Endometriosis UK
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Stage 4 endo and fertility

So my battle with endo started in 2012 when I was back from a good 5km run one evening and then found myself doubled over in pain and rushed into A&E with suspected appendicitis. After 3 days if tests they said a cyst had raptured in my abdomen and the fluid was causing the pain but this would jus subside and be absorbed naturally. As for the other cyst they could see on another ovary they suggested watchful waiting. Typical NHS not interested stick a band aid on it.

Fast forward one year later 2013 and I've moved abroad and one night at work working late I keeled over with the same pain. This time abroad and on a private health care plan they diagnosed a very severe stage 4 endo case and an emergency laproscopy to remove an 11cm by 8cm cyst

It was not pleasant but they took it out and I recovered within a week or 2 roughly from the procedury which only left 4 small scars. As for ongoing care the surgeon who was a bit of an aggressive sales type recommended Lupron to aggressively scale back the endo because he said the ruptured cyst from before had spread the gunk to all my organ and made them sticky and messy. I declined because the side effects sounded so extreme. Instead I tried one Depo Provera injection to just stop my periods for a bit. That one injection that was meant to last 3 months meant I didn't get a proper period again for nearly 9 months which wasn't great because my husband and I wanted to try for our first child. Finally after periods normalised we tried for only 6 months and got regular scans to check for cysts.

The thing is within 3 months on my left ovary as if by clockwork I grew another cyst immediately. It was different this time because once you know it's like you suddenly feel in tune and I could feel a pain on the left side. The doctors said that's not possible but I genuinely started feeling this time something was hurting on the left again which prompted me this time to get tests early.

This time around 2014 I had a 7cm by 4cm cyst on the left and the surgeons firstly saud another laparoscopy but in the end they felt nervous about accidently cutting my other organs so they did a full on laparotomy. That was just under a week ago. I wish I could say it was easy and painless like the laproscopy. Or maybe I have a low pain tolerance but when I woke up it was horrible.

A sore throat from the intubation tube thingy meant I needed to cough. But try coughing when you have been cut that deep under your belly. It felt like I would tear open and was the most painful thing I have been through. What helped was drinking lots of fluids to help flush out the horrid nausea from the pain IV drip and the anisthetic wearing off. The fluid helps because you may find yourself constipated for 2-3 days. I didn't feel hungry so sipping apple juice gave me energy. The next worse thing was the horrid bloat. I honestly could not believe it. The laparoscopy left me bloated from gases but this was something else. I was passing wind and gurgling like an engine yet no solids coming through and the size of my belly was like I was full term pregnant. So disjointed and uncomfy

I've got to say though 5 days later and I'm home and feeling human again. It's amazing how quick the body just rejuvenates and fights. My stomach is still enormous and nothing fits and forget about wearing jeans or a waist band. Be kind to yourself and wear baggy stuff and time to heal. I'm trying not to feel overwhelmed at how much this disease has changed my body.

I was a curvy size 12 64-66kg at the start and now 2 years later from a mixture of eating out of recovery comfort eating, depo injections, now zoladex injections and now a laparotomy I'm staring at the highest weight I've ever been 80kg. Struggling to fit into a size 16 and sick of people asking me if I'm pregnant which couldn't be further from the truth.

I'm doing my best not to be overwhelmed and just focus on the next round of treatment which is zoladex injections. They have been giving me hot flushes which added to my now fat frame makes me feel constantly fat frumpy and ugly. I'm 30 years old going on 60 and a pregnancy seems like a distant dream if at all possible

Also lurking around is the worries of the "C" word because apparently endo is one of the reasons.

I would desperately love to hear your stories and experiences. I can't believe how my life has changed and that this is truly an I curable disease with no real advice out there on how to prevent or improve the situation.


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