Working with stage 4 endometriosis

[Kaz87]

Hi everyone, really need some advice from all of you strong endo ladies. I have never written on a forum but I am really struggling and I don't know anyone in my family or friend circle with these health problems.

I was diagnosed with stage 4 endometriosis last June via laparoscopy and prior to this i have off sick quite a lot as I was in so much pain. After the laparoscopy I was diagnosed with stage 4 endo but they didn't remove much and I then got a rerefferal to a specialist in the area. My second laparoscopy was in January this year where they did remove more but it's still ok my bowel and rectum and I have fibroids too.

Does anyone have struggles with working? I am a hospital pharmacist and i feel that I am having to go off sick for at least a week every month. I had the mirena cool removed in June this year as I have been told to try for a baby by my gynaecologist. Now I have periods as a result of removal.

Does anyone manage to work full time with quite a full-on job? I feel so embarrassed by always having to be off sick. It makes me so down, I feel utterly useless and defeated.

Has taking some time off work helped anyone? My job is really full-on, I'm very much running around all day. My managers sympathy is running thin and I feel like my illness is just a nuisance. Keep having HR meetings now which is stressful.

So sorry for the essay guys. Would really appreciate knowing what everyone's experiences are. Feeling so down about it all xx

[Starry]

Big big hugs. I progressively developed CFS with my Endo over the past 18 months and have really struggled with a long commute and very demanding stressfulI job.

I cut down my hours to 4 day week in May which helped a bit as I was sleeping all weekend and depressed with having no life.

I ended up going off sick with exhaustion 3 weeks before my major surgery though. I am 5 weeks post op and just starting to think about a phased return to work. I am nervous about how it's going to go. But will have to be much more careful about pacing myself and not overdoing it.

[Kaz87 in reply to Starry]

I'd say definitely have a phased return as I was off sick for three months after my second laparoscopy as it was a really extensive one and I got a bad infection afterwards which delayed things.

Definitely pace yourself and let your managers know if they can do anything to help. I really really hope you feel better soon and you manage to get back to work when you are ready xx

[Starry in reply to Kaz87]

Thanks, I got a severe illness right after mine too and was readmitted for a week, so I had a set back.

Thinking of you X

[Kaz87 in reply to Starry]

Thank you xx

[HellyLlewelly in reply to Starry]

Take it easy thats a heavy operation you had with it being in so many places, my bowel was scraped on March and I'm still not 100% and granted I had a Hysterectomy too its still major what you had.

Take care of yourself.

Helly.

[Starry in reply to HellyLlewelly]

Thank you Helly xx the meningitis didnt help either. I'm 6 months into my second attempt at a phased return. The first failed and i went back off sick in December and restarted in mid Feb. Ive made it up from 3 to 4.5 hours 4 days a week but it's been extremely hard going. Ive had to readjust my mindset completely and accept I dont have a career any more just a part time job, which I am not finding easy. By end November if lucky I'll reach 6 hours a day and don't reckon I'll get much beyond that with the cfs, which I now think is largely due to the meningitis I contracted post operatively. But I am finally a year on starting to feel a bit more human and that I have a life again, so just trying to focus on tue positives and not expect too much of myself.

[HellyLlewelly in reply to Starry]

It must be so hard for, it's a feeling of losing part of your career feeling that you can't give thst 100% you once did. I remember you mentioning your meningitis before and that's really put a spanner in the works I'm sure. Know that you are doing fantastically to have grown your hours to what you have done so far. I often question my almost life long tiredness and the tiredness particularly post hysterectomy and its almost like I am never going to get out of the starting blocks like I used to and maybe my expectations of myself need adjusted. As women we can put lots of pressure on ourselves.

I really commend you for working with all you have been through.

Best Wishes

Helly.

X.

[Starry in reply to HellyLlewelly]

Gentle hugs. I was all over the place ay around 4 months and hysterectomy wreaks havoc with hormones. Hope things gradually settle down soon for you and you get the right hrt in place.

[HellyLlewelly in reply to Starry]

Thanks Starry, half the battle us the chronic back pain its sooo dragging down everything with it, especially my mood. Trying my best to be chipper and I spend most days having to take a lie down in between chores. Ibuprofen and co-codemol are not reallt doing it for me. I was on Maxi tram tramadol painkillers pre op and my Dr only gave them to me as a short term fix. I really only got 3 good weeks then the pain edged back slowly.

