Can you reject GNRH analogues? Consequences? Please help.

[SeventeenNineteen]

Hi there,

I'm going in for my second Endo surgery next week, 9cm endometrioma, and the MRI showed a few other lesions. My last surgery was 6 years ago, and they removed a 16m endometrioma.

The surgeon called last week in response to some questions I had and made an offhand remark about having a shot for GNRH analogues. I had no idea what she was talking about. She made no mention of this during the pre-op consultation I had in March. I had never heard about this before, and she said casually how I would go in pre-menopause, but after the treatment in 6 months it would go away. 🤯🤯🤯🤯 WHAT? I didn't even catch the name of it.

I was caught pretty offguard by this as I did not have this treatment before with my last surgery. I asked why it was necessary because it seemed quite serious and she said it would help me "heal better".

I've tried to read up on these and I'm absolutely terrified about the side effects that some are reporting. I've had bad reactions to hormonal birth control in the past (migraines with aura, confusion, anxiety, suicidal thoughts) so I'm absolutely terrified to take any sort of hormonal treatment. I've not had any hormonal treatment for over a decade now.

What would be the consequences of rejecting these shots? Would I be classified as "rejecting treatment"? Or would there be any sort of consequence for me to seek further treatment? I am on the NHS. Will my healing be much worse? What should I say?

My concern is that I lost my job 3 months back and I am desperately trying to find a new position. It is hard enough with Endo, the pain and the imminent surgery to be on the job hunt, but thankfully I am getting close with some interviews that might work out. I really can't afford (literally!) to have my mind go when I might be starting a new job. I need a new position desperately.

My endo pain is severe, but it is nothing compared to the pain I feel when I'm literally seeing the last pennies drain out of my savings account for my daily living expenses. I would not want to on the GNRH to alleviate any symptoms if it has the consequence of having some other side effect I can't control. I certainly don't want to start a new role with that sort of thing hanging over me. I can only take so much.

What should I do?

[EndoJaz]

I have refused this because of the side effects, they aren’t interested now and say I can’t have any more surgery. I have had hysterectomy and more excision surgery, have painful tummy and bowel movements but they say control it with pain relief which does nothing. I wouldn’t have a jab as I too get side effects from a lot of meds and won’t take the risk. Good luck with the surgery, hope it goes well and they get all of this horrible disease out xxxx

[SeventeenNineteen in reply to EndoJaz]

Thank you for your response, I am so sorry to hear that you have been treated so poorly. Thank you so much for the good wishes, I hope you find some relief as well soon xxxxx

[Giraffegreen]

So I think it may depend on your gynecologist. I turned down the injection and mine was not happy, and she did write down refuses treatment. Which made me angry because I'm not refusing I'm just aware the injection may cause more problems not less. After a lot of back and forth she suggested the depo shot. Then when speaking to my physiotherapist she just recommended I ask for a second opinion with an endometriosis specialist. Ultimately if you're not in a place right now to try the injection then you can voice that. It might just make your gynecologist unhappy, but there are always others out there. I don't think the NHS can just out and right refuse to see you, at least this is my experience.

[Rainbow2468 in reply to Giraffegreen]

I'm awaiting a second opinion this time from a gynecologist who doesn't lie and has knowledge of endometriosis and adenomyosis 😊

[SeventeenNineteen in reply to Giraffegreen]

Thanks for writing in, I am worried about this, I think if I was made aware of this months ago I might be more open (I was still employed then lol) to doing the shot, but now its just too much to bear.

I have a job interview today, fingers crossed!

[SeventeenNineteen in reply to Giraffegreen]

Thank you so much Giraffegreen, I will ask for a second opinion as well. Things happened quite fast, and I didn't feel I was in a position to advocate for anything before. I was admitted for emergency due to pain in Feb, finally had the MRI last week and they booked the surgery two weeks later. The endometriomia grew 2cm since I was last admitted to hospital in Feb. I know so many are waiting for surgery for so long, I'm just thankful I'm getting seen so quickly, so I didn't want to cause anything to disrupt that. I only wish I knew to ask for additional opinions.

[Lindle]

If you are in the UK are you being operated on in a specialist BSGE accredited endo centre?

[SeventeenNineteen in reply to Lindle]

Hi, thank you for your response, no I am not, unfortunately.

[SeventeenNineteen in reply to Lindle]

I really didn't know it was an option-- there is one just across the river from me, and quite a specialist too, I had no idea to ask or if there was a difference.

[Lindle in reply to SeventeenNineteen]

Are you in England?

[SeventeenNineteen in reply to Lindle]

No, Scotland

[Lindle in reply to SeventeenNineteen]

It sounds like you have severe endo and this must only be treated in a centre. There are centres in Aberdeen and Glasgow lead by female surgeons - could you be under one of these maybe?

[SeventeenNineteen in reply to Lindle]

Hi Lindle, no unfortunately I am not in either of these centers. I'm starting to get really scared now. I don't want to cancel my surgery but I don't want it to be done by the wrong person.

I had a good impression of my surgeon from the onset, the emergency team said she was an "Endo specialist" but I don't see any of that when I Google her, just looks like regular gynecology surgeon. But there is very limited information on the Internet about her, I don't think she has been in this country long.

Trying to stay positive about things but definitely feel a bit more in the dark about some of the options I might have.

[moonghost]

I also refused Zoladex, but I have not been refused treatment. I’m not on any hormones and my surgery is next week - I was put on the waiting list in September last year. Honestly I have no idea whether that was affected by my decision not to go with Zoladex, I informed the gyne department I wasn’t going on it the same day they put me on the waiting list and 11 months seems about right for waiting times in London… but who knows.

[SeventeenNineteen]

Update here from me:I had my surgery yesterday (boy, that's another post) and I mentioned to my consultant that I do not want to have the hormones. She was very empathetic and understanding about it. I had one ovary and one tube removed and removal of lesions from uterine wall, bowels, elsewhere. All in all the surgery took 5 hours and she said it was everywhere. So hopefully rejecting the hormones is not a bother with the future. Here's to recovery 🤞🤞🤞