Megan

Blog #19, Megan, 24, Auckland, NZ

 

To other girls who think that they have endometriosis… you know your body best, don’t let anyone tell you that what you are feeling isn’t justified or that it is in your head.

 

PRE-SURGERY, PRE-DIAGNOSIS

Approximately how long did you have symptoms for before being told you have endo?

I had symptoms from my first few periods (age 11)

 

What symptoms did you have before surgery?

Acne, headaches, constipation and diarrhea, exhaustion/fatigue, dizziness (I would often feel faint and pass out), nausea, horribly painful and heavy periods that would last for days at a time. My pain was so severe that often I could not stand up and had to go to A&E for pain relief or was taken to hospital.

 

What were you diagnosed with initially?

I was never diagnosed with anything, I was just told over and over again that I had ‘very bad period pain’. However, I always knew it was something more as my periods were nothing like what my friends described. I did have my appendix out, with one Doctor on a hospital admission confusing my symptoms for appendicitis.

 

How many doctors and specialists did you see?

I saw countless doctors at A&E clinics and at the Hospital Emergency Department on my numerous admissions, in addition to my own GP, a Gynecologist, a gastroenterologist and a dietician.

 

How many ultrasounds did you have and was anything abnormal noticed?

I have lost count of how many ultrasounds I have had.

 

Endometriosis is usually caused by excess of estrogen and poor liver detoxification. Have you ever been told this information?

I know that I have to keep my estrogen levels low, but this is something that I know through working with a dietician not from any of my admissions or through my specialist (gynecologist).

 

With liver function in mind, have you ever had glandular fever?

No

 

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, I have used the pill, the injection and the mirena. These things were all tried as I thought that they were my only option to manage my symptoms. If I had it my way, I would have none of these things in my body and would manage my pain naturally.

 

If yes to HRT, what were your side effects? Did you improve or worsen on HRT?

The pill turned me into a crazy person! All versions I tried were not helpful for my personal wellbeing, or my endo! I felt very depressed and eventually came off it. The injection also made me depressive and did not resolve ANY of my endo symptoms. I currently have a mirena and while the first 6 – 12 months were horrendous (painful, heavy bleeding), I am moving into my 5th year and things are well managed (however, I am sure this is more to do with my diet and regular exercise as opposed to the mirena).

 

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)

None…

 

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 these offered to me.

 

Have you had adrenal fatigue?

I believe that I have; however, a doctor I spoke to did not agree with this and said there was no science to support its existence.

 

Do you know if you have had an elevated white blood cell count in the past?

Not sure, sorry!

 

Have your blood tests for hormones come back ‘normal?’

Not sure, sorry!

 

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?

Not sure, sorry!

 

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?

It has made me feel terribly depressed! When you are telling multiple people how you are feeling and they are trying to tell you otherwise, it is incredibly disheartening. It took me many years to feel validated in my experience.

 

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.

If I am honest, I do not have a good understanding of how this works for in my body.

 

ENDO CONFIRMED

How old were you when your endo was confirmed?

20

 

How severe is your endo?

My specialist told me that my endo was the worst she had seen in her 20-year career.

 

How do you manage your endo?

I have the mirena, however, the best thing that has helped me to manage my endo is exercise and working with a dietician. I also have IBS and working out how food is connected to my pain has been amazing!

 

What have you learnt about your fertility since finding out you have endo?

I only know what the many doctors have told me – that my chances of having a baby are less than if I didn’t have endo.

 

What fertility tests were you offered? E.g. AMH blood test.

N/A.

 

Does anyone in your family have endo?

No.

 

Have you changed your diet or lifestyle?

Yes.

 

Have you seen an integrative practitioner, medical herbalist, naturopath or similar? If yes, what did you learn?

I have worked with a dietician and she helped me to work out what my body can and can’t tolerate. This was initially for the purposes of my IBS, but has had an amazing effect on my endo symptoms.

 

SURGERY

What type of surgery did you have?

I have had 3 laparoscopic surgeries

 

Was a spray gel or mesh used?

Unsure.

 

What symptoms do you have now?

I do not get periods as I have the mirena, but still get regular cramping and nausea.

 

What else was discovered during your surgery, if anything?

Nothing else was found. As mentioned, I did have my appendix removed during my first surgery.

 

How many surgeries have you had? Will you require more?

3 – it is likely that I will need more in the future.

 

Has the endo returned post-surgery?

Yes.

 

Anything else you would like to add about your journey?

To other girls who think that they have endometriosis… you know your body best, don’t let anyone tell you that what you are feeling isn’t justified or that it is in your head.

To other girls who have endometriosis… Ask more questions, even when you think they are silly… could it be this? Could it be that? Is there something else I can use to manage the pain? Is there a natural way to make this better?

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