Blog #18, Jacqui, 29, Taupo, New Zealand
I’m becoming more and more comfortable in talking openly about endo, because if there’s even one person who I can inspire to speak up about their problems, that’s one less woman feeling miserable and alienated with this horrendous and relatively unknown disease.
Approximately how long did you have symptoms for before being told you have endo?
At least 9 long years
What symptoms did you have before surgery?
Extremely painful abdominal cramps (dysmenorrhoea), heavy and irregular periods, bowel problems, dyspareunia, tiredness and low energy, irritability, lack of concentration, moodiness, feeling really down, recurrent UTIs, back and leg pain. I never pieced all the symptoms together and was told by others that the pain was ‘normal’ and my emotional state was due to being a hormonal teenager at the time. There were days where I could hardly function and lie in bed crying and barely able to breathe from the pain.
What were you diagnosed with initially?
Nothing – all the pain was dismissed and none of my symptoms were considered as a whole package. I was pretty much told that it was all ‘normal’ and that going on contraceptives was the only thing that could help. The dyspareunia was eventually put down to the recurrent UTIs. Endometriosis was never considered and in the end it was me, who after
some research, proposed it to a doctor as a possibility. Previous to my own research, I had never been told about Endometriosis.
How many doctors and specialists did you see?
3 doctors, 2 specialists, 1 therapist, 1 gynecologist. All the time I had to argue my point and really push for more to be done.
How many ultrasounds did you have and was anything abnormal noticed?
1 ultrasound and it came back clear of anything.
Endometriosis is usually caused by excess of oestrogen and poor liver detoxification. Have you ever been told this information? No
With liver function in mind, have you ever had glandular fever?
Have you ever used HRT (hormone replacement therapy) such as the pill, IUD, mirena, injection etc? If so, which HRT have you used and for how long?
Yes – started on the pill when I was 16, then moved on to Depo Provera, then to a Mirena.
If yes to HRT, what were your side effects? Did you improve or worsen on HRT?
Well I was quite stoked at first that my A cup boobs suddenly were a C cup on the pill. Unfortunately, with both the pill and Depo I was still having irregular periods and the pain was still bad. Since having a Mirena, I’ve had 5 years period free and most symptoms are improved. I still have phantom pain in my hip and leg and most recently, chronic abdominal pain which I suspect is the Endo returning.
If you have been on HRT then have come off it, what support was offered by your GP or specialist? What did you experience coming off it? (eg. Acne, period not arriving)
I tried going off for a while because it wasn’t helping at all and the doctor offered no support.
There are many tests available that can provide useful insight into endometriosis. For example, salivary hormone profile, adrenal hormone profile, urinary and estrogen metabolites. What tests have been offered to you?
There are tests? No, nothing has ever been offered.
Have you had adrenal fatigue?
Not diagnosed, but all the symptoms sounds awfully familiar. I’ve always been severely iron deficient and tired even after a full night sleep.
Do you know if you have had an elevated white blood cell count in the past?
Have your blood tests for hormones come back ‘normal?’
I’ve never been tested
If you are willing to answer, has your endometriosis situation ever made you feel low or depressed? If yes, have you ever been on anti-depressants for this?
Absolutely. It’s physically and mentally draining, and because it’s an invisible and rarely talked about issue, I didn’t know who to turn to for help. This made it an extremely lonely experience for me. I have been on anti depressants, however they were prescribed as a muscle relaxant to deal with the dyspareunia.
How old were you when your endo was confirmed?
I was 24 when i had investigative surgery to diagnose and remove the endo. This was after being on a the public surgical waitlist at Waikato Hospital for over 2 years.
How severe is your endo?
Moderate, Stage 3 of 4.
How do you manage your endo?
Having a Mirena helps manage most symptoms.
What have you learnt about your fertility since finding out you have endo?
Nothing, apart from feeling like I have a ticking time bomb inside me.
What fertility tests were you offered? E.g. AMH blood test.
Does anyone in your family have endo?
None have been diagnosed.
Have you changed your diet or lifestyle?
No, the struggle is real. I love coffee and chocolate which set off my cramps, and I dont exercise as much as I should.
Have you seen an integrative practitioner, medical herbalist, naturopath or similar? If yes, what did you learn?
What type of surgery did you have?
Laprascopic excision of Endometriosis bu Dr Mark Insull at Mercy Ascot in Auckland. He was the most amazing, genuine and caring surgeon.
Was a spray gel or mesh used?
What symptoms do you have now?
Back, hip and leg pain, severe abdominal cramping and bloating.
What else was discovered during your surgery, if anything?
The endo was everywhere and the photographic proof is nasty
How many surgeries have you had? Will you require more?
One surgery but I won’t be surprised if I have more.
Has the endo returned post-surgery?
I’m currently awaiting another scan and am convinced it’s back.
Anything else you would like to add about your journey?
If you suspect something is wrong and your doctor doesn’t agree, keep trying until your happy with the result – nobody knows your body like you do. My journey is a hard, emotional one. It’s easy to feel very alone fighting this invisible internal battle, so I’m incredibly thankful for my friends and partner who are so supportive and caring. I’m becoming more and more comfortable in talking openly about endo, because if there’s even one person who I can inspire to speak up about their problems, that’s one less woman feeling miserable and alienated with this horrendous and relatively unknown disease.