I'm so desperate, i need any advice anyone can give me!
Backstory:
Diagnosed with stage 3 endo with cysts on ovary. Jul 22
Had son sept23
May 24 admitted to hospital with PID
Since may my symptoms have gotten 10 x worse. Ive been off work a few times and on a stage 2 sickness monitoring (nhs nurse on 12-13hr shifts).
I cant make it through a full day anymore, my work wont help me and ive gotten the union involved etc..
Now over last 3 weeks i've been getting muscle spasms in my abdomen that has caused me to pull over if im driving or cause me to panick. I've also got more ovary pain all the time. Wednesday gone i was on the floor in my works bathroom and got sent home, my manager phoned and asked if id be in today and i said yes at the time but last night i woke up with severe pain and vomitting and had to phone in. I've just started the slynd pill (Drospirenone) too and feel awful.
I'm just such a mess, i feel like such a burden on work and family. I cant take the constant pain everyday. That i cant do things with my 1year old. The guilt is eating me alive and im so low. I don't know what to do anymore with work, my health or anything.
Im on tramadol, codiene, gabapentin and diclofenac suppositories.
Sorry it's such an all over post i just need help! Thank you for just reading though.
Hope everyone is ok x
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Booknerd1598
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Oh darling! I’m so very very sorry to hear you are in such distress with work, family, and pain. Then new and scary symptoms on top of everything else. This must be terrifying for you. Being on the floor at work 💔 Then unable to go in to your shift. Feeling like you’re letting everyone down is a lot.
Huge hugs if you like them 🫂💞
1) When is your next Gyne appointment?
Can you ring the Secretary and ask for advice? Is there an Endo nurse? That would be my priority, seeing The Consultant for help. You need medical help.
2) As hard as it is, the stage 2 absence and sickness procedure at work is just a process. It feels horrific as I have been there. You are doing your best. You are on waiting lists and you can’t get the medical intervention and treatment you need. It’s not your fault.
3) Again with family, you are doing your best in a very distressing situation. You need medical intervention that you cannot access. Being honest with how bad it really is, with your Patner/loved ones is a tough call. But maybe the time has come to ask for help. No matter how scared you are. They love you and want the very best for you. They can’t help if they don’t know.
4) my suggestion would be to ask to be referred to Medical Psychology. Gp can do it but a Consultant would be the best. There’s a waiting list.
My Medical Psychologist has helped enormously with so many challenges. My health declined as I got diagnosed with a new condition.
We do Acceptance and Commitment Therapy….Its not solved all my problems. But it has helped to keep me sane in all the changes. But I feel safe.
5) ring the endometriosis helpline for emotional support. Look up the times on the website and it’s run by volunteers and so it can take a few goes to get through. They just do emotional support and they’re brilliant!
I hope this helps to some degree. You remember that you have an army of Endo Warrior Sisters behind you 🫂💞
Thank you so so much, thats such a lovely reply and for all the advice. I really needed to hear all of that today xBig hug back to you!
I rang the hospital yesterday as they keep cancelling my appointment, i've managed to be squeezed in on wednesday! I'm just scared they are going to be dissmissive like all the other gynaes i've had.
My partner is amazing, we talk through everything and he is so supportive. I Just have high standards of myself so beat myself up alot. (Its something i am working on in therapy but thats postnal therapy so doesn't touch on conditions as such so i will give the medical psychology a go!
When it comes to work i don't have a supportive manager, shes not changed a single thing and shot all my ideas down and when i've got my matron and advice from union she was nicer but nothing has actually changed either. They just keep wanting me to do stress risk assessments which i get is part of it but they disregard that its a physical condition that will come on without any warning signs or for me theres no obvious trigger bar sex and period. They have literally told me to get better coping mechanisms and related my condition to a car crash as i'll know what to do the next time! (This is also mental health nursing).
I didnt know about the phone support for endo so thank you for that!
Aww you’re so so welcome 🫂💞🥇 I know when you’re hard on yourself you oftentimes have a “growth mindset”. Which is an awesome positive to have. It will serve you well as will your training from work. I feel confident that you will navigate this as best as you can, a positive/supportive Partner is a big plus too. There’s some info for employers on the Endometriosis.uk website and you can give them that. As they sound useless in some ways. Chronic pain affects your mental health but it’s also physical too and can cause anxiety and depression. You’d think they’d get that 🤦🏻♀️ Also, that it can hit you at any time. It made me feel like my employer was questioning my integrity and it made me feel like I was a liar. Which I am not and wanted to work. Do not allow them to do this to you. You will have a solid track record in your Career, so remember that. Hold onto these positives in wobbly moments. In context of your life, you have studied and demonstrated many competencies required for a Professional Nurse.
