Endometriosis and Adenomyosis - Twice as ... - Endometriosis UK

Endometriosis UK

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Endometriosis and Adenomyosis - Twice as horrendous periods

littlemissgiggles profile image
3 Replies

I have been diagnosed as suffering Adenomyosis over a year ago, on top of having been diagnosed with severe endometriosis 14 years ago. After years of surgery and various modes of treatment, i have accepted my condition with the endo. However, the adenomyosis has added a new layer of pain which i have struggled with. Over a year ago, i had the mirena coil fitted to help with this, but it did not agree with me (continuous bleeding). I had it removed 3 months ago and wanted to see what my nomal cycle was, before exploring new treatment (my consultant has suggested a progestorne tablet). My normal cycle has consistently been pretty painful and i lack energy for the first 3 days.

I wondered if anyone else has suffered a similar situation and if there is any advice on treatment/alternative therapies that may help the adenomyosis. I was wondering if a change in my diet may help. Any views would be really welcome.

Thanks

bx

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littlemissgiggles
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missteal profile image
missteal

Hello,

I had mild endo treated 4 years ago and was diagnosed with (suspected) adenomyosis about a month ago.

I've had the same reaction to the mirena as you and have struggled with the depro injection and most types of the normal pill. They all just make me constantly bleed and cramp.

I've been taking norethisterone for 6 months now and it's given me my life back woooo! The normal pop pill is 0.25mg of progesterone but because us adeno ladies have a much higher level of oestrogen it seems that we need a high dose of progesterone to counteract it. Norethisterone is 5mg of progesterone and I take it twice a day. It stopped pretty much all of my symptoms. I have to have a break every 6 months so only 2 periods a year, much better than 12!! I have to say I came on yesterday and the pain is not nearly as bad as it was before I started taking norethisterone. I have more clots than usual but the pain is a lot better than it was before. I'd ask your GP if you can try it. They normally give it to women wanting to delay their period over a holiday but it is a known treatment for endo and adeno.

I really hope you get to try this drug. I did get a few side effects like headaches and my libido decreased (although I think my bf thinks this is a good thing lol). The side effects only lasted a couple of weeks and now when I'm on the tablets I'm actually a normal person, it sorted out my mood swings, tearfulness, pain, bleeding etc....

Good luck hun xx

littlemissgiggles profile image
littlemissgiggles

Dear Missteal,

Thank you for coming back to me and telling me about your "miracle" tablets! I am glad to hear that you have had such success for the adenomyosis...it gives me some hope.

I had been prescribed a tablet called Provera (which is also a progestorone tablet), to try for 3 months and see how i get on. However, i have refrained from taking it as i wanted to see what my natural cycle was like after a year on the coil. I also have only one kidney and am therefore trying to do as much as i can naturally to try and minimise the impact on my kidney.

I have an appointment with my Consultant in January and shall definitely mention your tablets then. Have you made any changes to your diet or excercise? I was also thinking about perhaps giving acupuncure a go.

Many thanks,

bxxx

foosey profile image
foosey

I have Adenomyosis, fibroids, polyps and an ovarian cyst, the mirena coil has help with the heavy blood flow but the pain is the same - I am booked for surgery which i had to decline this past Friday due to 2 days notice and having an important wedding to go to. I say try anytihng cos anything is worth a shot. x

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