Finding Out I Have Endometriosis, 7 Years On

Now who remembers this blog post? It’s an oldie, and when I first had surgery to confirm I had Endometriosis.

This was back in 2015. I had been told I have stage 4 endometriosis and would need assisted help to have kids.

Fast forward to now, there’s a lot more information on Endometriosis, there wasn’t back in 2015. And turns out “1 in 10 women suffer from Endometriosis“, which is insane!

Finding out I had Endometriosis seven years ago was a revelation. The stomach pain, the heavy periods, the sickness, the unability to get out of bed some days, finally had a name. I hadn’t heard much about endometriosis back then, but I was glad to be identified after years of suffering or told it was IBS.

I thought I would answer some questions I get asked on a regular basis and put them into words… So I hope you find this somewhat informative or can relate.

What’s it really like having Endo?

Honestly, it’s ok. I’ve come to terms with it. It’s a bit of a pain during the dreaded time of month, but since I’ve had three laparoscopy’s to remove the endo tissue and cysts, I’m no where near in as much agony. But sometime’s I’ll have a really bad endo day, but I tend to power through and go about my day as normal.

One thing that I didn’t realise back in 2015, is the infertility and trauma that comes with it. I was told back then that I would not be able to have children. And I was only 25! I was in no shape ready to have kids. Although looking back now, I wish I started to try sooner. I’m 32 now, and have had an unsuccessful attempt at IVF which went horribly wrong and it’s the reason why I had a stoma and lost an ovary.

I’ve just very recently had my stoma reversed.

What’s a laparoscopy like?

Honestly it’s a little bit scary when you go for your first one, because they need to find endometriosis tissue to confirm you have it and to remove it while they’re there. So, it’s like going into the unknown.
You will feel bloated and a bit uncomfortable afterwards and it takes around one week to two weeks to recover.

Is there a cure for Endometriosis?

Sadly not, if you have it you will need multiple laparoscopy’s over time to remove the endo tissue.

Does having Endometriosis affect your fertility?

I can’t answer this for everyone, as everyone’s endo is different to mine, however, it has affected my fertility. I lost an ovary, my fallopian tube on my other ovary is blocked from endo tissue. And I get recur-ring endo cysts on my only ovary, which will need removing from time to time.

Why did I have a stoma?

During my very first IVF procedure, either during egg collection or embryo transfer, the needle punctured my large endo cyst on my right ovary at the time. The cyst became infected and spread to my bowels, so, it was quite a messy operation when the NHS could operate six months later due to Covid. They put the stoma in, which I was only supposed to have for a year, but with the NHS waiting lists and almost 2 years later, I decided to go private to get it reversed. The surgeon put a stoma on the other side of my stomach, then 4 months later reversed it.

Those are all the common questions I get asked about Endometriosis, the surgery and my stoma(s).

Lastly, everyone who has endometriosis deals with things differently. I’m not a doctor, I can only talk about my experiences I’ve had with this cruel illness for over seven years. Some don’t have fertility issues with Endometriosis, some do. Depends what stage your doctor classes you at I believe.

If you have any other questions, feel free to leave them in the comments below.