Hey hey, sorry it’s been a while a lot has been going on but I’m back now and back with a bang!! I was lucky enough to be able to interview a few Endo sisters for a Q&A to find out more about their own personal experiences in dealing with Endo. Every single woman deals with a vast variety of issues and no two Endo sisters are the same. Someone with Stage V Endometriosis may feel very little pain compared to someone with Stage II Endometriosis. The stage does NOT determine the amount of pain you “should” feel.

I hope this Q&A is somewhat helpful to you & maybe even relatable, who knows? It’s just nice to know you are not alone in this.

I now want to introduce to you, the lovely Vicky. She is a Support Group Leader for the Endo Dundee Support Group. I’ve had the pleasure of getting to meet her and she is such an inspiration and supportive woman. Big love to my Endo sister xo

Tell us a bit about your story. What symptoms were you suffering from that made you seek medical help?

In March 2017, I started to suffer from a really sore lower back.  I went to the GP who thought I had a urine infection and gave me antibiotics.  The antibiotics made me sick so I went back, no matter what I took it didn’t touch the pain.  In May 2017, another GP had suggested doing blood tests including for ovarian cancer and coeliac disease.  My CA125 markers were higher than they should be so I got referred to gynae as an urgent case.

In your own words, what does Endometriosis mean to you?

Endometriosis has made me more grateful for what I do have in life and to try to not worry as much about things that I have no control over. 

What were you initial feelings when you were told you have Endometriosis?

I got told after a MRI scan that I was suspected to have it but I would need a diagnostic laparoscopy to confirm it.  I had never heard of the condition and did not know of anyone else who had it. My Husband was a huge support and did a lot of research about it before I had a chance to do it myself. 

Where is your Endometriosis located?

I have stage 4 Endo – I had an endometrioma drained on my left side during my diagnostic lap and I am aware that my bowel and womb are stuck together. 

What treatment have you had?

To date, I have had no surgery other than my diagnostic lap.  After that op and my follow up with the surgeon, I decided to try the combined pill (which didn’t work for me), Zoladex (which gave me my life back with little side effects) and then the mini pill, which for now continues to be working, almost a year later. 

What further treatment do you need, if any?

None at present.  I’ve been told more surgery may be needed if my pain worsens or if I’ve been unsuccessful at conceiving within a six month period of trying. 

How has Endometriosis affected your job/relationship/social life?

Prior to my lap, I lost about a stone and a half and I was unable to eat a full meal (not the norm for me!) I was having to take time off work most months.  In terms of my relationship, I feel it’s brought us closer together. I’m usually okay in terms of my social life but people do understand if I need to change plans at short notice or if I begin to feel ill when I’m out.   

In your opinion, what do you think can be done to improve diagnosis?

Hopefully through the menstrual wellbeing 2020 campaign, younger people will be more aware of what is and isn’t normal and may get seen by their GP sooner.  The Endo UK/RCGP elearning should help to raise GP’s awareness of the condition too.

What support do you have? Do you think there should be more support in place for those who suffer from Endometriosis? What type if so?

My Husband, parents and friends have been a huge support to me since being diagnosed.  I also started attending the Fife support group last year (around about 50 miles from where I stay), which inspired me to look into setting up a group locally and so Endo Dundee was born after I received training from Endometriosis UK ☺

More information regarding the group can be found via the Endometriosis UK website (https://endometriosis-uk.org/support-group/49759), Facebook (Endometriosis UK Dundee Support Group) and on Twitter and Instagram (@EndoDundee)

Do you have any advice for anyone who is newly diagnosed, trying to get a diagnosis or suffering from symptoms similar?

Keep persevering – don’t be fobbed off.  There are also helpful resources available on the Endometriosis UK website such as a pain and symptoms diary and consultation questionnaire to take along to appointments with your GP/Gynae.  

If you are interested in having your experience shared on here like Vicky has, then please contact me via the Contact button. I want to be able to spread as much awareness as I can.

Much love, Chlo xo