Why I had a hysterectomy at 36
* This is not the usual content you are used to and if it is not for you, just keep scrolling and we will return to regular content. As it is Endometriosis awareness month, I feel it is important to share my story.
Back in 2018, I went through a hysterectomy at the age of 36. It was something that I chose - begged for if I am to be completely honest. I originally had no plans to write about it or what led to it. When I publicly told everyone what was happening, I was greeted with a lot of support, empathy, understanding and encouragement. I have had several people reach out to me with their own stories from all over the world. I have been encouraged by many to share my story and if it can help one person not to feel alone, then it will be worth it. It is also good for me to get it all out, so here is why I had a hysterectomy at 36.
At the age of 13 when I first got my periods, they were painful and heavy from day one. For me, I felt this was normal because I didn't know any different. I remember being curled over in a ball on the floor crying as a teen and people wondering what was wrong with me. All of my friends had no issues so maybe I was just a tad dramatic as I did have a flair for drama. When I was 16, I went to the doctor to seek help. The Dr mentioned something briefly about possible Endometriosis and sent me for a scan. (BTW endometriosis isn't usually detectable by ultrasound). Nothing was found. Eventually, I was put on the pill and I was told to just skip my periods using the pill and my pain would go away when I had a baby - something I would be told A LOT over coming years. Yes, this is what my male doctors told me.
When I was 25, I still struggled every 4 months when I did allow myself to have a period. I would often have to take time off work. I went to the DR again and had an ultrasound. When I got the results of the scan, it indicated that I had a condition called PCOS. A condition that my DR knew nothing about so he promptly printed out a Google fact sheet and left me with the comment that I might not be able to have children. I remember breaking down in my car and my mum and dad had to drive to DR to pick me up. I was newly engaged and planning my future and I had no idea what was going on or what was wrong with me. I had never even heard of it before. I got a referral to see a gynaecologist. She explained PCOS in more detail and in my case the pill was adequate treatment for it as I wasn't yet ready for children. She also addressed the issues of heavy bleeding and pain. Endometriosis was mentioned again, but the only way to diagnose it was through a procedure called laparoscopy which is essentially minor surgery performed under a general anaesthetic. I wasn't prepared to go through surgery, and she was more concerned about the small cyst that was detected on the tail of my pancreas (which my DR failed to even mention). She referred me for a CT scan. I was sent back to my DR for the results and he just said everyone has cysts and if you keep having scans you will keep finding things. It was decided to have a follow-up scan every 6 months. After 2 years it hadn't changed in size and that was that ... so I thought.
Around 6 months after I got married, my husband and I decided that we wanted to start a family. I came off the pill and we started trying right away. The problem was that even though I wasn't on the pill anymore, I wasn't getting a regular period. It would come every 3 months or so and when it did, it was awful. After 12 months passed, I went back to see the gynaecologist and had some tests done. She confirmed that due to the PCOS, I wasn't ovulating and was not going to be able to get pregnant without some help. I was devastated and let go of the idea that I would be getting pregnant anytime soon. Maybe letting this go was what I needed because a couple of weeks later, I found out I was pregnant. They have no idea how as I hadn't ovulated once in a 12 month period according to the tests. 9 months later my Jakeystar was born. I didn't have any periods when he was a baby because I was breastfeeding. When he was 8 months old, we decided to try for another baby because we didn't know how long it would take. I had one period which wasn't too bad and I was pregnant again. This was a big shock considering the heartache we went through with Jake. Everyone was shocked I fell pregnant so quickly. While Jake was born naturally, my little Jesse had other ideas and became severely breached. He couldn't be turned so the safest option was a C Section. Little did I know, this C Section would come back to bite me several years later.
When my periods returned, they were regular every month which was a shock. Having babies certainly made my cycle regular, but didn't do anything for the pain. It was horrible and I put up with it because that is what as a woman you are taught to do - just get on with it. When Jesse was 1, I suddenly developed horrible upper abdominal pain and was rushed to the hospital. That cyst on my pancreas that my 'former' DR told me not to worry about, well it had grown to 9cm. It was crushing my spleen and I had to have it taken out and hope that it hadn't turned cancerous. The hospital staff couldn't believe he didn't refer me to a specialist where it could have been easily removed when it was much smaller with much less trauma. Thankfully it was benign, but I had open surgery to remove the cyst and my spleen. I needed a blood transfusion and I was heavily medicated for 2 weeks because of the gravity of the surgery, I have a scar from my belly button all the way up to my rib cage and I have been given the nickname spleeny which seems to catch on thanks to my brother.
