Delays To My Fibroids Treatment Are Affecting My Fertility & Sense Of Self

Carina is in her 30s and lives in Wales. She has fibroids which have been under investigation since late 2016 and is currently on the waiting list to have a full myomectomy. Here, she tells R29 UK how the waiting times for gynaecology are affecting her health, her fertility, and her sense of self as part of our exclusive investigation into growing waits.

I'd had heavy periods for quite a while, but when I found a lump in my stomach in late 2016 I went to the GP who referred me to gynaecology. After my first gynae appointment they told me I had fibroids which are quite common, especially in Black people, and it's nothing to worry about.

They put me on tablets to shrink the fibroids that stopped my periods and put me in a temporary menopause for three months, but they didn't do anything else. As I didn't really understand fibroids at the time, I said I was just happy to wait and see what happens. I was then sent for an MRI and didn't hear anything after six months, which is when I went back to my GP to see if there were issues with my hormones. By 2019 they started to investigate it further because I was still having problems and realised I had fertility issues as well.

In late 2019 they agreed that they would do a small surgery to remove one of the fibroids they thought was affecting my ability to have IVF. At that point I was told then it was an eight week wait, but when I phoned to chase that I was informed it was actually six months. And then in March 2020 the pandemic hit.

I actually could have had my procedure right then but it was at the start of the pandemic and unsurprisingly I was quite worried about being in hospital at that point. So I delayed it and didn't hear anything else until I put in a complaint in October 2020. By November I had my small surgery and once again didn't hear anything or have any follow up. I went back to my GP to try and find out if they could chase it, and I was told I'd have another six months wait for my post surgery appointment.

I still didn't have any idea if the surgery had worked or what was going on by March 2021 but I finally managed to get an appointment in June. In that consultation, I asked if I could be put on the waiting list to have the further surgery to get the rest of the fibroids out. And I'm still waiting.

In the meantime, every time I've had fertility appointments they've said they can't do anything for me until the fibroids have been removed as they're messing me up internally. They couldn't even start me on any of the medications for egg collection because the fibroids were in the way.

The delay means the fibroids have definitely grown. Before the pandemic they were definitely a lot smaller. Stress can make them worse too – I've felt the change within myself. Before I'd only get bloated during my periods but now I'm bloated constantly. There isn't a day where I'm not bloated and looking pregnant. It's ironic really, isn't it?

It's affected my personal life too. I've definitely noticed that I'm very anxious and down a lot. I'm just not the same person I used to be at all. I think I used to be quite fun but I just don't enjoy things now – going out especially. I know I need to be near a toilet because I've got a bladder of a pregnant woman so I need to know that there's a toilet close by in case I need an urgent trip or something. It's affected my life a lot.

When I was first diagnosed with fibroids I was in a relationship. Separately I'd been told that I have blocked tubes so that was the reason that we were going for IVF. But during the small surgery, one of the surgeons said that the fibroids might actually be the reason that my tubes are blocked. I've never had any sort of investigation into it though so I wouldn't know until I've had the main surgery. I have no idea what's going on at all inside.

For me, private surgery is not really an option. It's either the choice of private surgery or have a house deposit – I can't do both. That's a tough decision to make. And there's no guarantee that with the £7,000 surgery that fibroids won't come back. Not knowing whether or not they could come back if I've just spent a lot of money on getting them removed is hard. Especially when others have access to it for free and there should be no reason why I shouldn't.