Is there anyone else who's endo is so severe, they cannot work? Or is it just me?

[Fletch]

Im 29 and I havent worked since December last year because of my endo. It has consumed every aspect of my life, and I wondered how people get through this? I worry that this is my life. Forever. I havent had a pain free day in a year and a half. I actually feel jealous that there are people on here that only seem to struggle when they are ovulating or menstruating. Am I alone? Is anyone else unable to work? Will I ever work again?

[undefeated]

You sound like you are a having a really tough time. I went through this myself - not working for months and months. I ended up completely changing my life and dedicating everyday to addressing the disease (moving in with family, doing meditation, acupuncture, eating special foods etc). After about 9 months, I got some results and was able to start rebuilding my life. However, I've reached a point where I know I need to scale back slightly as my endo is getting worse again. You are not the only one who cannot work because of the disease, so please don't feel alone in that. The key thing for me was that I never gave up, I couldn't and wouldn't accept that being ill and stuck at home was my lot for life. It's easier said than done and of course, i had down and up days. I read a good book called How You Mind Can Heal Your Body. I also got involved with the Endo UK charity and created projects to keep my mind busy (just online things). Best of luck with managing your condition. Stay strong.

[june_jdr]

Hi Undefeated, so true we all struggle and carry on with our lifes regardless of pain. I never gave up on work and only had time off when things were so bad that I was admitted to hospital. Its hard to imagine what we do to our bodies when we just ponder on...the damage is done...and thats not a good thing. I would say to anyone who is working and finding it hard to stop...think of you...your body needs you to stop and rest. It is easier said than done...I know...but inorder to keep us safe we need to slow down or at least take a break. The process is exhausting....our bodies are exhausted...do what is right for you.

[Fletch]

Thank you for that! I completely agree with what you are saying. It is a mental battle as much as anything else! It's so easy to get depressed when I feel like all I am is this living, breathing disease. Being housebound can get tough! But like you, I do have good days and bad days. Hearing your story is inspiring. I hope with all my heart that I get a similar story one day! I shall read that book, thank you for that. Every little helps after all!

Again, like you I have changed my diet. I no longer eat wheat or dairy. I take supplements/vitamins that I have read up about. I have accupuncture once a month. Im dabbling with yoga designed for people with gynae problems. I'm very far from giving up, and every day is a fight! But... Nothing seems to be working! You said it was 9 months before you noticed a difference though? I didnt take into account that it might take this long. Ive been doing all of the above for about 4 months now..... And I have been known to 'give in' on occassions because I am not seeing many improvements. (I suffer from impatience and want to see immediate results!!) From what you have said though, I guess persistance is the key.

I am sorry to hear that you can feel your pains coming back. You have concured it once though, so hopefully it'll just be a case of getting a bit stricter with things to combat the pain.

Do you work now then? Have you had to change your career or has life just gone back to normal? I was half way through training to be a children's nurse, and It was such a 'hands on', physical job, Im not sure whether I will ever return. I keep thinking that if I ever do get better I might have to just get a less active desk job. (Sigh). It's not very me. I used to be such a 'out and about', hands on person.

It's hard to remember what feeling 'normal' was like. I hope I feel that way again.

Thanks for your reply xx

[Mazza1980]

Hi there, I can't walk too, I get so many blood clots that it's impossible to have any quality of life for 5-6 days of the month and for the rest of the month I bleed regularly if i do any exercise such as walking up stairs so going to aerobics is out of the question. My work haven't been supportive and when i ask to leave because of the pain i've had comments like 'it's a figment of your imagination' 'its just period pain' etc which breaks my heart cos I'm screaming inside. I have a breather when I went on zoladex for 6 months, is this something you would consider? there are side effects but that is nothing compared to endo pain. x

[Hidden]

Hi Fletch,

So sorry to hear your story. I also don't work because of endo complications - I took medical retirement recently. I am 39 and know that I am lucky in one sense as my employer treated me well. I worked for them for 13 years and I miss work enormously.

Personally, I am trying to do more work for Endo UK as well as bits of painting and writing. If I don't feel like doing much, I make sure I see at least one person every day as a minimum - even if this is just a quick coffee. I find it helps me. I have also started having counselling.