After this surgery, my periods started to get a lot worse. It got to the point that the pain was so unbearable that when it hit, I couldn't move and I would be that crying ball on the floor again. My DR prescribed me Tramadol to help with the pain but if I am to be honest it didn't really help the pain, it just made me not care about it as much. One day I felt a large hard lump near my C Section scar. I had an ultrasound and the word Endometriosis came up again. Apparently, there is a secondary rare form that can be caused by a C Section where parts of the endometrial lining are left behind after surgery. I went to the same gynaecologist that delivered Jesse by C Section and had to have my C Section scar reopened. He removed what was two large endometriosis lesions and a lot of surrounding scar tissue in the hopes that it wouldn't grow back. It left me with what looked like a large indent in my stomach. Small price to pay. He had only seen this case twice in his decades of practising. It is not a common form of endometriosis.
Removing this didn't help my pain. It was still getting worse and was starting to occur not just only when I had my period, but on random days as well. I had a diagnostic laparoscopy done and nothing was found. 12 months later, there was still no improvement. I wasn't ready to have a hysterectomy and really I didn't need one at that point because nothing was found, so I opted for a procedure called Endometrial ablation where the lining of the uterus is burnt away and in some women, it stops your periods altogether. The surgery was a success and my periods stopped and I no longer had to deal with the pain of each period. I also had my tubes removed as it was no longer safe to fall pregnant after the ablation which was something I was OK with. I hadn't planned on more kids. The surgery however took a lot longer than expected. I had developed a lot of scar tissue thanks to having my spleen out which could have been causing issues as well, but the big surprise was the large amount of endometriosis that they found on my bladder. It explained a lot of my pain. It was removed. It was a big shock as a week before, I had paid $300 to have what was called a deep endometriosis scan to specifically look for endometriosis on my bowel and bladder. It showed nothing.
2 months after I had the surgery, a new pain developed. It was a feeling of pressure that became so overwhelming it was difficult to function. He saw evidence in my surgery of what is called Pelvic Congestion Syndrome which is almost like a form of varicose veins in your uterus. I tried invasive pelvic floor therapy. The only thing that worked was pain relief in the form of tramadol. It was a short term solution and one day I told myself I would get a hysterectomy, I just wasn't ready and I got on with life.
By the beginning of 2018, the pain and pressure was getting worse. One day I woke up, and I had horrible back pain to top it all off. It was constant and never went away. It got to the point where I couldn't enjoy anything as I was constantly feeling this pressure and pain. I stopped going out, I stopped seeing people and I was scared to leave my house. Each month it got worse and worse. I decided to have an ultrasound to make sure there was nothing seriously wrong. The scan came back showing I had fibroids in my uterus and a large ovarian cyst. I cried all day and asked for a referral to see my gyno. I was done and in that moment I decided I needed a hysterectomy and I was already at peace with this decision.
It was an 8-week wait to see the specialist and my regular gyno wasn't seeing anyone for the rest of the year and recommended his replacement. Each week became harder and harder to function. It was so close but also so far away. One day I received a call 3 weeks before my appointment that there was a cancellation and because of my pain issues, I was on an emergency waitlist and they could see me earlier. I sat in the office and cried and told the specialist I was over it and I couldn't keep going. Looking at my file, she said that an ultrasound had also detected that I possibly had adenomyosis. It is like the sister to endometriosis but instead of tissue being outside the uterus, it embeds itself into the muscle of the uterine wall and can cause a lot of pain and a feeling of intense pressure. It all made sense. Based on the fact that I had almost been diagnosed with every pelvic condition there is, she agreed to do the hysterectomy. If it had only been for endometriosis, I probably wouldn't have been approved for the surgery as hysterectomy is not a cure for endometriosis, but it is for adenomyosis. So she booked me in ...... to have the surgery in a week.
