Hi everyone, kinda on the verge of a mental breakdown right now and nowhere seems willing or able to help so this is a bit of a last resort for me, sorry if it's the wrong place to post this.
I have endometriosis (diagnosed via laparoscopy in 2020) and it has completely ruined my life. The coil has stopped my constant bleeding (its now just random and frequent) but the pain doesn't go away. The more I physically do, the worse my body hits me back for it.
I am unable to work and ended up in hospital for several days pre diagnosis for trying to push through the pain and carry on as usual not knowing what was wrong.
I had a specialist arranged and applied for PIP after diagnosis as my financial situation as you can imagine is terrible right now and I'm barely affording to feed myself having been unable to work for so long.
...The specialist has been terrible and PIP have declined my application twice now. I was in tears from the agony after being forced to make a 3 hour trip to the hospital the specialist was in, but she showed no care or sympathy. She refused the idea of further surgery and rushed me out of the office after less than 3 minutes. 3 hours putting myself in agony and another 3 hours to get back when the whole thing could have been a phonecall.
She has signed me up to start having some monthly injections i know nothing about and when i pleaded to have them done at a more local hospital was refused. I have been having severe pain when going to the bathroom and so she said she would arrange a scan to check my bladder and bowels for damage but months later I have phoned the hospital today to find out it was marked as non urgent and im looking at a 2 year wait.
Im dreading these monthly trips for injections and I cant even really afford them anymore.
I applied for PIP with the help of citizens advice but i was declined and my mandatory reconsideration has also been declined. My last remaining option now is a tribunal which I dont feel emotionally or physically capable of going through, its obvious that it wont change their mind. Endo just isnt cared about in south wales apparently.
Im already speaking to a doctor about my mental health because this whole thing has left me constantly crying and feeling near suicidal again, but does anyone have any advice? I'm completely lost, feeling defeated and so useless. I don't know what I did wrong or what I'm supposed to do anymore, is there any help I've missed? I'm desperate.
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NikNaxx
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Oh NikNaxx I am so sorry to learn of what you are going through in general and especially how you have been left feeling as a result of your most recent appointment.
You have raised many important points and explained how this condition is affecting you and I do not want to overlook or down play any of them. But I feel I must address some:
This is not the wrong place to post - we care, we understand and we want to help, I am confident you will get some amazing responses, further to this we have a helpline and local support groups (I appreciate this may be an issue)
Physical exertion makes my pain worse, even if I am not in an immense amount of pain, but if I am really bad, sneezing can hurt me
Dealing with the benfits agencies can be very hard due to lack of knowledge about this condition. Today is not the day to plan your appeal. The appeals process is in place for this very reason. You are also able to use an advocate, you do not have to do this alone
The feelings associated with this condition and the constant ripple effect has left me very mentally ill. I have been dealing with this aspect with my GP for the last few years and I am pleased to say it is more stable now
You will not always feel this overwhelmed, but today you are and that's okay. Try to mentally and physically relax. If you are unable to then please don't hesitate to call 111, for your mental or physical well being.
The helpline is next available on Sunday 12th Feb 2023, 7pm - 8pm, below is the link:
NikNaxx you have done NOTHING wrong and you are not useless, you are understandably very frustrated and tired of this all. Let us support you, one step at a time 💚
Thank you so much for the reply, I really needed to hear that today.
I just don't know what to do or how I'm supposed to get by with no income. I cant work without ending up in hospital and losing my job but feel terrible for leeching off of my family like this. I used to be the main provider and I've always been self sufficient so it has just destroyed my self esteem.
The pain you mentioned with sneezing? that's all the time for me. A cough or a sneeze leaves me wanting to cry and I can't even bend down to get something off the floor without being in agony, I've invested in a litter picker like a little old grandma at 28 of all things!
Thank you for the links to the support groups though, I'll definitely check those out. I also have another appointment with the doctor next week so here's hoping I get a helpful response from them for a change.
I am glad it has helped and please hear this, you are amazing, you are dealing with a lot physically, emotionally and you're doing great.
You have helped your family in many ways and they are now helping you. I am very independant too and I struggle with this element a lot. Love your investment (I struggle bending down, so you may have started something).
I have been through various stages over the years some far better than others. I wish my independant/rebellious streak was not so strong when I was younger, as I am only learning to accept help and support now. Don't wait 20 years like me, your story can be different x
Hi,I am so sorry for everything you are going through. Understandably of course this will impact your mental health. I am glad you have seen your gp regarding this already.
