on a glutenfree DairyFree diet. I don't really like sugary drinks, or high fatty foods either as they don't agree with me.

    I'm also getting meal replacement drinks from my dietician which I try and drink twice a day.

    Sweety.

  • Hi my MRI showed I have it around that area and I feel the same discomfort when I eat so may try it and see if it helps as the painkillers I am on are not helping

  • Hi, yeah my pain killers don't help me either but I have found a little relief being on a liquid diet. Hope it helps you.

    Sweety

  • I've been looking today at what to have as I'm a vegetarian but have downloaded the diet for endometriosis sufferers and will see if that helps. Thank you for your advice and sounds like you have a very restrictive diet ๐Ÿ˜ก

  • Your welcome, I hope it helps you. Please do let me know if it does help you.

    Yes my diet is very restricted and at times very difficult, I struggle every day, I wish I could eat solid foods like everyone else ๐Ÿ˜ž

    Sweety.

  • I feel for you ,can you not eat in moderation then? Yes will let you know how it goes and if it helps ๐Ÿ˜Š

  • thanks, yes I can, but not everyday. i do eat breakfast like cereal in hot coconut milk or if I'm having toast I put the bread in the toaster or microwave to make it more soft. then sometimes I'll have something solid to eat for dinner but not everyday. the rest of the time it's all liquids.

    some days my stomach is really sensitive so I can't eat nothing solid at all, all day.

    sweety.

  • Hi I'm sorry that sounds like my stomach,some days even touching it it is sensitive. Its a horrible feeling alongside the bloating and the chronic pain. I've looked at what I should be eating and I don't eat bread as a rule as that hurts my stomach. Becomes very frustrating doesn't it. Will discuss the liquid diet with my Dr tomorrow as still haven't seen my consultant. Hope your weekend is going well ๐Ÿ˜Š

  • Hi,

    Good luck with your appointment at the Docs tomorrow. If your underweight you can ask to see a dietitian and ask about meal replacement drinks.

    Have you tried eating gluten free foods?

    I'm down with a cold, whole body hurts, having a cold is making my Endo pains much worse.

    I'm kind of happy that I'm not the only who suffers with eating solid foods, it's nice to talk to someone else who is in the same boat as me.

    Hope you have a lovely Sunday.

    Sweety.

  • Hi thank you. I am normal weight but think the hrt are making me put weight on. Yes I have started trying gluten free foods and they do help a little but it is eating solid foods does hurt. I'm just of to work but I'm in agony ๐Ÿ˜ข

    Alisonlc

  • Hi,

    Yeah that's the bad side effects of hrt tablets.

    That's good Glutenfree foods are helping you. I'm sorry to hear your in agony and have to go to work. That must be very difficult.

    I don't work, can't work. I was made redundant in 2009 and that's when I was diagnosed with Endo. On my good days I think I can start looking for work but I know I really can't due to my pains. I do miss working, wish I could work.

    Sweety.

  • I find it harder and harder as the days go by. I've just finished work and can hardly walk due to the pain. I have no choice but to work full time as a single mum to two boys but sometimes wish I could work fewer hours. Its very frustrating,I don't think people realise just how bad it can make you feel and the huge impact it cam have on your life

  • I know for a fact if I was still working I would have either been sacked or would have given up work. Just before I had my very first op for Endo which was an emergency one I was very ill, I was in a lot of pain, my periods wouldn't stop I just kept bleeding, I couldn't eat, I was vomitting, I was constipated, I had bad hiccups. My skin actually turned yellow, The hospital kept turning me away saying it's just period pains.

    I was so weak I couldn't talk, walk, but I had no choice I had to take my kids to school as my hubby works nights, I don't know how I did it.

    I was made redundant and my health went really worse, I was glad I wasn't working at that time. Eventually I was admitted in hospital and they did emergency op on my stomach, they had to do bowel resection as part of my bowels were badly damaged by the Endo.

    With Endo we just have to go on doing what we can, we have no choice but to endure the pain. Even though I have my kids and hubby they don't really understand what I'm going through. I nearly ended my life because I couldn't cope with my pains and no one would believe me, it's only when I heard it can be hereditary that my daughter could have, that snapped me out of it and I decided to live for my daughter and be there for her if she ever gets it.

    Sorry for the long post I don't talk much to anyone about this as they wouldn't understand.

    Hope you're Monday is better than yesterday.

    Sweety.

  • Oh dear sounds like you've had a horrific time and been through so much. My pain was intermittent but I'm getting it daily now and affecting my life. I'm more upset that it was missed after my second operation when they removed two healthy ovaries

    I suffer with my emotions due to things in the past and I can honestly say some days I have felt so low that I have just wanted to disappear because one I am in pain and two it impacts on my sons as unable some days to do things with them. I am sorry you got to the stage that you felt that low you wanted to end your life and I've been there too when you feel like lifes not worth living but I'm glad you were strong enough to fight it for your husband and daughters sake but mainly yours. I know our experiences are very different but still mice to talk to someone who understands the constant pain

  • Yeah it's been a horrific and very stressful 6 years, I have realised that every year I have op to remove endo and adhesions. I had a partial hystercretomy done a few years ago, I still have both my ovaries but my left ovary is smaller than the right one. I've lost count with the number of ops I've had.

    I still get days where my depression is really bad that I can't think clearly what I'm doing. I understand that you just want to disappear when everything becomes too much, I still get so many days when I feel like disappearing. Sometimes I just want to get drunk so I can't feel anything or think of anything. It's really annoying when you take the strongest pain killers and they don't even work.

    Have you had a urine test done recently?

    The reason why I ask is because I had a urine test does and it came back positive with very high inflammation inside my body and due to that when I eat solid foods it irritates my insides. I don't have an infection, but I have a slight temperature.

    I feel so sorry for you, that you're on your own dealing with pains and working and your boys. Do you have family near by that can help you? Wish I lived near you I would have helped you out.

    It is nice to talk to someone else who does understand, I don't feel so alone fighting this terrible battle.

    Sweety.

  • I haven't had a urine sample as Dr didn't ask for one but I had some reflexology today and she said that there could be some inflammation in my bladder and something not right with my colon and rectum which was a bit worrying as its likely the endometriosis could have spread. I have family but they have other things to worry about so don't like to add my worries to it. I've always dealt with things by myself that way no one else has to worry but makes it a very lonely place. I'm waiting to hear what I have to have done yet. It gets very frustrating. How come they haven't removed it all as I was told that once all removed it cant grow back. I don't know anyone apart from people on here that are suffering with this condition. Here whenever you need to talk ok

  • I'm always getting burning and stabbing pains in my bladder and bowels so every month I do a urine test and it always shows that I have infection in my bladder. I have been on antibiotics for 4 months non stop.

    I did stop taking antibiotics for a week and I was in agony, did another urine test and it came back with high inflammation in my bladder, bowels, I have high temperature too.

    The inflammation irritates my insides when I eat solid foods. I think the Endo is causing the inflammation which spread throughout the body.

    I'm just like you not wanting to worry my family or burden them as their busy with their own things. It's a very lonely place. I'm tired of pretending that I can that

    I didn't get my ovaries removed due to my age at that time but now I'm thinking maybe they should have as i think Endo wouldn't have come back.

    Same here I don't know anyone who is suffering with endo, only on this site. It is sometimes so frustrating when you want to talk to someone face to face about Endo but can't because they know nothing about it.

    Sweety.

  • I had to argue with my previous consultant as he was very rude and obnoxious. I asked to change after years of basically being made to feel I was making it all up. Its the first time I was then asked what I wanted to do and chose the hysterectomy as I'm lucky I have two amazing kids. Again he chose to leave the ovaries in but 9 months late removed them as he thought the reoccurring pain was from them. Turns out it wasn't and the endometriosis was growing on my urethra and vaginal lining. To be honest I felt very emotional,frustrated but most of all let down by my consultant. I've come home early today as in so much pain. Sat in my car sobbed for a little pulled myself together and on school run. It's a horrible feeling being like this daily isn't it . It is difficult to talk about it to others as people don't seem to understand the level of pain and discomfort we are in unless your suffering yourself from it. May I ask how old you are ?