It is easy to feel defeated by this disease - when I am in pain and struggling, I just rest and give myself a break. It has taken me a long time to acknowledge I can't do all I want to do - I still hate that! but I just try and make small steps now. Life can still be rich with experiences.

I hope you have good support around you. We are here for you.

Take care,

Carol xxx

[Ekmamtae]

Hi

You sound just like me! i am 31. I was made redundant at the end of last year (quite obviously health related - although they could not say so!) I pushed through with a bit of volunteering since then, very few hours and spent the rest of my time in bed, never a day painfree.I had my second lap in Sept, I have been even worse since. I can barely leave the house - I am holding on to "this wont be forever" although I can barely see the light at the end of this long old tunnel right now. I guess this is our season to rest up - look after ourselves, humble and accept help and support. Keep holding on thats what we must do and TALK about it - don't be ashamed or embarrassed!

Hugs, Emma xx

[Fletch in reply to Ekmamtae]

Thanks for your reply Emma.... This might sound crazy, but just to know I am not alone and that there is someone else out there that is struggling in the same way I am is a huge help. It's so easy to believe that you are the only one isnt it?

I too was made redundant from my last job. Like you, they said it was due to cut backs but I knew it was because of my absenses. I cant say I blame them really! I had about 4 months off! No employer is going to be 'that' supportive are they? After that I stubbornly started training to be a childrens nurse. I was crazily determined this would not stop me from living a normal life. I lasted about 3 months, and after missing loads of work, again, my uni said it was probably time to call it a day. I havent worked since, That was a year ago.

Its great that you have been trying to voluteer. What kind have work have you been doing? Its so strange, I tried to do exactly the same! But, it didnt work out for me either unfortunately. I was volunteering as a family support worker, but I kept on having to ring in sick (despite me only working about 4 hours a week) and I kept letting the families I was working with down. That's the last thing they needed! You have to be quite responsible and reliable in a job like that, so I had to give it up. So now I do nothing!

Are you on incapacity benefits? I am. It's a hard pill to swallow that I am only 29 and are claiming sickness benefits. But, every little helps I guess. Money is a worry though. How could it not be on £67 a week? Me and my boyfriend were saving for a house, but thats not going to happen now! Will it ever?!? As you say... theres GOT to be a light at the end of the tunnel.

How do you fill your days? Do you have a good support network around you? I had to move back in with my parents so they could look after me, so Im not totally alone. And my boyfriend lives with us too and he is amazing. I feel so guilty about being ill though. He comes home from work everyday and usually finds me in bed, a bit weepy and completely helpless. After a hard day at work that must be all he needs! He didnt sign up to have a 'sick' girlfriend.

I too have recently had a laparoscopy. Only about 3 weeks ago actually. I had endo excision.... But I dont think it worked. I feel exactly the same as I did before. I keep thinking, if that doesnt work, what will? What is your course of treatment? Have you tried these prostap injections I keep hearing about? I have a follow up appointment in December, and I imagine that is what my specialist will start me on. What else is there?

Do you have a good specialist? How long have you been going to hospital about your endo? Do you find the NHS helpful? I find GP's USELESS. They have no clue what I am going through. I feel as though, unless you see an Endo specialist... they just dont get it? They think we just have bad period pain. Ha! I wish!!!!!!

I am in agony on a daily basis. Ive ended up in A+E 3 times in the last year. I asked my GP recently if I could be referred to a pain management specialist to help me cope a bit better and they said.... "Endometriosis isnt classed as a severe or serious enough condition to get that kind of referral". I just burst out crying. I cant work for goodness sake? How much more serious or severe does it need to get? It makes me so angry and hurt. No-one understands. Apart from other people with Endo!

Do you have these kind of experiences?

Anyway... Sorry to ramble on. But it sounds like we are in the same boat so I thought it might be helpful if we kept in touch. There must be light at the end of the tunnel, because I have read stories from people saying 'dont give up'. So... we must not give up! However dark things feel at the moment. Eat well, rest well and dont give up. We can do it!

Hugs

Aimee x

[LadyA]

Hi i have just come out of hopsital after a week in, and for 6 years i have been in so much pain and finally now my doctors are taking me seriously, im having a laproscopy in february, and im not allowed to work untill i will be having this done as i am in so much pain and can hardly walk because of it (i now have a single crutch to steady me when i walk) i know exactly how you feel, but hopefully after all this is sorted i will be able to work again god bless you xxxxx

[Fletch]

Thanks for all the replies ladies! It's a comfort to know that I am not the only person that is unable to work. That may sound crazy! But iscolation and lonliness is the worse. I felt like it was just me. But, it sounds like it's not. There are others out there by the sounds of it, and immediately, I feel less alone.

