Adenomyosis: The Condition That Keeps Getting Called Fibroids

Adenomyosis is one of the most under-recognised conditions in gynaecology. It causes heavy, painful periods in women who are usually told they have fibroids, or told that periods get worse with age, or told nothing at all because the scan looked “bulky but normal”. Until fairly recently it could only be confirmed by examining a uterus after it had been removed — which is a diagnostic standard that helped nobody.

That has changed. Adenomyosis can now be diagnosed on a good ultrasound, and treated with something a great deal less drastic than a hysterectomy. This article explains what it is, how to tell it apart from the two conditions it is constantly confused with, and every treatment in the order it should be considered.

What is adenomyosis, exactly?

The uterus has three layers: a lining on the inside, a thick muscle wall in the middle, and a smooth covering on the outside. In adenomyosis, tissue that belongs to the lining grows down into the muscle wall, where it does not belong.

That tissue still responds to the hormones of your cycle. Every month it thickens and tries to bleed, but it is buried inside muscle with nowhere to drain. The result is a uterus that becomes bulky, boggy, inflamed and tender, and that contracts painfully during a period. It is a mechanical explanation for a very specific kind of misery: periods that hurt in a deep, cramping, dragging way and that bleed far more than they used to.

How is adenomyosis different from fibroids?

This is the confusion that costs women years, so it is worth being precise.

A fibroid is a discrete lump. It has a boundary. A surgeon can find its edge, shell it out and leave the rest of the uterus behind — which is exactly what a myomectomy does. On a scan it appears as a well-defined round mass, and the report will usually give you its size and its position.

Adenomyosis has no edge. It is diffuse, spread through the muscle wall like damp through a wall rather than sitting in it like a stone. There is nothing to shell out. That single difference explains why the treatments are not interchangeable, and why a woman who has been told she has fibroids and offered a myomectomy may be having the wrong operation planned.

There is a second practical difference. Fibroids cause heavy bleeding mainly when they sit inside or bulge into the cavity; many fibroids cause no symptoms at all. Adenomyosis characteristically causes heavy bleeding and severe pain together, and the pain is usually the thing the woman leads with.

It is also entirely possible to have both. That is common, and it is one reason the diagnosis gets anchored on the fibroid that can be seen and measured.

How is adenomyosis different from endometriosis?

They are cousins. In endometriosis, lining-like tissue grows outside the uterus altogether — on the pelvic lining, the ovaries, the ligaments behind the uterus. In adenomyosis it grows inside the wall of the uterus itself.

They frequently occur together, which muddies the picture further. Adenomyosis is found alongside endometriosis in roughly a third of cases, and alongside deep infiltrating endometriosis in about half. If you have been diagnosed with one, it is entirely reasonable to ask whether anyone has looked for the other.

Who gets adenomyosis, and how common is it?

Estimates vary widely — published figures range from around 12% to nearly 60% of women of reproductive age — and the range itself tells you something. It is wide because for decades the only way to count cases was to examine removed uteruses, so the numbers depended entirely on who was having a hysterectomy. Now that it can be diagnosed on imaging, the picture is becoming clearer, and it is clear that adenomyosis is common.

It is most often recognised in women in their thirties and forties, particularly those who have had children. It is also found in about a quarter of women being investigated for infertility. Younger women get it too; they are simply less likely to be believed.

What does adenomyosis actually feel like?

There is a fairly recognisable pattern, and if several of these describe you, it is worth raising the word by name at your next appointment.

If bleeding rather than pain is the dominant problem, our page on heavy and irregular periods works through all nine possible causes and every treatment in order.

Why does adenomyosis get missed so often?

Four reasons, and they compound.

The symptoms are treated as normal. Heavy, painful periods in a woman in her late thirties get attributed to age, to stress, to having had children. The gradual worsening that is the diagnostic clue is precisely what makes it feel like a slow, unremarkable change rather than a condition.

The scan is not looking for it. A routine pelvic ultrasound reports the size of the uterus, the endometrial thickness and any fibroids or cysts. The features of adenomyosis are subtler and need to be sought deliberately. If the request says “pelvic ultrasound” rather than asking the question, the answer often does not appear.

Fibroids get the credit. If there is a fibroid anywhere in the uterus, it tends to absorb the blame for symptoms that adenomyosis is actually causing — because a fibroid is visible, measurable and easy to name.

The old diagnostic standard was a removed uterus. For most of the twentieth century, adenomyosis was a pathologist's diagnosis, confirmed after hysterectomy. A condition that can only be proven by removing the organ is a condition that tends not to be diagnosed in women who still want their organ.

Can adenomyosis be diagnosed on an ultrasound?

Yes — and this is the change worth knowing about. An international group agreed a set of ultrasound features for adenomyosis, updated in 2022, which are now used to make the diagnosis without surgery. In a good pair of hands, transvaginal ultrasound detects it with a sensitivity of roughly 75 to 88%.

The features divide into two kinds. Some are considered direct evidence — small cysts within the muscle wall, bright islands of tissue within the muscle, and short bright lines and buds reaching from the lining into the muscle. Others are indirect: a globular uterus, one wall noticeably thicker than the other, fan-shaped shadowing, blood vessels running through the affected area rather than around it, and a uterus so bulky it flexes backwards into what radiologists call a question-mark shape.

The practical point for you is simple: it matters what the scan is asked to look for. Requesting an ultrasound specifically to assess for adenomyosis is a different request from a routine pelvic scan, and it changes what gets reported. Scans are arranged by referral from the clinic, and timed to the right point in your cycle.

Do I need an MRI?

Usually not. MRI has similar sensitivity to a good ultrasound — around 77 to 78% — with somewhat better specificity, meaning it is less likely to call something adenomyosis when it is not. It earns its place when the ultrasound is inconclusive, when the uterus is very bulky and hard to assess, when fibroids and adenomyosis are tangled together, or when surgery is being planned and the map matters.