  • I had bad experience with the NHS consultants they didn't do any operations on me properly, I had to go to a private surgeon who did scans on me and told me how big my Endo was inside my bladder, once he operated on me he told me the operation took over 5 hours, he said my insides were all stuck together and were a big mess with Endo and adhesions everywhere. I cried so much, I was so angry with the NHS as why they didn't see how bad my insides were when they operated on me.

    I wished I had done proper research on Endo and hystercretomy. At that time I thought I had no choice and was told having hystercretomy will get rid of Endo, so I went ahead with it and really regret having it done as I would have loved more children. I have 3 children a girl and 2 boys but would have wanted at least 6 altogether.

    Sorry that you're having a really tough day with your pains, it shows how strong you are, sometimes we have no choice but to be strong for the sake of family.

    I'm having a really bad day too, been feeling so dizzy, I can actually feel the Endo back in my bladder the feeling is horrible I just want to rip my insides out.

    I turned 40 last week Wednesday. How old are you?

    Sweety.

  • I'm 39 but had hysterectomy when I was 37. I don't have faith in my consultant as I feel he shouldn't have missed the endometriosis and investigated further on second operation. I have struggled today and lower back and nether regions are in so much pain. I'm sorry to hear about your bad experience and you should never have had to go through all that. Its a horrible sensation isn't it, I was told once I was being dramatic when I said I felt like cutting my insides out. I would have liked more children but wanted the pain gone

  • I had my hystercretomy when I was 36. I've lost faith to with my NHS consultants, what shocked me was that they said to me that they don't know how to help me. The fact that they missed how messed up my insides were they didn't even apologise to me.

    No one understands why we feel like ripping our insides out unless they are going through the same pain level as us.

    I'm constipated at the moment due to wearing morphine patch and I feel horrible. Last night I couldn't sleep the pain in my right ovary was horrendous I felt like I couldn't breathe. I was so tempted to wake my hubby up but then decided not to disturb him I just breathed my way through the pains.

    i'm so fed up with these pains and having to have so many ops, I just wish it would just stop. I'm so tired of fighting with Endo pains.

    I hope your feeling better today.

    Sweety.

  • I have been on those patches but came of them as they made me feel quite poorly. I've bad a busy day and then had dentist to be told I need my wisdom tooth out but if I do then it will damage my nerves and would loose all sensation on my left hand side permanently. I totally understand the feeling of wanting to rip all my insides out as it feels that its the only way the pain will go away. What have they said they are going to do now for you ? I'm sure your husband would have been happy to support you. I miss having that someone special ๐Ÿ˜ก

  • I think I might ditch the morphine patches as I'm getting dizzy spells, can't sleep, feel even more depressed๐Ÿ˜ž 

    That sounds awful and terrifying๐Ÿ˜ฑ I wouldn't want to have it taken out. Are you in pain, can you eat on that side? I'm scared of going to the dentist, I'm a big baby when it's time to go visit the dentist ๐Ÿ˜„

    I've just started Zoladex injections for 3 months to see if it helps with the pains and help shrink the Endo.vif that doesn't work then I probably have to have an op๐Ÿ˜ž

    My hubby is there for me when I have hospital appointments or having tests done, but emotionally I wish he was there for me ๐Ÿ˜ž I wish he was sympathetic and understanding. Whenever I tell him I'm in pain, can't go out, can't eat anything he says why not? What's wrong with you now, why are you in pain? Why can't you have sex? My relationship with hubby is becoming very stressful. I feel like we are drifting apart and it's all because of endo๐Ÿ˜ข๐Ÿ˜ช

    Sweety.

  • I felt the same on the patches they made me very dizzy and didn't feel safe driving so stopped them. I haven't been to the dentist for ages as I don't like them but I've been experiencing pain so thought id get it checked. Feel like I'm falling apart. Oh right I tries them prior to my hysterectomy but they are only licenced for so many months. I hope they help you. Oh dear it does put a strain on things. I was due to get married 2 years ago but my partner wasn't very understanding and said I had turn horrible due to my mood swings and being in pain the whole time. I was then diagnosed with endometriosis. After my initial laparoscopy I collapsed in the bath and nearly drowned and he struggled to deal with me being poorly. I chose to leave as in my opinion if I had a partner I wanted him to be supportive or I would rather be on my own. I am grateful as ge saved my life that night but I had enough to deal with being in constant pain. I'm sorry your husband questions you but he will never totally understand the pain your in. Its good he attends your appointments though

  • I really hope the injections work, because I really don't want another operation. When I have an op it takes me ages to recover. 

    I'm sorry to hear that you nearly drowned and that you ended your relationship. It is difficult for the other person to deal and understand what we're going through. Its nice that hubby does come with me to my appointments, but even there he'll moan, as sometimes it's a long wait just to be seen.

    Today I went shopping with my hubby, instead of taking the car we walked it to a couple of shops I was walking non stop for 4 hours, I was in pain, I couldn't walk properly, I could actually feel both my ovaries pressing against me and was feeling itchy on the inside where the ovaries are. I pretend I was fine as I didn't want hubby to know, he'll just roll his eyes up and say why are you in pain. When I got home I just stayed away from him so he wouldn't see how much pain I was in. Sometimes he can be very negative and then that brings me down and I feel guilty for being ill.

    I'm having such a horrible evening, I  gave up on liquids and ate solid foods for dinner and now I regret it. I'm in so much pain even more. I don't know how I will sleep tonight. Not looking forward to going to bed.๐Ÿ˜ž

    Sweety.

  • I'm sorry to hear you had a horrible evening and does sound like you need to stick to the liquids to make it easier for you. It doesn't sound very good that even a trip to the shops leaves you in so much pain and discomfort. Men are not good at understanding or being empathetic at all unless its them that need the attention. You should never feel guilty about being poorly its not your fault that your feeling the way you are emotionally and physically so please don't let anyone ever make you feel that way. It was a horrible experience but it was a wake up call that I was with someone who wasn't supportive and would never be there for me when times got harder.I hope the injections help

  • Thanks, yeah I know I should stick to liquids but for some reason I just give in and eat and regret it afterwards. I just don't know how much more I can take with not eating and being in pain. 

    I've noticed now a few times that I have been shopping I'm in a lot of pain,bi can actually feel my ovaries throbbing and then become itchy from the inside. I ate breakfast, lunch and dinner today I don't know why I ate, I just feel so dumb that I can't learn from my mistakes.

    It's sad that you have no one who is there supporting you with everything that your going through. Even though I have my hubby most of the time I feel as if I'm alone. 

    I hope you had an okay day today. Remember I'm here for you if you ever need to talk about anything, even to let some steam off.

    Sweety.

  • It is difficult and I've done the same, eaten things when I know I shouldn't have done. I've woken up in alot of pain and didn't sleep well at all. Had a very long day at work yesterday and was in lots of discomfort. Yes its not a nice feeling being lonely. I have family who are supportive but they don't understand how severe the pain is and how much it affects you mentally as well as physically. Being a single mum is hard especially when feeling poorly most of the time. So you have any plans for the Easter weekend?

  • So sorry to hear that you had a rough night. Are you allowed to take time off from work to rest. Are you taking any pain killers that are helping you.

    Endo is very emotionally draining even if you are alone or with family. My family are demanding I think they forget that I have Endo and can't do much due to the pains.

    It must be very difficult for you being on your own.

    I'm planning on watching Batman v Superman this evening, although I rather go to bed with hot water bottle, today is going to be hard with my pains. I'm having hot flashes, cold chills, got a terrible headache, my whole body is hurting me. 

    Hope you have a lovely, hopefully pain free Easter. Have you got any plans?

    Sweety.

