Surgery waiting list

[Cris_SC]

Hi all! I’ve had my results back from the MRI, they’re not great but not awful; endometriosis stage 4, 2 cysts of 7cm each of them (tenis ball size), both tubes need to be removed and endo and adhesions on my bowels 😵‍💫 My surgeon has said that minimum 6 months, which I thought it wasn’t too bad after all, but he said I need to try and push it through admin team and PALS to get the date forward as he thinks it’s a bit urgent. Admin team has said the actual waiting time is around 12 months and they can’t help bringing the date forward. PALS has advised to ask the GP to send a letter to gynaecology team and that might help. I do not know what to do anymore, at the moment I have severe pain every single day and I’m just staring tomorrow with Zoladex as I think is my only option to get through the waiting until I get the surgery. I’m quite scared to be honest. Is there anything that you can think of that can be helpful for the waiting time? Any good reviews for Zoladex? I also have the Mirena coil, I don’t know if that makes any difference. Thanks all for the patience 🙏🏼

[Mindfullness4791]

My gp expedited my gynae appts a few times. The last letter she sent, I had my hysterectomy within 3 weeks. I was on Zoladex for 6 months but found the menopausal symptoms brutal. They added in hrt, which flared up my condition.

I hope you get a date soon. Take care x

[Cris_SC in reply to Mindfullness4791]

Thanks a lot for your response. I hope you are feeling better. It’s heartbreaking to hear all our cases and how much we go through. I’m praying for the best outcome with Zoladex until my surgery date, whenever that is. Thanks again for taking your time to respond. All the best.

[Sunset-lady]

I'm on zoladex and it's a life saver. I bleed constantly without it. You need a little addback HRT to help you with mood. Google menopause symptoms as some can take you by surprise. I had already faced 10 years of peri menopause so zoladex chemical menopause was fine but it can be a shock if you aren't used to the symptoms xxx

[Cris_SC]

Thanks for your response! I will do as you say, my surgeon/gynaecologist also has prescribed Tibolone HRT in case I needed so I’m guessing I should be covered with that. Thanks again, all the best 🙌🏼

[Sunset-lady in reply to Cris_SC]

Yeah Tibilone will help prevent any bone mass reduction but it's not real HRT so if your mood is low it won't help. It stimulates estrogen receptors but doesn't give you estrogen. Monitor your symptoms x

[Cris_SC in reply to Sunset-lady]

Thanks for the explanation, I don’t get this much information from the doctors 🫠 I am very grateful to all of you caring and taking your time to respond. I certainly will monitor my symptoms. It wasn’t pleasant to get the implant today but it’s done and I’m just hoping for the best outcome. Thanks a lot for your time.

[Chartolfrey]

Im on zoledex just had jab 6. By injection 3 it really started to work and i look forward to my next jab. No periods for 12 weeks, no uti for 12 weeks and the pain is minimal when i get a flare. Thats usually if i get stressed or jab is wearing off.I have tiberlone hrt added back at jab 2 and again took a month or so but i have hardly any menopause side effects.

Im portsmouth down south and was told 12-18 months from when i signed the forms in may and i have severe endo, ado, fibroids, endemetriomas and it stuck everywhere.

Its worth a try but can take 8-12 weeks to see the change

[Cris_SC in reply to Chartolfrey]

Thanks a lot for your response, see how Zoladex works on me, hopefully I’m lucky with the symptoms and side effects 🙌🏼 thanks for sharing your experience!

[Purpleindigo]

Hey,

I'm sorry to hear that you're having such a crap time! I'm also from the UK and was in a similar position, 3years ago I waited 41 weeks for stage 4 'urgent surgery'.

Unfortunately, with endometriosis you have to turn yourself into the systems worst nightmare to get anywhere.

In the end I wrote a PALS complaint quoting all NICE and ESHRE standards that they had breached and reported my case to the CQC and sent PALS the reference number for that....oddly enough I was then given a surgery date within a week.

I would definitely recommend you do this. If you are still at a point in your life where you want children, play on the NICE guidance section 'management of endometriosis when fertility is a priority'. You absolutely cannot be left as you are for 6-1year as this will compromise your chances further, meaning your hospital, forcing you to wait, could be the cause of being unable to have successful IVF in the future.

I'm sorry I don't have any personal experience with Zoladex !

I hope you get somewhere soon xx

[Lucinka17 in reply to Purpleindigo]

Hi, can I speak to you privately about the letter you send please?

[Purpleindigo in reply to Lucinka17]

Absolutely! Please feel free to DM on here 😊 x

[Cris_SC]

Thanks for letting me know, I will definitely try what you have said. Thanks for sharing your experience, this is very helpful for me.

[painhater88]

I've been waiting for a lap since November and now reacing breaking point as all my gp is giving me is painkillers that don't work. And told me to send an email to PALS.

[Cris_SC in reply to painhater88]

I’m sorry that you are having a hard time, I totally understand you. We’ll have to try with complaints as advised here as that’s the only way to bring the dates a bit forward. For my first surgery I waited nearly 2 years but I wasn’t as bad as I am now so I didn’t complain and I accepted the waiting time. But we know our bodies and we know when it’s not possible to wait. I wish you all the luck.

[painhater88 in reply to Cris_SC]

Thank you, Its seems we have to complain to get anywhere these days. I've been struggling over ten years now and they've only just questioned if endo. I feel can't wait much longer and thats what i'll be saying. Good luck to you to.

[Lornalost89]

Zolodex has worked wonders for me for the past 4 month. My specialist has decided to just keep me on it long term rather than operate. I havent had any add back HRT however she said I need to have it.

If it flares up ny symptoms I will be stopping it. For me i know long term it's beneficial but if I get my life back for now without it I'd rather live my life the best I can right now than worry about the future x

[Cris_SC in reply to Lornalost89]

Thanks for your response, I’m so glad to hear that Zoladex worked for you! I am really hoping it also works for me so I can have my life back. Thanks for sharing your experience, I hope you keep doing well 🙌🏼