I'm living in Ireland and officially diagnosed with stage 4 endometriosis on bladder and rectum since 2018. I'm a qualified QQI Level 5 carer and worked away but thanks to 2 rounds of decapeptyl injections and mini pill and hormonal treatments I've been left unable to work since Feb 2021. I'm constantly exhausted and for the last couple of months my sciatic nerve is killing me no matter what I do in my left hip and leg. Based on local councillors advice I applied for Invalidity Pension and have been refused as apparently' a 44yr old woman with endometriosis is not permanently incapacitated for work. '
I have applied to jobs and welfare agencies like 'employability ' who help people with chronic illness and disability find work and they even said they could see I'm not fit for work so now I'm just so fed up with the lack of supports and understanding and found this Christmas season awful and just spent most of it in pj's and curled up on the sofa with my hot water bottle. The money I've spent on gynaecologists and all I'm getting is 'just keep taking the ponstan 500mg 3times daily 4 days a month ' this usually leaves me zonked and now I'm supposed to find work and hold down a full-time job too!
Thanks for letting me cry on your shoulder.
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Escapologygirl
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Happy New Year to you too Escapologygirl ! Thank you for letting us know that other people do know what we feel like too. From what you have said it is easy to understand why you are at your wits end!
You are dealing with a lot and unfortunatley it seems like you are being passed from pillar to post. Whilst I am in no way making excuses, your situation with third party agencies, certainly is from a lack of understanding about the condition.
On a more pratical note, are you able to appeal this decision regarding Invalidity Pension and are you in regular contact with your GP and or specialist? The reason I ask is that I am currently not fit for work due to mental and physical health reasons, endometriosis is the cause and it also affects my mental health due to prolonged flare ups.
I have posted a link regarding information endometriosis in the workplace. I appreciate that this is not currently relevant but the information contained could help any appeal to your application for Invalidity Pension, to explain why you are incapacitated:
On a final note, have you retained any paper work from agencies like 'employability' as to why they deem you are not fit for work? If not, request this from them, as is your right under GDPR (general data protection regulation)?
Thank you so much for your reply and I really wish I lived in UK sometimes. I have nothing from employment as I am or used to be a homecare assistant for agency work and only got work when we said we were available.
I have 21 days to appeal and have a wonderful GP who I am contacting Monday morning. My specialist is my gynaecologist and not worth it as are most of them over here, Ireland is pretty backwards in female health issues.
Like you my mental health is crap due to the chronic pain and daily struggle that is life now. I just had the worst Christmas as my period came on Dec 30th and as you probably know the build-up was emotional and exhausting and my sciatic nerve is just not going away. Its my newest development and no matter what I do ie stretch it or warm shower nothing helps. Going to the toilet is horrible as I have to go a lot and on period it's extremely painful.
I feel your pain! I have the sciatic issue down both legs, but predominately left! I’ve also toe walked since I was a child, so as you can imagine, I’m tight anyway! Add in the weakness from hormone treatment, and the sciatic nerve, and I am a cripple! I am signed off for life but I do work! Currently 24 hours but thinking of reducing them to 18!.. I get part supported!
You have to really make them aware of everything! The physical and mental toll of the disease, chronic pain, and on top of that the side effect of the medications! Which is just as crippling as the disease!
I have been removed from hormone treatment because of my blood pressure! But let me point out, the combined pill slows muscle recovery by double! Add in prostrap/Zoladex and you’re asking for trouble! More pain! 5 years of hormone therapy nearly landed me in a wheelchair! I’m sat here on my period, and I can barely walk 🥲!
You need to make them known, you need early retirement!.. Fight them all the way to the courts! You’ve nothing to lose! Xx
Thank you so much for your reply and you are right. I intend to fight for myself and don't care how graphic they think I sound like I am going to keep at it. Its sad that we are reduced to this. I'm so sorry to hear what you are going through and hope you're ok.
