What is Endometriosis: An Interview
By Sophie Hopkins in Collaboration with the UEA Bloody Good Society
Endometriosis UK defines endometriosis as a ‘condition where cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body.’ More simply, this means that these cells build up, then break down and bleed like the cells within the uterus do. The blood from these cells has nowhere to go, unlike the uterine cells that leave the body during a period, and it can be incredibly painful, causing inflammation and sometimes even the formation of scar tissue. It often causes heavy and painful periods.
Affecting 1 in 10 women in the United Kingdom, 1.5 million women are currently living with endometriosis. Its side effects include fatigue, infertility, and bladder and bowel problems. Endometriosis can affect all women and girls that experience a menstrual cycle regardless of race or ethnicity. The impact can be felt for life.
I spoke to a student, Maisie*, from the University of Cambridge about her experiences with the condition:
So, Maisie, when were you diagnosed?
I was diagnosed when I was 19 and it was a total palaver. I first went to my GP when I was 12 with painful cramps and other problems and got put straight on the pill. I was told it was just heavy and periods because they run in my family. There was still a lot of pain, but it was manageable until I turned 17 and became sexually active. Then there was more pain and more problems that getting the implant didn’t fix, but my worries kept being dismissed so I decided to pay for a private gynaecologist. It took forever to get a diagnosis even then because my ultrasound came up clear so they said there was no way I could have it, so I ended up going to a second private doctor who suggested laparoscopic surgery to see if I really had it or if it was something else causing my problems. It was here that I was diagnosed as having stage 1-2 endometriosis.
How much treatment have you had?
So, the second private doctor I saw told me that my options were either to get booked in for a coil and carry on with the pill or have laparoscopic surgery to give me a clear diagnosis. I had the surgery as my family has had a history of fertility problems due to endometriosis and I wanted to have kids someday. Also, because the pain was becoming unbearable and my birth control wasn’t working.
At this point I was 19 and I didn’t want the condition to be able to take hold of me, so I agreed to have ablation- basically where they laser off the affected cells. This isn’t the gold standard of treatment for endometriosis, and mine ended up coming back within a year.
My next surgery happened when I was 21, where I had excision and another Mirena Coil fitted. This is basically the doctor cutting away at the root of the problem and was a knockback, but the right decision for me ultimately. This is major surgery, if anything had gone wrong, I could have had to have a hysterectomy, so I was really scared.
About a year afterwards I had a tennis ball sized ovarian cyst that had partially turned on its side. I was rushed into surgery on my 22nd birthday and my surgeon was able to save my ovary, but I had a haemorrhage post-op and had to come home with a catheter. The scariest part about this surgery was the fact it was during a global pandemic, so I had to be in hospital alone. Yeah, I’d say that this was that scariest surgery of the three.
What other treatment have you received?
I was on the pill for 6 or 7 years and tried the implant but that didn’t work for me either as I bled the entire time. It didn’t help that my doctors weren’t understanding and kept me on it for six months before they let me go back on the pill. I’m now fitted with my second Mirena Coil. It works really well and I’ve had no regrowth so far. A couple of flares but nothing as bad as before.
What side effects do you feel other than pain?
I get cramps in my legs and up my back. My hormone levels change a lot and sometimes I find it hard to have penetrative sex.
You said that you find it hard sometimes to have penetrative sex, has this affected your love life at all?
Before my first surgery sex was really painful, sometimes I just couldn’t go through the pain and I was worried that it would upset my partner so that was really difficult mentally. It didn’t help that my medication affects my libido when I first started having sex, but now I’m with a really supportive partner that understands the condition as he was with me through all of my surgeries and before I got my diagnosis. I’d be terrified to have to explain how I feel and what I feel to a new partner though, that would be really scary.
How has living with endometriosis affected your education?
I’ve had a lot of surgery and that has meant that I’ve had to have time off of school and uni and work. But I'm lucky. I’m really motivated and try not to let it affect me day to day. My mum and grandma are the same- you learn to adapt rather than let it inhibit you.
Have your schools/university been supportive?
My uni has been so supportive through all my surgeries and day to day difficulties. They’re super understanding and are good with giving me extended deadlines and accommodating to moving sessions with personal advisors etc. but I know that my uni is an exception. My friends at other unis haven’t been so lucky so I know that mine really is setting a precedent. I’m lucky that endometriosis has never affected my learning or my grades beyond repair because, as long as I can prove I’ve been working, my uni reflects anything that’s been going on in my marks.
It’s been so nice to talk to you Maisie! Do you have any parting advice for people going through the same thing?
I’m super open about my condition, like I write a blog and have spoken on the radio a few times. I get a lot of questions from people that I know really well, as well as people I don’t really know but I’m happy to help and be open. Like I could talk about vaginas for hours, you know?
My main piece of advice is do not listen to someone that tells you that you are not ill. If you know that something is wrong.
Ask for a new doctor. Ask for a specialist. It’s better to be on a long waiting list than no waiting list at all.
It’s not normal for periods to make you so ill you can’t get out of bed. If you are missing work, then there is a problem. The pill won’t solve everything.
I also want to make it clear that having a clear ultrasound does not mean that you do not have endometriosis. Do not let that stop you!
Try not to let your condition rule your life.
Yes, being told at 19 that I needed to hurry up and have a baby is scary, but infertility is not the end of the world.
There is more than one way you can be a mum. At the end of the day, I am me. My uterus doesn’t define me. Listen to your body. Listen to your pain. This is valid. Make people listen.
Fight for yourself.
Fight for your body.
*Maisie's name has been changed to protect her privacy