struggling with mental health whilst waiting for operation date

[Jako1982]

I’m really struggling with my mental health whilst a waiting an operation date. I’m supposed to be an urgent case but have been waiting ages. I’ve had endometriosis for 20 years and I’ve never had an operation for it now I have a large and a small ovarian cysts causing me a lot of pain and frozen pelvis.

I also have Crohn’s disease so have to have a bowel surgeon there and every time I ring the waiting list they say it’s hard getting two consultations together.

im just really fed up I wake up in the night in pain every night wondering around at 3am then I still work full time and have a 9 year old child.

it’s two years in aug since I went to a&e with this pain and they told me the cysts were large.

I don’t know what else to do or try? I already take anti depressants I don’t know weather to up them or try kalms or even CBD oils.

I just need my anxiety is sky high and I can’t get on with my life it’s so annoying. If I had a date I’d feel better.

[Endolemon]

Hello🤗I have had a joint app in april: gyne+colorectal. I rung gyne' secretary to chase it. Think she just forgot. I have been waiting for 5 months after my MRI.

I believe you can have a separate app anyway because gyne just explained about his part of my operation and colorectal about his part.

Go to your GP and explain that you already feel suicidal and have been waiting for 2 years, so he can write to gyne to quicken an app.

Somebody mentioned to write to your MP and explain your situation. So MP might quicken the process.

Do you have any prescribed painkillers?

I had some counselling sessions also which helped me a little bit.

I have reduced my hours at work and we agreed for reasonable adjustments.

It is very hard but we need to fight for ourselves 💛

[Jako1982 in reply to Endolemon]

hi thanks for the response I’ve already had my joint appointment it’s the joint surgery I’m waiting for.

My doctors have wrote to them 4 weeks ago and it hasn’t helped. I’m having problems with my liver from taking to many ibuprofen so I’m prescribed codine and I have some oral maorphine for when it’s really bad.

If I just knew a date I’d feel so much better.

I think I could do with reducing my hours.

Thanks hope you get sorted soon as well 🤞❤️

[Endolemon in reply to Jako1982]

I am waiting for the same 😊 Consultant said up to 6 months 🤞I think to call and ask the consultant' secretary every 2 months.And tell your consultant you can take any cancellations.

I am taking co codamol, but that doesn't help 100% . Will ask for Oramorth.

I had Prostap injections and was pain free for 5 months after but with side effect of depression . So I am not sure if I want it again.

I am gluten free, lactose free, no meet, no alcohol.

Yes, I wish us get sorted sooner 💛💛

[Jako1982 in reply to Endolemon]

I had zoladex injections for 12 months they were great but agree caused depression.

Yes definitely try and get something else for the pain the pram or th really helps on a night when the pain’s really bad.

Thank you good luck xx

[Jade2006 in reply to Jako1982]

when did you last see the consultant?

Request to make another appointment with the secretary as he has the power to push it for you too.

That’s good you have spoken to Gp to try and push for you too.

Ring the theatre staff at the hospital and see where you are on the list ?

How did you get morphine , my doctors wouldn’t give to me , and my consultant said it’s only if your in hospital you can get it .

Iv seen the chronic pain team for meds and even they didn’t give me any ,

I like you had no proper surgery just a messed up wrong one last time .

Hope you get your surgery very soon it’s awful suffering , mines also with 3 surgeons xx

[Jako1982 in reply to Jade2006]

I last saw both consulates in December last year.

I’ve rang the secretary who always says if your in pain go to A&E. I know my local A&e will probably just send me home as my operation is in a different location so I think they’ll just say you have to wait.

I was hospitalised over a year ago and managed to get oral morph on prescription then and the doctor has carried it on. I was taking and I still do the 400 ibuprofen but it caused problems with my liver so I have to go steady with them. Also I get codine but because I have Crohn’s disease too I have to be careful with them too.

I don’t use the oral morphine a lot just when I’m at my wits end.

How do you see the chronic pain team please?

Thanks for the response and good luck with your operation. Do you know when it is? 🤗 xx

[purplevelvet9]

Hi there, so sorry you’re experiencing this ☹️ I get angry every time I read these posts and see how let down women are by the medical profession!

