I have recently found out that I have both Uterine fibroids and Adenomyosis, discovered as part of an ultrasound scan to investigate bleeding between periods.
The doctors informed me of the findings but didn’t really confirm whether this explains the bleeding, bloating and pain I have been experiencing.
They haven’t offered any further investigations, so I feel like I’ve been left a little in the dark as to whether this explains what I have been feeling and if so, what, if anything, can be done.
interested to find out if anyone else has a similar diagnosis and so what symptoms they have and if anything can be done to help.
Thank you
Written by
Weedle
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Hello and I'm sorry your doctor didn't give you more explanation on your diagnosis. The Mayo Clinic website is a good reliable source of information about medical conditions. You can trust it to not have any misinformation.
A simple explanation of adenomyosis, which is my level of understanding, is when pockets of your endometrial lining, the part that thickens with blood and then is shed during periods, are completely trapped inside the muscular part of your vagina. Since this tissue is inside a "bubble" with no exit the tissue continues to respond to your hormones and thickens with blood but is unable to leave the bubble. I'm sure you can imagine how this would cause more pain as time goes on because those pockets will constantly be irritated, even when you don't have your period and even more when you do. Depending on the extent and location of these pockets, or lesions, the only way to stop the pain may be hysterectomy. If you still want to have kids some surgeons may be able to remove the adenomyosis and preserve your uterus. I don't think adeno causes bleeding between periods though.
Fibroids can cause bleeding between periods and very heavy bleeding and painful periods. Fibroids are similar to Adeno except they are growths inside or outside of the uterus that can be within the endometrial lining, withing the uterine muscle or hanging from a thin "stalk" either inside or outside. Fibroids are INCREDIABLY common. Something like 80% of women have them and many never know, maybe because they accept painful and heavy periods or because they are small and cause no symptoms. Fibroids can be removed or "destroyed" by different methods. They can do injections that cut off the blood supply to individual or multiple fibroids and that causes them to die and break down. Sometimes, if they are very severe, the only cure is hysterectomy. They cause bleeding in between periods because they have a lot of blood vessels and can bleed between cycles. They are not dangerous, just painful.
Your options depending on your age and desire for having more children. It is possible to get pregnant and have successful pregnancies with both conditions depending on the severity. If you are interested in having kids then I suggest finding expert surgeons and going far beyond your normal gyno.
Most obgyns are not trained in this type of specialized surgery and uterine sparing surgery, but there are experts that are more skilled and will give you more options but not guarantees.
Endometriosis is often associated with adenomyosis too and causes bloating in many people. It is very difficult to find in an ultrasound so could have been missed. I don't know if Adenomyosis causes bloating and I don't think fibroids do, but could be wrong.
I know I am a broken record by I would seek out an endometriosis specialist listed in Icarebetter. Even if there isn't one in your area they will very likely help you find someone they are familiar with and respect that is closer to you. Many also will review your records and images and do virtual consultations.
hi yes I have adenomyosis and like you was found on ultrasound, and transvaginal scan. My GP told me I had this and that was that. I had to look it up myself to find out what it was, and I joined a Facebook group aswell. I have had bleeding in between periods, and they are more heavy, and longer. It’s very draining. I haven’t had any lower abdominal pain as such other than when I am really heavy but this year I have badly struggled with lower back pain and goes into my hips. I’ve seen chiropractor, private physio and nothing has helped. Even basic stretching aggravates it. I’ve since read further into it and this condition can cause pelvic pain - which is also the lower back. Luckily for me I have my first gynaecology appointment at the hospital on Tuesday as a recent scan must have shown up further changes. I’ve also done small cysts apparently. I would definitely go back and ask for it to be investigated further by gynaecology if you are really struggling. X
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