Thank you for reassuring me that those hormonal injections have definitely left a mark on me, was wondering if this was the reason for my declining mental health and muscles not being as strong as before. The exhaustion is unreal and constant. Each period since they restarted after the decapeptyl injections is worse than the last one and come Feb 2nd this year it'll be a full year since I last worked. My GP is refusing to declare me fit for work so I'll be going to see him as soon as I can get an appointment next week. Xxx
also, I’m assuming you ain’t looked at further treatment, like surgery because Irelands a bit rubbish! But you may want to look abroad for treatment! You can in Britain, so I’m assuming you can in Ireland, have the NHS fund treatment abroad!.. Google will be your biggest friend in this situation! Xx
Yes we have the cross border initiative but we have to fund everything ourselves and its quite expensive, our overpriced private health insurance which if you don't have means you'll be on public health service waiting lists for years doesn't cover us abroad. Our public health service will give us some of the costs back after we get home and submit costs. Uk is definitely eons better than Ireland for healthcare. The majority of Irish women with endometriosis go to Hungary as they have 5 specialist endometriosis centres and no waiting lists. Very few of us can afford this option as without a job its hard to fund. X
hi I am so sorry to read this. I was diagnosed with endo in my womb and bladder and was in excruciating pain with heavy periods for several years. I was lucky enough to see one of the royal family’s gynaecologists via my private medical insurance and he placed me on Cerazette ( a daily progesterone only pill) since Jan 2020 and since then I have had absolutely no pain and no periods at all. I do get spotting which can be annoying but otherwise my life is back to normal again and totally pain free even though I still have endo. Do see if you can be prescribed that as it’s suitable for most women x
Thank you for your reply and you are indeed fortunate where you are. I was on the pill from age 21 to mid 30s and was on dianette and cerazette. Unfortunately my periods got too heavy even on pill and cramping was really bad so it's been noted even by my GP that birth control/hormones treatment is not my friend. Hence the situation I'm in.
Hi Escapologygirl,Just read your post and replies and really saddened to hear your struggles with your condition as well as with the health system and lack of support.
As surgery seems difficult at the moment do reach out to your gp or dietician and online yourself to review your diet, lifestyle to help alleviate some of the symptoms you are getting. With endo being hormone related certain foods are really helpful and others should be avoided and I've found it to help get through the days and weeks especially around your period time. Your health and will being is so important and try to stay positive and get fresh air, a short walk etc. Maybe try acupuncture as I found it help my back pain albeit as a temporary solution.
Certain daily floor exercises at home specifically to help endo are worth a try. Peppermint tea or tumuric tea and foods to help reduce the inflammation bloating etc inside our bodies and some really good endo sites on this too.
Hope you feel better soon 💕 💓 and get the support you need from family and friends. Takecare xx
Thank you so much for your reply. My GP in refused to declare me fit for work advised me to focus on my health ie my diet, mental health and trying to walk as much as I can. So I follow the Mediterranean diet and have my weight almost under control in as much as I can with endometriosis and hormones. As next month will mark a full year of not working I understand what my GP means and he's remarked that I'm doing well and we are trying to keep on top of symptoms and pain management. Even he had said that the Irish gynaecology department is clueless. X
Hi. I live in the U.S. and am on permanent disability. I was denied the first 2 times, but retained an attorney on for the 3rd try. I was finally approved! Perhaps you have that option to try again. I don’t know how it works where you live. Best of luck to you. We feel your pain!
Thank you so much for your reply and wow I had no idea what it's like for endometriosis in USA but good on you for your attitude. I'm certainly going to keep going until I get it. Thank you all for your kindness and support xxx
oh my gosh . Story after story like this on here . This is also my story . I’m so sorry . Bladder and rectum and everywhere else and no one acknowledged it in my family or my AA program I’m in …….or friends ….it’s been a long painful life that I tackled on my own. Why don’t people want to hear about it . I guess it’s too much to hear and too gross.. The pain ended after every female part was taken out and no estrogen (estrodial is the worst which of course I was taking after two operations). I couldn’t figure out why I was still in pain until I went to a dr who said my estrogen is feeding my endo roots like flowers in a garden . My gyno NEVER told me it has roots that can grow back. Anyway though I stopped estrogen’s and also nuts and coffee aggravate my pelvic area . But other than arthritis I think all endo pain is gone .
