ADENOMYOSIS THE TRUTH BEHIND THE PAIN:
Hey everyone, good evening, and welcome back. Today we are reading Jen’s story. Jen has had a hysterectomy and is here with an encouraging story.
- Would you like a real name or fake name used? Just going by Jen is fine
- Where are you from? New Zealand
- How old were when diagnosed? 38
- How old were you when you got a hysterectomy? 38
- What made you decide to get a hysterectomy? I had a polyp that caused a lot of bleeding and it looked abnormal on a scan so they needed to remove it. Along with the polyp, it looked like I had diffuse adeno, so we knew the best way forward was a hysterectomy.
- Pros and Cons? No more pain, no more bleeding, no more swelling. The con I did not count on was prolonged infection! I knew infection was a risk but I had read it was so small and only affected a small number of women each year. I did not realise I could become one of those women!
- What symptoms did you have before surgery? Bleeding and pain were my biggest symptoms. I couldn’t walk 10 minutes without bleeding and doubling over in pain.
- How was recovery? Recovery was tough. I will fully admit that. In addition to the polyp, I had adhesions and 20 fibroids. My right ovary was bound to my bowel and my uterus was adhered to my bladder in such a way that my bladder could not empty properly. So, my first few days were really, really tough. I remember week 3 was pretty tough too. Do you still have the same symptoms? No. My symptoms have completely resolved except in the case of active infection. I’ve had 3 bouts of infection since my hysterectomy.
- Do you have any children? Yes, I have one living daughter and have had 10 miscarriages. If not, why did you decide against it?
- How long did it take for your surgery to be approved or accepted? I first approached a gyn about a surgery when I was 34. I knew something was wrong and that the bleeding and pain I was having was wrong. She told me that she couldn’t possibly give me a hysterectomy because (I’m single) I might meet a man who would want children and she couldn’t rob him of that. I was devastated. It was only when I was 38 and absolutely had no quality of life that I found a doctor through Endometriosis New Zealand that came highly recommended for excision surgery that I made an appointment. I went in basically ready to beg on my knees for a hyst and he was just like, yup. This is what you need. Let’s get some diagnostics to confirm it, but I agree, let’s get it done. I was so happy! Someone finally listened to me.
- Anything you would tell someone considering getting a hysterectomy? Be prepared for complications. I was not. It’s such a small chance but the treatment for infection is such a horrible thing to go through, especially, if you’re like me, and have recurrent infection. Talk to your doctor about ways they are going to manage to reduce your likelihood of infection and how to catch it. Watch for bleeding post-surgery and really take it easy. I was like a bull in a china shop and did too much too soon.
- Before surgery, what treatment plan/medicine did you use? I was on so many pills. Too many pills. Several pills to stop the bleeding. Pills to stop the side effects of the pills for the bleeding. The Mirena. I was on too much at once. I think because I kept bleeding no one knew what to do, and rather than do any diagnostics (like look for a polyp), they just kept throwing tablets at me. And I didn’t know about polyps. The idea never occurred to me. I had 20 fibroids inside me that we didn’t know about, that a scan did not catch. Surely, they were causing me grief and I was being told to just tough it out. How amazingly ignorant!
- Anything you would like the world to know? Adeno is a serious, life-altering, life stopping illness that affects women in the prime of their lives. So many people only hear of Adeno once they are diagnosed. I know I was one. We need more awareness, more funding to fight for research and more progressive hysterectomies for our women. My hysterectomy is the very best thing I’ve ever done for myself. 10 months on, even with 3 lots of infection under my belt, I feel free and liberated. I’m no longer chained to the pain, the bleeding and the bloating. I can do so much and live the life I want. Every woman with adeno deserves this freedom.