Made treatment decision, now what? Any help gratefully received

[Bettybloo]

Hello,

I'm back from latest gynae visit and just want to cry. I've been told my options and for various reasons the only one that seems viable to me is Zoladex prior to possible surgery (I'm very aware this doesn't work for everyone and can have horrible side-effects, but have tried most other things over 20+ years).

The problem is I didn't stand up for myself in making my choice and the consultant said I should take time to think & arranged for me to follow-up with the specialist nurse in 4-6 weeks, even though I had said I couldn't take another month as is. Tried to call back as soon as I got home, but no answer even though they were still open.

Does anyone have any idea how I can confirm my chosen course of action and get the ball rolling without having to wait for the follow-up? It doesn't seem worth waiting and taking up a valuable appointment when I already know. Could I just go straight to my GP?

Would value any input as I need a bit of hope right now!

[Midgetpants87]

Hi Bettybloo. Can I ask what decision you have made? X

[Bettybloo in reply to Midgetpants87]

Hi, of course! I just want to start the injections asap, to see if they have any effect.

[Midgetpants87 in reply to Bettybloo]

I appear to be in the same position as yourself. I went to my appt and chose to have a HSG (as less invasive than a lap and my previous lap in 2016 was negative for Endo). I changed my mind the next day and decided I wanted to go ahead with surgery and be on the pill until then. I called gynae and they advised that they would write a prescription for the pill (straight away) however I have to go back and see the consultant in order to sign consent forms and discuss the surgery risks - and that this must take place in person, with the consultant (frustrating!).

The reason I asked gynae to write the prescription for the pill was because my GP wouldn’t write it - he wanted the consultant to make the decision about whether I could be on the pill whilst awaiting surgery. Xx

[happyseal in reply to Midgetpants87]

Actually, even if you were going for the surgery the appointment to sign the papers wouldn't be on the same day. That would be a separate appointment when you already have a date for the surgery.

I get you, tho. My GP doesn't do much but the GP also don't have any details on my treatments and what is going on about endo because the consultant rarely sends letters to update them.

[Midgetpants87 in reply to happyseal]

Hi. Not sure if your locals work differently to ours but the consultant has outlined the next steps…I’m defo signing the paperwork at my next appt and at that point I won’t have a date for surgery. I will have to go back for yet another appt to have the pre-op though - so frustrating. They’re even doing the pre-op without a surgery date.

It’s such a shame your GP doesn’t get much update, my consultant had been really good and kept the GP up to date all the time. X

[happyseal in reply to Midgetpants87]

Wow having a pre-op without a date doesn't even make sense since you current health may change. That's is such a strange approach. Plus I would forget everything by the time I get a date. Unless they also give all the information written. But still. Good that they at least keep the GP updated.

[Cailleach]

Just a couple of ideas. If you can’t get the consultant, try contacting the specialist nurse and explaining. Or speak to your GP and get them to contact the consultant with your decision, and that you are keen to start treatment ASAP.

[Bettybloo]

Thanks Midgetpants87 & Cailleach - good suggestions. Sorry to hear you're going through something similar. I know it might sound really impatient but my symptoms have been getting worse month on month since the start of the year till the point where I was basically not able to function for about 10 days this month, so really just want to get on with something/anything.I'm trying to get through to the department at the moment but they seem to be closed again, so thanks for the GP suggestion. x

[JOSANDY40]

Zoladex isn't easy but nothing else is either. Surgery you shouldn't have many times as it will increase scarring and possibly more surgery cos of Surgery.Zoladex was hard to get through the 1st few mths but after that life was better, I could manage, I did enjoy sex.! I feel its a good drug.

[happyseal in reply to JOSANDY40]

Ohh...happy to know that it made sex better for you.I feel that it has completely ruined sex for me... I get a lot of side effects. Does it impact your sleep as well?

[JOSANDY40 in reply to JOSANDY40]

I stayed on Zoladex 10yrs straight which isn't advised. I was able to stay in my career. At the end of this time I developed Pituary Gland inflammation which lead to a depression and angry moments. My marriage failed. It took me 5yrs to get back to normal. But much older. I now have pain but still finding things improving as hormones lower with age. I now just take co-dyodramial and morfine. Still can't work but manage.For many woman now they have the more painful type of Endo which now is excepted by the DWP. When I was 30 I spent 5 days of each 10 day heavy period in Hostipal with lungs bleeding. Endo you have to except and work round it. It's a learning process. It can be done. Learning about ways to improve your minds thoughts about pain and stress will help you put Endo into second place and yourself back in control. Reading about relaxation, reflexology, healing yourself. Breathing. I thought it was all nutty but once I I braced this thinking it helped my a lot with dealing day to day. I feel the System fails people with Endo. I wish there was help out there for others like us.

❤️

[happyseal in reply to JOSANDY40]

Thank you for your message. It's true hormones change with age. I feel that now in my 30e things are worse since progesterone starts dropping a lot. But yes it took me a while to realise how important it is to have the right mindset. Your message is very inspiring. Thank you 🥰❤️

[happyseal]

Hi Bettybloo,

You can just call the reception and they should be able to see what the doctor wrote on your file and confirm if there is a prescription for zoladex.

If there isn't any, or the receptionist cannot see any notes, you can request a call from the consultant to discuss it. TBH the consultants rarely call back.

That being said you can send an email to the department requesting the information and prescription asap because you are in pain.

The receptionist should be able to provide you with the contact email of the department. They won't give you the contact email of your consultant since only the consultant can provide it.

If none of the above work, you can discuss it with your GP and request a prescription for zoladex, because you are in pain and don't want to wait at least a month to get an appointment with the endo consultant just to be prescribed zoladex, and that it had already been discussed in your previous appointment with the endo consultant.

May I ask what else have you been doing to manage endo and your symptoms?

I hope the above help.

[Bettybloo in reply to happyseal]

Thanks happyseal - I did end up sending an email to the department as the secretary said it was the only way to get in touch with the specialist nurse. I'm not holding my breath for a reply...At the moment I just have painkillers which do nothing, but pain is only about half of the problem in my case anyway. (Have tried plenty of other things in the past (inc. surgery), but that's a very long story!)

[happyseal in reply to Bettybloo]

I find that lifestyle changes help to minimise the pain. And some of my symptoms I do different things to minimise them as well. For example, I get terrible constipation that even laxatives do nothing, but I find that just having daily celery juice first thing in the morning keeps things moving.