by Haych Geddes
TW: infertility, mental illness / bipolar, reference to weight, narcotics
Here’s my story: I knew something wasn’t right when I was 15/16 years old. I kept going to the doctors, who said it was a bacterial infection and continually prescribed me antibiotics and creams which did nothing. I had numerous swaps done, etc., which felt very degrading and invasive.
It wasn’t until I went back to the doctors at age 24/25 and told them nothing is working that they actually listened to me. I was referred to the private hospital and was seen by a gynecologist... at first they thought I had a cyst, but then said they suspected endometriosis. I had a laparoscopy a year later. My endometriosis had exploded during the operation in which they had to fill me up with something to kill off all the spread of endo. I was told that I must go on contraception to help stop endometriosis from growing, because as soon as it starts growing again, it will spread as my ovary was left open (from where they had to scrape it).
I was told my chances of having children are slim. I went on the pill- I put on so much weight, and eventually stopped taking it. I then got the depo injection every 3 months (my moods were very up and down to the point I suspected bipolar disorder). I then switched to the implant. I was told by my doctors that all the contraception options would make me put on weight, so I stopped altogether, although knowing I may not be able to have children and that my endo would grow again.
I went back to the gyno some time after as I was experiencing pain and was told my bowel was stuck to my ovary. I had to go back to the doctor’s again as my mood swings were so bad it was affecting my relationships with others, and also my work.
I was advised about medication but said no, as I didn’t want to live on medication. So I ended up in therapy. I completed 6 weeks of therapy where I was then referred to the crisis mental health by the doctor. I went to an appointment where the nurse said it was not my mental health- it was my physical health and the cause was my endometriosis as this plays havoc with our hormones. The nurse suggested that I request a female doctor, as I found all the male doctors just referred me for mental health. In the end, I ended up on sertraline. Still not on contraception, my moods got a lot better with the medication.
I hadn’t had much pain at all during the time off contraception, but have always suffered with my bowel movements and a bloated belly since my laparoscopy (all caused by the endometriosis).
In January of 2021, I started to get horrendous pains continuously. Due to Covid, I struggled to see any doctors for a whole month, even though I was suffering. I ended up in urgent care, where I was told to go home, have a hot bath, and use hot water bottle. Nothing else was said, and I was sent home still in excruciating pain. It was then that I was signed off work.
I had to fight for pain relief with my general practitioner, ringing them everyday, in which I was nearly given tramadol which has huge affects on sertraline... I had to bring this up to my doctor and he then told me I was right and that the highest and only pain medication I can take was Nefopam, as it did not interact with my sertraline. I rang my doctors every day following as I was still in pain. They eventually saw me and did a urine sample- again- and found that I had an infection. I still couldn’t walk, as my pain was so bad. The Nefopam made me feel like a zombie, I was unable to drive - I could just barely function. I’m an apprentice social worker for the safeguarding children’s team, so being out and about working with families as a keyworker was necessary. The doctor also referred me to the hospital for a scan, but they refused my referral and said ‘it wasn’t the right cause of action at this time’. So then my doctors referred me to the private hospital, where I had the Mirena coil put in. The coil did give me some pain relief, but I am not entirely out of pain.
Endometriosis sometimes takes years to diagnose and is misdiagnosed. This is a long term condition that many people assigned female at birth (1 in 10) have to put up with. There is no cure and not enough awareness. My goal is to improve the lives of people affected by endometriosis and work towards a future where it has the least possible impact on those living with it.
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Below are some photos that document my most severe cases of "endo belly", extreme bloating and swelling
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