I Have Painful Adenomyosis. Now What? Coming To Terms With My Condition.
My Gynaecologist dropped an adenomyosis bombshell on me during an ultrasound scan.
For as long as I can remember, I have had issues "down there." From irregular heavy bleeding and clots to backache, to casual mentions about how high my cervix is during smear tests (and the midwife trying to pull it down while I was in labour!) and all the other things that I put down as "Women's Problems".*
I just assumed that all women deal with many of these things and just got on with it.
Similarly, I have had restless legs since I was a teenager and even perhaps before, causing me to be awake most nights until at least 2 am. It was just something I learned to cope with.
And backache when I stand up for too long. Or how my tummy gurgles and moves about. I call it my belly pigs ...
The list goes on.
I never thought of connecting the symptoms until recently. I have been bleeding more than usual, and my Dr sent me off for an ultrasound scan and a blood test.
There I lay, on the examination chair, naked from the waist down, with a transvaginal scan going on when the gynaecologist told me that I had adenomyosis features, plus fibroids growing into it, and a possible cyst on my ovary that they wanted to check on in a few weeks.
Having never heard of adenomyosis, I immediately went home and did what any self-respecting newly diagnosed person does and consulted Dr. Google to see what it means. I also began looking for support through Facebook groups and was surprised to find a few people I know also suffer from the same and similar issues.
As it was seemingly quite common, I felt surprised nobody ever discussed it. But then I thought to myself, "Well, I never speak about my women's problems because it's embarrassing and a bit taboo." It's not exactly what you chat about over dinner or with the neighbours in the street. But why? After all, if it was any other chronic condition, people are happy to discuss it far and wide. I have never been embarrassed about my restless legs, for example. But anything to do with reproductive health and the vagina and uterus and all those bits up there, and we all clam up.
So I decided to write about my experience, gory bits and all. Please note that I do not intend to replace any medical advice; it is simply an account of how I am dealing with my diagnosis and symptoms.
What is Adenomyosis?
Adenomyosis is a condition in which the womb lining (endometrium) grows inside the uterus's muscle walls instead of remaining within the uterus. Over time, this can cause the muscle walls to thicken, become enlarged, and misshapen.
The condition is known as the “evil sister” of the more well-known Endometriosis, where the womb lining grows elsewhere around the body, often around the ovaries and fallopian tubes. However, it has been known to grow all over, including in completely unrelated body parts such as the lungs!
Symptoms of Adenomyosis:
Not all women experience adenomyosis the same way or with the same intensity of each symptom. For me, I do not have pain during intercourse. I do, however, have most of the other symptoms, and I bleed for weeks on end, getting odd shooting pains in my pelvis and groin. Restless legs have been the bane of my life for as long as I can remember.
I hadn’t realised just how much it impacts my life until I met my partner, and then suddenly I noticed how little I sleep and how much I bleed - rather inconveniently when you are in the early parts of a relationship!
Common Symptoms:
Heavy or prolonged menstrual bleeding
Severe menstrual cramps or pelvic pain
Pain during intercourse
Other possible symptoms:
Chronic pelvic pain
Enlarged uterus palpable by a healthcare provider
Menstrual cycle irregularities
Pelvic congestion, leading to digestive discomfort and a feeling of fullness in the belly
Restless legs, groin pain, lower back pain
Anaemia and tiredness from the loss of blood
Impact on quality of life and mental health
Diagnosis
A diagnosis is made by examining the uterus. This is done with a scan, as it is impossible to see what is going on inside from the outside of the body.
I was given an ultrasound, both externally and transvaginal. I half expected to see a heartbeat when given the ultrasound as it is exactly the same as that used in pregnancy. Including the bit where you need a full bladder and feel constantly like you are about to pee yourself while they press your bladder about.
The transvaginal probe looked terrifying and was highly undignified but not particularly painful. I find smear tests to be much worse.
Sometimes, an MRI might be ordered instead.
