Adenomyosis

[DarkStar85]

Do you always need a hysterectomy with Adenomyosis? I've just been diagnosed,also with suspected Endo, ovaries 'stuck' together and 6 ovarian cysts. Does it always progress to get much worse and possible endo cancer? I've had thyroid cancer and seen there is a link with Adenomyosis and thyroid cancer. Luckily I've had my children so thats not an issue. Currently I can live with the pain as I'm so used to it. I'd avoid major surgery if I could.

[GreenViolin]

Hi DarkStar. No, hysterectomy isn’t the only option. I have endo, adeno and fibroids. I was offered a hysterectomy or targeted excision and have agreed with my surgeon I want him to remove whatever he can that’s not meant to be there rather than go for the full hysterectomy.

Not everyone gets worse without surgery, but it’s still the gold standard treatment if you’re struggling to cope with symptoms (although it doesn’t of course prevent it returning).

Some types of deep endo lesions can be associated with cancer but it’s probably best to talk to your consultant about any risk linked to you having had thyroid cancer. Good luck with it all.

[DarkStar85 in reply to GreenViolin]

Thanks for your reply Green Violin thats good to know. I don't fancy a hysterectomy at 38! What is your main symptoms if you dont mind sharing? I'm frustrated waiting for Mri/lap to see what the extent is. When is your surgery scheduled? Wishing you all the best and a speedy recovery.

[GreenViolin in reply to DarkStar85]

I’m 44, but have no desire to have one either if I can avoid it! My main symptoms are significant abdominal pain and bloating. I have a Mirena which has thankfully got rid of the other period related symptoms I used to get by stopping my periods altogether.

Still waiting for a date for surgery. This will be my third surgery in 20 years, but the most complex as it was only when I had my first MRI recently I found out I have adeno and fibroids as well as the endo.

[DarkStar85 in reply to GreenViolin]

Sorry you've been dealing with this for 20 years I can't imagine. I've had pain for 7 years but only just diagnosed. I'm thinking of trying the mirena but I've never agreed with hormones since I had kids. Hope you get your surgery date soon and uts successful with a quick recovery ❤️

[BloomingMarvellous]

Hi

Regarding the treatment for adenomyosis. Hysterectomy is seen as the gold standard for it and often it becomes really aggravated during peri menopause and menopause. So you are unlikely to know what that will look like for you until that kicks in. Problems you have now with it can ratchet up like the bleeding , spasming, clots and pressures created by the swelling. They can become pretty unmanageable and hence the trigger for hysterectomy.

Adenomyosis is very different creature in terms of spread and location to endo so removing the uterus physically takes the seat of the problem away but not the overall system vulnerability that enabled it in the first place. There is a lot of work been carried out in New Zealand on different treatment pathways that include nutrition, antibiotics and physical therapy that is showing some success.

You have to go on how you are but do be aware that as your body moves into menopause you may want to review earlier choices.

[DarkStar85 in reply to BloomingMarvellous]

Thanks for your detailed reply. Have you had a hysterectomy? I'm 38 so Peri meno could just be around the corner. I'm just scared about inducing menopause early. I guess when I am meno age I would be more up for surgery. I like the idea of removing everything then the risk of endo and ovarian cancer is away!

[Fedeg in reply to DarkStar85]

You don't go into surgical menopause if they remove the womb and keep the ovaries.

I haven't had any hysterectomy and I am avoiding by all means with natural remedies.

They have worked just fine till last month. And now I am at urgent emergency centre because I shockingly bled blood clots for 4 days.

Untll last month it was just one day put of 7 of very shocking bleeding. But this month maybe because I was less meticulous with taking supplements and herbs, I am in this crap.

Anyway, I will start natural progesterone soon, hopefully.

There are several types of adenomyosis. Focal, diffuse, severe.

Diffuse is all across the womb, which, in my case, is sized like 4month pregnancy.

[DarkStar85 in reply to Fedeg]

Sorry to hear that. What supplement and herbs have you found helpful? I've just started omega 3, magnesium calcium and EPO. I feel the EPO made me feel worse as I started on a high dose. Hope you feel better soon.

[Fedeg in reply to DarkStar85]

DIM and Calcium D Glucorate to detox from estrogen excess;

Myomin to stop adenomyosis tissues to grow;

Optivite - multivitamin and multimineral

Lady's Mantle from ovulation to first day of the period; it's an astringent tonic for the womb.

Agnus Castus to facilitate ovulation; and does Vit C.

Iron of course

I think it's all

[Fedeg in reply to BloomingMarvellous]

Completely agree.

Adenomyosis is driven by estrogen but started because of a defective immune system in the first place. And yes, NZ and Australia are the countries more forward on this than anywhere else.

[BloomingMarvellous in reply to Fedeg]

Oestrogen is not the only driver. The chaos of menopause variation can aggravate inflammation and the degree of other inflammatory promotors such as infection, allergies, sensitivities and leaky gut problems can be a big part of the picture. Sometimes hormone intolerance or resistance such as to progesterone can be a factor , loss of testosterone etc. I’ve always been low oestrogen and progesterone or progestins have been the drivers for me. It’s important to understand your own version of what aggravates the process for you.

[Fedeg in reply to BloomingMarvellous]

I know it's a complex matter, including inflammation. Immune system and all the other things you said. Liver, gut ecc

Also thyroid. Checking estrogen and progesterone is just a first step.

[Smorzando]

Hi,

I also have endometriosis (diagnosed aged 25, I'm now 48) and last month was also diagnosed with adenomyosis and multiple fibroids (I had an ultrasound due to heavy bleeding).

I have been on HRT for about three months and it seems to be causing increased pain.

Today I went for a mirena coil fitting but they had to stop as it was just too painful so I'm not sure what to do next.

I am also wondering if hysterectomy is the only solution. I honestly don't know how I'm going to navigate the menopause if I can't take HRT (other symptoms have been awful, mainly mental health issues).

[mavenmi]

I've had zoladex to treat my adenomyosis for the past year, and it has stopped the heavy bleeding entirely. It is an implant they inject into your belly fat, which causes chemical menopause - which can have an incredibly positive impact on endo or adenomyosis or any problems with periods as it makes them stop. However, menopause has some unpleasant effects, so they often add back a mild HRT to try to reduce the side effects (hot flushes, aches, very dry skin). If my experience is anything to go by, they'll start with one that lasts four weeks to see how you get on with it, but after a while they can change to one that lasts twelve weeks. My consultant says it resolves the issues for a good proportion of women with adenomyosis but not all. So I definitely think it is worth a try as stopping the bleeding is a really life-changing gain.

However, it doesn't work for everyone. It has had definite up sides but hasn't been a complete fix for me. I get a distinct "re-menopause" phase when I get the new implant (with brain fog and hot sweats), and then lower mood and more symptoms as it starts wearing off (from week 10 of the 12-week version). I still have very disrupted sleep and other side effects, including anxiety and mood swings, as well as some effects related to the swelling. For those reasons my consultant has concluded I'm not one of the women it is a magical solution for, so I'm booked for a hysterectomy next week.

[mavenmi]

Try to focus more on what is going on for you now, and what the least intrusive way to treat that is and less on the worst case scenario. Cancer is still a very unlikely outcome. I had adenomyosis for years and didn't have any problems until perimenopause, and symptoms were managed quite well with zoladex (chemical meno pause implant) and HRT for a year before I decided hysterectomy was the right call for me at age 49.