Regarding the specialist again I am sorry they have not given more support. At lap did they say what stage? I'd assume severe to be under the care of an endo specialist? I would personally contact the hospital via the patient advise and liason service. I'd do so via email but also call to say urgent. Raising the severe pain you are in refractory to pain releif and concern that this could be deep infiltrative disease. Also highlight you are unable to work or do day to day tasks ( which again shows the severity). I would specifically ask estimated time for the ultrasound and put within this concern that a level 2 sonographer will be needed to assess for deep/ infiltrative disease. As if just scanning uterus and repro tract ( at level 1) this will be missed and they may discharge you. If there is rectovaginal, bladder involvement etc you will also need a multidisciplinary team advise ( I am currently seeing a colorectal and urogenital surgery too). Pending this they have to assess if repeat surgery is needed.
The monthly injections I suspect are gnrh antagonist/ induced menopause? Ask your gp what they are? In my case I'm on zoladex to induce menopause and I am also on hrt. How long have you been having these injections?The first 2 ro 4 weeks there is an oestrogen surge thus endo flare up. By 2 months in I was told this is when can see if they have worked. I was told sucessful in helping 9 out of 10 women. Are you on hrt? I found initially strong bouts of anxiety attacks when I stated zoladex but it's settled now.
Has your gp discussed a pain management team? May be worth discussing with them other pain relief options in the mean time.
I can't say I've looked into pip. I left my job 2 weeks ago after struggling for 7 months since diagnosis at lap and ongoing signs due to rectovaginal nodule and ureter involvement. I luckily have been able to find a remote job as found physical exertion and work stress ( I'm a vet thus alot of bending, picking up pets etc) exacerbating pain and found having constant bowel issues due to endo was making it hard. I'm on a year contract consulting remotely and hoping to focus on health then hopefully will go back to work in clinics. I appreciate I am very fortunate to be able to do remote work in the mean time. Prior to this my hours were so reduced for the past 4 months I have been unable to pay for bills, rent etc so really empathise with you this in itself is huge stress. I hope you are able to get some support financially or for now at least get out of severe pain.
Feel free to message me directly if you want a chat, rant or just someone to listen.
Also forgot to say for my monthly injections I just go to my gp? May be worth again asking if your gp is able and they can contact the specialist on your behalf etc??
I wanted to reply to offer some advice re the injections, but also to say you aren’t alone and reaching out for support is always the right thing to do.
My hospital gave me the prescription for the injections and I rung my GP to ask if a nurse would give them and they said yes. I’m guessing it will be easier for you to get to your GP so if the injections have been prescribed this should be an option for you. I’ve had 3 injections and they have helped with pain, making some days more manageable.
I understand that you feel let down and I always struggled with GP apts etc so I wrote down what I wanted to say in short bullet points to help me to describe all of my symptoms and the impact on my life. You have already been diagnosed with endometriosis and we know there is no cure, so asking for another laparoscopic procedure is not unreasonable at all. I know you have no energy for a battle, but in my experience contacting PALS in relation to poor treatment at hospitals has been really helpful.
Feel free to reach out to me anytime and I hope that you find a way forward soon. Well done for reaching out when you felt unsure, I know it isn’t easy.
I’m so sorry you are being put through such a horrific time. This may not help much, especially as how helpful the service is does depend on your specific NHS Trust and individual GP practice, but there are people called “Social Prescribers” available in some areas. They can’t sadly do a great deal from the medical side, but their whole purpose is to try and help you live well despite ongoing medical issues. They can signpost you to charity support and also government support systems:
If you are lucky and get a good one then they can be a very helpful ally.
Also with regards to PIP, I know you spoke to Citizens Advice, but have you contacted MIND given how profoundly your current challenges are impacting upon your peace if mind? They also have a dedicated PIP advice team and may again be another very sympathetic and supportive ally in trying to challenge claim rejections even after multiple applications.
They can also signpost you to FREE sources of support in your local area who can ensure you aren’t battling all of the cruel life challenges living with Endo presents on your own.
I applied for pip as I was told I might be able to get the help after being on esa last year when I had a major op.
They don’t give a crap basically, sent all information over how I need support with things , toilet issues , mental health and it’s a no that was me appealing the first decision .
I’m under chronic pain clinic etc and still don’t give care no support whatever.
Keep onto you doctor and see if you can speak to another specialist as the one you see seems to just dismiss you make a complaint .
Get in touch with pals if you Google that in your local area they will listen to you and help you .
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