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  • Writer's pictureIt’s Complicated

My journey with endometriosis

After nearly 12 years of pain and horrific bleeding, i was finally diagnosed with Endometriosis. This was always assumed but never confirmed as I was deemed too risky for exploratory laparoscopy and nobody ever did an MRI scan.

I started my period at age 11 and they weren’t great. The pain was awful, to the point of punching walls/cupboards/showers and spending an hour or so trying to get from my bed to the toilet then taking forever in the toilet and then spending more time trying to make it back from the toilet to my bed. On top of that, I was bleeding buckets ! It was getting quite bad so I made a trip to the A&E and was given 2 medications, 1 to control the flow and 1 to help with the pain. The doctor was horrified at how much blood there was but said it was only because i just started them and they will settle soon.

Nothing settled.

The pain got worse, but i got better at controlling it, because otherwise i couldn’t function. The bleeds would last longer. Days to weeks to 4 months at a time bleeding with barely a 2 day break in between. Nearly 3 years ago, I saw an endo specialist in London (1 appointment as he wasn't the best) who started me on Norethisterone with the Microgynon to stop my periods.

That combination worked great and so I haven't had a period for nearly 3 years ! In between I've had some medication interactions, 1 of which caused the worst pain and it was stopped immediately. However, just because I didn't have a period, doesn't mean my pain disappeared. Slowly the pains been getting worse, it's mainly soreness and a constant dull ache, but I do get pain which makes it hard to move or stand/sit long.

Around 2 years ago I started seeing a Uro-gynaecologist who specialised in caring for patients with Hypermobile Ehlers Danlos Syndrome (godsend!). He has been amazing. Was the only one who really took all my symptoms seriously, worked with me, found infections in my bladder and explained why a dipstick isn't useful for HEDS patients, and has now found the endo and will be removing it.

So what is Endometriosis ?

Endometriosis is when the tissue SIMILAR to the one found inside the uterus, starts growing elsewhere. It is not a gynaecological disease !! There have been cases of endo all over the body and was recently found in the brain. There are 4 stages of endo, but the symptoms dont always match the stage. There is currently no known cause for endo. Hysterectomy and birth control are not cured for endo !

Some of the symptoms I have are :

- Horrific pain all over the abdomen, back, vaginal and rectal

- Bleeding that didn't stop or would restart randomly

- Clots/tissue

- Swelling/bloating

- Cramps when standing or sitting for long

- Difficulty going to the toilet

Treatments I've tried :

- Different forms of birth control

- Tranexamic acid

- Mefanemic acid

- Non pharmaceutical approaches ; Heat pads, CBD oil, eating foods that don't cause inflammation.

Diagnosis :

Unfortunately, it isn't an easy disease to diagnose. The Dr will depend on your medical history first and foremost and rule out other conditions. MRI scan is done to check for endo, but a scan can be clear and you can still have active endo inside. Therefore an exploratory laparoscopy is done to search for Endometriosis. Depending on what is found excision or ablation surgery is done to remove the endo.

Personally for me, my scan showed endo on the sigmoid colon, rectal area, behind the uterus and on ligaments. I will be having excision surgery and a possible removal of the sigmoid colon or a temporary colostomy will be placed. All of this depends on what the doctors find inside and will assess the damage then decide on a course of action.

Please note : Recent guidelines indicate that you can still have endo elsewhere if your exploratory laparoscopy comes back clean.

After my surgery I'll be writing about my experience.


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