What happens if I refuse hormonal medication?

[Elsa150]

I am in the early stages of any diagnosis so there's no treatment plan as of yet. I'm on a waiting list for a gynecologist, which I've been told can take up to 1 year or more at times. My GP wants me to take hormonal medication in the mean time, and I have read information on here and others sites that all say that's one of the first steps.

I won't ever take hormonal medication, it's a flat out no for me and for very good reason. I have tried them all and they all affect my mental health so badly that it's a danger to my life. Without going into great detail, it's just not something I'm willing to risk again. Especially after I have worked extremely hard over the last few years going through EMDR therapy to try and stabilise my mental health and live 'normally'.

So, my concern is, that when I'm officially diagnosed and i refuse any hormonal medication, will this be an issue? Will they try and make me do it before I'm allowed to try other options? Will surgery be an option?

I ask as my GP has always been very forcful about this. It seems to annoy her that I won't take it. Even though she knows the impact these medications have had on my life and mental health. She always says she understands and the immediately proceeds to tell me all the reasons I should take them anyway.

[Endofitall]

I’m sorry you’re in this situation. I am also sorry she made you feel that way. Sometimes I find if helpful to try and understand why someone behaves a certain way as makes it feel less personal then - I am sure that while it may come across as annoyance it is that your GP is in a difficult position and feeling anxious because all she can offer you is hormonal (pill) treatment, pain relief, and a referral which is clearly a very long wait, so she’s probably frustrated if you’re unable to take up the treatment plan she can offer you as there won’t be an alternative, and if you’re needing more and more pain relief she may feel very nervous about making you dependent on strong painkillers. I hope that helps.

I’m sure once you get to gynae you can have a discussion of all options. I’m not able to do hormone tx as I’m TTC and that’s not been an issue.

[Elsa150 in reply to Endofitall]

Thank you, that's a great way to look at things and really helps.

[Comedykid in reply to Endofitall]

Hi, I have been unwilling to go on hormone contraception due to it affecting my mental health. I’m booked in for a lap in the next few months. After this my surgeon said that he would recommend I go on it again (I will try something that I haven’t tried which isn’t much) as it will help to stop the production of eateogwn which is often what fuels the endometriosis and helps it to grow so it will hopefully delay the return of it - I believe this is the main reason they recommend it. If it affects my mental health again I will come off it and just live with it.

They can’t force you do go on it as it is your body, but I would recommend when you get an appointment with gynaecological to explain it all to them and see what they say. It might be that is just might grow back quicker after surgery (if it comes back at all) then if you were on the pill. But that is your choice to take

[Escapologygirl]

I can honestly say that I have done hormonal injections twice and aside from the mental health the physical health problems are awful and not worth it. The migraine swollen legs bloating nausea coupled with the sudden crying and wanting to kill everyone in sight . I can't tolerate chemical hormones like the pill and chemical menopause, I have refused the mirena coil so many times and like you am facing a very long wait for a specialist endometriosis consultant, I'm 46 now and just on pain management.

[BusyLizzieP]

I lasted all of about a month on the hormonal medication they put me on, before the mental and physical effects on my health got too much. I was bounced around from different gps within the same practice, while trying to get taken seriously. So it was a bit easier to state that I wouldn’t take hormonal medication, and that frankly I was disappointed I’d been prescribed it in the first place without the risks being properly set out. Is there anyway you could see another gp in the same practice?

Since then, I’ve had a lap confirming endo and am on a waiting list for further treatment (likely another surgery), so refusing it definitely doesn’t preclude treatment. Although I’ve had to fight against it every step of the way. But I’ve found it really helpful to do a lot of research on the various medications so that when I’m presented something as a “treatment” I can set out why I don’t think it’s right for me.

Sorry this is a bit of a ramble - but completely empathise! I’ve been there, and I’m really quite shocked at how easily drs will push things with known unacceptable side effects, just to get you out of their office. It’s not right at all.

[Fulham85]

I wasn't offered anything whilst I waited for my gyno appointment but was in so much pain she had to put it thro as urgent in the end so waited 7 months instead of a year + so maybe keep pushing so you don't have to wait as long. Just explain everything to the gynaecologist as to why you won't take hormone medication I'm sure they will understand . Good luck x

[asread]

I have been offered the coil so many times in spite of saying I don’t want it - it got to the point where I said stop even asking me and add it to the notes. I would advise starting out your Gyne appointment by clearly saying you don’t want the hormonal treatment options what are the other options medically and also ask them about can you see a specialist pelvic pain nurse, specialist endo nurse (the hospital I am at have these), can you be referred to pelvic health as they can help with the pain through natural means and also pain clinic or anything else holistic like that.

I also found reading endo specialist websites and books helped for different tips and suggestions and I think lots of small things which are natural can build up to make a big difference

[Ilbc]

Hello,

I am in a very similar position to you. I'm 19 from Scotland and a student and I am currently waiting for my referral to gynaecology, also told it would take over 1 year. I was also told to take the pill while I waited for gynaecology. I tried it last year and it had a drastic impact on my mental health.

I don't have much advice apart from the fact that I'm in the exact same position. I don't want to take any hormones again and I am worried they will give me no other treatment options/refuse surgery etc.

Not sure if this helps but your post gave me some comfort that I'm not alone.