Kokova Magazine

Adenomyosis is a benign, often painful gynecological condition where endometrial tissue grows into the muscular wall of the uterus, causing it to thicken and enlarge. Key symptoms include heavy, painful periods, chronic pelvic pain, bloating, and painful sex. Management focuses on hormone therapy, pain relief, or hysterectomy - but only once a diagnosis has been made. Mine was not diagnosed until I was over 50, and then it was mentioned in passing, described by a sonographer as 'bits of your period have moved into the wall of your womb. It's nothing.'

Throughout my life I had suffered from heavy periods¹, bloating, and IBS. All of my symptoms were dismissed as un-noteworthy following a Laparoscopy² in my 30s, because periods often 'look like more blood than it really is, and nothing was found during the procedure'. In order to convince my doctor my periods were really heavy, I invested in a menstrual cup during my early 40s, at a time when I was approaching perimenopause. This meant I could measure my loss, and present the data to my doctor. The cup held a 30ml capacity when full, and my data showed I emptied it more than two times per day in the first few days of my cycle. A total of over 120 ml in two days, which often meant I didn't venture far from home on those days each month.

Fast forward a few years, with no treatment or further investigation offered for my heavy periods, I found myself having treatment for postcoital bleeding - a common symptom of cervical ectropion or CIN 1 (low-grade cervical dysplasia). I was referred to hospital for both Cold Coagulation³ and Cryotherapy. This lead to my very first 'hot flush' and the start of my menopause journey. I had two cold probe and one hot probe treatments over the next few years. This is a procedure on the cervix, performed in the hospital treatment room.

I was still having heavy periods and, after the hot probe treatment for CIN 1, my cervix 'stuck' together. This was not discovered until I presented at A&E after my period started but suddenly stopped on day two. The best description I have is that I felt as if I was giving birth. I was having contractions and, by the morning of day 3, I could feel a large lump trying to expel itself from my body, vaginally. At the hospital, without an examination, I was told I had a prolapse and left to wait for a gynaecologist to examine me.

Imagine a balloon full of water and the contents trying to squeeze out through the tied knot. A dangerous emergency situation where the womb could burst - and I sat and waited for over 90 minutes before the cervix finally unsealed in the waiting area. My heavy periods were confirmed at that stage along with clots, one of which had blocked the smaller than usual 'exit'.

Following this incident I was given a scan, and it was at that appointment I was told I had some uterine lining growing in the muscular wall. No diagnosis, just a casual comment as an explanation. The reason women in peri- or menopause are told this is because adenomyosis is driven by estrogen, which fuels tissue growth. During later life our oestrogen drops and adenomyosis, often undiagnosed for many in their younger life, will actually recede and disappear.

I decided to start taking HRT. My doctor was not keen. So, I saw a private menopause specialist to oversee my HRT journey, and they wrongly prescribed continuous HRT when I was still having periods, and over-prescribed male testosterone, which is all the NHS has available for women at present. I had a Mirena Coil fitted* but my womb lining still grew to an 8mm thickness. This resulted in another laparoscopy at 54, and the consultant again telling me my issues were not gynaecological.

At 56 I had reached the limit of my patience, so I went to my doctor and told them the bleeding had started again. It hadn't - but this was the only way to be referred back to a different gynaecologist... and that referral changed my life.

Not only did the new consultant order an ultrasound scan, they could read it too! They diagnosed the adenomyosis immediately, alongside a tucked away ovary which had been causing many years of intense pain. I was extremely fortunate to be covered under my private insurance; the only benefit to not having had a previous adenomyosis diagnosis. This meant I was able to have a total hysterectomy with bilateral salpingo-oophorectomy** performed by my gynaecologist in a private hospital with less than three months on the waiting list.

I chose a total hysterectomy to ensure the adenomyosis was completely removed. The ovaries were removed due to the pain, and my aunt who had died from ovarian cancer, and the cervix removal due to previous issues, and my mother had the same for cancerous cells. I was in menopause so I was not producing enough female hormones, so knew I would benefit from HRT after the operation.

Post-surgery complications and an infection at 14 days were swiftly dealt with, and my HRT was re-started with 6 monthly blood tests for my oestrogen and testosterone. I was privately prescribed Androfeme, a testosterone licensed in Australia made for women but not currently available in the UK unless it is on a private prescription. Guessing the right testosterone dose was eliminated, and my hormone levels are now checked twice a year with my consultant follow-up. They also check my symptoms, and any other issues I may be having like dry skin or intimate irritation. My current HRT prescription consists of 3 ml Sandrena gel and 0.4 ml Androfeme cream daily, with a twice-weekly estradiol pessary. The cost: approximately £350 every 6 month.

I was 56 before my symptoms and period issues were taken seriously... undiagnosed for 42 years after my first period. How does this still happen to women today?

¹A typical menstrual period involves losing about 5–80 mL (1–6 tablespoons) of blood over 2–7 days, with heaviest flow in the first 2 days. Menorrhagia (heavy menstrual bleeding) is generally defined as losing more than 80 mL, lasting over 7 days, or passing clots larger than 2.5 cm (about 1 inch).

²Laparoscopy, or "keyhole surgery," is a minimally invasive surgical technique used to examine or treat abdominal and pelvic conditions through small incisions, usually less than half an inch.

³Cold Coagulation (Hot Probe): Uses heat (100°C+) to burn the tissue. Cryotherapy (Cold Probe): Uses a cold probe to freeze the cells. Both hot and cold probe procedures are usually performed while the patient is awake, and without anesthetic.

*This warrants a stand-alone article about non-anaesthetised coil insertion and removal.

**A surgical procedure that removes the uterus, cervix, both fallopian tubes, and both ovaries.