My Chiro will not see me ant more becsuse he knows I have 3 bulging discs on MRI so it's not worth their putting their practice at risk.

I am definately going to look into a women's pelvic health specialist to see if that can help. Anything is worth a try.

Thank you xxx

Helly.

X

[Chlpe]

You're not alone in this Hun. I'm suffering with pain all the time and I'm self employed now but I find I have to always cancel my clients or I end up doubled over in pain whilst being with them. I get so embarrassed but I can't do anything about it. I dropped out of college because I couldn't be there most days and I ended up quitting my job because I had so much time off because of this endometriosis. Don't think your alone. Since I've had a laparoscopy and a coil fitted I cannot tell when this pain is going to happen it just hits me hard and when it does I cannot do anything more but curl up in a ball on the floor until it goes. But I'm having this coil removed tommorow because I haven't had any good out of it since having it.

[Kaz87 in reply to Chlpe]

I didn't find that the coil helped with the pain much at all but it did help when I stopped having periods. You will probably feel different as soon as you have it removed as I did!

It's just so frustrating as i have worked so hard to get here in my career but then I'm off sick so much. Did you find that you are feeling better since being self-employed? The goal is for me to help with my husband's business but he hasn't been able to set it up properly yet as I've been so unwell in the past year with all my surgeries and endo flares etc.

Btw thank you so much for your advice, I relate so much to what you have said. I hope you feel better after having the coil removed

[Chlpe in reply to Kaz87]

I totally understand hun. My education was affected from this endo and I haven't been able to go to university because of it, but yes definitely being self employed has helped I don't have the stress of having to ring my boss at work and have to let her down again. On days I am ill I just cancel my clients and rearrange for another day it's so much stress free. Also yes my gynaecologist told me to have a coil to stop the heavy periods which has helped in that respect but I haven't stopped bleeding since the op and I'm spending so much time in more pain than I was without it. I hope you feel better too

[Emurse]

100% understand how you fell here! I was diagnosed in march and was trying to work a 42hour a week job, i seemed to managed 2 weeks at a time, then needed to take a week off to recover! I manage a shop so team mates and bosses were getting stressed having to cover my shifts last minute and I found I was feeling more and more sick! I went to my doctor who said I was mental putting money and my job before my health... my surgery to remove isn't until oct and my doctor has signed me off until then and to be honest with you I feel so much better for taking time to rest, even my husband has said I don't look pale all the time! If you able to I strongly recomend taking some time off for yourself it's done me the world of good and there is financial support out there if you need it!! I hope you start to feel a bit better soon! Xx

[Kaz87 in reply to Emurse]

I have been putting money and career before my health for years. It's just my stubbornness to be normal, there's a lot of pressure from my family to be independent even though my husband is amazing and has been supportive of me. I can work maybe two or three weeks at a time and then I'll have to take a week or more off to recover. I work in a busy hospital so I'm always on wards running around and I have no life as I'm trying to recover when I get home and all weekend. I am sure my managers are getting fed up of me constantly being sick. I feel so guilty all the time. I really appreciate your advice, I've just been signed off for longer and I feel that I can't really enjoy life when I'm off sick. That will mean I only made it two weeks at work! I'm going to listen to all of this advice. Thank you so much for your support, it's so nice to feel like I'm not alone xxx

[Emurse in reply to Kaz87]

Your more than welcome I'm fully with you! It's hard...you feel guilty for your work collogues and your family but at the end of the day it's your life, your health! You need to do what's best for you, no one else!! it's hard when u have an illness that people can't see but people will understand!! Don't feel guilty, and I wish you the best of luck with everything xxx

[Kaz87 in reply to Emurse]

Thank you. I really hope you continue to feel better and that your condition gets better after the surgery. Sending you loads of positive vibes xxx

[jillybean85]

Hi there. I worked in nurseries, and I was constantly phoning in sick, let go from a couple of places due to my absences. I have had my first lapacoscopy on the 6th August this year and not quite back at work yet. I now work for Midlothian Council in the schools doing supply, which makes it easier because I can be flexible and there isn't much pressure on having to work, however I can't really afford to do it. I have endometriosis on the surface of my bowel, they couldn't remove all of it, so I am having a second op with a bowel surgeon present in a few months time after an MRI.