Carol, you've given some good advice there. Thanks. Im not quite well enough to get out the house every day, but even if its a case of picking up the phone to chat to someone; that will help. I may look into volunteering for EndoUK too. It'll keep my mind busy. I think it's important to try and keep busy. Its difficult though, because everyone else works! I guess thats why I am here. How are you getting on with your counselling? Is that NHS or private? I may need to look into the same. Im pretty depressed, although thats never something that is easy to admit. Who wouldnt be in our circumstances though? Perpetual pain. Heavily medicated. Unable to work. Sress. Pressure on relationships. Guilt. God, Who wouldnt get depressed?!?

Mazza1980, im not sure what Zoladex is? Ive recently had a laparoscopic excision, that hasnt worked, so im sure that on my next visit to see my specialist we will talk through new courses of treatment. A 6 month break sounds nice though!

Lady A, Good luck for February. We all hope that we can all find a solution that works for us, so we can start living normally again.

I shall try to remain positive, and if I falter... I know I have some helpful people on here that will listen to my endo rants.

Lets not let it beat us ladies

Hugs

Aimee xx

[DawnK]

You are not alone! When I was initially diagnosed in 2009 I have 3 laps in a space of 3 months and was off work for 6 months, my employer kept my job open but did not pay me ( we had bought our 1st house 3 months prior to this!! ). The stress of not earning made my endo worse. Saying that I did get the all clear ( or should I say the nhs all clear ) after 14 months of zoladex injections, this was temporary and in feb this year I wad back to the start...

I had changed jobs and my employer this time has been great and they paid me up until oct and after my ops but I am now on statutory and this does not pay the bills. I am doing similar to what someone else has said and done a drastic lifestyle change, I am seeing a nutritionalist who specialises in women'shealth who I met thru endo uk. After 6 weeks of no wheat, dairy, alcohol, caffiene, red meat or sugar I have found a difference in the pain and gradually getting back to work.

All I can say is that you are not alone ad people I have met thru endo uk have helped me see that

Hang in there

Dawn x

[weeble29]

Hi Fletch

I am not able to work due to some nasty symptoms,the problems i have with my bladder,the amount of pain am in daily and also down to the high strength of the medication i have to take.

Like you i worry that this is how it will be for the rest of my life,I am 29 and havent worked in the past 5 years i have got some nasty comments from ignorant people about the fact i am not in work.

Im sorry i cant offer any advice on this but if you ever feel you need a chat or anything please do get in touch

xxx

[Ekmamtae]

Ahhh Aimee, I have just read your reply and cried! This all sounds so familiar! I feel so insecure as I used to so asctive, work in media, and be the reliable one who was there for everyone else, so I'm not dealing with being the needy one! I literately have had to move so that my mum is my neighbour and my boyfriend takes care of me alot - I can never help thinking he is going to want to up and leave - he does feel the strain

Today I had the dreaded phone call where my voluntary job have got to let me go - as they relied on me a fair amount and cant deal with me being off longer than planned after surgery - boo, now feel like I have lost the good reputation I built with them and friendships. I am scared to even plan going to a friends house - I bled really heavily the other day when I picked up a bag of shopping and walked a few feet with it.

I have had 2 laps - first seemed to help for a few months, second I am worse since and have more bladder problems and constant pain.

I am on Norethisterone - I cannot take the pill due to migraines and had a Lupron injection but gave me apparently rare side effects.

I still have my Mum, boyfriend and best friend - very few others can be bothered with me nowadays - I am not the bubbly fun girl I used to be!

I still have my faith, I believe the pain we go through will be used for good someday - although I would like to see that day very soon!

I have an amazing GP - the Gynes have totally messed me about and not takem me seriously at all - even though I had adhesions into my chest with internal bleeding on the inside walls my my lungs.

I am trying to forget those who have siad just get on with it, theyt are naive to this - lucky them!

I am trying to focus on the good. My support network - my great GP - sites like this.

