Can't cope

[Smileyblonde]

2 days every month im completely debilitated. I can't work look after my kids even showering is a complete chore. The pain is so severe ive passed out. No pain killers help ive taken them all and prob to much. Living in belfast the bhsct say it's an 83 wk waiting list for hysterectomy even though I'm boarded as urgent . I just can't do this any more . I know its only 2 days but it's only 2 days of pain before that I've the fatigue the flashes the moods the anxiety and the feeling of dread that for 2 days its complete agony . Endo has completely taken over my life I finally managed to get an appt with my consultant for this Monday. I'm gonna ask him to prescribe me zoladex. Did love to chat to anyone who has had zoladex. I'm afraid but the pain is so bad I'd take poison

[Maxi72]

Hi there

So sorry you’re going through hell. Have been there too- with some endo that’s inaccessible by surgery and has caused motor nerve damage in one leg, I have been in extreme agony ( and I do not use the term lightly) and was unable to move let alone toilet myself or walk! When the cause was eventually considered as endo I was referred to Gynaecology, I didn’t respond well to Cerazette as it affected my mood terribly ( I’m not suitable for the combined pill due to migraines) so Decapeptyl was the next choice for me. It was like a miracle! Less so with HRT but still life is bearable. Since then I’ve been swapped to Prostap and have been having injections now for over 18 months with HRT. It’s a long term thing for me so I’ve had a bone scan and imagine that will happen periodically. Could say lots more but feel free to ask anything you like. Zoladex is my next option if Prostap stops working. ( I think certain hospitals have certain drugs as their first, second and third options.) Hope you have a good endo day today. 🙂

[Nikki84 in reply to Maxi72]

Hey Maxi, I think you should check out my story on my page, I think we may have a few things in common

[JulesUK]

Hi I totally understand how you feel this illness is totally debilitating. I used to take far more tablets than I should but just be careful as they can damage your stomach. I took zoladex twice first time for six months and second time for two years with HRT. It did help a lot with pain and symptoms. I did feel very tired on it but everyone is different. For me whenever I came off it the endo returned. I now have the Mirena coil which has given me a relatively normal life back. Hysterectomy may not be the answer given that some still have endo after. I hope you can find what’s right for you. x

[Natalie-c]

Totally understand where you were are coming from my periods were horrendous it felt like a hurricane passed through my body up all night just pacing around and literally sick with the pain and such heavy bleeding! I’ve just had my last Zoladex injection 10 in total in it truly has changed my life no periods no period pain! I have a total hysterectomy and bowel resection in 3 weeks so truly the end of periods for me. I really recommend the Zoladex it helps with the long NHS wait for a hysterectomy and helps to shrink down the existing endo to make the hysterectomy easier. The only side effects I had are the hot flushes invest in a mini fan! Try not to have top up hrt as this kind of defeats the object. The injection looks scary but really isn’t xx

[poppy75 in reply to Natalie-c]

I just wanted to say 'a hurricane passed through my body' is brilliantly descriptive. I'm also stage 4, people ask about the pain so I try to explain its level but until I'm in 'it' it's impossible to describe how all consuming it is. The pain, the sweating, the dizziness, the vomiting. The symptoms completely consume me from head to toe, in retrospect it's difficult to remember/explain apart from just explaining the pelvic pain. It's so much more than that. You're spot on xx

[Smileyblonde in reply to poppy75]

And then today boom completely gone and nothing just tired. Don't think anyone gets it. Hoping that this month was my last and that zoladex will help next month.

[poppy75 in reply to Smileyblonde]

Fingers crossed for you. Mine has become more daily and chronic on cerazette but it has at least stopped those worst episodes - collapsing, vomiting, unable to move for hours etc. And yes, I'd be on a bloody high the day after it passed! I'd return to work after 3 days or so of clinging to the bed and a bucket and be in the best mood due to sheer relief it was over. Very hard for others to decipher what's really going on.

[Music1]

Sounds exactly what I used to go through. I used to have pain so severe I would pass out, end up in hospital, spend days in bed at a time totally drained with pain and sometimes curled up in pain on the floor crying. It was so debilitating I nearly lost my job. I had a laparoscopy and was diagnosed with stage 4 Endo and a lot of damage. My GP prescribed Tramadol which I didn't get on with initially and was quite worried about taking. However, after being on so many ibruprofen, paracetamol and any other painkillers I could get over the counter. Tramadol has been an absolute godsend. I only take 1 or 2 when I absolutely need them, and it means I can 'carry on' if I'm at work, on holiday, out the house etc. I used to panic that I would end up in hospital somewhere if I was away etc. I know exactly what you mean when you say taking a shower, drying your hair etc is exhausting'. I have totally been there. My GP doesn't like prescribing Tramadol as she says it's addictive. I take 1 or 2 when I need them and it means I can ... be myself again, no pain. I'm just sharing what works for me, and as I don't take them in the evening before bed as I am not able to sleep and feel rough in the morning. If I'm in severe pain though, of course I take them as I wouldn't be able to sleep anyhow. Don't know if you've tried these before but I would recommend giving them a go if your GP would let you. I honestly feel like I've got some of my life back, and confidence to be at work and 'cope' rather than doubling over in pain, and other colleagues feeling like they need to take me to hospital. I hope you find something that works. I've been through it, and wouldn't wish it on anyone. This works for me... just sharing my experience. Best wishes x

[Hotmama11]

Have you complained to the BHSCT about the ridiculous waiting time for urgent surgery? Are you happy with your consultant? Surely they could do more for you?

[Smileyblonde in reply to Hotmama11]

Hi I managed to finally get surgery am nearly a week over it now and so glad it’s done x