To the specialist who suggested I take out my mirena coil and try for a baby to see how my symptoms are after birth.To a society who thinks it’s acceptable to expect every woman to want to have a baby.
Stop… Please… Before you do more harm than good. I am 30 years old, I don’t have children, I do however have 6 beautiful fur babies who I love as if they were my kids. I have several illnesses one is a lesser known invisible illness called adenomyosis, even most doctors and nurses have never heard of this condition and yet being on a number of support groups I have found its not as rare as you would think.
Let me tell you a bit about adeno… Instead of the endometrial lining growing where it should mine grows inside the muscle wall of my uterus and because it is inside the muscle it cannot shed, instead every month it continues to build up causing an oversized and boggy uterus. Symptoms include irregular and heavy periods, 24/7 pain in the abdomen, around to the lower back and down the legs, insomnia, exhaustion, depression, brain fog just to name a few (trust me the list goes on for several pages).
Looking back now I realise I have had this disease since I hit puberty however because periods seem to be such a disgusting and embarrassing thing to talk about I thought what I was experiencing was normal, I didn’t know any better. I have never had regular periods and when I have had them I bled so heavily that I found it soaked through my clothes on a regular basis and I had no control over it, not to mention the cramps, my god the cramps…
I turned 21 and was put on the progesterone only pill, for two and a half years I was in heaven, not a period in sight, no more pain, no more ruined clothes. Then one day I had a random period arrive I anxiously awaited the next month to see if aunt flo would arrive again, she didn’t come, I put it down to stress. A couple of months later it came back aunt flo decided she wanted to visit me every month again, I was none too happy to make her acquaintance let me tell you.
Eventually I got used to it again, same old story, no different to when I was a teenager. Soon things began to change. 3 years ago I moved in with my boyfriend, as far as we were concerned we were both healthy adults and in a happy relationship I was 27 at this point. One month I had a period that lasted three weeks finally I came off, again I just put this down to stress. One week later I was back on again this was THE most painful period I had ever experienced and lasted for another 10 days. I remember being in so much pain I was curled in the featal position on the sofa sobbing, enough was enough I finally realised something must be wrong, this can’t be normal I made the decision to go see my gp.
I won’t go into the ins and outs of my 2 year journey to a diagnosis because we will be here forever, what I will say is for a long time I was fobbed off “there’s nothing wrong with you” “you’re normal” “it must be your genetics” I stood my ground and requested tests, I had several blood tests that all came back normal, I had an ultrasound which again came back normal, let me tell you if all the usual tests come back normal doctors will not then think ok well we’ll try looking for something unusual… Oh no…. “Its all in your head”.
I never gave up, I knew there was something wrong as eventually the pain became worse and became constant. One day I went to the doctors crippled in pain, tears building up in the corner of my eyes, he takes one look at me “you look like you’re in pain…would you like me to refer you to a specialist?” It was like I was hearing a heavenly choir, oh my God he was finally taking me seriously, it had only taken 6 months to get to this point.
Finally I managed to get my appointment with the gynaecologist and he was amazing within 5 minutes he said the word endometriosis, but it couldn’t be diagnosed with out a laparoscopy. I went away thinking finally I know what’s wrong and it made sense. The day of the lap afterwards he came to visit me in my bed, “sorry we couldn’t find any sign of endo but I believe it may be a similar condition called adenomyosis we went ahead with giving you the mirena coil because it will alleviate some of the symptoms just like it would have if you had endo, if it works you have adeno, if not we will have to refer you to a bowel specialist” ( the gynaecologist’s go to move because they don’t know what’s wrong with you)
4 months later follow up appointment, mirena worked for one month and then symptoms came back. “Ok we’re going to try this next treatment for 6 months called zoladex. If this works you have adeno, if not I will have to send you to a bowel specialist”(see he did it again)
Zoladex, let me tell you is horrible. A flippin implant being injected into your stomach every 4 weeks to induce menopause at the age of 28 and 29, just wow, a whirlwind of needles, hormones, tears, hot flushes, night sweats and if one more person said to me “you’re not old enough to go through that yet” I swear I was going to go down for murder. Miracle of miracles though, no more pain, what a blessing.
I am now at the point where I have my diagnosis of adenomyosis, I have been on zoladex, injections for 15 months, I had to be taken off them in march of this year as they were causing additional issues, I now have painful joints that crack constantly and my wrists will never be the same again.
Now for the good news, there is actually a cure – unfortunately it’s a hysterectomy.
NO consultant will agree this surgery at my age with no children unless it is life threatening.
I had hoped a second opinion would get me closer to the surgery I long for. So I went along today and this appointment is what prompted this oh so long rant. The whole time I sat there I was made to feel like the only reason I existed on this earth was to have a baby and that by wanting the surgery I was committing some sort of crime against humanity. “I promise you, you’ll regret it” “you may not want kids now but you’ll change your mind’ “I can’t fathom why a young lady with no children would want this surgery” she even turned round to me near the end of the appointment and said to me “why don’t you have the coil taken out, try for a baby and see how your symptoms are after birth?”
I saw red and left the hospital in floods of tears.
For crying out loud how many times? I don’t want a baby and will not be blackmailed into trying to have one, this disease renders a lot of women infertile or if they can conceive struggle to carry to full term. She could be sentancing me to a long struggle, to numerous miscarriages, not only that but the mirena is currently the only thing i have keeping (at least some of) my symptoms at bay I will not have it taken out.
Who does she think she is? But then I got to thinking why does society feel like they have the right to try making a woman feel like she MUST have babies? Why is it socially acceptable to ask when a woman is going to have a baby or why she hasn’t had one yet? So many women these days can’t have kids or even don’t want kids, don’t make it any harder for them. I can say from the bottom of my heart it is hard. I want to run away and cry every time I think of it, I have dreams of being pregnant and when I wake up and realise i’m not it hurts. Not because I want children, I don’t, its because society has ingrained into me that that is what a woman is for.
My battle to have my cure is ongoing and I will not stop until I finally have my hysterectomy, in the meantime I want to raise awareness, I want society to be a bit more considerate of a woman’s feelings. Also I want the stigma around puberty and periods to stop, if I can help one young girl learn that what she is experiencing isn’t normal then I will have done my job.
Terri runs her own blog, which you can visit by clicking here.
