Blog #21 , Fern McAulay, 23, Invercargill, New Zealand
I may look fine on the outside but inside I feel like my body is trying to crawl its way out. If people think you’re making it up and being pathetic, you don’t need them. Fight for your rights. Fight for your body. You are not alone.
Approximately how long did you have symptoms for before being told you have endo?
I’ve always had really bad and heavy periods, since the age of 10. I started to get really bad symptoms not long after I turned 18, so in all nearly 10 years before proper diagnosis and 3 years before I was even seen my a gynaecologist.
What symptoms did you have before surgery?
Cramps, heavy periods since my first period. But as I got older, the cramps felt like I was being stabbed and I knew it wasn’t normal. No matter how much I watched my diet or exercise, I was always bloated and always in pain.
What were you diagnosed with initially?
I wasn’t diagnosed with anything the first time I went to the hospital. I was told I had a low pain tolerance and to just “suck it up” and that more than likely I was just constipated. I knew that wasn’t right, as I had normal bowel movements. I had an ultrasound that first visit and they said they couldn’t find my left ovary. But that was normal…
How many doctors and specialists did you see?
Wow. A different doctor each time I’ve been admitted to hospital. NEVER the same one. I changed from my childhood GP (whom I’d been with since I was born) to another, a urologist and a gynaecologist.
How many ultrasounds did you have and was anything abnormal noticed?
I’ve had about five ultrasounds, internal and external, between the ages of 18-21. As I mentioned before, they had trouble finding an ovary in the first couple of ultrasounds but no one ever acted like that was a problem.
Endometriosis is usually caused by excess of estrogen and poor liver detoxification. Have you ever been told this information?
I’ve never been told what causes endo, only what endo is in terms of medical speak.
With liver function in mind, have you ever had glandular fever?
No, I’ve never 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?
I was on the pill from 16-22. I found it useful as a contraceptive but I always got my period, for longer than usual, even on the days that I skipped it. I was told I can’t have the mirena because I get terrible headaches and migraines and there is a history of heart problems in my family. I am currently using the Depo-Provera injection and have been for nearly two years.
If yes to HRT, what were your side effects? Did you improve or worsen on HRT?
I still get a bit of spotting, and quite a bit of cramping and every now and then have terrible flare ups. I would say I have improved slightly since being on HRT.
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 haven’t come off HRT but my GP has said she will discuss different options when the time comes..
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?
I have had none of the above tests offered to me. I had to fight and beg to even see a specialist.
Have you had adrenal fatigue?
I’ve never been told that I have adrenal fatigue, but I constantly feel tired, stressed and at my wits end!
Do you know if you have had an elevated white blood cell count in the past?
I kept finding random bruising around my body, with no recollection of hurting myself or bumping into something. I had a blood test done the results came back with elevated white blood cells. I wasn’t given any more information.
Have your blood tests for hormones come back ‘normal?’
I’ve never been told if my hormone bloods were normal or not.
If you had a blood test for hormones, did the GP/specialist ask where in your cycle you were, so they could determine if the hormone levels were correct for the day you were in your cycle?
Yes they did, but my cycle was never regular and I was just told to get the test done “whenever I could.”
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?
YES! A million times yes. Endo has affected my life in ways I cannot even explain. There are days when I feel like I am super woman and can do whatever is thrown at me, then there are days when I struggle to move. I’ve been on anti-depressants as a result, because my GP could see how low and terrible I was feeling every time I hit a dead end.
Did you know, when you have endometriosis, your oestrogen and progesterone are not doing their “dance” properly together? Progesterone is your anti-anxiety and anti-depressant hormone. With this imbalanced, you will probably feel anxious and depressed.
I knew that endo had to do with estrogen and progesterone but not about the anti-anxiety hormone..
How old were you when your endo was confirmed?
22 years old.
How severe is your endo?
Stage 2-3. I know though that symptoms and pain don’t always match up to their specific stages.
How do you manage your endo?
At the moment, mostly with HRT and pain killers. My wheat bag is also my best friend. I am working on my diet, cutting down gluten etc.
What have you learnt about your fertility since finding out you have endo?
As I am only in my early 20’s and do not have a partner, my specialist told not to worry about my fertility. But I’ve always wanted a family, and I’m terrified it’s going to be a struggle or will never happen.
What fertility tests were you offered? E.g. AMH blood test.
None at this point in time.
Does anyone in your family have endo?
No, I am the only one in my family to have been diagnosed with endo. This is definitely a struggle, as no one understands and I’ve been called an attention seeker and that I’m faking.
Have you changed your diet or lifestyle?
I am slowly changing my diet, but only because I have researched myself the benefits of diet and endo. I haven’t been offered any advice from a professional. I don’t push myself so much anymore, and I try to not get so stressed out but its hard.
Have you seen an integrative practitioner, medical herbalist, naturopath or similar? If yes, what did you learn?
No, I haven’t seen any of the above.
What type of surgery did you have?
I had a diagnostic laparoscopy surgery.
Was a spray gel or mesh used?
I wasn’t told.
What symptoms do you have now?
Symptoms are similar as to before surgery. If anything, they are getting worse.
What else was discovered during your surgery, if anything?
They said they removed a “sample”.
How many surgeries have you had? Will you require more?
I have only had one, yes I’ve been told I will need more.
Has the endo returned post-surgery?
Yes the endo has returned.
Anything else you would like to add about your journey?
If anything, looking at my answers to these questions… ladies you need to ask more questions. I just believed and took everything the doctors said to me, because they know right? They’re the professionals and this is their job. I’ve had to do a lot of my own research, beg, beg and beg to be seen by anyone and taken seriously. This is your body and you know in yourself if something is not right. You are not being silly or paranoid. You need to demand proper and good medical care. My biggest issue has been making people understand how endo affects your whole entire lifestyle. I may look fine on the outside but inside I feel like my body is trying to crawl its way out. If people think you’re making it up and being pathetic, you don’t need them. Fight for your rights. Fight for your body. You are not alone.