I was really excited. Finally, I could imagine a new life where I wasn't in pain cuddling a heat bag on the couch. The surgery would be done by opening my c section scar and everything but my ovaries would be taken. This meant that I wouldn't go through surgical menopause and that I wouldn't need HRT therapy. After I had the surgery, I remember waking up in recovery moaning in pain. The anaesthetist came over to me and told me they gave me everything they could, but I would be unconscious if they gave me any more. I was in agony and I was almost screaming. I was hooked up to a morphine pump that I could press a button every 10 minutes to help relieve pain. The surgeon came in and got me to set an alarm on my phone for every 10 minutes so I would know to press the button. It was the only way I would get on top of the pain. Later that night, I finally got on top of the pain but I didn't sleep at all, it still hurt too much. I was in a lot of pain for the first 2 weeks. I also had some nerve damage so the left side of my groin was completely numb but also burning with pain at the same time which is a hard sensation to explain. Moving around hurt and you are not supposed to do anything so I spent a lot of time in bed. It was really really hard. I cried a lot. It probably didn't help that although I kept my ovaries, I was told they probably went into shock and might need some time to get going again. I started experiencing hot flashes and other symptoms of menopause. They only last a week thankfully but it was an unwelcome preview of what awaits me later in life.
Eventually, by 3 weeks post recovery I was up and about walking. I couldn't do too much because my body wouldn't allow it. Extreme exhaustion is a side effect as is what they call swelly belly. My belly swells like I am 4 months pregnant and becomes extremely painful if I do too much. The only way to fix it is to lie down and rest. It's pretty hard not to do anything when you have a then 8 and 6 year old in school. I'm so very blessed to have my mum. She has done everything for me. My husband and my dad have been really good too. I couldn't have done any of it without them.
Almost 6 weeks on I was not 'fully recovered' but I was getting glimpses of what life might be like. As the weeks went by, I slowly started getting back into life. Existing was pretty tiring and even 3 months later, just a one-hour outing would wipe me out and leave me in a lot of pain. As time went on, the pain started to slowly return but presented in different ways. It seems I was left with permanent nerve damage on my left side. 6 years on now, I have had x rays and ultrasounds to show that my insides are completely full of scar tissue and my ovaries are stuck in there. It can be really painful sometimes, especially if they twist. Some days they feel like they are on fire. Other days the pain will come on suddenly and I can't walk. The swollen belly hasn't gone away either. My husband has gotten pretty good at recognising when I am in pain (not from my crabbiness) but just looking at my belly. When it is swollen and looks like I am pregnant, he knows I am really hurting. I still do not regret one part of the surgery. While I am not 'healed' I am certainly a lot better than I was and I am able to function on a much higher level than I had been for many years.
I have had days where I feel terrible, but I have also had days where I feel amazing and haven't had to take so much as a panadol because I feel no pain or pressure. I can feel within myself that this was 100% the right decision for me. I didn't enjoy life, I became anxious at the thought of leaving home and I was in pain and uncomfortable all the time. When people can't see your pain, they don't understand. There is not a lot of education when it comes to painful periods and painful pelvic conditions. When I look back to everything I went through, I am glad that I didn't have a daughter to pass this onto. I wouldn't want her to go through it. To have to beg drs for help, to put up with being told to have a baby and you will be ok or that most people only need a panadol for period pain. To be given a google fact sheet because they weren't educated enough about the female body. To grin and bear it and turn up to work even though you are crying from pain in the toilets but period pain isn't seen as a valid excuse for a sick day - especially when you need a medical certificate for clearance. To have girls at school yell across the yard that you have a patch of blood on your dress because your period is so heavy. To have to leave work or the shops embarrassed because you are bleeding so heavily and you don't want anyone to see. To not have to spend thousands of dollars on scans, private health insurance and surgery fees. The waiting lists for the treatment of endometriosis in the public system can be over 12 months. The waiting list for a non-urgent hysterectomy can be over 2 years. If you don't have private insurance which is very costly and still leaves you hundreds of dollars out of pocket. This is how long you sometimes have to wait for treatment.