I hope and pray that soon we see the light at the end of the tunnel - until then - we have each other - our Endo sisters who can build us up and make us feel "normal".

Yes - I would love to stay in touch!!!

Keep smiling, surround yourself with nice colours, smells, good books, positive uplifting music - and WE UNDERSTAND YOU!!!

Emma xxx

[Fletch in reply to Ekmamtae]

Hi Emma,

I hope this message finds you on one of your better days, rather than one of your worse days. And I am sorry to have made you cry!!! I totally get why though. It's hard reading peoples stories when they ring so true to home. It somehow makes it even more real! And, it confirms that your not going mad too. I sometimes doubt myself and think 'Am I being a massive wimp here?', but when I read others stories from people such as yourself a realise, no, Im not. We're coping pretty well considering!

Stresses and strains in your relationship seem to be affecting you in much the same way as they affect me. I look at my boyfriend sometimes, and feel so sorry for him. He works hard all week, and gets home.... to me! Short straw or what!?! When we got together we were out all the time, socialising with friends, spontaneously went away at weekends and generally lived the kind of life that couples without children can live. Now, we cant plan anything. If we get invited out, the reply is 'It'll depend on my health that day' and 9 times out of 10 we have to cancel. I encourage him to go out on his own, but unfortunately when he does, he has too much too drink (because of the stress of living with me) and gets upset when he gets home. Its horrible. He says he misses us going out together, which then makes me feel incredibley guilty, and it usually ends up in some kind of row. It gets to us both so much. And him being a very typical male, he doesnt talk about how he's feeling and how much it gets to him. But I KNOW it does. I can sometimes see the disappointment in his eyes. He bottles everything up, and then he'll explode after a few weeks. Who wouldnt really?!? I dont blame him. The saddest thing he says is 'sometimes I feel more like your carer than I do your boyfriend', and evertime I hear that it breaks my heart. If he was a nasty person, he would have left a long time ago... but he's amazing and I dont think he would. But part of me, the part that loves him as much as I do, wants him to leave just so he can lead a happier life. My life would be completely over, because he literally is my world, but he doesnt deserve this to control both of our lives! Its bad enough that it controls mine. I, like you fears the day he says he's had enough. I really wouldnt blame him if he did though. But living in that fear isnt very nice is it?

I dont have many good days, but when I do, ive learnt to go out with him and try and enjoy it as much as I can. Sometimes I pretend that I am ok even when I am not. Just because, I dont want him to get sick of hearing it!!! I had a fairly good afternoon/evening on Friday so we went to the cinema. I cant even remember the last time we did anything like that and it felt nice. I fell asleep though. Im battling with fatigue at the moment. Its a killer!

Do you manage to go out and do stuff with your boyfriend? How long have you been together? I think we both need to realise that if our fellas were going to leave us, they would have done by now! And the fact that they have gone through this much with us is testiment to their feelings towards us. Not many men would stick around would they? Lean on your boyfriend, and try not to be scared that he will go. He sounds like a good one, and you sound like you deserve a good one in your life right now! Rather than feeling scared, lets count ourselves extremely lucky! Things may be a bit blue in our lives with our health, but look at what brilliant men we have by our sides, supporting us through thick and thin.

Im sorry to hear that you can no longer volunteer. Dont see this is a permanant thing. It is just temporary. You will get back in to it one day, just as I will with my voluntary work. We've just gotta get things under control first. I firmly believe that. Today!

Do your Norethistorene tablets not slow down/stop your heavy bleeding? Im sorry if they dont. I have to take them too, and I find that 'eventually' they slow things down and make it a bit easier. But then, I take them alongs side my pill back to back so I have that extra bit of 'back up' that you dont have because of you not being able to take the pill.

I understand when you say ' I am not the bubbly girl I used to be'. I feel exactly the same. Im half the person I was. But.... that side of us has not gone forever. Again, its just a temporary thing. I hope! We'll get our bubbly personalities back. And in the mean time, what a tester of friendships!!!! Now I am no longer 'fun, bubbly Aimee' it's amazing how many friends I dont really hear much from anymore! This just makes me even more grateful for my parents, my boyfriend and a couple of good mates I have. Sod the rest of them! They have shown their true colours!

