Talking endometriosis
You have something called Endometriosis. Can you explain what that is?
When I was diagnosed, nobody actually told me what endometriosis was, so I resorted to Dr Google, which is never a good thing! Reading the internet really scared me, and I thought I would need a hysterectomy and never have children.
Now I know that endometriosis is a condition when tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes. Endometriosis can cause fertility problems amongst other issues, but the gynecologist reassured me that I didn’t need to worry about that.
I was only 23 and although I’m not ready to have kids the idea that the opportunity to have children might be taken away from me was really distressing.
How did you find out that you’ve got endometriosis?
I’ve always had terrible period pains, but I thought everyone else did too. I didn’t realise that people don’t normally take multiple pain killers just to get through the month.
When I was 13, I went to the GP for period pain and he put me on the pill. 10 years later, it was only when I was chatting to a work colleague that I realised I needed to do something about it.
I went to see my GP and he was horrible. I explained that for two weeks before my period, I have what feels like contractions. Then during my period I am in agony and live on painkillers. He gave me an ultrasound which came back clear, and it was only because I persisted that he agreed to refer me to a gynecologist.
He completely invalidated me and told me to wait for my hormones to settle
I had to wait for 4 months, but thankfully the gynecologist listened to me and reassured me. He talked through the options with me and for the first time I felt so much better.
Have you had treatment yet? How was it?
I decided to go for surgery to remove the endometriosis and to have the coil fitted which should also help.
I waited another 4 months for the surgery, which was booked for KIMS hospital on the NHS. It was during the pandemic so my Mum just had to drop me off outside.
I briefly saw the surgeon afterwards, but I was still foggy from the anesthetic. I got a letter which told me that the surgery went well, and that they had removed most of the endo as well as adhesions caused by scar tissue. I was discharged the same day.
That first day at home was awful – I took 16 painkillers and I felt very confused.
I’d been signed off work for 2 weeks but by week 3 I was still in pain and crying because my hormones were all over the place.
What would have made your experience better?
The experience with my GP is still affecting me. If only he had listened to me and believed me, things could have been different.
After the surgery I had lots of questions, but no-one to ask. I did get a follow up call, but it was rushed, and I couldn’t ask what I needed to know.
How does endometriosis affect your day to day life?
Before my surgery, I was in pain for almost 3 weeks every month. I would regularly cancel seeing my boyfriend or my friends, and I would stay at home for the week of my period.
Now, 5 months after surgery, I am still bleeding and still in pain, although perhaps not as bad as before. I’ve tried to get in touch with the gynecologist, but I’ve been told I have to go back to my GP first. I did an eConsult and I have been told it could be another 5 months until I can get an appointment with the specialist.
Is there anything you want to make sure people reading this know?
Trust your instinct.
If you think something isn’t right, it’s probably true.
On average it takes 7 years for someone to be diagnosed with endometriosis. It’s so easy to convince yourself that it’s normal to be in that much pain, but it’s not.
I’ve found the Endometriosis UK website helpful, and they have several support groups in Kent. Just be mindful about how much time you spend reading other people’s experiences, it can get overwhelming.
In the meantime, I am still waiting for a call to book my appointment. The story goes on…….
Is your story similar to Rheanna's?
We'd love to hear it.
Tell us your experience and we can help improve it for other people like you.