I have always been a very open person and openly talk about these things, but a lot of people don't and that is what needs to change. By opening up, I have already had so many people contact me with their story. Please know you are not alone and I know what you are going through. This was by no means an easy decision for me and I am very lucky that I was able to have children. I was done having kids, so I haven't gone through a process of mourning the loss of my uterus. I don't feel like less of a woman at all in fact I don't even notice it is gone (surgery pain aside). I am not grieving a loss, I am celebrating my future. I don't regret my decision at all. There is the possibility that the endometriosis will come back and from a lot of the pain that has been increasing over the years, I suspect it has. The only way to know for sure is surgery, but for now, I am managing. While I have had endometriosis it was only one of many things causing me pain and suffering and the other things are gone. No surgery is without risk or side effects but for me, I was literally at the end of my rope that it was worth the gamble. I chose to live, and I am so very happy and at peace with my choice. While this has been the hardest thing I have ever had to do, I know that I can do anything now!
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Comments
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Heather 5 years ago
Hi I am doing research on hysterectomy and trying to find the safest painless way to do one. What kind of hysterectomy did you have. I know there are 3 ways and I need to chose one. I'm nervous and scared. I myself have been through 2 surgeries to remove a cyst off my right ovary. 1 in Sept 2018 and it grew back and had another removed off the same ovary in April 2019. 2 months later I was diagnosed with another cyst on my right ovary. I have both the sisters Endometriosis stage 3 and Andeymosis. I have an appointment Sept. 4th to Schedule a hysterectomy surgery now. I can't take the pain anymore. I feel like I'm giving birth when I get my period for 3 days straight. I just lying in my bed with heating pads and pain meds don't work. I've tried for 2 years to have a baby with my Husband, but isn't working. I have had 2 children already in my life, but they are not my current spouses. We wanted one of out own, but we've tried to and at this point my Husband cares more about my health then having a baby. I'm already greaving about never being able to have a baby again. This is also the hardest decision I have ever made in my life. I'm giving up a lot, but also am trying to get well. Please message me anyone who has had a hysterectomy and your experiences and what kind you had preformed. Thank You.
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Meagan 5 years ago
Sarah, WOW! I am so sorry you went this all of this for so long! When I was 16 I was told I had PCOS & a bicornuate uterus and was told the same thing about not being able to have kids without help. Well I have 4 beautiful children 3 boys & 1 girl. I’m also so terrified that my daughter could have all these issues I do. I had my tubes removed Dec. 2018 because my husband and I were done having babies lol. Since having my tubes removed my already extremely painful & heavy periods turned into excruciating pain. I couldn’t move. I would literally have to sit down on the floor and curl into a ball if I HAD to get out when my pain was severe. I would bleed for 2-3 weeks and it was never light bleeding it was always extremely heavy flow. I went and saw my OB/GYN she gave me a lot of options including the ablation but said 50% of the time it works and 50% of the time it doesn’t. Then she gave me the option for a hysterectomy. I am 28 BUT like you I was soooo sick of the pain and so sick of how much it affected my life. She did an ultrasound to make sure there wasn’t anything that would surprise her during my surgery and she found that my uterus had collapsed and it is somehow laying on my right ovary and she said that it didn’t seem to have any blood flow to it so my right ovary is “dead” so I’ll be losing that one. I’m not sure about the left yet. So my hysterectomy is scheduled for Aug. 6th which is 6 days before my two older boys start school so I know this is going to be very hard as I have to rely on my mom
And husband to get the kids to school but I know in the long run it will be so worth it. I’m hoping your doing so much better now! Good luck and thank you for being brave and sharing your story.-
living life in full spectrum 5 years ago
HI Megan, thank you for you lovely comments. I am so sorry you have had such a rough time and I hope this brings you some relief. It is a tough recovery but absolutely worth it. I wish you all the best xx
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Sal 5 years ago
Sarah, thank you for sharing such a private and difficult experience with us. I agree, celebrate your hysterectomy, and enjoy a beautiful and exciting future. You certainly deserve it after so many painful years of physical and emotional pain. I look forward to giving you a big hug when I see you next. Love Sal