Writing a blog about my life with chronic illness, I feel I need to start with the foundation. The beginning. So let’s start with what led up to how my endometriosis is today. How it started and all the different strategies combating this demon.

After M and I got married in July 2014 we decided to stop with my contraceptive pills in the hope of getting pregnant. Since I had been on the pill for several years we knew it could take awhile for me to get my menstrual cycle back. We knew that we have to try to get pregnant naturally for 6 months before we could get help from any doctors. So while we lived our normal lives my period came back. With a vengeance. For each bleeding period my menstrual cramps got worse and worse.

During this period I started to notice a horrible smell coming from my genitals as well as a grey discharge. So I booked an appointment with the town’s gynaecologist. During a phone call I told my mother, who used to work as a doctor, about my appointment and that I planned to ask the doctor about my terrible cramps. To this my mother answered “That’s because of your endometriosis!”

I can not remember that anyone ever told me about my diagnosis before this conversation. I remembered that when I was a teenager (around year 2000) I had a surgery because of a stomach ache. And that they had found a ruptured cyst on my oviduct and a lot of blood in the abdomen. A couple months, or possibly a year, later the stomach ache came back. So my mother took me to a friend of hers that worked as a gyn. Using vaginal ultrasound she found a 5 cm big cyst on my ovary. She prescribed some pain killers and a contraceptive pill to stop new cysts from forming. Within a few days the pain got worse and my mother took me to the ER. They couldn’t see the cyst so they sent me home. Mum called her gyn friend again and she said the cyst probably burst and that’s why the pain worsened. She hoped their would be no more cysts when the contraceptive started being effective. Which probably turned out right.

So when I went to my gyn appointment I told this story to the doctor who started me on contraceptives again.

To try to conceive I had another laparoscopy using ablation 2015, to check if my diagnosis was correct and to make sure there was nothing to stop me from getting pregnant. During surgery they found old and new adhesions in the Douglas pouch and nothing visible that could cause problem conceiving.

So we continued trying to get pregnant but the pain came back again after circa 4 months. So I started with the contraceptive pills again. Since the pains continued getting worse we increased my dose of the contraceptive to stop my menstrual bleeding. Today I use the contraceptive desogestrel (trade name Gestrina) 75 μg 4 pills once a day and have no monthly bleeding. But the pains continued gettÅing worse and for longer periods.

In 2018 I had month-long pain episodes and was lucky if I was pain free enough to work for 1-2 days per week or at all. Since the pills stopped me from bleeding and the doctors in Sweden did not want to do another surgery I started searching the internet.

On Facebook I found several groups talking about laparoscopy using incision surgery rather than ablation. Looking at several peer reviewed medical journals I understood that this method removes more of the endometriosis than ablation which raises the probability of it never coming back at all. In the Facebook groups I learned this method was rarely, or never, used in Sweden. Many in the group recommended the surgeon Peter Barton Smith in London as one of the best ones in Europe. During a visit to my sister, who lives in London, I met with him.

In May 2018 I had my incision surgery with Dr Barton Smith hoping I would get back my old life. Now, 2020, I am so grateful I did this. Sure I still have pain now and then. I would approximate I am bedridden with pain maybe 2-3 days per month compared to 25-30 days per month before the surgery. It was definitely worth it. I have heard that surgeons in Gothenburg is learning the excision method of treating endometriosis, so hopefully more Swedish endo warriors can get this help.