  • Hi I'm having really bad day, full of pain and feeling very emotional to the fact I shut myself away in the bathroom and cried. Just don't seem to be coping very well at the moment. I just feel like running away from everyone and everything. Ah my boys want to watch that tomorrow but yes I know what you mean about not having the energy to do anything. Yes families do not understand,my sister told me yesterday its mind over matter re my pain, I didn't know whether to shout or cry needless to say I wasn't very happy. How you feeling today?

  • Oh no! That's not good. I think we both are having a very bad day. I was in agony this afternoon I had a hot soak in the bath and cried my eyes out, that's the only time I will break down and cry, but I won't do that in front of my family. Have you taken any pain killers? If there not helping you, ask for something stronger that can help you.

    That sounds just like my mum when I first got ill, she thought it was just bad period pains and told me to be brave take paracetamol and get on with work. I was really bad once and my stomach swelled quite a lot, my mum said to me 'are you sure you're not pregnant' I got so angry at her I told her all I knew about my illness. My brother and sister don't talk to me since I became ill, they keep their distance from me. It's so sad that other people don't even try to make understand or even read up about it, if they did then they'd know how bad you are.

    I made homemade glutenfree DairyFree veggy burger and got chips from the shops, as soon as I finished eating I was in agony I couldn't move walk or talk, I got a big lecture from my hubby. I knew I shouldn't eat any solid foods today but gave in when I found out what everyone else was going to eat. I'm sitting on the sofa with a hot water bottle. I've ruined my night out I don't think I can go to the cinema now, I so want to as I'm a huge superman fan. I'm going to wait till my hubby is ready then I'll decide to go or not.

    I'm here if you need to chat. Your kids must be very young to understand what is wrong with you. I told my kids everything and told them to read up about it so they know what I have and how it effects my life. 

    Sweety.

  • I am on painkillers but they don't seem to be helping. I've seen my Dr three times over the last month and frustrated as I'm still waiting to see my consultant after my MRI scan. Its so difficult to explain to people how I'm feeling and I try to be strong but its nit easy is it. I know what you mean I am out with friends tomorrow and really hard when eating out not to eat what others are eating. My boys are 10 and 14 but I have been honest with them and they understand about my two operations but they get very frustrated when I cant do things and that upsets me. We watched it today its a great film, superman was lovely๐Ÿ˜Š Hope you have a better day tomorrow.

  • I'm sorry to hear that the pain killers are not working. I hope you do find something that does work for you. I'm on morphine patch and they don't help me, they make me feel dizzy, confused, tired, sleepy but can't sleep. I got 2 hours sleep last night, my pains were horrendous,mi nearly woke my hubby up but didn't because I know there was nothing he could have done to help me. Went food shopping this morning and now I'm ready for bed, struggling to keep my eyes open. I still have to sort out dinner for tonight and clean my bathroom, I'm so tired I can't even get up to make a hot drink. My stomach, bladder, bowels feel swollen and heavy and when I lay down on my left side, everything on my right feels like it's being pulled down together to my left side, I don't know how to explain it but I feel everything is stuck together again and making it hard to sleep on my sides.

    It's difficult to eat out, I try to avoid going out but it's stressful for my family as they want to go out and I can't. I have a 19yrs old daughter, 17yrs old son and 15yrs son. They are understanding about my pains and why I can't do things with them but like your boys my kids get frustrated most of the time. Sometimes I just grin and bear my pains and go out with my kids just to see them happy.

    Glad you enjoyed the movie, I love superman ๐Ÿ˜๐Ÿ˜.

     

    Sweety

  • Hi I totally understand,we've been out for the day today and I'm now in alot of pain and went out for a meal on the way back with the people we went with so had to eat so my stomach feels very bloated and uncomfortable but if I not eaten I would have got moaned at. I tried the morphine patches and I didn't feel well on them and also Tramadol but I felt spaced out with them and didn't seem to be with it most of the time.

    Ah so your children are at a good age to understand what is happening but will never understand the level of pain we experience. Where are you with the Dr and consultant?

  • I hate that, even when I go to my parents house, they always get food out or start cooking something and I have to say I can't eat any of that and just have black coffee, they get a little annoyed with me. I've now started taking my own foods, snacks with me in my bag when I go out to anyones house or with friends so I don't annoy anyone or feel left out.

    I didn't get much sleep again last night, got a massive headache, my insides feel really  tender today. Yeah my kids do kind of understand me and my illness but it's still stressful.

    I'm going to see my GP in 2 weeks time for a check up I need to tell him I can feel my insides starting to stick together. The NHS consultants have discharged me saying they can't help me. I'm seeing a private consultant who has helped me so much. I'm on Zoladex injections for 3 months, I hate the side effects of those injections. I'm also on antibiotics for another 3 months to stop pains in my bladder and get rid of the high  inflammation. I just know I'm going to have an operation again maybe this year. Nothing seems to help me.

    What about you, what have the GP, consultants said they will do next?

    Sweety.

  • I had the same last Friday with a family bbq, was told off for not eating much but I end up in so much pain. I feel I'm getting no where as still waiting to see my consultant who carried out my last two operations. My gp just keeps increasing my painkillers. I've been today for some reflexology and she said I should get my colon checked as during the session she felt something in that area isn't right. I had the zoladex injections but they didn't help me very much. Sounds like they need to get you back in and investigate what's happening as doesn't sound very good at all from what you've explained. I think its disgusting that the nhs discharged you and that your having to go private. I would but as a single parent it would be a big struggle financially. Hope you manage to get some sleep tonight

  • For me to go private I had to sell some stuff from home to pay the consultant and for my operation. I don't have enough money to see the private consultant at the moment.

    I'm in so much pain today I can barely breathe or talk. Had a horrible night last night, I just want to cry but not in front of my family, I need them to think that I'm strong and not struggling but I don't think it's working. So far my kids and hubby know how bad my pains are as I can't walk properly, I haven't eaten all day or had liquids. I just don't know what to do, my pain killers are not working, I had blood in my urine this morning and I was in agony opening up my bowels. My whole back is killing me, my stomach, bowels and bladder feel like there on fire.

    I don't know how much more of these pains I can handle. My hubby said I will need to see a consultant regarding booking a date for an operation. It's breaking my heart that I have to have another operation.๐Ÿ˜ž

    I hope you're having a better day than me.

    Sweety.

  • Does sound like you need to get seen as soon as possible and I'm surprised your gp isn't pushing more for you. You shouldn't have to spend your days like this as its no life for you. You need to be more persistent or maybe go to a&e. I'm ok thank you

  • Just getting an appointment to see my GP takes 2 weeks for a date and time. Everything takes time. I know if I go to the hospital they will just send me home like last time, they didn't even give me any stronger pain killers. Nothing seems to help me, the only thing that does help for a bit is having an operation.

    Glad you're doing okay today.

    Sweety.

  • Yes its all a very slow process isn't it. Well its ok having another operation but they need to try and sort the problem out once and for all so you can have some quality life back. Spoke to soon as spent the rest of the day and evening curled up on the sofa in agony. Cant believe the hospital didn't do anything ๐Ÿ˜

  • Oh no! I hate that just when you think you're having a good day and then bam the pains hit you. Hope you're feeling better today. Do you find that when you over do walking or even housework the pains get a lot worse? I do.

    Whenever I have a operation I'm fine for maybe a few weeks or months and then I'm back to square one even if they remove all Endo and adhesions. 

    I had another crap night, when I got a couple of minutes or even 30 minutes of sleep my pains woke me up. I just feel exhausted and sleepy. Yesterday morning I put on a higher dose of morphine patch and it's only this morning that it seems to kick in, it's making me feel kind of dizzy, sleepy, lack of energy, but it hasn't taken away the pains. I found blood in my urine again this morning I know that means I have an infection. I'm feeling constipated today.

    Sweety.

