Trying to conceive with endometriosis and PCOS

I first became aware I would have issues conceiving when I was diagnosed with endometriosis and PCOS (polycystic ovary syndrome) at the start of 2013. I had come off the pill a year earlier after being on it since my late teens, with only a couple of short breaks. Within a few months, I was having increasingly heavy and painful periods, but also sharp, stitch like pains at other points in my cycle, particularly around the lower right side of my abdomen.

In November that year, I ended up in hospital due to the severity of the pain, and taken into theatre to remove my appendix, as they thought I had appendicitis. This was the second time I’d been taken into theatre for this reason as the same thing had happened 4 years earlier. That time, they’d left my appendix intact as they found no sign of infection but instead found a burst ovarian cyst. At that point, I’d also been diagnosed with IBS (irritable bowel syndrome) after repeated trips to the GP with stomach pains and bloating. Funnily enough, the pain and bloating settled down after I’d healed from the surgery and didn’t start again until I came off the pill. I was also told at this point that I categorically did not have PCOS and that there would be no impact on my fertility from the burst cyst. Naively, I believed what I was told, despite this being from a General Surgeon.

Fast forward to 2012 again, and this time they removed my appendix “just in case”. They had said that if they found any evidence of anything gynaecological, they would call a gynae surgeon into theatre. They did find a series of cysts on my right ovary and fallopian tube, but as there was no gynae surgeon available, I was referred as an outpatient and had to wait another couple of months for an appointment.

At my first outpatient appointment, I was diagnosed with both endometriosis and PCOS, following an internal ultrasound and a detailed history being taken. I was told in a very blunt manner that I’d probably never be able to have children and to go and lose some weight before he would consider any type of fertility treatment. He also put me back on the pill for 6 months, as this would help to definitively confirm the endometriosis diagnosis if my pain went away whilst taking it.

When I came off the pill again, I was soon in lots of pain every month and had a flare up that lasted several months, requiring very strong painkillers on a frequent basis. The consultant eventually agreed to operate on me to remove any endometriosis he could and would also do a procedure called ovarian drilling at the same time, which would hopefully kickstart my body into ovulating. Following the surgery, he confirmed that I had stage 4 endometriosis that was also sticking my bladder and bowel down.

Blood tests confirmed I still wasn’t ovulating, so I was prescribed a 6 month course of a fertility drug called clomid. Despite tests showing I ovulated on the lowest dose; I still didn’t fall pregnant whilst taking it. I was told I would need to have IVF, as he believed there was no point doing IUI (intrauterine insemination), given my age and history. However, my BMI (body mass index) was too high to qualify for NHS funding. Over the following 4 years, I tried everything to get my BMI down to the required level but just couldn’t quite get there, which is common for women with PCOS, as weight gain is a symptom. During this time, I also had several courses of a monthly injection of a medication called Decapeptyl, which put me into temporary menopause and supressed the endometriosis from growing further. As this was only a short-term solution, I eventually ended up having further surgery in 2018.

By this point, not being able to conceive had caused my mental health to seriously deteriorate, and I’d had several long periods of absence from work. On the whole, my employer was really supportive, which sadly isn’t the case for many women in my position. I’d actually lost about 2 and a half stone by then but still needed to lose another half stone to qualify for NHS funding. We eventually decided to go private, as I just wasn’t sure I would ever be able to reach my target weight.

We started IVF (in vitro fertilisation) in February 2019. I felt prepared for how emotionally difficult it would be, but not how tough it would be physically. Following our egg collection, we had 6 embryos that made it to day 5 but they all had to be frozen due to me developing a side effect called OHSS (Ovarian Hyperstimulation Syndrome). The clinic reacted quickly and prescribed medication which meant we were able to do a FET (frozen transfer) the following month. Sadly, following a positive pregnancy test, that round ended in an early miscarriage.

After a few months’ break, and some counselling sessions with one of the counsellors at the clinic, we felt ready to try again. As we still had 5 frozen embryos, we did another FET. This time, we were successful, and our baby boy was born in March 2020, a few days before the entire country went into lockdown!

We’re so thankful that IVF worked for us and that we have our crazy, energetic toddler. Despite having some embryos left, we’ve had to make the difficult decision not to have any further transfers. With the rising cost of living, we just can’t afford to go through it again. We know how lucky we are to have our son but it’s hard knowing that infertility has taken away the choice to grow our family further.

My advice to anyone that suspects they have endometriosis or other potential fertility issues would be to push your GP to refer you to a gynaecologist. Bleeding so heavily you daren’t leave the house and pain that stops you from functioning are definitely not normal. GPs can be great, but they aren’t specialists, and an earlier diagnosis can help to give you more control and choice in when/if you decide to try to conceive.

I’m Helen, 42 years old, and married to my husband, Chris. We have a soon to be 3 year old boy, Rowan, conceived through IVF. Diagnosed with endometriosis and PCOS (Polycystic Ovarian Syndrome) 10 years ago.