Updated Endometriosis Journey

Today I took the time to update my journey of living with endometriosis on my About Me page. I hadn't updated it in quite a long time (over a year), so it was well overdue. I've left a copy here if you can't be bothered clicking over. It is quite long, but endometriosis is a chronic illness that I have lived with since puberty and will have to face for the rest of my life, so there's no real good way to shorten it.

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My endometriosis journey started shortly after my first period. I got that, in a library, at age 12.  By 14, I was already in excruciating pain. My periods also never really completely settled and were still fairly irregular. I would often bleed through pads overnight and soaking my sheets in Napisan was a monthly occurrence.

Since my mother had terrible pain from periods when she was a teenager and used to vomit and faint, I counted myself lucky that mine didn’t seem to be as bad (I never vomited or fainted) and figured it was normal. So even though over the counter medications didn’t completely work (I would still be in pain even when I took anti-inflammatory medications like Naprogesic and Ponstan), I didn’t approach my doctor about it until I turned 19 (as far as I can remember).

I went on the Pill for a year and a half when I was 17 to clear up acne issues. I don’t remember that particularly helping my symptoms, but I definitely didn’t enjoy being on it. It made me terribly moody, made my breasts get even larger than they were already (I was self conscious of this and it was also painful) and generally didn’t make me feel like “myself”.

When I was 19 I went to the doctor because I had not had my period for two months, yet I was still getting terrible pelvic pain. He decided to send me off for an ultrasound, which was a strange experience as a 19 year old. My boyfriend at the time came with me since I was nervous, and I have to tell you, I felt odd that I was getting an ultrasound when I wasn’t pregnant. That ultrasound came back clear, so the doctor told me to just deal with the pain and sent me on my way. (Endometriosis cannot be ruled out through ultrasound.)

At 22, I went to see another doctor about it as I was still in pain and it was interfering with my life. She put me on another Pill (Yasmin) to try and manage it but again, it made me so depressed I would cry everyday so I came off it after 3 months. I remember one night waking up at 2 am when the FIFA World Cup was on, dragging myself out of bed and rocking back and forth in the fetal position on the couch while Dad tried to distract me with commentary on the soccer. Although I have never been in labour, I can tell you that the pain was contraction like and came in waves that time. Other times it would be a constant ache in my belly, or feel like someone had taken an egg-beater to my guts.

By 23 I was missing work on a regular basis – I had at least one day off work a month because of period pain, and would be in pain a week before my period. I also caught pretty much everything going around and tired really easily.  A few times I got terrible back cramps where I couldn’t sit up. I knew that it was not normal after all. My friend had a laparoscopy to look for endometriosis and after this I decided to go to her doctor because he took her complaints seriously. So I went to that gynaecologist and he booked me in for surgery. I ended up having to wait 6 months to have my laparoscopy (I went through the public system).

In March 2012, I had my laparoscopy where I was diagnosed and some of the lesions were burnt with lasers as a way to try and get rid of them (diathermy). Before I went in, I talked to my surgeon (he was not the same doctor as my gynaecologist) and he questioned me and told that it was probably “just PMS”. This was pretty traumatic to go through, particularly when he claimed that they found what they expected to find (Stage III –moderate – endometriosis) when I came out of surgery. I also had a Mirena IUD inserted to treat the endometriosis. I had the Mirena taken out in January 2013 due to it triggering anxiety and depression and I was not on any hormonal medication after that for that reason.

After that the surgery my symptoms lessened for awhile. I didn't have the excruciating labour-like pains as often, but I did have pain almost everyday. I felt the need to pee constantly and still had some pain before and during my period, even with the help of drugs, although it did not seem quite as bad as before. I went to a new gynaecologist in December 2012 to get help with my problems of urinary urgency and frequency, as they had worsened since the surgery. I told him that I was often having to get up more than once a night to go to the bathroom and that this was disrupting my sleep. It was so bad that sometimes I could not fall asleep at night due to the feeling that I needed to pee. He blew it off and said that if he had to get up in the middle of the night to go to the bathroom, then I should just deal with it. Like it was normal for a 24 year old. (I had also done the usual tricks and not drinking for a few hours before bedtime and restricting caffeine.) He prescribed me tranexamic acid to light my periods, which did help a lot, but I still had the urinary issues.

So I decided to take things into my own hands and research all the things that I could change myself to help me with my symptoms. I read many scientific papers, books and blogs and decided to change my diet and slowly increase the amount of exercise that I did. I followed a loose version of the endo diet (no wheat/soy/caffeine/alcohol), being more strict with wheat and caffeine than with alcohol (although I still had alcohol sparingly) from April 2013. I trialled excluding dairy for awhile as I had read that it can help reduce the symptoms of endometriosis in some women, but did not find any significant difference and decided that a moderate dairy intake was healthy for me.

Changing my diet and exercise worked wonders. For the first time in a long time I had a had energy and a clear mind. I had a stronger immune system and didn't get sick as often, if at all. Everything seemed to be improving and it seemed to be the fix for me. That was until December 2013 when things started turning sour again. The horrible period pains started coming back and my urinary symptoms the worst they had ever been. This trend continued and in March 2014 I went to see Dr Susan Evans at the Pelvic Pain SA clinic. She diagnosed me with a whole host of secondary conditions that stemmed from my long-term endometriosis pain. I had IBS (which had been managed well through diet changes), central sensitisation (neuropathic pain) and pelvic floor spasm, among others.

Dr Susan Evans prescribed daily low-dose amitriptyline (Endep) for my neuropathic pain, and recommended that I go see a pelvic floor physiotherapist to deal with the pelvic floor spasm. She also suggested that at some point I have another surgery, this time the superior excisional method, as she suspected that the diathermy had not rid me of my endometriosis. I booked in for surgery in June 2014 (due to time constraints of going to the UK to do a Masters for a year in September) and started the low dose amitriptyline.

The low dose amitriptyline coupled with seeing a pelvic floor physiotherapist changed my life. I no longer needed to get up in the middle of the night to go to the toilet. However, the pain before my periods was starting to creep in and I was still getting lower back pain. When I went in for excisional surgery on June 6, 2014, she also put botox in my sidewall muscles and gave me a pudendal nerve block.

The results of this surgery were a shock to me. I was not expecting Dr Evans to find much different to the last surgery at all, as I thought my symptoms had been not as bad as they were before the last surgery. It turned out that I had an endometrioma in one of my ovaries that had attached itself to my abdominal wall and had leaked. I also had endometriosis in various areas of my pelvis including on my ureter, which she was able to remove. Unfortunately, she was not able to remove all of the leakage and endometriosis as it would has been too hard on my body (I was already in theatre for three hours as it was), but she was able to separate the ovary from the abdominal wall and drain the endometrioma.

After this surgery Dr Evans advised me that my endometriosis was too aggressive for me not to be on hormonal medication to suppress it. She was worried that I would end up on a round about of surgeries and keep having to come back. So on June 7th, 2014, I started the Qlaira pill.