  • oh dear not good at all. If they remove the endometriosis in your operation what's causing all the pain still as I thought that once it was removed it wouldn't or couldn't cone back. I'm frustrated as it says I can wait up to 18 weeks to see a consultant after the referal. I'm in week 6 and in alot of pain. I feel bad for moaning as it doesn't sound anything like what you go through daily but I fear it could get to that stage if not dealt with soon.

  • That's what I heard, once they completely remove Endo it won't come back, but that's a big lie, and when it comes back it comes back with vengeance ๐Ÿ˜ก I know my body and the signs, I know the extreme pain at the moment is due to bowel and bladder infection. I'm sticking to liquids this week and I have noticed that this morning I can move a little bit easier although the pains are still very high, I have a slight temperature. I slept last night sitting up in bed, I only woke up 3 times but then went back to sleep. I was going to see my GP this morning but my hubby said if I'm feeling a little bit better then wait till Monday if the pains are still bad then go see him.

    It's a very long wait just to see the consultant, I hate that, here you are in absolute agony and they say you have to wait so many weeks just for the consultant to either say there's no other pain killer that we can give you or go for a scan or nothing new that we don't already know and it was a waste of time seeing him. Half these consultants are just guessing what to do next as they don't really know themselves how to help.

    I feel like I have stage 4 Endo but I know it's only stage 1. Sometimes I think I'm not a strong person that any kind of pain I just can't handle that I'm being a baby and overreacting. Sometimes I get annoyed with myself and say stop being a whimp, cope with it other women do your making the pains seems worse than they are. 

    Sorry I'm rambling, don't mean to, I know I'm not coping well, my family are try everything they can to help me. Yesterday before I went to sleep my kids actually made me go to bed with propped up pillows to make sure I was comfortable and not in more pain so I could sleep. It must be very difficult for you as your kids are young and your living on your own.

    Sweety.

  • Its very confusing isn't it and all I want is some straight forward answers and an appointment with the consultants. Its all very frustrating isn't it. My gp is caring but to be fair he just doesn't know enough about the condition. I'm not feeling good today more emotionally and just feel like giving up as cant deal with this every day. Your not rambling so don't worry its nice to have someone to share these feelings with as I understand to a certain degree. Well I think you need to see your GP when you feel you need to as you know your own body. Nice that your kids are considerate. My kids are young and know I'm in pain but still expect me to run around and play football as their dad does nothing with them. I struggle but have no choice as don't want them to suffer. Hope your day hasn't been too bad ๐Ÿ˜Š

  • Yes it's very confusing. Its also very frustrating when you rely  on your GP to help you and they don't know how to help. 

    My kids are not always so understanding, sometimes I just have to get moving and do things or go out with them there's only so much patience my kids have. Hubby doesn't do much with them as he works nights.

    I've been in bed all day with hot water bottle and been reading my book trying to be brave and not fall apart whith these pains. I've been feeling dizzy a lot and nausea. 

    It's very hard not to feel emotional when your own body is fighting you and you can't fight back to stop the pains.

    My daughter was in the mood to bake cakes and biscuits today, I told her we will bake tomorrow as I couldn't move today,mane wasn't happy about it but said fine. I hate disappointing my children I feel like such a failure as a mother.

    Hope you have a good pain free weekend.

    Sweety.

  • I've been of work this week as boys of but we have been busy every day and I physically struggle now but like you I don't like letting my kids down. I just suffer in silence afterwards. I have emailed the hospital to see if they can tell me if they have received my referal but I'm dubious to what my consultant will say. I've been paying for reflexology which has helped a little as the pain some days as you know is crucifying. I'm not sure what's going on with mu endometriosis but all I want is some answers as to why its still there after he should have removed it all after my second operation. I'm sorry to hear you are in so much pain and discomfort. I'm dreading going back to work as it can be a physical job and it just drains me totally. Hope you have a better day today and here if you need to chat

  • Hi,

    Got so fed up with my morphine patch this morning I yanked it off, I was feeling so dizzy and nauseous and I was constipated and depressed I just couldn't handle it anymore. Feel better now that it's off, I don't feel so dizzy.

    I saw my dietician yesterday and she said I have put it n 5lbs in weight, I was kind of shocked but happy, I don't have a clue how I put on Weight as I haven't changed my diet at all. I'm thinking it might be due to Zoladex injections.

    My inflammation is clearing up now, I'm hoping I can start getting some sleep. I have a doctor's appointment next week Monday in the morning I'm going to tell him everything, how bad my pains were and I'm hoping he can send me off for a scan, although I doubt anything will show up.

    I don't have a NHS consultant anymore as they don't know how to help me.

    I don't like disappointing my kids either, I like it when they are happy and not worried about me. I hope reflexology helps you, it's a shame you have to pay for it.

    I'm having physiotherapy for my back pains, my bones are weak and the physiotherapist is helping me to strengthen my back.

    Sweety

  • Hi you sound a little more positive which is nice even if its for a short burst. Good we the weight gain especially if you need to put weight on and yes probably a combo of things that have done it. I didn't last long on the morphine patches as they made me feel very poorly. Yes it seems to be helping a little but only on that day. Having some acupuncture Monday but I have finally got an emergency appointment with my consultant tomorrow so feeling a bit anxious about what he is going to say and what the next step is. I've been in alot of pain the last few days so I am happy that I can at least see someone who can offer advice. Hope your feeling better today

  • I did have a good day but yes it didn't last long. I got so fed up I took off my morphine patch but had to put it back on as my pains were bad again and I could feel the effects of the Zoladex injection and they were nasty. 

    I was feeling so depressed today that I couldn't stop crying and I was so fed up with Endo that I just wanted it all to stop. I couldn't handle feeling hot, cold, flue like symptoms, headache, back, stomach, bladder, bowels, bone and neck pains today

    I'm glad your getting to see the consultant tomorrow, good luck and I hope he can help you and offer you some good advice. Let me know what he tells you.

    Sweety.

  • Sorry to hear you've been feeling that way and I know how you feel as I have days that I sit and cry myself to sleep as you feel luke you just don't know what to do with yourself. Can you speak to your Dr and ask for a different pain killer. I am hoping he tells me that he's sort he didn't investigate more during my previous operations resulting in me being in constant pain. I'm here if you ever need to talk ok ๐Ÿ˜Š

  • I'm hoping my GP will give me something stronger to take but with no nasty side effects to it.

    How many operations have you had due to Endo, if you don't mind me asking? I've had 5 so far and know I will need to have another one.

    Thank you for being here for me I've never spoken to anyone about Endo and how it effects me like I have with you, I really do appreciate it. 

    How did your appointment go with the consultant today? Hope it went the way you wanted it to.

    Sweety

  • Hi I had a laparoscopy when they diagnosed me,then Jan 15 hysterectomy leaving in ovaries and then October to remove ovaries. The consultant said he doesn't want to operate due to it being to close to my bladder. Changed my hrt and gave me some medicine to help with my bowels. Sat in car and cried as I feel I have got nowhere. He also said I need to be refered toba pain specialist at the hospital as not happy with the amount of different painkillers I've been taking. I just feel very emotional. I feel like I've been told to just live with the pain. Your welcome its always nice to have someone to chat who who understands what your experiencing .

  • I'm so sorry to hear you got nowhere with your consultant. Changing meds won't really solve anything. You really need an op to see what's happening inside you. A scan sometimes doesn't pick up anything as Endo can be hiding behind organs.

    I had Endo wedge inside and on top of my bladder, I had to have a really long op to get it removed. I went to see a pain specialist and they just gave me some exercise to do and gave me a TENs machine which did not help at all. When you know the pain killers don't work, only you know then that your only chance for getting any relief from pain is by having an op and remove Endo. The hard part is making the consultants believe you.

    No one can live with Endo pain, what a horrible thing to say. I'm sure he wouldn't like it if someone said that to him if he was in agony.๐Ÿ˜ก

    I cried my eyes out yesterday. I got about 2 & half hours of sleep last night, been struggling to stay awake today, I hate the morphine patch it makes me feel so dizzy, I'm scared of going out of the house on my own in case I fall or faint.

