Lauren’s Hysterectomy Story
Type of Hysterectomy: Total abdominal, ovaries kept
Age at surgery: 31
Location: Christchurch, New Zealand
I had a hysterectomy after suffering from painful and heavy periods since I was eleven years old. I was diagnosed with Stage 3 endometriosis at the age of eighteen and had four laparoscopies for removal of the endometriosis over the next twelve years. I did manage to give birth to two healthy baby boys and each time my period returned after eighteen months, but then got a lot worse after the birth of my second son. By September 2014 I was in a lot of pain and underwent a drug trial for an endometriosis drug. However, I was pulled off this in December 2014 as I was suffering from side effects. In January 2015 I had another laparoscopy and had a Mirena inserted, but unfortunately this didn’t work. I could not even make the 20 minute walk to my son’s school without bleeding through two types of super protection, and for two weeks out of every month I was afraid to leave the house. I was so bloated, uncomfortable and felt like a failure as a mother. Finally, my gynaecologist suggested that we look towards a hysterectomy as I seemed to react to hormonal forms of treatment. I trusted this opinion, as I had been seeing the same specialist since I was eighteen and he has been with me throughout my entire journey with endometriosis.
During the last laparoscopy, the surgeon discovered a large rectus sheath hernia. When it came time to do the hysterectomy, it was decided that it would be best to do a total abdominal incision along my C-section scar so that they could fix this at the same time as my hysterectomy. I was, therefore, given a pre-med and then put completely under for the surgery. My ovaries were left but my cervix, uterus and fallopian tubes were removed. I stayed in a private hospital for a week as there were concerns over my low blood pressure, and my bowels took a wee while to kick start again!
My greatest challenge was looking after my two young boys during the six week recovery period. I was very lucky that I had my husband and family members rallying around to help. I did experience a lot of fatigue and pain around the site of my scar. I also ended up with a lot of groin pain and reflux, which did not make recovery more comfortable. I saw my specialist for a six week follow up, where he injected a steroid into my stomach to help with the groin pain as he thought there was a bruised nerve. I was cleared for normal activities just before Christmas. However, this was not the end of my recovery; in fact, things were about to get much worse.
I managed to get through Christmas and New Year, and things seemed to be getting back to normal. I even managed a hike with my family on New Year’s Eve. However, in the early Tuesday morning on the 5th January, about 1:15 a.m I began to experience an awful pain on the right side of my abdomen. This came on suddenly, and I was in absolute agony. I ended up in the bathroom for four hours, doubled over in pain and thinking I had been hit with a stomach bug. I Googled my symptoms and joked with my husband that the results said appendicitis, but I was sure that was unlikely.
I managed to slowly walk into my doctor’s office at 10:45 a.m. He took one look at me and concern flitted across his face. As he pressed into my abdomen, I went as white as a sheet. His next words were “I think we should get you to hospital.” I was then hooked up to an IV drip, given fluids, and taken away via ambulance. As I was taken away, I managed one last wave to my boys and had no idea what was to come.
I arrived at the Emergency Department and was given a lot of pain relief, then saw three doctors. I couldn’t believe it when they said the symptoms were in keeping with appendicitis, but because of my recent surgery there was also an element of unknown. I was taken to a pre-surgery ward and admitted overnight. My boys and husband came in briefly to bring me some supplies, and as I said goodbye I figured that we would have an answer that night as to what was happening. My CT scan happened at 9 pm and the doctors came to see me at midnight. The CT scan images were unclear, and so an ultrasound scan was booked for the morning. Cue the first lot of tears due to the pain and the fact that I wouldn’t have an answer until the morning.
The tears were still coming thick and fast before my ultrasound, as I was scared and worried. Throughout the ultrasound, I was in a lot of pain and the images were still unclear. There was talk of a possible infection as the result of my hysterectomy in November, but appendicitis had not been ruled out. The main issue was my blood test results- I had a CRP (a level of inflammation) of 180, when the normal range is 1-20. This indicated that something was definitely going on!