It is not a routine first test, and being told you need an MRI to know whether you have adenomyosis is usually not correct.

Do I need a hysterectomy to know for sure?

No. That was the old answer and it is no longer the right one. Imaging is now accepted for diagnosis, and treatment can be started on the strength of the symptoms and the scan.

This matters more than it sounds. If the only way to confirm a diagnosis is to remove the uterus, then every woman who wants to keep her uterus stays undiagnosed — and undiagnosed women do not get offered treatment.

What is the first treatment I should be offered?

Medical treatment, in almost every case, and there is a clear order to it. Nothing on this list requires an operation.

Does the Mirena actually work for adenomyosis?

It works well, and it is the single most under-offered treatment for this condition in Indian practice. The hormonal coil sits inside the uterus and delivers progestogen directly to the tissue that is causing the problem. It reduces menstrual blood loss substantially, reduces pain, and reduces the volume of the uterus itself. It is recommended as first-line treatment for adenomyosis in both international and Indian guidance.

Two honest caveats. Bleeding can be irregular for the first three to six months before it settles, and women who are not warned about that stop early and conclude it did not work. And a very bulky uterus makes insertion slightly more likely to be uncomfortable or for the device to be expelled — worth knowing, not a reason to avoid it. In the Indian setting we plan on five years per device.

Our full guide to the Mirena as a treatment rather than just a contraceptive goes through the bleeding timeline, the side effects and the honest answers on mood.

What if medicines do not work?

Then there is a middle ground, and it is worth knowing it exists before anyone starts discussing a hysterectomy.

Uterine artery embolisation blocks the blood supply to the affected tissue through a small catheter, with no surgical incision. Around 83% of women report symptom improvement, with the uterus shrinking by roughly a third on average. It is not suitable if you want to become pregnant afterwards.

Radiofrequency ablation and focused ultrasound destroy adenomyotic tissue with heat, either through a probe or from outside the body. Reported symptom relief is high, and focused ultrasound in particular has been used in women who go on to conceive.

Adenomyomectomy is surgery that removes the affected part of the muscle wall and reconstructs the uterus. It is technically demanding and not widely available. In the largest published series of women attempting conception afterwards, around 35% became pregnant, three-quarters of them delivering at term. There is a small risk of the uterine scar giving way in a later pregnancy, so delivery is planned by caesarean.

None of these is a first step. All of them come before removing the uterus.

When is a hysterectomy the right answer?

When the symptoms are severe, your family is complete, and the options above have been tried or are not appropriate. In that situation it is genuinely curative, because unlike endometriosis, adenomyosis lives entirely within the uterus — take away the uterus and the disease goes with it. That is a real distinction and it is why hysterectomy has a stronger case here than it does for endometriosis.

But it should be the last item on the list, not the first thing said in the consultation. If a hysterectomy has been advised and you have not been offered a hormonal coil, dienogest, or a discussion of embolisation, you have not been offered the whole ladder. Our page on hysterectomy and when it is genuinely needed covers the operation and the questions worth asking, and a second opinion before consenting is entirely reasonable.

Does adenomyosis affect fertility?

It can. The evidence points less to difficulty conceiving and more to difficulty holding a pregnancy: miscarriage rates are higher, and the risk relates to how much of the muscle wall is involved and how close the disease sits to the lining. In studies using donor eggs, which remove egg quality from the equation, live birth rates were meaningfully lower in women with adenomyosis than in those without.

That is not a reason for despair. Many women with adenomyosis conceive and carry normally. It is a reason to say so early if pregnancy is the goal, because it changes the plan — every effective medical treatment for adenomyosis also prevents pregnancy, and that tension needs deciding deliberately rather than discovered a year later.

Is pregnancy riskier with adenomyosis?

Slightly, and it is manageable with the right monitoring. Adenomyosis is associated with a higher chance of pre-eclampsia and of a baby that grows more slowly than expected, so it is a reason for closer antenatal surveillance rather than a reason to avoid pregnancy. If you have had surgery to the muscle wall of the uterus, delivery is planned by caesarean.

If you are planning a pregnancy, our guide to preconception counselling covers what is worth doing in the months beforehand.

Does adenomyosis go away after the menopause?

Generally yes. The tissue depends on oestrogen, so when the ovaries stop producing it the symptoms usually settle substantially. That is a genuinely useful thing to know if you are in your late forties and weighing up an operation, because it changes the question from “how do I fix this permanently?” to “how do I get through the next few years?” — and those have different answers.

Getting care for adenomyosis in Gurugram

What is different about how this is handled here is mostly a matter of asking the question. Adenomyosis is suspected from the pattern of symptoms — heavy bleeding with worsening pain, in a woman in her thirties or forties — and then looked for deliberately on imaging rather than hoped for in a routine report.

Consultation, blood tests and Mirena insertion or removal are all done at the clinic. Scans are arranged by referral and timed appropriately. Any surgery is carried out at hospital. And if a hysterectomy has already been recommended to you elsewhere, that is a very reasonable moment to seek a second opinion, which is always welcomed rather than taken as a slight.

Where to see us

Dr. Anam's Women Health Clinic, Sector 51 (Mayfield Garden) and Sector 56, Gurugram. Open seven days a week, including Sundays.

The bottom line

If your periods have become heavier and considerably more painful over the last few years, and someone has mentioned a bulky uterus or fibroids without much conviction, adenomyosis is worth naming out loud. It is common, it is diagnosable on a scan, and it responds to treatments that leave your uterus where it is.

The one thing that should not happen is a jump straight from “your periods are heavy” to “we should remove your uterus”. There are six or seven steps in between, and most women never hear about them.