     I'm here for you if ever want to talk about Endo or anything else.

    Sweety.

  • I don't think he actually understands how much pain and discomfort I'm in and how much my life is affected by this constant pain. I struggle daily trying to do a full time quite demanding job and raise two kids single handed. He even commented on my GP spending money on a MRI scan. If it wasn't for that I wouldn't know that it wa still there. I know its not as severe as yours but it does impact on my life every day. Hope your weekend is going ok. I have a tens machine anyway which doesn't help. I'm sorry you cried yesterday and wish I could help with that but I know what you mean. I stopped using them as I didn't feel safe to drive. Thankyou ๐Ÿ˜Š

  • It doesn't matter what stage Endo you have, it's all very painful and it ruins everyone's lives. It's got to be really tough for you as your on your own. I know I have my hubby but sometimes he doesn't understand even though I try to explain my pains and why I can't eat or sleep he still doesn't get it.

    Gp's are meant to spend money on us to have MRI, scans otherwise you wouldn't know what's going on inside you. GPs are very good at making us feel bad when nothing shows up on the scans. If the docs could live in our shoes for one day they would be crying like babies, then they'd know how bad Endo effects us and how painful it is.

    I took the patch off this morning, I couldn't handle the dizziness or sleepless nights. I'm going to see my GP tomorrow morning I'm hoping he will send me for a scan.

    Sweety.

  • Hi how did you get on at the your GPs appointment ? Yes I don't think people realise how painful it actually is md how it can affect your life. I do struggle daily and with a demanding job and kids it just makes it harder. Would be nice sometimes just to get away from it all for a few days. Men sometimes try to be sympathetic but again don't really understand what your experiencing or why you cant eat certain things or cant do things due to the level of pain your in. My new hrt are not helping as having night sweats and my face has come up all blotchy and horrible. Mali g me feel even more self conscious about how I look ๐Ÿ˜’

  • Hi, my GP upped my morphine patch dose he's hoping that will help with the pains and help me sleep better at night. He's going to get in touch with my private doctor and ask him to do a scan to see what's going on inside me. He gave me some sickness tablets to take before each meal. I found out that my hip bones are becoming thinner and has given me calcium and D vitamin tablets to take. 

    I went to do volunteering work today in a daycare centre for 4 hours, it was my first day and I'm in agony and feeling very exhausted, I'm so glad that at the moment I'm only working one day a week. I don't think I can work full time now I didn't realise how weak my body is and how low my energy levels are. I'm going to have my second Zoladex injection next week, so not looking forward to having that.

    I wish sometimes I could just run away from my own body.

    I don't know how you manage on a daily basis working and taking care of your own children. Sorry to hear your new hrt tablets are not working. Can't you go back to your GP and tell him the hrt not working and to give you something else?

    Sweety.

  • Hi how you doing, sorry been very busy at work. Have you had your scan yet?. Ah its good you do voluntary work but not that you end up suffering from it. Sounds like your body is going through so much all in one go and that must be very difficult for you. Are you finding the xoladex injections are helping. I had them for a little while before my hysterectomy. I went back to my GP but he wont change anything without the consultants say so. I was very upset that they were supposed to refer me to a pain specialist and didn't so still waiting for an appointment. I do struggle daily but have no other option but to get on with it ๐Ÿ˜ž

  • Hi, I'm not doing too great, still struggling daily like you with pain, I'm trying to act normal, like nothing is wrong but it's hard. I'm only doing one day a week voluntary work every Tuesday's, I found it very exhausting yesterday, trying to ignore my pains and work and have a smile on my face pretending to enjoy myself. I finished work at 1pm, went shopping straight away came home and cooked dinner. I was on my feet all day long and come 7pm I just wanted to cry as I was so exhausted and my pains were pretty bad. 

    I hate the Zoladex injection, it's making me feel more tired, can't sleep properly as my pains keep waking me up throughout the night. I'm due to have my 2nd injection today in the afternoon not sure if I want it, as my chest kind of hurts, been having breathing problems, feeling more exhausted, my bones really hurt so do both my ovaries, been feeling nauseous.

    That is a bit silly that your GP won't change your meds without the consultants say so. Can't your GP thin for himself. He knows your having a very difficult time if he needs your consultants say so, he should ring him and ask him what meds you can change to. It is very difficult with pain to just get on with the daily tasks but we have no choice we have to. This morning I wake up feeling still exhausted from yesterday, my whole body is hurting I just want to go back to bed, but had to wake up early as kids going school/college had to make sure they all ate breakfast and have everything they need. Just finished cleaning the kitchen and I'm sitting down with no energy, I still have to go clean my bathroom, Hoover the house, go shopping as I have broken my heel on my shoe, just thinking what I have to do I just want to cry. My ovaries are killing me and my back pains are bad.

    Sorry for the long post as you can tell I'm having a horrible time.

    Hope you find something that will help you. Hope you have a good  painfree day today.

    Sweety.

  • I'm sorry to hear your suffering so much and very frustrating that you are not getting anywhere or seem to get any answers. I didn't get on with the injection either but its one they feel helps but everyone is difficult. I'm on my 6 day stretch working 47.5 hours and only 2nd day in and struggling.

  • It is very frustrating, one minute I think the injection is helping the next minute I know it's not. I'm really struggling today with energy, I've noticed that the last few days I've been eating a lot of sugary foods just to get energy but it's not helping.

    I just wish the consultant would just cut me open and clear everything out. I just feel so fed up today.

    Wow you're going to be working 6 days, you must be exhausted and fed up just thinking about it. Do you work full time or part time? Will your manager allow you to go part time?

    I'm going to see my GP today at 3.20pm to have my injection, before he gives it to me I'm going to tell him everything how I'm feeling and maybe he will say the injection isn't for me. I need to find painkillers that will help me, so far nothing is really helping me.

    Sweety.

  • How did you get on at your doctors? I wish I could but financially I cant afford to reduce my hours and other option is to use my holidays but I feel bad for my children as that impacts on our quality time together. I hope they hurry up and do your scan for you xx

  • I'm happy to say I didn't have my injection today, I spoke to my GP and told him my symptoms and he said not to have the injection today, he increased my dose on my depression tablets, as Zoladex has made my depression worse. He thinks if my depression lessons then I'll be able to tolerate my pains and have the 2nd injection. If not then the injection is not for me. My GP wants to see me in 2 weeks time to see how I'm doing. He also gave me a depression questionnaire to fill in and give back to him.

    My scan showed that my hip bones are thinning due to my lack of eating. I've been given D-vitamins to take for a year. I'm on my last box of antibiotics and hopefully I won't need to take them again. 

    It's a shame you can't work part time,nit would help you with your tiredness and help you be there more with your sons.

    Sweety.

  • Oh well that's good that he actually took on board what you were saying. Do you believe you will score high on the depression questionnaire? Oh right that's a long time to have to take a supplement but hopefully it will help. Yea its a shame but I'm stuck with full time. My manager is going off soon for 8weeks so my hours will increase and so will stress levels as I will be acting manager. Not sure how I going to cope

  • I'm glad that my GP is listening to me, but at the same time he's having a hard time trying to find meds that will help me. 

    Yes I believe I will score high on the depression questionnaire, i know my depression has been high just like it was 4 years ago. I'm on the supplements for that long because I'm not only suffering from Endo but also from celiac disease and disc protrusion. 

    I wish I could come over to you and help you out at work and home so you wouldn't be so stressed.

    Sweety.

  • Hi how you feeling? How was your weekend? I had a horrible one in so much pain and stomach so swollen and tender and been at work all weekend. The GPs don't seem to have a lot of knowledge do they and its very frustrating. I'm still waiting for an appointment with the pain clinic. Did you do your questionnaire?

  • Hi, I'm feeling exhausted, my weekend was very exhausting and I didn't do much just felt so tired. My pains are getting worse, my bone pains are bad too. 