A few different doctors had seen me by that stage, and the decision was made to take me to surgery to have a look at what was happening inside. More tears came as I had to accept the fact that one of my greatest fears, going under general anesthesia, was going to happen again. However, about twenty minutes before I was due to go into theatre, the Women’s Hospital team decided to take over my care as they were convinced that my pain had something to do with my recent surgery.
Off I went to another part of the hospital, and proceeded to have three days of intravenous antibiotics for a post-operative infection. To make things worse, my right ovary also decided to have a burst cyst, just to add extra pain into the mix. I cried because I was in pain, I cried because I missed the Weird Al concert date night with my husband, I cried because my children asked when I was coming home. I finally got discharged on Saturday afternoon, and crawled into my own bed at home.
However, my problems were not over yet. I spent all of Sunday doubled up in pain as the cyst on my left ovary then decided to burst as well- I had been warned of this happening as it was picked up on the ultrasound. My pillow and a heat pack were my best friends throughout the day.
Monday morning saw me at my GP again, who suggested repeat bloods and another ultrasound as I was still sore. Off I went to the radiologist, who spent a good hour looking at my internal organs. I knew something was up when the senior radiologist was asked to look at my images and then called my GP. A large mass was showing up on the scan, and the best course of action was to send me straight back to hospital. I burst into tears at the thought of going back, but there was nothing else I could do.
I was admitted again on Monday night, after only one and a half days of freedom, and I remained in hospital until Friday evening. The days passed very slowly as I was attached to more IV antibiotics which dripped into me every 8 and 12 hours. With no TV and limited visiting hours, I felt very isolated and alone. I cannot fault the hospital staff, who treated me with extreme kindness and did everything they could; but being in hospital is never fun and I did have a few weepy moments as I wondered whether or not I would be OK or if I would have to end up with more surgery.
My emotions were definitely running high, and I really appreciated the visits, flowers and kind words sent from friends and family. It was hard watching my roommates come and go, whilst I stayed attached to machines and got to know all the nurses.
Over time, my blood test results looked more promising and the visits from other medical teams meant that I was thoroughly investigated. I even had tests for Coeliac disease (which has come back positive!) and saw a lovely physiotherapist as my hips were very sore due to the hospital beds.
My wonderful family rallied around me, and as I fretted over my boys they were having a wonderful time with extended family. I cried as I was missing out on those moments with them, and their hospital visits were short and sweet since hospitals are rather boring for little boys. A lovely text from one of my good friends sent me into floods of tears as she reminded me that I am a good mother, as I certainly didn’t feel like it.
The doctors were still not sure what was going on with my symptoms, and so on Friday I had another blood test plus a repeat ultrasound. These both came back normal. I was finally improving and feeling a lot better. The decision was then made that I could be discharged. After nine days total in hospital this was wonderful news and I could not wait to get back to my family and into my own bed.
I have since also had a gastroscopy to confirm the coeliac disease, and since then I have suffered from nausea, indigestion, loss of appetite and bloody bowel movements.
I am still sore moving into February and do not have all the answers I would like. One thing on top of the other has left me feeling really deflated, and I feel like the great plan I had for a great 2016 hasn’t happened. I don’t know how long it will take me to feel back to normal or if I ever will feel healthy. Some of these issues are not linked completely with my hysterectomy, and I still feel like a hysterectomy was a good decision; however, I did not expect the other health problems to materialise at the same time.
My advice is to build up a great relationship with your surgeon if possible, and please listen to your body if you feel that something is wrong. Things can and do go wrong, and it is better to be prepared for the bad than try to convince yourself that everything will be wonderful after your surgery. Of course, my experience is probably at the negative end of the scale, but at the end of the day don’t feel pressured into this decision until you know all of the risks and benefits associated with the surgery.