Recent Diagnosis - What are my options?

[frozenknots]

Hi,

I have recently received a diagnosis of "suspected endometriosis" by my GP and am in the process of figuring everything out.

I'm currently 31 and had been on the combined pill since I was 18. I got fed up with how the pills made me feel so I decided to go hormone free and got the copper coil fitted 18 months ago to prevent pregnancy.

In the last 18 months my periods got worse which was to be expected with the copper coil but what I didn't expect was severe ovulation pain which would last days, awful pain when going to the toilet, 'flooding' when on my period and pain in the days after my period.

It got to the point where I felt I had no choice but to visit my GP. Fortunately, she listened to all my symptoms and has referred me to gynae at the hospital to get a specialist opinion. She's pretty convinced that my copper coil isn't the cause of the problem as my heavy bleeding and pain was present whilst I was on the combined pill.

She did say that it might be the case that the referral comes back advising to try hormonal treatments first. I'm not keen on the idea of doing hormones again but I'm willing to give it a go if it would make the pain and bleeding more managable.

My options at the moment are:

Depo Injection - My GP recommends this but I'm not so sure after reading up on the side effects and I don't like the idea of having the hormones in my system for at least 12 weeks if they don't agree with me!

Mirena coil - Again I'm not sure on the side effects on this one, I've heard it can really help with endo symptoms but then I've also heard it really doesn't agree with some people. My GP surgery also doesn't do coil insertions for some reason so I would need to be referred to the clinic if I chose this option.

Do nothing and see what happens with the referral - GP says this could take up to a year (!) and it might be the case they reject the referral anyway if I haven't tried one of the above options.

It sounds a little silly but I'm also concerned that if I tried one of the hormonal options above and it solved a lot of the symptoms that the referral could be rejected as I would be feeling 'better' - surely it would just be masking the root cause of the problem? I still want the referral to go through and potentially have a laproscopy to be certain that it is endometriosis.

I have an appointment with my GP again in a couple of weeks so she can do a general pelvic exam to rule out PID and take some swabs (can't remember what she said the swabs would be for).

Apologies for the rather long post but this is a lot for me to digest at the moment. If anyone has any advice or could share their experiences, it would be greatly appreciated.

[SeventeenNineteen]

Hi there,I also have a poor reaction to hormonal birth control and went on the copper coil.

My endometriosis was not diagnosed until I had a 16cm ovarian cyst that was close to bursting. This was about 8 years on from inserting the coil.

Before that my pain was not really taken onboard by the doctors. So it's great your medical team is acknowledging suspected Endo.

I have been suggested the Mirena as well but have similarly been concerned about the side effects. I was suggested not to take hormonal birth control because of migraines with aura and blurred vision.

I was managing my pain alright until I had to be emergency admitted to the hospital earlier this year. They found the cyst returned on the other side. They found more Endo this time as well. I don't think that my refusal to take hormones delayed or prevented me from having the surgery.

Best of luck 🤞

[Moon_maiden]

Hi

If you don’t want hormones you shouldn’t be forced to try them again. They can’t do that, it would become abuse. If you want a lap the GP should make that clear in the referral.

I had Zoladex on monthly injections, to put you into medical menopause it doesn’t have to be quarterly. But I think it might have to be initiated by a consultant.

Can you afford to see a consultant? You can make sure that are are experienced in Endo that way as well. If you see one that does NHS they can add you to their list.