In the car crash anology, you’re alive, and neuroplasricity means you can rewire your brain with support. The thing you can’t control is you keep having a car crash every time symptoms hit you. Like when you were on the bathroom floor at work. They need to think about that! The impact that has on your life, your mental wellbeing and the fact that you are amazing. Each flare you have, you get back up again.
You are an incredible Endo Warrior with an army of other women in your corner. You have got this 💪🏻💛🥇
I'm so sorry you had to go through that i hope you are somewhere that is more understanding!
It always surprises me that the nhs can be so heartless and uncaring to its staff! They blame it on you as a person when id rather not cause hassle and just get on with my job which i know i am good at.
Do you mind me asking if you had any reasonable adjustments put in place?
Thank you so much again you have helped me so much. Wishing you all the best too. Xx
I was a contractor (no sick pay) and could of asked The employing Company. But I just had kept going beyond what my body was able to cope with. My trauma response was to fight. It’s very unhealthy. Luckily I had some savings because when you claim Universal Credit you get nothing for 5 weeks. I lived off £74.20 a week for 10 months on benefits. Then eventually got a huge backpayment.
My Landord served me notice and I was made homeless and had to live in a B&B due to my double incontinence, for 9 weeks over one Christmas. Then got rehoused in the best place. A new build. It was absolutely exhausting. But been here almost 3 years now. I have never tried to get pregnant and have no children. I have a dog who is like my baby x
I'm so sorry you had to go through that! Well done for keep going and not giving up despite how exhausting it is. I'm glad you have company with your dog though!
I'm with you on the unhealthy response im the same but it doesnt often work in our favour does it.
I wish you all the best and your an amazing fighter who helps others.
Being a fighter doesn’t work in our favour, no. But don’t be like me is what I’m saying. In that sense. Thank you and when you’ve been at rock bottom, doing what you can for others, sort of redresses the balance in my head.
Hoping for the best outcomes for all my fellow Endo Warriors! 💞🫂
Thank you for asking!For once a dr pre read notes and didnt gaslight! Im on urgent waitlist for another surgery (he said 3-6 months but prob longer waiting) and a mri in the mean tine which ive already got through start of Jan.
That’s positive and you feel you have a plan now, which might help your mh 🫂💞🌻🤞🏼🫶🏻
I’m down with a cold, 2nd week and I feel terrible as immunsurpessed with biologic for Crohns. It’s also not helping my digestion. Getting up to poop in the night 💀 Just about surviving here. Staying warm and sleeping when I can. It’s all tanked my mh and I feel super low. Not the slightest bit up for Christmas. Done the basics and sleeping through. No tree yet….maybe next year. We shall see x Got my dog and my Partner will visit, I hope. His Grandparents who were his legal guardians growing up (Parents basically) are both in hospital on palliative care 💔 His Mum died last Christmas and his Step Dad has bad prostate cancer that can’t be treated. And his 14 year old dog had to be put to sleep because of cancer. This year has been off the scale awful.
I am exhausted. Fed up. It will pass but the cold is so minor but it’s all a lot when I say it all in one go. Hope to get Lego flowers for my Christmas present. I want to make an arrangement in a vase. Defo want sunflowers 🌻 as they’re my favourite ☺️💞🫂 I have 2 Oodie Onsie’s which have a bum flap, so I can go to the loo easily - they make me feel so snuggly and warm.
Big love to you and hope have a better 2025 with answers and treatments that help you. 🫂💞
Oh no i'm so so sorry for you and what your partner has gone through this year!
I do hope that you all have a better 2025 too.
I'm happy i've got a plan but this new pill has caused my MH to plummet and , my manager basically being discriminative aswell as my 1 year old being very ill so havent slept, i've had to sign off work again for stress. Hoping to focus on small self care things and start building the blocks back up!
I've asked my partner for lego too! Those flowers look really good. Sunflowers are so lovely and bright always cheer the room up. I love the rose and sunflower combinations.
That oodie sounds brilliant!
If you ever want to chat even a check in, i think you can message people directly on here i'm not sure, but will always listen.
Manifesting good things for all of us in the future. 🌻🌻🌻
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