For now, I must go anyway. Im venturing out for some accupuncture! Have you tried it? I have about 6 sessions. I dont know whether it works or not... But its better than doing nothing! Its amazing what you'll do when you are desperate!

If you ever want to email me my mail add is [e-mail]

Take it easy, and I hope your having an ok day today

Aimee

[fursandfrills]

Fletch

As you see you are most definitely not alone. I also had to give up work because of endo. I found making dolls clothes to sell a kind of therapy. I could do it sitting down as much or as little as I can manage. I also found cognitive behavioural therapy helpful. I still have really bad days when I can't focus on anything but have to go to bed but I try to accept these as my body saying what it needs.

Hugs

Julie x

[Hidden]

Ive not been able to work since July this year, i dont know when i will be able to go back, they are still paying me ssp for now, i dont know for how much longer. I dont know what to do. xx

[Starri]

I haven't worked for about 18 months now due to endo, I am just so tired (diagnosed chronic fatigue and depression as well as long standing endo) and in so much pain all day everyday. My meds are strong and can't drive on them. I used to work in a lab on my feet all day then moved to the office when I couldnt do it any more but I cant even sit down all day anymore. I can't concentrate or think things thorugh properly. Its so hard, I have been told they can do nothing till I am ready for a hystercetomy and full bowel resection but I don't have kids so now we are trying to have a baby. I am sitting here everyday just hoping that we will be able to have a baby and then I can get the surgery and maybe just maybe I will be able to have a normal life afterwards.

Just try to keep smiling and happy thats the best thing I have found for all this

[HelenSoprano]

I can relate to all of this - I feel like I am never going to get my life back. This time last year, I was so successful, my career was going so well, and now I can't bear to face life some days. I only hope that my laparoscopy gives some answers. When I hear that with some women it makes it all worse, I feel like not bothering. But surely it is still worth a try?

[Imarevel]

Hi i can relate to this also. I've had endo sine i was 11 but took 10 years to diagnose. I ended up only being part time at high school and have lost more jobs than i count on both hands due to endo.

I also feel is there ever going to become a time when i can work again.

I have longed to be normal and be abke to work for sooooooo long now. But now i'm learning to accept that this is MY life and i need to do best with it. I hav realised that i have both good and bad days and need to spend as many good days as possible having the life i want. I'm hoping that the day will come when i'm well enough to work and just hope i can actually find a job where my employer will be considerate of my health problem and not be put into the category of a skiver.

I hope this has helped a little. All i can say is things must get better and you just need to hope. I'm sorry if i sound condesending but I have had endo my entire teen years and up and have missed out on oh so much and i can't let myself live like that anymore.

Here is a helfpul piece of advice i was given at the pain clinic : "Do what you plan to do, not how you feel"!!! This really helped me and you just need to learn to pace yourself too.

Hope this has helped a little

[tmystic]

hi fletch , i have had severe endo since my early 20,s , i am now in my 40,s and now medically retired due to the illness , but it is possible to work ... i just seemed to plod on through the yrs.. but i won,t lie it is hard when you no longer can work to cope with the changes i,m still adjusting, as it takes a lot of convincing other people just how debilitating this disease is, but you will get through this , good luck

[tessa36]

You are by no means the only one being made so debilidated by this disease my friend, I cannot work because I have such an aggressive form of endometriosis that it is probably well past stage 4.

I had a TAH in 2008 and still it managed to return, with a vengeance may I add!

Since 2008 I have been signed off and I am now registered as disabled for an indefinate period because of my poor health. The endometriosis is so bad that I suffer with such severe back and leg pains, that it has also caused hyperesthesia, which means heightened sensitivity to pain.

I am on 3 types of opiaites and many other drugs to keep myself trying to get going every day.

Every day is a battle. Not just physically and mentally, but it challenges my son and my husband too.

My GPs have been fantastic with me in trying to do all that they can for me as I have exhausted everything they have tried for me to have some beneficial factor of pain relief to no avail! I have given them and my Gynae Cons such hard work!

Out of all the people I find totally ignorant and unsympathetic towards me about my disability and the cause of it are my two sisters and my brother.

I have tried to explain to them what it does, why I am the way I am etc etc etc etc but it's like talking to a brick wall. They get the total wrong end of the stick and think Im trying to get a sympathy vote, when in fact I am trying to get them to understand why they should make more of an effort in supporting me in other ways and sharing quality time with me whilst they can - it's quite difficult to exactly explain what I want them to do, but they are intelligent enough to see it for themselves, they just don't want to.

