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Endometriosis UK
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Adenomyosis

Hi

I had my laproscapy yesterday, they didn't find endometriosis as was suspected for years. Instead they found adenomyosis.

Has anyone here heard of or has this condition?

I've been referred to a specialist gynaecologist and told a little about pain relief and that only cure is to remove the womb 😰.

Advice appreciated xx

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Awww hope you get sorted I'm currently having unexplained abdominal pains myself having a hysteroscopy done in August my second one

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There is hope and it is called Esmya.

I have Adenomyosis for years now. It is a painful condition. Unfortunately I also recentle found out I have deep infiltrating endometriosis. At least the diagnosis fits my pain levels.

Please research Esmya and talk to your doctor about it.

It saved my womb. For many women one or two courses of three months Esmya will do the trick. In my case the Adenomyosis keeps returning after 6 to 9 months so I already had 4 courses during the past 3 years.

But it can save your womb.

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Hi Patricia,

I will look into that.

So far they've said zoledex injections and amitriptyline to see me through until specialist appointment. I've said no to amitriptyline as it's not a good medicine to take and can cause other problems. I need to speak to GP about zoledex as it causes early menopause??

Thank you for your advise, I hope you get the treatment you need to help with your pain xx

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Good luck.

I was subscribed Ami too. You were wise not to take it.

I discovered myself that oxazepam 10 mg before sleeping does help me sleep and rest at night.

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Hi Patricia,

I hope you're feeling well. I've had ongoing severe pain for 5 years. I have been diagnosed with fibroids and more recently on a scan with what looks like adenomyosis (i understand they can't truly diagnose this without removing the womb). I was booked in to have a hysterectomy in August, but due to just having had shoulder surgery and in a lot of pain with that, i went back to see my gynea and he has deferred the op until November for me and prescribed me Esmya. Your post has given me this incredible hope. Could it really save my womb potentially? Can I ask a couple of questions. I have quite bad pmt (monthly depression), I was prescribed norethisterone last year for heavy bleeding and pain. It made me bloated, gave me abdominal pain and lowered my mood considerably. So i'm concerned about hormonal interventions - could Esmya make my hormones worse? I work full-time and i'm worried the side effects (additional pain in the beginning) might affect my ability to work - are the side effects very noticable? Do you suffer by going in and out of the menopause each time you stop and then start a new course (you are on your 4th)? Do the fibroids stay shrunk? What does it do to the adenomyosis? How long after stopping it can you tell that your symptoms have improved? I'm 46 how old are you? Sorry for all the questions....xx

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Dear Janey,

I’m so glad you got in touch!

You are having a hard time too poor you.

I don’t know norethisteron. With Esmya I had pretty bad migraines the first weeks and I also had more vertigo spells throughout the course. Those were my side effects. I had migraine before and also vertigo spells, Esmya just made them worse. I didn’t notice any side effects in my belly though.

I work 36 hours a week (spread over 5 days) and feel you. As women we must stay strong and be our own strong advocats, in our health and in our life in general.

I couldn’t work fulltime when my adenomyosis was very bad, Esmya didn’t make that better in the first few weeks. After a while however my bleeding stopped and I had no periods while on the course. After the course the menses is more heavy but the second month after the course my menses was durable. I didn’t even know what happened to me, I could actually walk and sit longer than an hour and work longer than 4 hours a day without opiods.

Yes my fibroids shrunk with 70% and also my womb shrunk by about 30%, both were severely affected by adenomyosis. This effect was achieved after 2 courses of Esmya, you need to have at least one bleeding between Esmya course. I noticed that after each course the time between courses was longer, between third and fourth course I had nine months meaning that after circa 8 months my pain got considerable worse and the ultrasound showed the fibroids and womb were growing again.

Unfortunately as long as our bodies produce estrogen we get adenomyosis and endometriosis so it will return after one or two Esmya courses, however because you are 46 maybe you need only three of four courses before menopause. At least it will make your life bearable or even good until that.

and yes, meanwhile you can keep your womb!!

I am not in my menopause yet, I’m 42 and unfortunately due to health reasons subfertile and also not aiming at a child at the latter period because of worsening health conditions.

