Living with Endometriosis Round 2

January 31, 2016

Now this is where I have to explain things because I never wrote about them when they happened because I was too busy processing everything that was going on at the time. But I believe sometimes writing things out can give you some clarity and/or perspective. Sometimes writing things out is a good way of getting rid of what ever it is that’s clouding you. It doesn’t matter if it’s the day it happened or months or even years after. I believe it helps, so today I’m writing about living with endometriosis the second time round and what’s been going on.

So here goes.

Back in June when we were still living in Hull, I started to get sick, really sick. I was in horrible pain and had awful diarrhoea and vomiting bouts. That would last hours and hours and hours. I went to my Dr but he told me I had a bug, then the next month (July) at the exact same time in my cycle it happened again so I went back to my Dr and he started the ball rolling to see what it was.

In August I had an ultra-sound to see what was going on with my ovaries and I left the room, to my Mum waiting for me, a little bit heartbroken and in shock. You see, my endometriosis had come back and the technician looking at the screen said it looked like my ovaries, womb and intestines were all stuck together aka a great big mess. One ovary was stuck to my womb and the other ovary was stuck to my intestines explaining why I was having awful diarrhoea as my ovary was irritating my intestines so when my period started and I was ovulating I became ill.

Later on in August I saw a specialist who basically told us that my endometriosis had come back for sure. I had an internal exam where he made me bleed, and out of all the year’s I’ve had and been having internal exams I have never bled! He told me I couldn’t have any more surgery and that I had to get pregnant ASAP because if I couldn’t get pregnant within a year, year and a half tops I wouldn’t be able to get pregnant. He told me he would book me in for an MRI and refer me back to my original surgeon to discuss the condition of my fallopian tubes. I left the appointment with my Mum half super excited because we had to have a baby now and half upset because seriously could they stop telling me that the answer was to have a baby because they’d been telling me that since I was nineteen and that is not a cure and also because we still weren’t ready for a baby. But I really wanted one.

In September I had the MRI, which was an awful experience because even though I’m not claustrophobic that machine nearly made me. It was so loud and vibrated so much! I just wanted out but was determined to stay and get it done. It was half an hour of pure discomfort for me that’s for sure.

I spent ages waiting for the results of my MRI only to get a letter informing me of my next appointment in November. I continued to have bouts of diarrhoea and vomiting either before my period was about to start, during my period or when I was ovulating. I started to cut down the amount of food I ate which helped reduce the amounts of diarrhoea and vomiting I was having and the length of time I was stuck in the bathroom. I went from spending sometimes six to eight hours to four or six hours but I started losing weight at a more rapid rate.

Through all of this I started to notice that every other month I would be much sicker. I thought this may be due to my ovaries taking turns to release an egg and one ovary was clearly much worse than the other one and it was effecting me.

Come November I was ready for some clarity and help. Sadly it didn’t work the way I would have liked. I went to the appointment with my Mum and my husband to make sure I didn’t forget anything and so they could hear what he said and if they had any questions.

By this point I should say we had been trying to get pregnant since September and had, had no luck.

We were in the cancer clinic at Castle Hill and the appointment was running forty-five minutes late and my left ovary was starting to kill me. The pain was getting to be unbearable and I just wanted answers. My surgeon who we saw seemed more confused that I’d changed my name (that happens when you get married!) than apologetic that he was running so late. He was kind and patient and answered all our questions though.

I could have surgery and he highly thought if I didn’t have surgery before we had a baby I would need surgery afterwards, because he believed it was possible that my endometriosis had started attacking/sticking to my intestines and that I properly didn’t have IBS and it was my endometriosis but he wouldn’t know for sure until I had surgery and he was able to see my intestines. But I had to prepare myself because it could be as simple as scraping off the endometriosis or it could be more serious and I could end up with a colostomy bag.

He did recommend that we try and get pregnant and that the change in hormones would help reduce my endometriosis when I pointed out that we had already been trying for a few months and had been unsuccessful he agreed to put my name down on the waiting list for surgery because a) if you have endometriosis and were unable to get pregnant within six months you would be refereed any way and b) the waiting list was at least four months.

After leaving I was stuck with the conundrum of whether or not to continue trying to get pregnant or to wait until after having the surgery to try again.

As of the end of December we were still trying for a baby and waiting for a surgery letter and still dealing with being ill.