    It's very annoying that as GPs they have no knowledge of Endo and how to help us, all they do is guess and experiment on us with different types of drugs.

    I filled in the questionnaire and i scored very high in depression. I will be seeing my GP next week to see what he will do next.

    The pain clinic didn't help me at all, they just gave me the TENs machine to use and discharged me.

    How are you feeling today? You off today or working?

    Sweety

  • Hi I've been of today but had my niece and nephews so been very busy. Just sat down for the first time today. I already have a tens machine and it doesn't do much so will tell them that. Sorry to hear your not feeling any better. Yea you thought you would which isn't good for you but if the gp can help you start to feel better emotionally

  • Hi, wow! You have been busy, I bet you just want to go to bed, I know I would. I didn't go into work today, I had a horrible night last night, my bones were hurting, had hot flashes and cold chills, I couldn't sleep on my back as my spine was hurting. Woke up this morning feeling very weak, in a lot of pain have diarrhoea, I just want to cry.

    Can't wait to go see my GP next week, I'm hoping he will have something for me to cope better with depression and my pains.

    My kids are all at school and college and I didn't want them to go, after they left I cried as I wanted them at home with me.

    Sweety

  • Hi I really wish someone would help you feel more comfortable and find a solution to end your pain once and for all. Had a very busy day at work today and just got home as eldest had football training. I'm exhausted and just want to curl up in bed. Didn't sleep last night as youngest poorly so struggled getting up at 6am this morning for work

  • Hi, thanks I wish someone would help me and you. I'm really struggling to sleep, haven't slept in 2 nights due to pains in my spine when I lay down in bed at night. I feel like a zombie at the moment, my eyes hurt and feel tired as I need to sleep. Went to my hospital appointment today, it was a check up for my spine and to get my MRI scan results and was told I don't need a operation on my spine. I'm having pains due to wear and tear, but I know myself that Endo is causing me a lot of pains all over. I'm so fed up of feeling exhausted all the time. 

    I was meant to go voluntary work yesterday at daycare for 4 hours but couldn't as I was in a lot of pain I just couldn't move, I spent most of my day in bed crying and had to put the morphine patch on.

    I hope you're youngest son feels better. I do feel for you, as your on your own struggling with Endo, work and your boys. Do you get days when your pains aren't so bad that you can do anything without any problems?

    Even though I have my hubby to help out and my kids are older but still I find housework, cooking, shopping, so exhausting as my hubby works nights and sleeps during the day, but while he's awake he tries to help me out.

    Sweety.

  • I have days when the pain is ok and manageable and then other days I'm in tears due to the pain and discomfort. Good you don't need an operation but not good that your endo is causing you so much pain. It is very hard and lack of sleep just makes it so much harder. It's good your husband helps but yes some days housework and things are just hard work. I've just got home from work been a very busy day

  • That's good you get days when you can manage your pain. I get them too but haven't had any days like that for a few weeks now.

    I'm glad I don't need an operation, that's such a relief for my family as well.  Yeah my days get harder when I don't get any sleep, it's hard to do any work or even hold a conversation with anyone.

    I hope you get some rest once you're boys have gone to bed. Hope you sleep well.

    Sweety.

  • I don't really sleep well at all as I can't switch off and being in pain doesn't help. I wish you had more pain free days. I'm of to bed soon as up early for work. Hope your having a nice evening

  • Sleep was the one thing I used to love, because once asleep I couldn't feel anything, but now I hate going to bed, hate the thought of sleeping because I know my pains won't let me sleep. I bought more pillows yesterday hoping that sleeping upright will help with my spine pains and Endo pains. I got some sleep as the extra pillows helped with my spine but the Endo pain kept waking me up. 

    Hope you got some sleep last night. How is your youngest son feeling now? Hope he's feeling better. There is a bug going around, I'm trying hard not to catch a cold because once I catch it, it takes a toll on me and I can't get rid of it for months. So be careful you don't catch a cold.

    Sweety.

  • Hi he still has a nasty cough and he's asthmatic so have to be careful. I've had a pounding headache all day and my lower regions really hurt and feel tender. My bladder seems to be getting weaker which isn't good. Seeing my consultant next Friday. Yea its difficult when you cant get comfortable and normally pillows can help but not in your case. Hope you manage to het a little sleep tonight

  • I hope he gets better soon. I find that it's always the cough that is the last and hard to get rid of. My lower regions are tender, my ovaries have decided to wake me up last night, I was in agony, but before I woke up I did get a few hours of sleep. Did you take anything for your pains?

    My OCD has been bad today, I find when I'm constipated badly my OCD  kicks in and I can't sit still, I have to clean the whole house or until I'm so exhausted I can't move and I have to bake cakes and stuff.

    Hope everything goes well for your appointment with your consultant next week. 

    Sweety.

  • Thank you it seems to be worse at the moment and hoping that it starts clearing up soon. Oh dear must be very hard having ocd on top of everything else. I've had a horrible day and been crying most of the evening. Any plans for the weekend

  • Yeah sometimes my OCD is pretty bad like today, I just know I will find it hard to fall asleep tonight. 

    I'm sorry to hear you had a horrible day. I heard its good to cry sometimes, but crying just gives me headaches, running nose.

    I'm planning on spending the day at home, helping kids with homework, then cooking and housework. Just the usual stuff. What are your plans for the weekend? Better than mine I hope?

    Sweety.

  • I am in bed with a pounding headache from crying. I don't know how much of everything else I can take at the moment feel like I'm falling apart. Taking the cats to have their boosters tomorrow then very similar to you housework and homework. Its frustrating when you are physically and emotionally drained but still cant sleep. Hope you manage to get some sleep tonight

  • I'm sorry to hear your not coping very well. You have cats? Your lucky, I wish I could have cats but my hubby is terrified of all animals. 

    I got some sleep, but awake so early as I was feeling really hot, it's hot outside but when I come in I start feeling a little cold, I keep getting goosebumps, so far today I've been going in and out I can't sit still I feel hot then I feel cold. I hate it when my bones ache.

    Did you get withdrawal symptoms from not wearing the morphine patch? I'm thinking all this bone ache and goosebumps might be withdrawal symptoms from the morphine patch.

    Hope you're having a lovely Sunday with your boys.

    Sweety.

  • Hi we've been to a family bbq but got moaned at for not eating much. Yes we have two rescue cats bless them We've always had animals in our house, boys love them. Oh dear not good getting withdrawal symptoms from the patches, I wasn't on the very long and they just made me feel so poorly. Its been very got and I'm in alot of pain today.

  • Wow I haven't been or had a bbq in years. Other people don't understand why you can't eat much, even when they know how I'll you are. I don't eat much either when I go to relatives houses for dinner and they all moan at me.

    Your lucky you didn't get withdrawal symptoms from the morphine patch. I'm just guessing that it is withdrawal symptoms. I'm seeing my GP on Wednesday afternoon I need to decide if I'm going to have my second Zoladex injection. 

    I hope you get plenty of rest now, try a hot soak with radox if you can that sometimes help me relax a bit. I can't stay out of my house for long I always feel very tired when I'm out and about. I don't know how I'll cope if I got a job.

    Sweety.

  • Yes my family pile my plate up and expect me to eat it all and sometimes I do eat more just so that I don't hurt anyone's feelings knowing that I will suffer later as I am now. Yes I am lucky and I sorry your going through everything that you are and hope your Gp gives you some answers. I'm seeing my consultant Friday. I'm of to do the ironing now

  • What we do just to please others but they don't know how much we suffer after, if only they knew, they wouldn't make a fuss. I struggled today going shopping,bi couldn't stop yawning, I hard trouble walking I felt so very exhausted just walking around the shops. I bought some strong pain killers from Asda I'm hoping they will help me with my bone pains as I don't want to put the morphine patch on.

    I did all my ironing yesterday morning. Sometimes ironing leaves me feeling exhausted. I'm still waiting to hear from my private consultant I due a check up. Good luck with your appointment on Friday hope it goes well for you.