I don’t know your situation or whether you already do this but is it possible for you to incorporate exercise into your day. I hate being one of those people that says “exercise fixes everything!” because that’s not what I mean but I’m a big believer in getting out of our heads and into our bodies. Plus the added benefit of endorphins etc. I find if I’m anxious that going for a run or doing a Jane Fonda workout (serious!) helps. Please know, though, that you’re not alone. This is a great group to chat to when you’re finding things difficult.

Separately, if you have the energy, I’d bug the hell out of the gynae/bowel teams. Two years is a long time to wait! I really feel for you.

Good luck, I really hope you get the appointment soon and your anxiety eases.

[Jako1982 in reply to purplevelvet9]

Hi, I used to go spinning 3 times a week and walk a lot before all this but the spinning made my cyst pain flare up.

The consultant mentioned swimming so I started going Jan 22 3 times a week and agree it did help. I’ve been struggling to go the last few weeks as I’m not sleeping well.

I do need to get back into it as I agree it will help my mood.

I tried doing a local dance class but found that made my pain worse.

Thank you 😊 for replying xx

[purplevelvet9 in reply to Jako1982]

Sometimes life be lifin' and it gets in the way of stuff! Good luck with all of it, you could swim outside today with all this rain

[Awwy]

HiHow are you today? Sorry to hear about your struggles. I am totally where you are!

I was finally diagnosed in 2020 after 15 years of pain and no one took me seriously. I was told my op was urgent and listed. Im now into my 3rd year. I have stage 4 endo, Die, inside my bladder and frozen pelvis.

The wait is a killer. I have ended up going to a private psychologist to get treatment. I am also on antidepressants. My anxiety about the whole situation and everything that has happened so far is terrible.

If you want to talk it through I am happy for you to message me. I have the same issue getting the surgeons together 🧐. I have written to PaLs and have a complaint in. Informally for now but will make it formal if I dont get anywhere. My GP wrote to them to expedite it urgently. My psychologist also sent them a letter basically telling them that my mental health will not improve and the wait has excabarrated my anxiety.

They wanted to keep me on zoladex and prostap injection as it was keeping my pain under control to an extent. I have now refused to continue on them. 1. Because I dont want them off licence for longer than 18 months. 2. They mask symptoms and don't actually stop the endometriosis from growing. 3. My joints were bad and no one knows the long term effects of them. From what I read some of the side effects are not reversible when you come off them. 4. My anxiety got worse including depression and I havent slept on them have chronic insomnia.

My mental health has improved so much after stopping them. Pain is back but its the best of 2 evils.

Hang in on there. 🤗 Big hugs. See if you can see a pain specialist on NHS and access pain management clinic urgently.

Wish you all the best. You are not alone. 💜

We are endo warriors!

[Jako1982]

thank you for your response. It’s so nice to know I’m not the only one.

I think I need to contact PALS.

Do you find because of the frozen pelvis if you over exert the pain’s horrible? I was doing a bit of gardening yesterday and today my lower back’s killing.

I’m only 40 I feel like an 80 year old 🙈😂

My moods a bit better today but I’m so up and down it’s awful.

How are you managing? Do you have a date yet? ❤️ 🤗 xx

[Awwy in reply to Jako1982]

Hi. Im 41 and I always say I feel like a 80 year old 🙄. Yes frozen pelvis any physical exertion and im gone. My left side back pain is horrendous. Cleaning, cooking even doing the hoover and im no good the rest of the day.

I just think its easier to take it 1 day at a time rather than think about the future. I dont have a date and there doesn't look like there is one on the horizon.

I work full time from home because any travel makes it worse. Walking is now difficult. My employer i am fortunate has made changes for me and is flexible. I am on a development scheme but not applying for promotion yet because I know I will be off for 4 months and at a senior position thats no good. I will also rush myself back to work because ill have that pressure to go back in a new job at a senior position. My career has been on hold for 2 years!

Glad you are feeling better. 💜

[TogetherWeAreStrong Moderator Endometriosis UK]

Jako1982 I am sorry to learn how you are feeling physically and mentally and purplevelvet9 , I also get angry!

Hopefully you will have a date sooner rather than later and if you feel okay doing so we would love to see your journey.

As always, the responses you have got have been great.

I attended a free, online Webinar, specifically relating to endo and mental health, below is the link:

youtu.be/3t9GyMGjKG4(Not working as expected?)

I found it very interesting and useful 💜