Diagnosis Diary

This page is a rough outline of how I have come to the current treatment stage, a lot of the older points will be rough dates only, it’s been a while in the making!

December 1993- first period, on Christmas Day! 13 years old.
Throughout my school years I had very heavy periods, often doubling up towels and tampons and almost always leaking onto my clothes. I thought this was normal. I remember in one of those health classes that only the girls had that the lady giving the talk told us we would only lose about an egg cup’s worth of blood each month, and I thought what a silly cow that’s not right. I never sought help or questioned my own experience as not the same as everyone else.
I was an overweight, asthmatic, tired, hairy and greasy teen. I had terrible mood swings and hysterical episodes.

2001ish- following painful periods and repeat episodes of vomiting and diarrhea I was sent for a scan for PCOS. This was an external ultrasound, negative result, no follow up was offered,

2002- clinical depression diagnosis, prozac prescription for 1 year.

2002-3ish- Following bad fatigue, increasing skin and hairiness problems diagnosed with impaired glucose tolerance and referred to hospital.
Saw dietician and endocrinologist for 2.5 years. Lost roughly 15% body weight in this time, IGT reversed, period symptoms decreased but still very heavy.

2004- on getting into a long term relationship I sought a contraceptive pill and also asked Dr for something to help with hairiness, particularly on stomach. Dianette prescribed for both.

2008- clincial depression diagnosis, citalopram prescription for 2 months then given up due to side effects.

2008/9- gave up contraceptive pill,  heavy but generally not painful or problematic periods.

2010– contraceptive pill prescribed again, standard combined pill.

Summer 2015– came off contraceptive pill due to age (30+), recent weight gain and family history of breast cancer.

November 2016– bowel symptoms began of bloating, nausea and pain. Tested for h pylori (negative) and coeliac disease (negative). Prescribed stomach acid inhibitors. No ease in symptoms after 3 months.

February 2017– scan for suspected gallstones, negative, no follow up offered.

April 2017- GP diagnosed IBS, issued meberivine and advised other symptoms probably ‘just period pain’.
Suffered so heavily from period that was sick, sweaty and dizzy throughout a really important family occasion where I ballsed up basically every responsibility I had.

November 2017- revisited GP advised worsening mood and pain with periods, heavier flow, large amount of clotting. Offered mini pill but didn’t take it due to risk associations.

Easter 2018ish– revisited GP as worsening period pains, offered nothing further but painkillers or coil fitting.

May 2018- visited GP again and requested to see female GP for second opinion. Reported clotting, heavy flow, fatigue and constant bowel issues, bleeding from vagina after bowel movements as a recent symptom. Asked for family history and referred for IV ultrasound.

July 2018-
Unable to continue prescribed painkillers for painful back injury due to severe digestive reactions, assumed IBS reaction.
Occurrence of sudden edema in right leg/foot, assumed due to injury and daily need for anti-inflammatory meds or possible ovarian issues. Advised to stop AIs and return in six weeks if swelling still apparent.

End of the month IV ultrasound shows single fibroid (2.5cm) to front of uterus and low level echoes indicative of endometriosis.
GP dismissed need for gynecologist referral and offered contraceptive pill again as fibroid ‘too small to be a problem’ and pill would ‘control the endo by switching off cycle’.
I should thank the ultrasound operator here as she told me what she had seen on my scan and I had time to research this before going back for follow up with my GP and I knew that this advice was basically uninformed bullshit. So I insisted on the gyne referral, now due in September 18.

September 2018-
Initial gyne consultation confirmed adenomyosis, fibroids, heart shaped uterus and tilted uterus. Mirena coil recommended, one month norethistone prescription given. Advised to book Mirena fitting with GP, return to gyne clinic in six months. No current intention to further treat/diagnose generic endometriosis.

November 2018-
Following a trip to A&E with intense pain convinced to start hormone therapy with Desogestrel (progesterone only pill).

February 2019-
POP therapy prescribed for additional three months as periods and majority symptoms halted.
Late in month, symptoms and bleeding return despite continuation of POP.

May 2019-
Follow up gynae consultant appointment given after push from GP. Laparoscopic treatment for endo and endometrial biopsy agreed. Surgery appointment pending.

August 2019-
02/08 had a call from locla hospital offering a cancellation appointment for laporoscopy in three days time. Declined this due to work commitments but was fortunate to have another available appointment in just two weeks. Panic stations activated.
16/08- Admitted 0730 for day surgery diagnostic laporoscopy, endometrial biopsy and fitting of mirena coil. I was third on the list, spent more time in recovery than on the table. Released home around 4pm. Diagnosis confirmed adenomyotic uterus, endometriosis deposits to uteroscaral ligaments and nodule on bladder. MRI scan ordered to establish severity.
23/08- Recovering well at home.