I also, before my scan, had a smear, STI tests (all negative, thankfully,) UTI tests (also negative,) and a blood test, which has gotten lost in the system, and I’ll need to redo it at some point to check if I am anaemic or not.
Managing Symptoms of Adenomyosis
My GP has prescribed me an anti-inflammatory to take on my heaviest days of bleeding called Mefenamic Acid. I haven’t taken it yet as I am off to a dog behaviour conference tomorrow and am scared of any side effects (should I get any) ruining the next few days. But I will test it out when I get back to see if it suits me.
Paracetamol and Ibuprofen have helped so far to take the edge off the pain and my restless legs symptoms.
A hot water bottle or a bath can be very soothing for tummy cramps and backaches.
A short walk (even though it seems like a terrible idea before you get going) is often good for helping with the pain, too.
I have found that sanitary pads to catch blood can get super expensive, so when I am home, and not so paranoid about leaks, I use supermarket-own ones. I tend to find them less plasticky and cause me less “nappy rash,” too. at 42p a packet from Tesco, compared to the Always ones at about £2.89 in our local shop, going through a packet a day at times, the savings are substantial.
Treatment
IUS - Some women find an intrauterine system, often known as “the coil”, thins the womb lining and makes periods lighter. I am not having this done as I do not feel it is suitable for me for various reasons, but it might be something you can discuss with your GP
Contraceptive Hormones - “The pill” or even a contraceptive patch can help to control or lessen period blood loss, to help with symptoms. Again, not for me - the pill gives me severe migraines, and I’m told this makes me a stroke risk and not suitable for taking it. But it is effective and safe for a lot of women.
Tranexamic acid is a medication that controls bleeding and is given to make blood clot more readily.
Non-steroidal anti-inflammatory drugs (NSAIDs) are widely used to relieve pain, reduce inflammation, and bring down a high temperature - this is what I have currently been given.
In more severe cases, a doctor may recommend an endometrial ablation (surgery to remove the womb lining) or even a hysterectomy (removal of the uterus)
Grieving my fertility
Although I have had two children, a son and a daughter, who are now adults, and I am 44 years old, I have often thought about how it would be nice to have one last go at motherhood. My partner has none, but would be a great Dad. Having this condition, at my age especially, means that the chance of me having more children is very, very low indeed - and nil if I need a hysterectomy. So I feel a bit like I am grieving and wishing that I had met my partner a lot earlier as perhaps more chances of parenthood would have been available to us.
I feel a bit like I am letting him down. He has never done anything to make me feel like that; it is just something in my head for me to work through. He is younger than me, and feeling like that might come with my being the “older woman.” He is concerned for me and my health and is doing his best to support me, but at times, I feel like he could do better than me. With my grey hair, wrinkles, and now this, I feel very old, and I think that my own self-doubt and lack of self-esteem play a bigger part here than anything else.
I don’t know if all women my age go through this feeling. With menopause around the corner anyway, do most women feel like the loss of their fertility (if they were lucky enough to have it to begin with) is something to feel sad over?
I will keep you all updated as I explore my options with my GP going forward. Still, in the meantime, I ask that you share either this article or perhaps another from a reputable source about adenomyosis, as it is not talked about. By bringing the condition to their attention, you might save someone from a lot of suffering and “grinning and bearing it.”
If you are struggling or have/have had this condition, I would love to hear from you. Perhaps we could support each other or learn from each other.
Further reading about adenomyosis:
NHS: https://www.nhs.uk/conditions/Adenomyosis/
This Week’s Sub Stats
Well, I can see that I am still gaining subscribers - though I wonder if I will hit my target of 100 by 2025? That does seem to be a bit ambitious! But, you never know.
Warm ‘N’ Fuzzies,
Freya xx
* Note - for this article, I am referring to people who menstruate as “women,” for simplicity. Still, I acknowledge that the word “woman” has a broader meaning and mean no offence to anyone who identifies as a woman and who doesn’t menstruate.