Venus talks about her life with endometriosis

Venus hello! Thank so much for joining forces with us! We can’t wait for the Instagram takeover next week!

We have spoken before to our medical experts about endometriosis, but it is as equally as important to understand what it is like from the patient’s perspective.

Can you start by explaining to us what it is like to have endometriosis?

Having endometriosis is not fun and I think it is a condition that a lot of people, including myself until last year, don’t really know about. Thats why it can go undiagnosed for so long. When I found out that I endometriosis I was so upset because I knew this was something I was going to have to live with for the rest of my life. However after crying for about 2 hours I knew I had to pull myself together and bring some awareness to this issue that affects so many of us.

How does someone know if they have endometriosis? What are the symptoms?

Detecting Endometriosis can be difficult because the symptoms can be so varied from person to person and the symptoms of endometriosis are very similar to other common conditions. . For me my symptoms where heavy, painful periods, bloating, pain when urinating, pain during sex and severe depression. These are all things that I thought for years were separate issues when in fact was severe endometriosis. The main symptoms to look out for are…

  • Painful, heavy, or irregular periods
  • Pain during or after sex
  • Infertility
  • Painful bowel movements
  • Fatigue

Why does it take so long for the doctors to diagnose endometriosis? You say it takes on average 7 years?

It can take on average 7 years because most people are told that their symptoms are down to just having a bad period, IBS, digestives issues or even sometimes Vaginismus (involuntary tightening of the pelvic floor muscles). In some cases people with wombs don’t find out they have it until they try to conceive. Also the diagnosis is very invasive and the only definitive way to diagnose endometriosis is by a laparoscopy. This is when camera (a laparoscope) is inserted into the pelvis via a small cut near the navel. Scans, blood tests and internal examinations are not a conclusive way to diagnose endometriosis and a normal scan, blood test and internal examination does not mean that you do not have endometriosis. I visited the GP on several occasions over the course of about 4 years with all the above symptoms but kept being brushed off. Then at the start of 2019 I was rushed to A&E with severe urinary conditions where again I was told it was maybe a burst cyst. It wasn’t until I attended an Eve appeal event where a professional gynaecologist told the audience about endometriosis, this being the first time I had even heard the word I noticed a similarity to my own pain.

Is there anything you can do to ease the symptoms?

There are a few options you can do while you wait for surgery to help ease the pain including hormone treatments e.g. the marina coil and the contraceptive pill. This will help reduce the production of oestrogen in the body. A number of hormone treatments will attempt to block or reduce the production of oestrogen which is what entices the endometriosis to grow.

You can also use things like heat pads, pain killers, exercise (this has helped me a lot) and a change in diet. It’s not proven but professionals say there is a link to milk and carbs increasing the growth rate of endo so I’ve also cut that out. Also a TEN’s machine is really helpful and you can buy these in most chemists and in Boots.

When did you realise that something was wrong? 

I first noticed something was severally wrong at the start of 2019 when one night I went for a wee and the most unbearable pain began to spread quickly over my lower abdomen and down my left leg. I also had very bizarre shooting pains up my anal area which was very uncomfortable to say the least. I was rushed to A&E where I was referred to have a internal scan into my uterus. Noting was found and I was told it was most like a cyst that had already burst. Two weeks later the same pain happened again and I was rushed straight back to A&E where I was told the same thing. I knew this wasn’t the case so I went to my GP and demanded to see a gynaecologist. I was then advised to have a laparoscopy. 2 months later I have the surgery and was told I had severe endometriosis. However the worst part of all of this was that the surgeon couldn’t remove it because it was so severe. I then had to go away and put my body through temporary menopause (HRT) to reduce the size of the endo. I went back 3 months later and had it all successfully removed.

Can you describe what the pain was like?

The pain for me was an extreme stabbing and shooting like pain in my uterus along side painful bloating and numbness in my left leg. This was happening pretty much every day for a few years and was just intensifying more and more. I knew it was getting worse because when ever I had a surge of pain I would almost pass out it was so intense.

Where you realized that the pain levels were not normal, what did you do? Did you go to your doctor?

The first time I realised it wasn’t normal was on the first night I was rushed to A&E. I was passing in and out of consciousness and I was screaming the house down in pain. I knew then that this was my body telling me to seek further investigation beyond a GP.

What did the doctors do to help you?

Honestly my GP’s didn’t help at all and it wasn’t until I saw a gynaecologist did I feel like my pain was being taken seriously. I finally felt like there was some solutions to my problem. I don’t think there is anything worse then being in pain and not having an understanding of why or what is causing it.

How is life for you now?

There are some pros and cons right now. The pro’s being that my sex life is incredibly improved and I no longer feel pain during sex. I have also made a lot of improvements to my health including regular exercise and healthier eating to help reduce pain so I do feel physically and mentally better. However my endo was removed in December and I had the marina coil fitted but the coil is now causing me a lot of pain and I have noticed some endo pains coming back so I may need to go for another laparoscopy.

Thank you so much for being so open. We really are looking forward to your takeover!

Whilst you wait for the Insta takeover next week @IVFbabble, you can find Venus at @venuslibido or learn more about her on her website.

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