Adenomyosis diagnosis

[sleepywelsh1]

Hi everyone

I was diagnosed with Adenomyosis last September after suddenly starting to flood during menstruation which I initially put down to being perimenopausal (late 40s). I was sent for an array of tests and advised to have the mirena coil inserted. I had the coil inserted and was diagnosed with adenomyosis. Since then, I have been suffering from migraines on a freuqent basis that are so bad I have to go to bed for the day. I am also having lighter but infrequent periods which can last for hours, days or weeks and backache, and my moods are all over the place.

Since my diagnosis, no healthcare professional has actually spoken to me about the diagnosis and I have had to look online for information, despite me going back to the GP several times. I feel I was railroaded into having the Mirena coil, and feel that I am being dismissed when discussing what I believe are side effects of Adenomyosis. The GPs are reluctantly removing the mirena for me but are flat out refusing hysterectomy, despite me not being able to have children (another possible symptom that has been psychologically damaging) and are just wanting to give me pills for the side effects rather than treating the problem.

Has anyone else had the same experience? Do you feel that medical professionals do not believe the effect this condition is having on you? I really am struggling and feel I have nowhere to turn.

Sorry for whingeing, but my GPs have not spoken to me about this condition and have said 'don't worry about that' when I tried to raise it.

Thanks

[Rainbow2468]

No I've had the opposite, they are giving me pills as treatment but I had to push for this as I don't want a hysterectomy as I'm a carer and there are too many side effects or things that can go wrong.

[bluebug]

I refused to have a mirena coil. I had horrible side effects from the pill and mini pill so was advised years before my diagnosis to only have a copper coil.

I then got diagnosed with adenomyosis and the consultant (female) tried to push a mirena coil on me. The registrar (female) who ended up seeing me next actually listened to why I couldn't have a mirena coil. She just told me to take a higher dose of tranexamic acid, and if that stopped working advised me to have an ablation. (They only work for a few years.)

I suggest you go back to your doctor's and tell them the coil is giving you migraines so want it taken out asap. Insist on it.

(I don't know where you are in the country but when I was looking into the mirena coil I found private providers who could remove it for you. )

In regards to adenomyosis itself, unfortunately it is badly researched so there is not a lot of literature on it. So the average GP will know as much as you do about it at the moment. (If you start reading posts on here and the links people post you will know more. This isn't unusual with any condition as GPs are generalists.)

The reason they are refusing hysterectomy is probably due to waiting lists and your age. They are hoping that you will reach the menopause soon so don't have to do anything.

[sleepywelsh1 in reply to bluebug]

I had the mirena removed today. It was painful! I think you're right about them wanting to wait until I reach menopause. Thank you for replying to me and hope you get help for your symptoms x