    Sweety.

  • Hi how you feeling today, are the strong painkillers making any difference. I've been in agony today with severe stomach cramps and lower back pain. Not sure what's going on. Hoping to get some answers Friday but not feeling very confident. How long did they say you would have to wait to see your consultant?

  • Hi, I'm in so much agony, I got zero sleep last night and I'm so exhausted my pains are getting worse. I had to see my GP as emergency today. I told him my back pains are the worse and I had diarrhoea. He asked what was the last thing I ate, I told him I ate at my mum's house and didn't really pay attention to what I was eating and must have eaten something with wheat init, my GP said it sounds like the pains are due to wheat, so I have to start taking the morphine patch again and drink plenty of water, my pains should go within a weeks time. I don't know how I'm going to cope for a week. Last night I thought I was going crazy with pain. So far the morphine isn't helping me, I don't know how much more of this pain I can take. I just feel like crying.  I'm still waiting for a letter from the hospital to see when my appointment is. I told my GP I still haven't heard anything and he was really angry that the hospital isn't getting back to me.

    Sorry to hear your having a painful day too. Have you taken anything for your pain? I have have had the hot water bottle on my back all day long and been in bed. 

    Not too long now for your appointment to see the consultant, I hope it goes well for you and you get an answer to what they will do next.

    Sweety.

  • Hi how you doing, sorry work been really busy and working loads of extra hours as manager on holiday. I'm on my 9 day stretch and I'm exhausted. Saw consultant and he wasn't happy I hadn't seen pain specialist. So he has put me on the gabapentin,ibuprofen and codeine and then top it up with tramadol. Just feel doped up all the time and head in a very weird place. Hows things with you ? Any news on your appointment

  • Hi, sorry to hear you have to work 9 days in a row, no wonder your exhausted I would be to. Try treating yourself to a nice hot bubble bath and then have some chocolate it won't help with the pains but it might help you relax and unwind a bit.

    Will be seeing the pain specialist now?

    I've been on all those pain killers before and they didn't help me at all in the past. I'm back on the morphine patch as that's the only pain killer that is helping me at the moment with my bone pains and Endo. I think I ate something with gluten in and had a nasty reaction,in have been in agony for a week now, I have had very bad pains in my muscles and am waiting for the gluten to come out of my system.ni haven't slept properly for a week now. I have to see my GP every 2-4 weeks, he's keeping an eye on my depression and he said to put the Zoladex injection on hold for now.

    I hope your resting now, or at least trying to I know it's hard to rest when you have children.

    Sweety.

  • I am seeing the pain specialist in August so quite a while to go. The painkillers are not helping at the moment but at least the consultant admitted that its definitely endo pain and not ibs. I am in agony and struggling to walk most of the days without pain shooting through my body. Good that the gp is keeping an eye on your depression as I know that it can change very rapidly. Always here if you need someone neutral to talk too. I am physically drained but like you unable to sleep so that doesn't help.

  • That's a very long time to see the pain specialist. I think everyone who has Endo suffers a great deal of pain, and pain killers don't work on us only surgery does, which isn't very good.

    At least you know the cause of your pains and it's not IBS, only endo. I'm really struggling with my pains don't know what is causing it, it's either Endo, adhesions, bone pains due to thinning of the bones or celiac disease. Whatever is causing my pains is causing my depression to rise and I keep thinking that I can't carry on living like this.ni can't even manage 4 hours at my volunteering job which is only the nice a week. I'm fighting my exhaustion every day but can't sleep properly at night.

    It's difficult being a woman/mother/wife๐Ÿ˜ž

    Sweety.

  • I have been taken of my hrt now so not sure how that will affect me apart from the horrible night sweats. Yes good I know what the pain is but doesn't make life easier esp working full time and being a single parent. The frustrating thing is the painkillers are not working, the tramadol just makes me sleepy but during the day and I have no idea what the solution is. I'm sorry you don't know what's causing your pain and wish someone would help you find out. Yes very hard work I agree. Of fo bed now as very busy day at work then taking son to football training. I leave the house at 7.30am and get home at 8pm.

  • Sorry for the late reply,bi haven't been too good really struggling with my pains and depression.

    I don't mind the hot flashes as I'm always feeling cold, it's the bone pains I can't handle while on Zoladex injection. I don't think I'm going to take the second injection I don't think Zoladex is helping me at all.

    It is very frustrating when your taking pain killers and nothing happens, and your still in agony, sometimes Do you wonder why we all bother taking pain killers when it doesn't work?

    Wow! That's a very long time no day for you. I really don't know how you cope. I'd probably cry myself to sleep every night.

    Hope you're having a good day today and that your pains are not so bad.

    Sweety.

  • Hi how was your weekend? It is frustrating as the cocktail of meds I'm on don't seem to be helping. I do not eat much but most days my stomach is bloated and uncomfortable. I didn't get on with the zoladex maybe worth speaking to your GP but there doesn't seem to be many alternatives at the moment. Its a joke really. I know with mine they ate trying pain management but they don't look at the emotional impact its all having and that in its self can be more dangerous.

  • Hi, my weekend was busy. I was busy baking and cooking, was in the kitchen all day. I don't eat much either during the day as my bowels hurt whenever I eat, so the less I eat the less pain I get in my bowels. My stomach feels bloated and swollen as well.

    I don't think I'm going to have any more Zoladex injections, I don't think it's for me. My stomach has been feeling very tender, everything inside hurts more now, I can feel that my bowels and bladder and ovaries are different, they feel like something is wrong.

    I hate all my meds I'm on my last day of antibiotics today, I've been on antibiotics for 6 months now and am fed up of taking them. I will see how my bladder is without antibiotics, hopefully it will behave itself and not cause anymore infection.

    It is a joke, I don't if I should cry or laugh that that nothing helps with Endo pains. I thought by now someone would come up with a painkiller or cure for Endo. I've been feeling so exhausted lately and don't know why. I bought some iron tablets yesterday and started taking them today hopefully it help with my exhaustion. I know I'm lacking in iron I just don't want a blood test as I hate needles and don't have the energy to fast for it.

    Hope you're feeling a bit better today

    Sweety.

  • I had to do the garden yesterday and was in tears due to the pain. My eldest was quite worried. Its so hard not being able to eat what you want or like especially when your family are eating it. Yes its awful that they haven't found a cure or at least a treatment that enables women to have a better quality of without being in so much pain and discomfort ๐Ÿ˜ž

  • Oh dear, doing gardening will make your pains a lot worse as you are moving your whole body. It's really hard when and upsetting when your kids see you in pain and crying as they know there is nothing they can do to help you. Yeah it's very difficult not being able to eat like your family does.

    I hope you're having a good Thursday.

    Sweety.

  • Hi yes gardening isn't good but it needed doing and had no other option. Today been very busy planning for when my manager goes of for her operation. Hows your day been ?

  • Hope your manager's operation goes well for her.

    I've had a crappy day, my pains have been horrendous, I haven't coped well today, I've spent the day crying and reading my book to keep my mind of my pains.

    I'm seeing my consultant next week Friday in the afternoon I'm hoping he will tell me that he will operate on me to see what's going on inside of me, something doesn't feel right at all. My stomach feels bloated, and swollen, it hurts when I go for a wee. I just hope I'll get some sleep tonight.

    Sweety

  • ow you feeling today? Are you any further with treatment or at least ideas on how to reduce the discomfort and pain. I'm struggling with constant headaches and feeling pretty low. Not looking forward to the next few months as work is going to be very hard work.

  • Hi, I'm not feeling good at all. I'm having hot and cold chills and not sure why. I went to see my consultant yesterday afternoon, and he said I'm a difficult case to deal with because of endo and adhesions inside my bladder and adhesions wrapped around my bowels. He wants to do a MRI scan on my bladder and stomach to see how bad it is and if endo is anywhere else, he will then have a meeting with the bowel, bladder, urology surgeons and his team to see if they all agree to do surgery on me. Not sure if it will be keyhole or open surgery. He thinks by removing both my ovaries it will slow down the Endo retuning.

