Endometriosis - Our Story

I’m just as guilty as the next guy when it comes to posting my best bits on social media. The stuff that makes me look like I have it all together. I shout about the fact I have a job that I enjoy and a family that I’m proud of. If you take a look at my feed, you’ll see it’s filled with photographs of my two beautiful daughters. I don’t post about the tears and the tantrums, and I certainly don’t post about the fact my wife is living with Stage 4 endometriosis.?

For those that don’t know, endometriosis is a cruel and debilitating condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes. Stage 4 is the most severe it can be and means my wife is often in pain and subjected to symptoms such as excessive menstrual cramps and extremely heavy bleeding. Along with this at the same time she has also been diagnosed with Adenomyosis which is similar to endo but effects the inside of the womb.??

According to the World Health Organisation, it affects roughly 10% (190 million) of reproductive-age women and girls globally. However, thousands struggle to get a diagnosis which means they’re essentially left to suffer. As it is Endometriosis Awareness Month, I wanted to share my wife’s story from my perspective as I’ve seen first-hand how this can physically and mentally destroy a person.

It all started in 2017, shortly after the birth of our second child. Her menstrual cycle went back to normal straight away, but her bleeding became ridiculously heavy to the point where it began impacting her everyday life. As a result of such heavy bleeding, she became anaemic for one week of the month. Things got so bad that she refused to leave the house without a change of clothes in her handbag. We’d be in the middle of getting our weekly shopping, and she would have to run off to the nearest bathroom. She wouldn’t be able to go swimming for at least two weeks of the month. If going on holiday, she’d have to go and see her GP before to get tablets to stop the bleeding just so she could enjoy it. She began suffering from headaches that would wipe her out for days, all while experiencing bad skin, bad hair, cramps, and food-related IBS flare-ups. As a woman who takes pride in her appearance, it was horrible for me as her husband to watch her begin to hate the way she looks. The impact all of this had on her mental health was staggering. She started experiencing high levels of anxiety, worrying about what was happening to her body and began feeling like she was trapped in a vicious cycle. It would be a week of headaches leading up to the period, followed by a week of heavy bleeding on the period, then a week of anaemia after the period. We used to joke that she got a one-week break each month when she felt okay.

We visited the GP numerous times, and they finally agreed to carry out a scan. They told us it was Fibroids (non-cancerous growths that develop in or around the womb) and never followed it up. At one point, she was prescribed TXA which baffled me. TXA is what you see on ‘Casualty’ as it is given to patients who have been stabbed or seriously injured because they are losing so much blood. She was essentially put on tablets given to emergency patients, but she was not being treated like one. This would have been fine had they been given as a stop-gap as we waited to be referred. However, this wasn’t the case. No referral ever came, and she was left to continue taking them for months.

After what could be classified as a partial mental breakdown, my wife declared she couldn’t carry on with what she was experiencing. We then decided to pay for a consultation and go private (a luxury I’m aware many people don’t have) as we were desperate for answers and needed a solution. After speaking with a specialist, she was sent for an MRI scan. While waiting for the results, she was placed on the Qlaira contraceptive pill to try and help stop the bleeding. However, this didn’t work. It made things worse.?

Two weeks later, we received the results. The last thing I want to do is make this about me, as it is my wife who is physically going through it. However, that call was one of the most horrible experiences of my life. Alongside the endometriosis, the doctor also told her there was a lesion on her bowel which needed to be investigated for potential cancer. This sent me spiralling, as I lost my mother to bowel cancer back in 2012. It is one of the most horrendous diseases I have ever seen, so to be told my wife had to be investigated for this made me feel ill. However, I knew I had to put on a brave face for my wife and assure her everything was okay and that this was just a routine practice.?

While we were waiting to be referred, my wife was put on Prostap injections which is a hormone therapy used to stop oestrogen production and brings on temporary menopause. My wife is just 36 years old, so this hit her hard. When it was time for the results, we were beyond relieved to find out there was no cancer detected. However, it wasn’t all good news. We were told the endometriosis had attached so much to the bowel that part of it needed removing which could result in my wife needing a colostomy bag. Again, this brought back flashbacks to what my mother had gone through in her final months. Mentally, it was dragging up of sorts of emotions for me, and I wasn’t the one suffering from it.?

Fast-forward to now, and my wife is still on the Prostap injections. These are injected every three months, which means she is still in menopause while waiting for her operation. It looks like it’s going to have to be a joint procedure of a hysterectomy and part bowel removal. It’s going to be one hell of an op and will put her out of action for months. We are now waiting on a date as the waiting list is huge. However, she can only be on Prostap for up to 2 years as it causes brittle bones. So the clock is ticking!?

Helplessly watching the person I love go through all of this has made me feel like I have to do everything I can to help raise awareness of this condition. That’s why I have written this post. I’ve also written to my MP demanding that they help improve endometriosis diagnosis and care and would encourage anybody reading this to do the same. It’s extremely quick and easy, you just fill out this form over on the Endometriosis UK site. Too many women have been left to suffer in silence and something needs to change.?