My advice to you is be honest as you can with your employers about what is going on, give them doctors letters etc so there is evidence that you are getting the treatment.

I really hope you can get it all removed. Nobody realises just how much it can take over your life and that you basically just get used to the symptoms that you have. I dropped the number of hours I was doing and it really helped me. Before I was working 4 days a week 730-600 and it was just taking its toll on me, so I changed to council hours 8:00 - 3:30 and it made the world of difference, as I had more time to rest when I got home in the evening. I also had a half day on a Friday, and they are suggesting I do a phased return also inbetween my 2nd op so just working the 3 days a week rather than 5 days a week.

Whatever works for your body, I just adapt to my own symptoms and don't push myself too much.

Hope this is helpful, feel free to message me if you want to talk about it, we are all in it together, joining this forum has been the best thing I have done. It really helps talking to others who suffer with endo. A very underestimated disease.

Jillybean xxx

[Kaz87 in reply to jillybean85]

Thanks Jillybean. I have been so honest with my managers about everything which I feel can help. I work in a really stressful environment and I know that it does make my symptoms worse. I have been contemplating leaving for a long time but my stubbornness has stopped me. I guess I could cut down to work part time. I'm just trying to weigh up my options.

I would definitely do a phased return as you plan to as that will definitely help you to understand your limitations, that definitely helped me after my second op.

Unfortunately the endo on my bowel can't really be removed unless I have a bowel resection which is something I don't want yet. The fibroids I have are still causing me pain too and the adhesions have attached themselves to them too which has caused problems in the past.

I really hope that the surgery gives you some relief. You're right, endo is an underestimated disease! You should be proud of yourself for finding what works for you and being so determined.

Thank you for your advice it has really helped xxx

[Emmsyjayne]

Hi, I was just wondering whether you had registered your endometriosis with your regulating body? I am a pharmacy technician and I let the GPhC know as I was on so many pain killers etc it seemed like a good way to cover my backside. I've actually been removed from dispensing work and patient contact (which is essentially my job) because I am on such strong pain relief but now I'm being threatened of losing my job because I am no longer doing the job I was employed to do. It's really frustrating. I'm hoping after my hysterectomy in October things will change! X

[Kaz87 in reply to Emmsyjayne]

Hi! I actually haven't registered my endo with the gphc, I didn't think to as I've been trying to get on as normal but to be honest I try to manage during the day on codydramol and get through the pain. That has been so difficult though. If it's really bad I will dose up on tramadol etc. That is so frustrating for you! I've been finding that there are a lot of pharmacy tech jobs in CCG? Have you tried applying for those sorts of jobs, that would be so much better for you I bet. I'm so sorry that you are going through this, that is so unfair. I really hope the hysterectomy makes you feel a whole lot better xx

[Emmsyjayne in reply to Kaz87]

I am in the RAF so I don't have a lot of options on the type of role I do. I just have to hope that the hysterectomy improves the pain and I can get back to normal! I would just keep in mind the GPhC if you do find that you are taking lots of time off etc. But if you are managing that's good. X

[Josie-1970]

Hi kaz. Ive been in the same situation. I work for the NHS and have had numerous meetings with occupational health HR and to be honest i think my boss has just given up. Ive tried to explain to him that when i get pain its unbearable to stand up but to be told i need to get my dodgy uterus sorted. Yes you read that right.

Anyway ive had a 2nd lap and have been referred to a specialist for prosap injections which means nore time off to go and have tgem before i have hysterectomy. Even now my boss thinks im fine. I just think its something that unless you suffer with it, its not understood xx

[Kaz87 in reply to Josie-1970]

Hi Josie, that is terrible! I don't understand why the NHS can be so harsh considering we are in the health profession.

Are you part of a union? I have been trying to organise for a union rep to come with me to my meetings from now on.

I have heard that the injections are life changing, I am contemplating trying them myself. I hope you get some relief.

I get so annoyed about the discrimination involved around this, it almost feels like we are not taken seriously. It's pain everyday, just varying types of pain. I hope your hysterectomy helps and you get some normality back xx

[Heloo85]

I work part time in retail so in another full on job. I struggle. I spend 4 hours at work to then spend 24+ hours recovering. Plagued with both fatigue and pain. Ive just applied for PIP cuz i swear, i could not hold down a full-time job for a week, let alone the rest of my working life! Not unless my health drastically changes! It might be worth applying yourself and then drop your hours to part-time!