To answer your question - I have no idea how bad your endo is, how debilitated you are, or what you are going through with your life at the precise moment, but if you are anything like me, morphined up to the eyeballs every day to get some sense of relief , yet unable to function a normal day in your life for more than an hour, then the brutal honest answer is that the future is very likely to be very uncertain. TBH if you were exactly like me, the answer would be no, the prospect of going back to work is absolute minimal to the point of zero.

I kinow its not a good answer, but I dont see why I should lie - if someone was in the same place as me, going through what Im going through, then they deserve to know what I know from my experience.

This disease, endometriosis is just pure evil - there is no known cure for it and it ravages one's life so badly that it is almost like cancer, but without the death bit.

I dont know if that is a tad extreme for me to describe it like that, but I have seen people say the same thing elsewhere.

Its so shocking that endo is just as common as cancer and as common as diabetes, but it is not researched as much as either of those two diseases.

Like these two diseases they effect the body in such a way that there is no permenant cure, yet we are expected to live with it.

If you want to know more, or speak to someone with endo, visit the website called endometriosis in the uk.

its absolutely brilliant and its free to use. the women on there are so friendly and know exactly what you would be going through.

I hope that you will find some hope soon with a way to cope with living with this nightmare.

xxx

[Hidden]

hello im kasy sorry to hear that you are not well.i know how you feel.im 27 and i was diagnosed by a doctor aged 21 i was hurting for along time before they diagnosed me.then they done the excision for endo.i woke up with out a womb it was covered in endo so bad it had to be took out through my belly button.i also suffered from a 2 and a half inches cut in to my bladder too.where it was stusk to my bladder.i also got to go bck in soon because they think that i got it in my bowel i am so scared its unreal.my periods were so bad to that i didnt really blead much neither i was in alot of severe pain with these though.i hate having this ilness.and with having this ilness i cannot work neither i havnt worked for about 7 years beacuse of the pain.try using magnesium supplement that might help hun.

[SuzieQ1]

Hi Fletch.

I am so sorry to hear that you are going through such a bad time at the moment.

I have to tell you that I am in the same boat - I worked through it for so long that I ended up almost having a nervous breakdown. This wasn't just because of the endo, it was down to having unsympathetic employers - I had home visits, disciplinaries, councelling by people who were less than qualified to do so, they even requested to see my medical records. The last straw came when my manager came up to me in front of customers and asked how I was getting along with my IVF.

Now I am too scared to even think about going back into employment. Due to other illnesses, I am currently on DLA and don't work. Because of the other conditions that I have, I have virtually become a recluse. I barely leave the house, I get terrible anxiety when I do go out. I have to have someone with me at all times. I am looking into getting a job where I can work from home.

If you need to talk, just get in touch, sending you gentle hugs xoxox

[Imarevel]

Hi i know how you feel. I haven't worked in 2 years due to my endo but i've recently started zoladex injections which have really helped with the pain and bleeding. I'm starting my new job tomorrow and i'm very nervous that my endo will end another job for me.

It hopefully won't always be that way for you, as i thought i'd never work again and that was when i was 21.

Have you tried the Endo UK website for some support and information???

Hope this helps

[K_Hector]

Hi Fletch

I am in the same position as you. I used to work full time as a secondary school teacher but 3 years ago i started to have days off ill all the time. I was eventually diagnosed with endometriosis and PCOS. I had a laparoscopy in Aug 2015 but this only helped for 2 weeks. Since then the pain has continued to get worse and I am now on Dihydrocodeine, Naproxen and Morphine for pain relief. Due to the combination of me having so much time off and the pain relief i was on whilst at work it was eventually decided that I was simply not fit for work. I was signed off work from Mid September 2015 and in February when there was still no sign of improvement my employer told me that they could no longer hold my job open. It broke my heart to leave, it was my dream job at my dream school, but i simply had no choice. Now i am on benefits and only receive £348 per month compared to the £1620 a month i used to get from work. I feel useless and embarassed that I no longer support my family and hate that we are now constantly skint and that at 32 years old i have to rely so heavily on my parents for financial help. Life is a constant struggle and i too wish that i could at least work part time. Every month that passes moves me further away from being up to date with my teacher training, means that ive spent another month without my beloved students and I lose hope just that little bit more that i will ever be able to work again. I have been offered a full hysterectomy but with only 1 child of my own (and 2 step kids) i have always wanted to have another baby. Unfortunately we have been TTC for 6 years and the only results hav ebeen 2x 13 week miscarriages. I doubt i will ever have another child now but still cannot come to terms emotionally with this fact to face the hysterectomy and see if it offers any relief.

