Adenomyosis new diagnosis

[Pacesetter]

Hi everyone. I’m a bit nervous due to not understanding my situation and would appreciate any support with explanations as I’ve been told that they would want me to have biopsy and I’ve been put on Norethisterone till a decision is made which treatment as all others have not worked for me.

I’m 43 years old in pain, bleed heavily and severely anaemic as a result. Have had both blood transfusions and iron infusions over 17 years no improvement. Have other health issues which I’ve had surgery for but they cannot proceed until this adenomyosis situation is sorted out as they say it’s the reason for my loss of blood and they need to stop blood flow.

I would like someone to help me out explain what all this means as they’re not keen to do hysterectomy due to previous scars but will only risk it if biopsy shows something. I don’t know what that means. I’m due to have hernia repairs 3 in total but until this is resolved, my surgeon can’t risk doing it. The gynae said something about stopping it temporarily by microwave endometrial ablation. But just so I can have my upcoming surgery and then I can decide if I’m willing to have hysterectomy and it would be planned for the future.

Below is information following diagnosis. Can anyone explain and advice what helped in their case.

Thank you for your support. I appreciate it

[AllthatGlitters]

Hello

I have both adenomyosis and endometriosis and I am 38.

I suffer heavy bleeding, bleed through clothes, clots, severe labour like pains, anaemic.

I had a lap to diagnose endo and mri to diagnose adeno.

I am on iron tablets, the pill which doesn’t stop my bleeding. Codeine for severe pain although this has landed me in hospital on morphine a few times.

I would say that you definitely need some form of contraception, the pill doesn’t stop my bleeding but it stops the pain to a certain degree but when I have a flare up nothing works apart from the codeine or morphine.

I know that my doctors don’t want me to have a hysterectomy until other avenues have been tried which I am open to as I don’t want to be put into the menopause at my age. I am away to try endometrial ablation which seemingly helps the pain and heavy bleeding. To me anything is worth a try. I refuse the coil as even a smear is so painful for me.

Always remember you have options and don’t have to go with what doctors May push you into doing. It’s your body and you have a right to say yes or no.

When I think back to my diagnosis it’s quite upsetting, you don’t understand it and it comes as a bit of a shock to finally find out that what your body has been doing actually has a medical term.

Please feel free to pm me if you like as I get how you feel xx

[Pacesetter in reply to AllthatGlitters]

Thank you so much for responding to my post. I take codeine already for years now. I can’t take morphine or nsaids as I’m allergic to it. I’ve had contraception up until 2 years ago, it didn’t work. So it’s a bit challenging but like you said, I’ll carefully look at the mea option as the hysterectomy they said is very risky due to my previous surgeries and scar tissues. It feels reassuring to know that I’m not alone and as finding out what was wrong all these years too. I will pm you.

[AllthatGlitters in reply to Pacesetter]

💝

[Ayseesme]

I have deep infiltrating endometriosis in my bowel and left pelvic wall and adenomyosis (I’m 23) and I have the mirena coil to help with the adeno. It doesn’t help with the endo and it doesn’t really help with the adeno pains but it really helps the heavy bleeding and blood loss. Some months I don’t have a period at all and other months it’s a light period; I can get away with wearing 1 pad throughout the night and not having to change it). I’m on tramadol for my pain relief as I’ve been using codeine for too many years, my body became immune to it. Maybe you could ask for tramadol instead? I also have BeYou patches and a cbd balm I use every day so I don’t have to rely on pain meds as much, I try to use as much natural pain relief as possible! I also take iron tablets, multivitamins and turmeric and ginger tablets (for inflammation) to help with the tiredness from the pain. I hope this helps! X

[Pacesetter in reply to Ayseesme]

Thank you so much for these information. I appreciate it and my apologies for the delay in response. It’s been a very challenging time for me especially with kids being on lockdown. I’ll look into this. Hope you’re keeping safe. Take care xx

[KimJL]

Pacestter,

I am sorry that you have to go thorough all this. I hope you get the best medical care that you can to help with your condition. Now this is my experience and perhaps it may not relate to you. I am also 43 years old and had a partial Hysterectomy last year at age 42 it has been 6 months post surgery. I was diagnosed with Adenomyosis in 2005 after a myomectomy and biopsy for a 5 cm diameter growth. I had symptoms consistent with Adenomyosis, Endometriosis since starting menstruation at age 10.

None of my doctors recommended ablation as it can make the Adenomyosis symptoms worse. Adenomyosis is a complex condition so please see the FB page Adenomyosis Advice Association's website for a wealth of info: adenomyosisadviceassociatio...

I have to tell you the constant pain that I had pre-surgery is gone. I had to have one ovary removed as it was adhered to the front of the uterus wall, but the one ovary I have is ok and working well. I had Endometriosis scarring on the bladder and in the Pouch of Douglas, the scarring was removed.

You can see the symptoms of Adenomyosis on the website I mentioned, I had most of them. So let me tell you how things have improved and what has not.

I have no heavy bleeding, no clots, no severe cramps, no inter cycle severe cramps, no swallowing pain pills constantly, no getting injections for pain, no severe stabbing pains in pelvis, no pains down my legs, no vomiting, no pain when urinating, no severe bowel movements.

These symptoms are less but still existing, migraines - yes unfortunately, still have a very very mini period, some spotting for about 2 days as I have one ovary and my cervix. The PMS is still existing unfortunately. Less bloating and Irritable Bowels, pre-surgery I would sit on the toilet and let the blood and loose stools flow- yes it was that bad at times. The IBS is a bit better as part of my intestines were adhered to the front of the uterus and had to be 'shaved' off, no re-sectioning. I am still anemic though, still have a blood count under 10 but above 9. I still ovulate and I still have the pain associated with that and the mucous comes out of my rear still. Still have some back pain but that may related to arthritis. I still have a libido and still have natural lubrication but it is less on some days than others and I have no sexual partner at the time, only a vibrator. It was a bit uncomfortable the first few tries but got better each time.

But I feel so much better after this surgery. My doctors did not want to do the surgery because I did not have kids, but let me tell you the Adenomyosis is a condition that advances and it can wreak havoc on your life. I have not been able to work since 2009 because of it. Also please keep in mind that I could not take the hormonal treatments and I have hypo-thyroid issues. To help with the pre- surgery pain and the other symptoms, I had Traditional Chinese Medicine treatments since 2011. It helped with the symptoms but it does not eliminate the need for surgery.

I hope this helps you to make the necessary decisions about your health. I wish you all the best and I hope you find a suitable solution to this challenge.

[Pacesetter in reply to KimJL]

Thank you KimJL for being so detailed with your information. I am glad to read that you feel much better than previously. It’s just a nightmare going through it. Secondly, I was given norethisterone to take and I’m always snapping at my kids for no reason so I’ve decided that I would stop it and I suffer from depression. My major concern is that they are not recommending hysterectomy as main treatment as they’re worried about previous scarring tissues from C sections and I had defects which my gastro surgeons tried to repair but had challenges so they’re doing it step by step. I already have bowel and bladder issues and they’re concerned that having hysterectomy could make things even worse and other surgeries might not go ahead which could leave me in much worse situation so they are advising ablation as temporary measures whilst I have my surgeries and after recovery, say in 2 years time, I can have hysterectomy. I’m just so confused as I have other health issues with my kidney, malabsorption, oesophageal dysphagia, it’s so exhausting. I will check out the link you provided and I will keep everyone posted when I do meet my team as everything is on hold due to covid 19 situation. Hope you’re keeping safe. Thank you so much for all these info. It means a lot. Take care xx