Also now I’ve demanded that my family and friends acknowledge this and they are . All I say is LOOK IT UP . Advanced endometriosis. I get heard now .
Thank you so much for your reply and I'm sorry you had to go through that. Its like everyday is just a daily struggle and stress and by the end of the day I just want to curl up with my hot water bottle and sleep from the constant dull aches and the extreme pain on period. I've only just made the connection that my constant need to go to the toilet and the effort of trying to just 'go' and still not feeling relieved after along with the burning feeling while going is because of my endometriosis. If one more gynaecologist tells me I need to exercise and lose some weight 😫. I've managed my weight and still the pain won't go away. I think my travelling is over for a while as I find it hard enough just getting around day to day. Is it really a case of getting all affected parts removed 🤔 does it help? I cannot get one gynaecologist to even mention a surgery. Xxx
Thanks for reassuring me I'm not going nuts. Like as a homecare assistant looking after elderly people can you imagine how fired I'd be if I spent more time trying to pee or poop than looking after the patients 😳 or as I don't have a car trying to walk to my patients house and dealing with my back and sciatic nerve and getting there late as a result and these are the idiots who work in the health sector?
Aw…you really look after older patients.? That’s very sweet.
Well I just feel bed for those trying to keep their uterus because that’s where the blood comes from .
So diet? Exercise??? Like I said last night ……unbelievable idiots . I’m still shocked that different drs I had didn’t tell me that . I always went to drs and now I’m so mad I spent years again in pain after second operation ……she didn’t think to tell me why?? And why didn’t I question this more . Actually they found a large beneign tumor or cist in me and that’s what I thought the pain was from . So after the operation they told me how much blood and lesions and bla bla bla on everything and they took out both ovaries . For some reason I didn’t put it together .
Now I’m 65 and haven’t had this pain for some time .
Oh wow and by the sounds of it nothings changed. All I remember after my one and only laparscopy was that my tubes were removed due to being so badly damaged by endometriosis and that no further action would be taken like surgery due to endometriosis being on bladder and rectum and fear of damaging other organs therefore he recommends only hormonal treatments which really didn't suit me well and left me worse than ever. That's private healthcare in Ireland. I'm 44 now and things are just going from bad to worse, like the sciatic nerve started around November and doesn't seem to be going away anytime soon. I've often thought world would be better off without me I get so down and emotional and tired of having to keep fighting.
well I do have that damn sciatic nerve problem and I take gabapentin. It helps with moods, nerve endings etc.
So I’m feeling MUCH better .
But emotionally I’m so bitter I lived a life of pain and all those years had no idea the estrogen was feeding the endometriosis. No dr told me and I went to several specialists. It was a nurse or action a really run down place . I couldn’t believe and went home and flushed the rest of my estrogen down the toilet . It took several months but I kept feeling better each day . I had a horrible sciatic nerve issue and still horrible back pain and all across top half of rear end along with lower back. That now gotten much better .
Maybe from the gabapentin. But again….I’m a bitter bitch and I am apathetic now and depressed. Pain was all I knew .
😈🥲
Now I’m trying so hard to not be a martyr . But it’s too hard . 44 is young !!! 65 isn’t. That’s why I’m so down . It’s “what could have been”.
On the up side …….they physical pain from endometriosis is gone .
sorry for typos . I said it was a practioner nurse in a very rundown low end dr office that said “what??? You’re on estrodial??? And you had endometriosis??? This is feeding it !!”.
I just truly appreciate your help thank you in reassuring me its not in my head and describing my daily life so well. I have to wonder how these gynaecology clinics get their qualifications. Unless you are having a baby they have no clue how to help you. Trying to get an appointment with my GP who is really good to see how I can appeal this idiotic decision. Like going to the toilet constantly and still feeling like I'm going to wet myself and the uncomfortable feeling when peeing and I'm finding I'm easily bitter and bitchy with everything as I'm just tired of the struggle. 65 is young still and I'm happy to hear you're pain-free. At this stage I have no idea what menopause is going to be like or how long it will last.
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