Adenomyosis: Hi Fibro friends 😊 Does... - Fibromyalgia Acti...

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Adenomyosis

Acocoa profile image
26 Replies

Hi Fibro friends 😊 Does any 'ladies' in the group suffer with Adenomyosis.

I have been recently diagnosed with this condition. I am suffering from pain in lower stomach, pelvic and uterus. Contractions like child-bearing.

From one health issues to the next. Sending hugs to you all x

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Acocoa profile image
Acocoa
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26 Replies
AllthatGlitters profile image
AllthatGlitters

hello yes I have adenomyosis, welcome to the club that nobody wants to be in 😢

Acocoa profile image
Acocoa in reply toAllthatGlitters

Sending hugs. May I ask how you managed with it. The constant pain is horrible 😞

AllthatGlitters profile image
AllthatGlitters in reply toAcocoa

Hello. I got diagnosed when I was 35 and my symptoms were labour like pains on my knees for hours wishing I was dead than go through this, heavy bleeding through my pad and pants and jeans, often would happen in public places I would soak through chairs, heavy and large clots. Prolonged bleeding for a year and a half. I ended up having 1 laparoscopy and 2 endometrial ablations which took away the lining of my uterus to help stop the bleeding.

I am on naproxen daily, tramadol for the extra bad days. Nortryptaline for pain too. I also have other medical conditions. Fibromyalgia, CFS, a blood condition, a genetic condition and endometriosis.

Please feel free anytime you need to chat you can directly pm me. Just remind me of our initial conversation as I forget at times 💛

Acocoa profile image
Acocoa in reply toAllthatGlitters

Thank you for the information. Sending you gentle hugs 🫂 🤗

Vic1977 profile image
Vic1977 in reply toAllthatGlitters

I have this to with fibromyalgia. The pain is so bad I am on mini pill but doesn't make a difference. Do you feel like you have pressure even in bottom it's so painfull .gyno won't give me hysterectomy due to bicornate uterus and just said there is nothing that can be done .feel like I'm just ignored x

AllthatGlitters profile image
AllthatGlitters in reply toVic1977

Hey sorry you also have these conditions, I don’t get pressure in bottom but I feel as though I am carrying a big bowling ball in stomach all the time. My mum often points out the fact that I’m bloated which makes me rage 😡 as if we don’t feel bad enough. Hope today has even a good day health wise for you x

Cazlou27 profile image
Cazlou27

Hi Acocoa, I’ve just had a short hospital stay after an ovarian cyst burst and during my ultrasound they discovered I have this. I do also have endometriosis. So I don’t really know a lot about it……explains so much though xx

Acocoa profile image
Acocoa in reply toCazlou27

Sending hugs 🫂 🤗 Never ending health issues. Hope you are dealing with it well.

Woodwalker profile image
Woodwalker

hello Acocoa

Sorry to hear you are having so much pain. I do know how dreadful an impact this disease can have. My daughter had both adenomyosis and endo and underwent a hysterectomy that has proved to be the only way to stop the pain at least 90% for her.

You don’t need to answer this but please make sure you have/are being referred to a specialist Endometriosis Centre for the best care going forwards.

Endometriosis UK have excellent support also, well worth contacting.

Sending my best to you.

Acocoa profile image
Acocoa in reply toWoodwalker

Thanks for your support. I have a follow appointment with Gynaecologist in August. I will see what he says and will request for a specialist referral. I am taking Pregabalin. It is helping.

Fedupandtiredout profile image
Fedupandtiredout

Yes, I've had adenomyosis and endometriosis for over twenty years. By the time it was all diagnosed by laproscopy, it was inoperable, so I had to live with it. Had a couple of artificial menopause treatments (Prostap) which did help knock it back for a while, as did real menopause - but it's all back with a vengeance now.

Acocoa profile image
Acocoa in reply toFedupandtiredout

Sending hugs 🫂 🤗

WolvesTinkerbell profile image
WolvesTinkerbell

yes. I also have been diagnosed with this. Potentially offered ablation but the fact it likely comes back decided not to and just “live with” it.

veggiefan70 profile image
veggiefan70 in reply toWolvesTinkerbell

I had ablation twenty years ago. It didnt come back and gave me relief from pain Id suffered with for a long time. So it is worth a try.

maggi999 profile image
maggi999 in reply toWolvesTinkerbell

I had an ablation 18 years ago and it was totally successful. Definitely worth a try

Escapologygirl profile image
Escapologygirl

I have severe endometriosis and am being scanned in September for potential adenomyosis but had no idea endo sufferers can also have fibromyalgia. Is this common ? It would certainly explain the constant ridiculous amount of pain in body all month long and lack of strength in opening jars and bottles.

Acocoa profile image
Acocoa in reply toEscapologygirl

Sending hugs 🫂 🤗

Purple_Badgers profile image
Purple_Badgers in reply toEscapologygirl

Yes, it does seem a fairly common thing. I’ve got severe endo and fibro. The crazy all-over pain and annoying lack of strength/stamina is a major feature for me.

My theory is that the stress and strain on the body from years of living with endo triggered the fibro.

Escapologygirl profile image
Escapologygirl in reply toPurple_Badgers

Thank you for replying, it makes so much sense now I read your experience and explanation. Since Christmas I'm struggling to open jars and bottles and now can't open them at all and I am so weak after doing the least thing. I suppose the body is fighting nonstop that it's depleted itself. Hope you're OK and sending hugs

sleepytink profile image
sleepytink

yes, my gynaecologist inserted a mirena coil, total game changer, no period for almost 10 years and only occasional grumbling achy pains !

Elaine200756 profile image
Elaine200756

Hi Acocoa, so sorry to hear about your suffering. I don't have Adenomyosis, but I just wanted to say I hear your pain and give you a gentle hug. Love Elaine xx 🤗🌸

Acocoa profile image
Acocoa in reply toElaine200756

Thanks so much x

Elaine200756 profile image
Elaine200756 in reply toAcocoa

My pleasure Acocoa. I will keep you in my prayers xx

Ninapod profile image
Ninapod

Hi Acoco, Sadly I have this condition. It used to be excruciating every month to the point I could hardly function. I had to lie on the floor and use hot water bottles and tried to get painkillers down before I felt/was sick. The pain would last for a good three to four hours and I would be exhausted when out the other side. It did improve when I was fitted with a marina (?) coil fitted and symptons almost disappeared now I am through the menopause - only slight discomfort rather than pain. I am also on HRT which helps. There are some benefits to getting older!

Sending hugs and sympathy 🤗

Acocoa profile image
Acocoa in reply toNinapod

Thanks for sharing. Sending hugs 🫂 🤗

Daisydrawing profile image
Daisydrawing

Hi Acocoa, Yes I was diagnosed with Adenomyosis 9 years ago and previously Severe Endometrioisis in 2003 at age 40. I had undergone lots of surgical treatment for the endo which was successful but was left with chronic fatigue. Then in 2013 I was experiencing pain again I had a laproscopoy and they found I had adenomyosis but no endo. I was on HRT at the time and I was strongly advised to stop taking the HRT, (which I did do) as this can increase the likelihood of endo and adenomyosis. In 2019 I was diagnosed with Fibro. From time to time I experience excruciating lower back pain and swollen abdomen which mimics those aweful period pains. I am post menopausal. The GP thinks its adhesions from past surgery which gets aggrievated with bowel motion. I had suggested to my GP I get a referral for Hysterectomy but she said I would still be faced with adhesions from the operation. I hope you are not in too much pain Acocoa and you recieve excellant care.

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