Endo for some is really dibilitating.

[Kaz87 in reply to Heloo85]

I think I have to look into this, thank you so much for your advice on that. This is not the way I imagined life would be, it's so hard sometimes. It can be so debilitating and you continue to get along with it, and then it gets too much. You're right it can be so hard to work a whole week and not be completely wiped out.

I will look into pip. Thank you x

[Heloo85 in reply to Kaz87]

Before my dad passed i was his full-time carer, it was hard but i could take a break. I was never lazy, i would crawl to bed at night, but i could rest and i survived like that for years! Did that for 13 years. I was 31 when he passed. So i have no formal qualifications really bar GCSEs. Id love to go to uni and make something of myself. My partner is like "youre so bright, youre wasting your life." Oh yes, just love making nothing of myself. So ive ended up in retail on my feet anywhere from 4-8 hours a day. Up and down stairs. Putting stock out, cleaning and im now like "wth". Its so hard. So im currently surviving on a part-time wage and wondering how im going to get through the rest of my life. My fatigue is so bad i start slurring to the point people think im drunk! My memory is shot and my energy is at 0. If i dont get PIP i honestly dont know what im going to do! Its so hard. People think its lazy. No its chronic fatigue/chronic pain. I dont even have a social life and havent for years! I was single for 6 years at one point because i didnt even have the energy to date. I find i have to really push myself. Im quite strong willed and really dont want to give up, but im at a point now where the more i push the more i regret. Good luck with your claim, lets hope we both get it! X

[Kaz87 in reply to Heloo85]

Wow you have been through so much, just think about how strong you are. you do a really manual job but still manage to work? You are amazing! I really hope your pip comes through. If I'm being honest I didn't know what that was until you brought it to my attention so thank you! I really get the same impression from people that we are lazy, just got to get on with it etc. I got on with it for so long until it got so bad that I am going through this now. I think we are the opposite as we are trying to have some sort of normal life whilst going through internal struggle constantly. You are inspirational! And if you are being referred to hospitals and having surgeries it's not in your head it's a real condition and you are getting through it despite everything you're going through. I wish you all the best of luck with everything xxx

[Heloo85 in reply to Kaz87]

I know. According to people the NHS now operate on healthy people. 😂 .. Its a joke. I've done one complex surgery, symptoms come straight, put on zoladex, just had an ultrasound yesterday that has showed active disease. Which im amazed at as its first time its shown on ultrasound, even though i have stage 4 deep infiltrating. Cant wait to see my GP next month as was trying to make out i had IBS and no way could endo return so fast 😂. You can claim PIP whether you work or not, its not means tested but do really express how much you struggle with life! Its not on a diagnosis base, its on how a diagnosis effects you. Ie daily living/mobility! Xx

[Kaz87 in reply to Heloo85]

Thank you for your advice, I hadn't even considered pip as an option. GPs don't tend to know much about endo as it's so specialised, I think we kind of have to become our own doctors with this. Well done for being so persistent. I really hope you get he treatment you deserve, keep fighting!xxx

[SarahB83]

Hi

I have been in the same situation and it isn't nice and I really feel or you.

I was told have a baby that will fix it but it didn't and now my mum helps out loads as with the pain it can be a struggle. I also work part time due to money as was previously told we weren't entitled to anything as endometriosis wasn't recognised as a disability then. However I am going to apply again now as my gynae told me it is now recognised as a disability if chronic and am covered by the disabaility discrimination act as you will be. Contct your occupational health and do a self referral to discuss it and get some guidance put in place as in these situations considerations can be put in, ways to make it easier for you to work on those days were the pain is excrutiating. At the end of the day you have to do what is best for you.

Good luck.

[Cupcake1617]

I’m a teacher so it’s quite manic my end too. Over the years I’ve learnt to listen to my body. If all I can do one day is turn up for work and do my job and sleep when I get in so be it. If other days I can do work, do shopping and housework then I make the most of it.

I also try and pre cook/freeze meals for my not to able days so I don’t have any cooking to do after a long day at work.

Hope you find something that helps x