I really feel for you hun cus I know how crap it is. Good luck for the future.

[Fletch in reply to K_Hector]

Hi K Hector,

I'm so sorry to read about all you've been going through. I really feel your pain. I just wanted to reassure you that there is always hope, however awful you feel that your current situation is. When you're amidst it all, the pain, the medication, the emotional torment, the lack of independence, the benefits, it's so easy to think "This is my life. Im going to be like this forever." But, circumstances do change. Nothing is permanent. My post is about 4 years old, and by no means am I about to tell you that I'm cured or I'm better, BUT, things aren't as dire as they were when I first wrote my post. Im not sure I'll ever work full time again, but I do work part time, 3 hours a day. I never thought I'd work again when I wrote my post. Never. I couldn't ever envisaged that I'd get off benefits and get someone crazy enough to employ me, but I did! And it's not always smooth sailing, but I achieved something that I didn't think I ever would.... so I just wanted to share that with you. You never, ever know what might happen in a year, 2, or 3 years from now. Just focus on one day at a time and don't look too far into the future. You cannot predict what will happen and you'll send yourself sick with worry trying to do so. Bare that in mind when you're thinking about expanding your family too. Don't dismiss anything because you just don't know what might happen. Myself and my husband have just had a failed round of IVF and we were completely heartbroken. We don't have any kids yet. But I remind myself of how far I've come when trying to deal with this. If there was a time in my life when I thought "I'm never going to be able to work again" and now I do, then there's no point in me thinking "we're never going to be able to have a baby" because.... well... maybe we will. Who knows. But Ive realised over the years there's always hope, even when you can't see it.

I hope that provides you with a little bit of comfort x

Take care

Aimee x

[TiaBegum_30]

I have had endo since I was 13years old, iv never been able to keep a steady job due to 2weeks monthy absences at work. I can't stand in my own kitchen to make a sandwich never mind working with this sort of pain. I feel some one is ripping out all my organs from my stomach through my vagina. My 3years undergraduate degree took me 7years beecause endo doesn't just give me sever pelvic pain but severe back pain & severe depression too. I am 30years old now & just had a lacroscopy last week & found out, I have 1) severe endometriosis, which has caused 2) congenital adhesion & 3)enlarged bilateral polycystic ovaries. I also experience soreness wen I pass my bowels. I too think like you am I going to ever return to work and live a normal life like everyone else? And more... such as, will i be able to do anything with my education & what was the point of it? Will anyone ever marry me knowing I'm not able to work or have complications having children/may not be able to have any? What can I or should i live for since I can't work, struggle to have a relationship because no one want to waste time with a person who is miserable & ill most of the time. And I'm also fed up with being in pain & being depressed.

By the way Fletch you are very pretty 😊 xxxx

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Reading through all of your stories has made me feel less alone in dealing with this. I am 25 and what I feel like just the being of a life long battle with this. I'm still dealing with doctors to get my diagnosis. I haven't been working since September when I lost my job due to the fact I was missing too much work, I was still in my probationary period. I had to wait 2 months to see a gynaecologist and she wanted me to try the depo shot to see if that would help me. Been on it since December and there hasn't been any change in being in daily constant pain. Like most I do have good days and bad days, but I haven't had a good one in what seems like forever. She was actually shocked the depo had no effect on me and now it's a waiting game to see what she is going to try next. She is thinking of putting me on a different shot that is basically going to put my body into menopause, just to see if we can come up with a diagnostic. Its rough when your support system doesn't understand what your going through and they don't get why you can't just buck up and go work, even when simply standing up to wash dishes seems too much. Its nice to know there are others out there going through what I am, even though I wish none of us had to deal with it. Just hoping to get a good day. It's a roller coaster and im ready for the smooth part if even for a day.

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🙋🏻‍♀️ Same over here