    I'm also having issues with my hubby, he wasn't talking to me yesterday because he was angry with me for putting the heating and I forget I had the bathroom window open a little. Even the consultant knew something was wrong with us and asked us what has happened between us. I didn't answer him, my hubby said its what all married couples go through. The consultant told my hubby that a woman who has endo doesn't have an easy life and stress can make the endo pains worse. And that I should try and go to the gym, sauna and walk more. Hubby then gave me a pretend hug. In the car hubby had a go at me blaming me for my own stress because I don't go to the gym everyday. I can't go everyday due to pains, some days I cant even walk properly.

    But as usual my hubby wouldn't listen to my point or what I had to say. He said if he's the reason for my stress and I can't handle it then go stay at your parents house.

    Oh no! Headaches are horrible too, I'm getting them, I'm also started getting goosebumps on my legs a lot. Have got any holidays that you can take so you can rest in between working days?

    Sorry for the long post and for moaning to you. I hope you're having a better time than me.

    Sweety.

  • I was due to get married a few years ago but then I was suffering with heavy bleeding chronic pain and terrible bouts of depression. He wasn't very understanding and felt I could do more to help myself but I couldn't. I ended the relationship as couldn't deal with him as well as the endometriosis. Men can be very arrogant at times and that's one reason I'm glad I am single as don't have that added pressure. He should be supporting you not having ago at u. I've spent the last few days in tears with one thing and another. Looks like two of my management team are going to be off for 3 months so even more pressure and nit sure how much more I can take. Please let me know how your mri scan goes

  • Hi, that's so sad, but am glad you had the courage to end your relationship, you are a very strong person. I know deep down I still love my hubby, but leaving him over a silly argument seems silly. We have been together for 20 years now, and since I've been ill with endo I have noticed the change in my hubby and the strain endo is putting on my marriage. It also doesn't help the fact that my hubby does nights and he hates management there but he loves his job and at the same time hates it and loves complaining everyday about it. He says don't make him angry and stop making mistakes, stop saying anything that will trigger his bad mood, so basically I have to tiptoe around him. I don't know if me and my children can do that.

    With two of your managers off that will put a lot of stress on you. I do understand that working full time and dealing with endo is very stressful, have you thought about looking for a less stressful job?

    I will let you how the MRI scan goes, I will find out in August what they will do.

    Sweety.

  • Its a difficult situation to be in but you shouldn't have to walk around on egg shells under any circumstances but hard when you have children. Yes was a hard thing to do but I've had to make harder decisions in my past to protect my kids. I am looking for a new job but needs to be good pay to ensure I can pay all the bills. Hope after your mri you get some answers

  • Hi, yeah I'm in a difficult situation and I have to think what I'm going to do. So far this weekend I have avoided staying in the same room as my hubby. I know I shouldn't walk around on egg shells, but it's the only option for me and my children at the moment.

    That's good your looking for work elsewhere, it is hard looking for the right for yourself.

    Good luck with the job hunting, I hope you find something soon.

    Yeah I hope I can get a good answer, I don't really want another operation but it's the only thing that really helps me.

    Sweety.

  • Oh dear really doesn't sound like a very nice environment for you to be in or your children. Difficult to concentrate on your health and issues when living like that. Does your hubby know how your feeling or would that make things even harder. Yes a less stressful Job would be lovely but not many out there. No I bet you don't and its whether it will help. I'm not sure what's next for me. Just doped up on painkillers daily

  • Hi, no, at the moment my environment is very stressful, and am feeling very depressed which I can't seem to snap out of. I just want to cry all the time.

    I'm having problems with eating solid foods, as soon as I've eaten or sometimes while I'm eating my bowels start hurting me. I am kinda hoping that I do have the operation just so I can stop being in pain and can eat again normally. I have an appointment with my GP next week I can tell him what my consultant said to me regarding an operation.

    I'm not taking any painkillers I'm trying hard to see if I can cope without the morphine patch as there's nothing else stronger than that. The weather is lovely, nice and hot I'm trying to sit in the back garden as much as possible as its getting rid of my cold chills, but for some reason I'm suffering from hot flashes.

    My hubby knows I'm depressed and knows he has hurt my feelings, and says he will try harder to stop doing that but I'm not going to hold my breath because he always says he will stop but he doesn't, his moods seems to be getting worse and I'm starting to feel like I can't say anything to him because I don't know if it will upset him.

    Sweety.

  • I'm sorry not sure what to say as I know there is no easy solution especially when you have kids. How you feeling today? How you managing without the Morphine patch ?

  • Hi, that's okay, I know I'm in a difficult situation but I spoke to my hubby about his moods and he knows how he has been acting and is now trying to lessen my stress by being nice to me.

    I'm not doing good struggling to sleep, struggling with my pains at the moment I'm sticking to a liquid diet due to my bowels really hurting as soon as I eat anything solid, it's very hard as I'm cooking food for my family that I would like to eat but can't I just sit there with them with my homemade soup or baby food.

    It's very hard without the morphine patch, I'm trying hard not to put it on. I'm going through hot flashes and cold chills all the time. I'm struggling with my depression too I just want to cry all the time. I know I need an operation to clear out the endo and adhesions as nothing else is working.

    Hope you're having a better time than me.

    Sweety.

  • Hi how you feeling now? I've just been in a works holiday did 67.5 hours in 5 days had a lovely time but hard work and very long hours. Hows things at home?

  • Hi there hows it going? Sorry thought id already replies to you a while ago. My memory at the moment is dreadful cant seem to get anything right . Its good you have spoken to your husband and hopefully that is helping and that your starting to feel a little better. Have you been managing without the Morphine patch and how do you feel your coping emotionally?. I'm run if my feet with the extra responsibilities at work and have felt poorly the last few says due to constant headaches and being in pain. Off for bloods today and seeing consultant Friday but not expecting much from it .

  • Hi, I'm just getting over my muscle pains in my back, I ate something that must have been contaminated with gluten, wheat, dairy in it and have been in agony. It's slowly coming out of my system. I'm proud of myself as I didn't put the morphine patch on at all, everyone kept telling me to put it on but I stayed strong and coped with the pain. It was very, very difficult but I managed it.

    Things are going okay with hubby, I went to stay with my parents for 3 nights and since then hubby has been more know kind towards me. Emotionally I'm still feeling stressed, depressed if it's not endo pains it's also eating disorder and contaminated foods that I have to deal with as well on a daily basis.

    Sorry to hear your in a lot of pain, have you taken any painkillers and are they working for you. Good luck with your blood test. I hate having a blood test I don't like needles. Hope everything goes well with the consultant, hope he has something new to say some good news would be nice for a change.

    Are you still stressed with work?

    Sweety.

  • Oh dear not good you have been unwell due to your intolerance bit well done for not putting the morphine patch on. Ah well I'm sure hr missed you and hopefully will support you more emotionally as sounds like you are going through a very difficult patch physically and emotionally. Bloods went ok I'm used to it now but my thyroid levels were not right so need re testing. Saw my consultant yesterday and he's having me in for a laparoscopy and a cystoscopy as pain no better and affecting me daily now. I'm acting up still as manager as struggling with the ling hours and running on very little sleep. What's happening with you regarding your endometriosis?

  • Hi there, this endo is really is nasty and never ending. I'm just wondering if any endo has gone into my back muscles or spine. I did email me consultant about it but I haven't heard anything back from him.

    Well at least your moving forward, hopefully the laparoscopy and cystoscopy will help you and get rid of your pains. Sorry to hear your struggling with pain, stress from work and lack of sleep.

    I'm still waiting for my MRI scan date to come, if it doesn't come soon I'll have to change my appointment with my consultant in August, because he won't have enough time to look at the scan report or speak to the other surgeons. I'm still struggling to sleep well.

    Sweety.

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