Keep strong! Hugs…

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Hi Patricia

Thank you for your reply - it's so reassuring and so helpful to be able to speak with someone that has experienced this. I really appreciate it. I am so sorry to hear of your struggle with this too and being sub fertile - I'm so sorry to heat you have had to deal with that too

I also can't sit down for very long, but when i explained this to my previous female gynae, she said it sounded more musco skeletol than anything to do with my womb! But i know it is. It's my uterus inflamed and being squished in there when i sit. I have about 10 dyas each month where i am more or less symptom free, but then the bloating starts again, my mood drops to a depression level,my bowel gets affected, i feel super tired ....and if i wear anything with a non-elastic waistband i'm very uncomfortable as with sitting for too long. And then the actual menses start and are absolutely unbearably painful..Naproxen only just about works as long as i take paracetamol with it. I can't really sit of lay on my lower back for 2 days. My brain feels thick with fog and I get so upset as i notice that i can't think, I dread this coinciding with important meetings at work - I'm lucky that i arrange my own calendar mostly.

My partner of 13 years has left me again after the last few years of me being upset, in pain and sad. He says he loves me, but feel useless as he can't help me and my moodiness has made things intolerable :(

But, I am a fighter. I am working and feeling stronger now that I'm finally being listened to. I will get better and I will hopefully keep my womb if Esmya works for me :) I'm going to try it, but if i feel too weird, I'll stop it. How long will it take to clear from my system if i do stop taking it do you think?

Thank you for the strength - to you too and I'm sending big big hugs to you Patricia.

xxx

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Hi Janey,

So glad to hear it was helpful :-)! You are very welcome :-)

Thank you for your kind words too!

Amazing that we have (had) almost the same complaints and unfortunately we both suffered doctors stupidity. My first gyno (female head of gyno department of a large hospital) told me it was all in my head. So I asked her if she tought I could control my daily bleeding as well with my mind because that would be a novelty. She didn’t answer my question but sticked with her opinion that I was faking. My brilliant current gyno (a man) in another clinic didn’t understand why that female doctor didn’t see the serious adenomyosis on my ultrasound, it was very visible. Actually that woman just didn’t want to see it.

I am really sure your uterus is acting up and it has nothing to do with “musco skeletol whatever”.

I just got Oxycodon 10mg (normal and retard) prescribed by my GP after she saw my MRI results. She advised me to take it with paracetamol and I can also take it with Aleve Feminax if I need it. It is only very important that you take some kind of laxatives (magnesium hydroxyl works for me) with it!

If you try Esmya, take the full course of three months. In my experience it clears from your body immediately after you stop taking in.

So sorry to hear your partner left you :-( especially when you are so hard in need to have someone care for you. Btw, my husband (we are together 11 years now and 9 years married) feels the same as your partner about feeling useless as he can't help me. Our conditions are really hard on our spouses too..

. :-(

I can send you many hugs and all my thoughts and wishes and I hope that helps a bit! I’ll fight for you and for me!

xxx

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Thank you so much for your support Patricia. I'm going to try it and see how I get on :) I hope you're feeling well. Sending you hugs and my thoughts too.....and thanks for the fighting spirit. xxxx

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Adenomyosis is where endo has affected the muscle of the uterus in simple terms. So it is the same disease in lots of ways and as you have that confirmed endo may unfortunately follow. It may not but be prepared.

Amitriotyline made me really tired but did help pain. I ended up on duloxetine that did help

Zoladex will put you into early menopause and if you can ask GP for add back hrt to help manage the symptoms it will bring. If you want to preserve your fertility don't have too many zoladex injections. I don't know how many it is but I know there is a limit.

Eventually a hysterectomy is only way to treat adenomyosis and I had one two and half a years ago but I was 42 and told I was I infertile thanks to endo. It didn't sort my pain out though as endo left behind so if you do go that route in the future ensure you have a specialist do it so all endo ( if there is any by then) is removed.

Good luck

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Hi Marcia

Thank you for your reply, it is all a bit confusing really.

I am blessed with two children and I'm guessing as they said my womb is very red and aggressive it wouldn't be possible to have more now? I'm 35 and didn't invisage going through early menopause and I'm guessing until I start injections I won't know what symptoms I'll get?

I've looked up adenomyosis and every symptom is a symptom (although very similar to endo) I've been telling them for years. Just got a lot worse on the last year.

Did you have endometriosis after being diagnosed with adenomyosis or other way around? They told me they didn't detect any endo while doing the lap on sat? Xx

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I was diagnosed with both at the same time as I'd been suffering for some time with pain and heavy periods.

I think you're right that more children is now unlikely but preserving your womb and ovaries may help your overall health so so if you can.

I'd ask Gp for a HRt prescription - tibolone (called livial) is a good starting one. As symptoms start for some very quickly afte injection so can be useful to have ready. It's the hot flushes that I find hardest and hrt does help.

Best of luck.

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