When I was finally beginning to understand Endometriosis, Adenomyosis came into the picture. Could Adenomyosis be the one causing most of the pain? Is there a cure for it? How is it different from Endometriosis? I try answering all this and more during April, which is also Adenomyosis Awareness Month…
In 2015 I had a one of my best MRIs for endometriosis. The radiologist was extremely thorough and was able to identify areas of concern in my abdomen, including major organs and uterus which could be affected by endometriosis.
But in the report, I was introduced to a new word – Adenomyosis.
Please remember: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.
If you would like to see a video version of this post then you can right here, or you can scroll ahead to read on:
What is Adenomyosis?
To explain it simply, adenomyosis is the…
“presence of endometrial glands that appear within the tissues in the muscle of the uterus.”
It is believed that in adenomyosis, the inner lining of the uterus, which is known at the endometrium breaks through the muscle wall of the uterus.
Just to quickly explain, it’s this lining that sheds during a period, but now, if that lining has broken through into the muscle of the uterus, it is now trapped and can’t shed during a period.
The trapped lining leads to internal swelling and severe pain through menstrual cramps.
What are the Symptoms for Adenomyosis?
Here’s a list of the symptoms…
- pain during menstruation
- pain all month round for more severe cases
- heavy bleeding during menstruation
- abnormal uterine bleeding
- painful sex
- pressure on bladder and rectum
- tender uterus due to swelling
- digestive difficulties
- leg and back pain
Now don’t most of these symptoms resemble endometriosis?!
Just a quick recap of what endometriosis is…
Endometriosis is when the lining of the uterus (endometrium) is found growing outside the uterus on various organs like the ovaries, rectum and even the diaphragm (to name a few), unlike adenomyosis which gets into the muscle of the uterus.
For those who wish to know more, endometriosis too causes immense pain and heavy bleeding during menstruation, can cause infertility, bloating, painful sex and many other similar symptoms to adenomyosis.
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- My Guide: How To Prepare For Endometriosis Laparoscopic Excision Surgery
In the years leading upto my excision surgery for endometriosis, I wondered if I was doing the right thing. I wondered whether I would still experience the same pain since I was treating the endometriosis and not the adenomyosis.
Frankly, there’s no answer to that question.
You don’t know what is causing you most discomfort until you don’t try to reduce the impact of one disease.
I had to begin with treating endometriosis – but why did I choose to treat endometriosis first?
For that we need to understand how adenomyosis is cured…
Before I answer this and in case you’re curious, adenomyosis is diagnosed through symptoms, a trans-vaginal ultrasound, MRI and a regular pelvic exam, but the only way to truly know what is happening in the wall of the uterus is during surgery when tissue samples are tested.
- My Guide: What To Expect After Endometriosis Excision Surgery
- Six Months On: Endometriosis Laparoscopic Excision Surgery – Am I Better?
So, Can Adenomyosis be Cured?
The only real cure for adenomyosis lies in major surgery that deals with a major life choice including the treatments that follow it.
A hysterectomy or the removal of the uterus leaving the ovaries is the best known cure for adenomyosis. Its samples collected from this surgery that are tested to understand the reason for all the symptoms faced.
But before getting this surgery, a few things need to be considered – I’ve mentioned three that came to my mind when I was looking at my options – you might want to consider these questions (and more) too…
1. Do you want to have children? If so, then you need to decide whether you wish to carry the child? Or wish to have your eggs frozen and go through surrogacy? Or wish to adopt?
It’s a huge question to deal with. Because if you have a full hysterectomy and do lose your ovaries then you won’t be able to freeze your eggs later.
2. During the hysterectomy, if you do need to have your ovaries removed, you will lose the main producers of estrogen for your body.
Estrogen is the hormone that’s essential to maintain bone health, therefore losing the ovaries means a higher possibility of osteoporosis.
You then need extra hormone supplements and additional bone care because you don’t want to be in a situation where in the fight to eliminate one issue, you end up with a new form of pain to deal with.
For me, I already have osteopenia along with osteoporosis in certain areas.
With having weaker bone health despite having my ovaries intact, I believed at this stage a hysterectomy wasn’t something that worked for me and considering I have arthritis and Ehlers-Danlos syndrome.
I felt that going in for excision surgery for endometriosis would give me a better understanding about my overall level of pain once one disease is treated.
But that was my call – we all have to judge our situation and understand what’s best for us.
- Can Endometriosis Cause Joint Pain?
- How To: Living With & Treating My Arthritis
- My Journey: Being Diagnosed with Ehlers-Danlos Syndrome
3. Post-surgery recovery takes time and needs to be extremely well-planned. Expect to have a strong plan in place that spans at least a year before you can even think of getting back to normal.
What you eat, how you move, when to get back to strengthening your body, the clothes you need, the therapies that will help… what I’m trying to get at is that a lot of effort is required post-surgery which needs to considered in detail otherwise messing up recovery could end up adding additional issues.
This is where a conversation with your doctor is so important. Every case is different and so everyone needs to discuss the pros and cons with their doctor.
Also, it’s always worth getting in touch with others who have had similar surgeries who will happily part with all their challenges and how they overcame those.
The problem lies in not being told enough – which is definitely the responsibility of our doctors – I know I mention this in many of my posts, but in my experience, you have to knock on many doors to piece together information on your body.
Unfortunately, many times, adenomyosis is not even considered as a possible reason to the symptoms – this leads me to my next and most important question.
Why is Adenomyosis Ignored?
Adenomyosis is often not considered as a reason for the debilitating pain, but why is this so? Why is adenomyosis ignore?
Here are the reasons that I’ve come across through personal experience and by researching what other women have said:
– adenomyosis symptoms are very similar to endometriosis and even PCOS (polycystic ovarian syndrome), so usually doctors tend to give more emphasis to those – that’s after you’re believed
– that’s the other issue – most women’s health problems are often dismissed and attributed to stress – something I’ve heard too many times. In fact recently I came across a post on The Mighty where someone spoke of this:
The One Word People With Adenomyosis are Tired of Hearing
– adenomyosis is often mistaken for a uterine fibroid because of similar symptoms although fibroids tend to be larger masses (benign tumours) than those seen in adenomyosis.
– many doctors aren’t too well versed with adenomyosis, this also leads to mis-information and misdiagnosis.
What we have to realise is that despite similarities in symptoms to other conditions, adenomyosis is very different and taking a call for a hysterectomy procedure is a very personal and a major decision to take, therefore we need to be well armed with all the relevant information out there and a specialist surgeon before such a decision is taken.
I wish you all the very best in your fight with adenomyosis. If you would like to share your story or your point of view then please do in the comments section below…
Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.