Kelly she/her42 Years old from Wellington, New Zealand
1. How long did it take you to get diagnosed with endometriosis? For eg How long did it take to get referral to gyno and then to your actual diagnosis, how many doctors did you see? Etc
The pain, and bleeding etc progressed over a period of 20 months, so I went to my GP. It took 6 months from first seeing my GP to having my first scan (external and internal). They discovered a 3cm x 3cm fibroid in my uterus.
I then had another min 6 month wait to see a specialist. During that 6 month wait to see a specialist, I was admitted to hospital with severe labor-like pain and bleeding. During my 3 days stay in hospital I saw 3 specialists, and I had a second internal scan as well as two internal examinations and had a Mirena inserted. This is when they diagnosed me with adenomyosis, and it was agreed that a hysterectomy was the best form of treatment.
I was discharged from hospital but returned two days later as I was still in sever pain, extreme heaving bleeding, passing clots and the Mirena came out. I saw a different specialist on this occasion.
I returned to hospital an additional 3 times over the next 5 weeks due to pain and bleeding. I saw different nurses and a different doctor each time I visited.
Chronic fatigue was also something I was battling with the entire journey.
2. Have you had any surgeries? if yes how many? Did recovery go as planned?
I had a hysterectomy 3 months after my initial admission to hospital.
They removed my uterus and my fallopian tubes and left my ovaries. And they discovered that I was also riddled with endometriosis.
I am now 3 months post operation. Recovery went well as I 100% listened to the doctors, as I was adamant to allow my body to heal properly to eliminate any further problems.
The operation has been life changing. No more pain and no bleeding.
My follow up appointment with the gyno was cancelled due to ill staff, so I am still waiting for a new appointment time.
3. Do you have any other chronic pain conditions or illnesses? Chronic fatigue etc
No, I am feeling much better post op. I just get tired much easier than I used to.
4. What are the hardest parts of living with your illness/condition? how does it impact on your daily life?
Before my operation, living with adenomyosis and endometriosis had a massive impact on my life. Initially it was painful and very heavy periods each month, which often caused me to be couch / bed bound for 2 – 3 days. As time went on the pain and bleeding got worse and developed more often. It became an everyday thing. I had pain and bleeding every day for almost 4 months.
I am a mother of 3 with my own business. I love being social, active – running, bush walks, water skiing. Every part of my life was impacted by my condition. Not feeling well enough to exercise daily, scared to be too far away from home due to the pain and heavy bleeding. Even taking the kids to sport became a challenge.
Prior to development of my condition, I had moved to no waste period products, like period underwear and a period cup. I could no longer use the cup due to pain, and the period underwear became extra protection to the super tampons and pads that I had to revert to due to the extra heavy bleeding. This didn’t sit well with me from a personal level, as the wastage that I was using became extreme, however it was the only way that I could prevent having to regularly change my lower garments.
My everyday protection was a super tampon, maternity pad and all-day period underwear. I would be changing the tampon and pad within 2 hours due to overflow.
5. How do you stay positive?
It was incredibly hard to stay positive, due to the impact it was having on my everyday life.
I made sure to make the most of the days that weren’t as bad as others, and the support of my husband and my close friends was amazing. Cuddles with my children was also important.
I was very grateful that I had finished having children before my condition became severe and therefore having a hysterectomy wasn’t a huge issue for me.
6. What advice would you give to people out there with endometriosis?
Listen to your body. Rest.
Painful, heavy periods are not ‘normal’. So, get checked out if you are experiencing anything like this. The sooner you see a doctor the better.
Don’t be scared to express the pain, bleeding etc to your GP and push to be referred if you think there is a need. A get a second opinion if you need to.
Look at all options. Get treatment. There is help available.
Talk to your friends and family about how you are feeling, and what you are going through. Talking always helps. Join support groups if you feel confident to.
You are not alone – there are so many women out there suffering some these conditions!
Check out Kelly's business Good Cube