My Endometriosis Story – Part 2

Happy Sunday everyone! This post is part two of my journey with endometriosis and adenomyosis. If you haven’t read part one from last week’s post I would recommend reading it first, you can find it here.

After my second laparoscopy performed, I was prescribed a different pill which was shown to be particularly helpful in controlling the growth of endometriosis. I finally finished university a year later than I planned in 2013 and made the decision to go to Europe. I bought a one way ticket initially with the plan of maybe staying a year or two before returning home. I’ve now been here for over three years and have no plans on leaving any time soon!. My doctor was incredibly supportive of this move and prescribed me all the medication I would need. She also wrote the letters I would need for any doctors I may need to see in the UK. If travelling I highly recommend having a letter from your doctor explaining medications, it makes life a lot easier!

I got to London March 2014, soon discovering that both their private and public healthcare systems worked quite differently to Australia. My symptoms soon became unbearable again and I need to see a specialist. It was going to be a long process to getting seen through the NHS so I found an amazing specialist through my private health insurance. This specialist was also quite experienced in endometriosis and he recommended a laparoscopy so he could properly assess the situation. I had my third surgery in December 2014, which found only small lesions of endometriosis. Again, it seemed it was the location of the lesions, along with the adenomyosis which was causing my pain. I also learned one of my favourite facts about my body – I have an unusually long belly button!

After this surgery I tried the mini pill after the surgery to control my symptoms moving forward. I didn’t last long on this one as it  brought on constant breakthrough bleeding. After discussing different options we made the decision to go back on the Zoladex to try and control the symptoms caused by the adenomyosis. I tried the three monthly injections first, but my body wouldn’t settle. With the constant bleeding and pain I soon switched back to the monthly injections. This helped significantly, almost to my dismay – I didn’t want to be going through menopause again. HRT was also added to my treatment to help lessen side effects and protect my bones.

London Endometriosis
As hard as it has been at times I have never regretted making the move to London.
I stayed on this treatment for over a year until the constant bleeding came back again. This time every damn day for three months. I ended up in A&E again because my GP thought the bleeding was causing severe anaemia resulting in heart palpitations. In the end I was actually diagnosed with having my first panic attack! The non-stop bleeding obviously couldn’t continue because my sex life with my non-existent boyfriend was practically down the toilet at this point. I went back to the endometriosis specialist clinic I was now attending and we discussed the Mirena coil. Up to this point the idea of a metal wire combined with the storied I found on Dr Google scared me away from this option. At this stage I was at a loss though so I finally made the leap and decided to get it.

The clinic told me it would take 2-3 months to receive through the NHS. By then I would be a bloodless bag of bones and so decided to try and receive it elsewhere. I tried a sexual health clinic as suggested by the specialist, this was going to take up to 2 months. Next I tried my GP who could do it in a week, never have I been so excited about a procedure! Now a disclaimer here, everyone’s experience having the coil inserted is different and often they are not very painful at all, this was just my experience. It was quite literally, the most painful thing I have ever experienced in my life. I had taken painkillers beforehand as advised but they did not make one iota of difference.

There were a few reasons for this I think, my doctor whilst very kind, just wasn’t as experienced at the procedure. I also have a very tricky cervix which on more than one occasion has sparked the comment ‘Hmm..I can’t seem to find your cervix’, what every girls wants to hear right? My uterus is also retroverted  which doesn’t help! Somehow I made my way home, literally crawling up the stairs to my room before promptly bawling my eyes out. It took a couple of bed-bound days for the pain to settle. After speaking with a few other girls who had received the coil I had been expecting heavy bleeding for a few days afterwards. I am happy to report though that I just had a few days of light spotting! I think my body had finally decided to give me a break.

I’ve had a varying symptoms since due to changing hormone levels while my body withdrew from the Zoladex and HRT and adjusted to the Mirena. This included an apparently deserted vagina, apparently all my good (and bad) bacteria had decided to skip town. With the help of some probiotics and a more gut-friendly diet this has since improved though. I am now relatively symptom free with only a few light pain days a week.

So that was slightly longer intended but I wanted to give a decent insight into my experience. Hopefully someone reading this can go ‘Yes! Me too!!’. It’s crazy how much it helps knowing someone has else gone through the same thing, you feel happy they’ve experienced the same but then bad because you were happy about someone else’s pain, anyone else felt this?

I will go into a little more detail in the future on particular parts of journey but I really hope this helps some of you. Whatever your experience with endometriosis, adenomyosis, PCOS or any health issue, just know that you’re not alone. That is just one way in which endometriosis has changed my life for the better, it has opened my eyes to a whole new community of women, which is never a bad thing.

Thank you for reading!

Amelia xo


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