My experience

**TW – talks about surgery and infertility**

“You have stage 4 endometriosis” were the words that I heard when the consultant came to speak to me after surgery. I remember feeling validated that I finally knew what was wrong but angry that I was dismissed for many years previously. I had gone back and forward to doctors over the years with symptoms such as heavy and painful periods, pelvic pain, nausea and vomiting, bladder and bowel issues and fatigue. I remember I was told “it’s just a bad period” or “it’ll get better as you get older” and given the pill or other hormones.

Over the years I had multiple surgeries for endometriosis and the longest relief I got was about 4-6 weeks and then symptoms returned with a vengeance. The endometriosis was growing on different organs in my body and there were thick adhesions that were sticking my organs together causing severe pain. Endometriosis had damaged the nerves of my bladder which resulted in me having to self-catheterise up to 6/7x a day. I had 5 surgeries for the condition, and it got to a point I had tried everything to get some relief. I remember going to see my consultant and him recommending I go back on Zoladex which is an injection that puts you into a chemical menopause but there was nothing else he could do for me. I tried a few rounds of Zoladex just like he had said but I was still getting symptoms that were debilitating. I was having to take medication every day to manage the symptoms and to try and function but a lot of the time I was bed bound. I was so low, and I remember emailing my consultant to update on how I was doing and telling him honestly that “I couldn’t live like this anymore as it was too difficult” and they told me they didn’t know what else to do for me and left me to it. I researched different consultants across the UK who I could possibly reach out for help and the first one I found I had an appointment 1 week later. It was the best consultation I had ever had he listened to everything I said from when my symptoms first began, he did scans and bloods and then spoke to me about my options.

I knew surgery had to be the option as I had tried medications to manage the symptoms, but it wasn’t working. I had to make the most difficult decision and that was to have a total hysterectomy at the age of 24. I knew that this would be a decision I would have to make eventually but didn’t think it would be this young. They say that Endometriosis is a bad period, but for me it has meant losing organs, organ dysfunction and loss of fertility. I remember someone saying to me about having children and what if I was to meet a man who wanted kids and that I needed to seriously think about it. I didn’t let comments like this bother me because my quality of life was the main priority here and I wanted my life back. I know that if I want children in the future, I have the options of adoption or fostering.

There is no cure for Endometriosis, and I still have some symptoms and have to live with the damage it has caused to my bladder, but I have a better quality of life. My family and friends are such a huge support through all of this and I’m incredibly grateful because I know a lot of people may not have support. My experience is one of many and I don’t want anyone else to ever have to go through what I have. I want to be able to share my story and raise as much awareness as possible. Early intervention with endometriosis is key. If you are dismissed by one doctor, seek a second opinion because you know your body better than anyone else. There is support groups out there that can help.

My Hysterectomy Journey

 

** TW – Discusses surgery, menopause and infertility**

I wanted to use this post to talk about my hysterectomy journey. The reason for having a hysterectomy was due to Endometriosis. There is no cure for Endometriosis, but the hope was that this surgery would give me a better quality of life and for me it was to get my life back. I’ve had 4 surgeries previously for endometriosis and they have removed any visible endometriosis but unfortunately when I’ve had these surgeries the longest relief, I would get was a few months and then I’d be back to suffering again and my periods were so debilitating alongside the bleeding.

There were discussions around fertility at this point because with hysterectomy it would mean I would be infertile and unable to have children. In some ways I was sad that endometriosis had stolen my fertility from me, but I knew that I had to put my health first. The option of egg preservation had been suggested but due to Zoladex and being in chemical menopause for the last 7 months it wouldn’t be an option for me. I know that if I want kids in the future, I do have other options like adoption or fostering.

There was a process I had to go through due to my age, so I had to speak with a second gynae consultant who had to look at my notes and decided whether they agree this is the route to go down in terms of treatment options and look to see I fully understood the surgery. The second consultant did agree and signed off for the surgery to go ahead. I was supported through this whole process by my gynae consultant and also his Gynae Clinical Nurse Specialist. The plan was to have a total hysterectomy with removal of uterus, fallopian tubes and cervix but were hoping to preserve my ovaries depending on their condition. A few weeks before my surgery I had a discussion with the Pain Specialist Nurse and the Gynae CNS and we talked about pain relief post op. I was hoping post op I would wake up comfortable and pain free, so they had suggested giving me a PCA pump post op with fentanyl. A PCA pump stands for Patient Controlled Analgesia and when you need pain relief you would press a button which would administer the dose and the medical professional would preset the dosage so that you don’t give yourself too much. I think knowing this was going to be in place gave me a lot of reassurance.

I had to attend preoperative tests a few days before surgery, and I had various investigations done and felt it was all very thorough. Once the tests had been done, I got the confirmation for the procedure to go ahead on Thursday 1^st of September 2022. I was to be at the hospital at 7am that morning. I arrived and the anesthetist had come to see me to answer any questions I had and to talk about pain post op. The consultant then came to see me to go over the consent again and for me to sign it. I then got myself ready to go down to theatre as the procedure was scheduled to be at 9am. The nurse walked me down to the theatre and stayed with me whilst I was put under anesthetic and that was the last thing I remember.

I remember waking up post op and I was completely pain free. I’ve always had this heavy feeling in my stomach, but this was completely gone. It all felt a bit like a dream at that point. The nurse did my observations and told me I had the PCA to use when I needed it. I was able to then call my mum who was able to visit from 10am-6pm at night and she was only a short walk away. I think that the whole day I was sleeping on and off. I had a catheter inserted for 24 hours. I was given IV antibiotics whilst in hospital and an injection to prevent blood clots. The nurse who looked after me post op was called Teresa and she was amazing. She was checking on me regularly and just before her shift ended, she came in to see me and helped me to stand up for the first time since surgery and freshen up which helped so much and made me feel a bit better. We chatted about endometriosis and the procedures I’ve had due to it, and I always remember her saying to me “you’re going to be ok.”

I was in hospital overnight and on the Friday morning the physiotherapist came to see me and had given me information about physio exercises post-surgery and how best to get out of bed post hysterectomy, so I didn’t hurt myself as I was quite tender. We also went for a short walk around the ward, and I did stair practice, but it felt good to just get up and stretch my legs. The consultant also came to see me to let me know how surgery went and plan for follow up. The anesthetist had also come in to explain she was making some short-term changes to my medications and was discharging me home with a few weeks’ supply and some laxatives to keep my bowels moving. I had my catheter removed and I went back to self-catheterising. The consultant wanted to make sure I was passing a good amount of urine, so they had to measure my urine output each time I had went to pass urine. I was allowed to leave hospital that afternoon but had stayed in London until Monday and then I was able to travel back to Scotland.