Meet 23 year old Bex & read her story on the long process she underwent in discovering her Adenomyosis diagnosis…. ”In comparison with other brave members of this small but powerful community, I've had a really lucky run with my recent diagnosis. After coming off the pill, implant and contraceptive patch 2 1/2 years ago (my body needed a break and so did my mental health), I was surprised to see how well my body coped with periods. Only lasting 3 days, a couple of spots on my chin, no real mood swings, and being able to use just small sanitary towels due to it being so light, I thought - this is SO much easier I can't believe I didn't do this sooner. Then, around 7 months ago I had what felt like the mother of all periods. In the sunny month of August I had gone from being able to wear floaty dresses no matter what time of the month, to being confined to a dark room with a cold flannel over my forehead for migraines and having to change a sanitary towel and tampon every hour otherwise I'd be leaking onto my clothes. Dismissing it as a one-off, I was horrified when in September the same thing happened only this time, with excruciating stabbing pain in my lower abdomen. My belly had swollen to the size of what would be a 6 months pregnant woman, my face, legs, arms and boobs all swelled up. (For context, I went to get my boobs measured during the start of the cycle to see the difference - I'd gone from a 34C to a 34FF in the space of 3 days.) I didn't understand what was happening to my body. Needing to work from home more and more during my period, I confided to my employer about this newly found circumstance and they informed me that I actually had access to private healthcare for new conditions and I was told reassuringly that I could contact them to get a consultation. In a matter of days I was seen by one of the best gynaecological consultants in the area. He informed me that his daughter had trouble with her periods, it was probably hereditary and that I should try the pill again. I pushed for an internal scan as I didn't want to jump straight back to the pill again and in other areas of my health I had been wrongfully dismissed for well over a decade, because of this I felt as though I knew my body, and I knew when something was wrong. He agreed and I was scheduled into a private hospital scan on New Year's Eve. The woman who was dealing with me made it an incredibly easy, painless time and in under 15 minutes from the time the probe was inserted I had a clear diagnosis of Adenomyosis. Endometriosis' cousin if you like, whereby Endometrial tissue grows around your organs and has really similar symptoms, Adenomyosis grows inside your uterus. Immediately googling what this condition was after coming out of the hospital, I was devastated. The ONLY thing that kept reappearing was 'miscarriages' 'radical hysterectomy' and 'no other cures'. I couldn't wait to be a mother one day, I felt as though the option had been removed and after silently sobbing in the car I decided to try and find other people with Adenomyosis and I was met with one or two Instagram accounts that were helpful for information but appeared to be very negative in terms of conceiving a child. I went to my doctor, and she explained my full report to me. I have Adenomyosis (which I should say - are benign cysts that can grow or get smaller) on the inside of my Uterine Wall which when I'm due on my period gets bigger because of the changes in hormones hence causing extreme pain and swelling. Having Adenomyosis on the inside of your Uterine Cavity tends to be what can cause miscarriages and therefore I should stand a good chance of being able to conceive naturally. The downside thereafter is that it generally gets progressively worse so when I was 17/18 for example, being able to conceive would have been much easier and sadly it has been getting worse as the years go on. I've been coping with the fact the only 'cure' is a hysterectomy, I am prepared to continue with this month by month until I'm ready to become a mother because that's the decision that is right for me.
It is manageable with temperature treatment, peppermint tea, magnesium supplements, evening primrose oil and just being kind to your body. For example if I know I'm due on during a certain weekend, I'll arrange to postpone the plans explaining to friends and family the reason. At the start of typing this I explained I'm very lucky with my journey, from start to diagnosis in under a year is almost unheard of in modern gynaecological medicine, but I'm not just lucky in that sense. I'm lucky because my employer understands, my boyfriend understands, my friends and family understand and they are all trying to help.
Without them I can't imagine how hard it must be. For women and girls that may find themselves with the same diagnosis, I'd say be as strong as you can, take the painkillers and get yourself into a comfortable state - enough to get through the week that lies ahead. It will eventually stop and your belly won't ache like it's actually trying to give birth. I have a 'one day down, 5 more to go' mentality that keeps me going, knowing the acute pain won't last forever. I've upped my water intake to exactly 3 litres a day and it has helped with the bloating.
My boyfriend is incredible and will take over the household chores and cooking for the 4-6 days I'm down and out, he'll often get up with me in the middle of the night at it's worst and just be there as someone to vent to and to cry to. I'm aware not everyone gets this kind of help, and I want to offer my experience as some kind of advocate and as a believer to those effected. I believe that their symptoms are very real, and I believe that they might be struggling and I believe their story. It's hard to go from 'floaty-dress-girl' to 'duvet-hot water bottle-bloated girl' but it shouldn't define you or control your life. Try and make allowances and enjoy the time of the month where you can be floaty-dress-girl.”
You can follow Bex on Instagram @rebeccaemjones.