‘I didn’t like the idea of not having a womb. Suddenly the very thing that had caused me so much agony was a symbol of my femininity.’: Woman battles through Adenomyosis leading to a hysterectomy

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“As I lie in the hospital bed I can feel my loss, a gnawing pain low in my abdomen reminding me of what was taken. I find myself, a 32-year-old woman, having a hysterectomy because it is my only real shot at living my life. I cry that it had to come to this, but also at the prospect of life without as much pain, without so many restrictions. It’s a hard trade-off and one I am still processing. I didn’t want this for myself, but you will find after years of losses, lost friendships, missed opportunities, wasted time… you would give anything to have good days.

woman with sun flowers
Courtesy of Charlotte Jacobs

So how did I get here? Well, disclaimer, this is the part where I talk about periods! My periods started when I was 11 and it felt way too soon. Quietly getting on with it for four years not knowing I was any different from any other girl, I then found myself in surgery at the age of 14 due to a ruptured ovarian cyst and its complications. I was diagnosed with Polycystic Ovary Syndrome (PCOS) and told I would most likely struggle to conceive.

Over the next 5 years, my symptoms would get worse, and I was experiencing severe pain, nausea, migraines and even fainting at times. I seemed to just suffer from bad luck when it came to my health, having to have my gallbladder removed at 16 due to gallstones and then my appendix removed a year later. It was a running joke with the friends I did have that I would soon have no organs left to remove. A joke that hasn’t aged well.

I stopped dancing and performing when my health dictated it and it broke my heart. My mother was convinced I had the same condition she had called Endometriosis, a condition where cells similar to the lining of the womb are found elsewhere in the body. It causes the same symptoms as I was experiencing and it is proven to run in families. She kept taking me back to the doctor and pushing for more investigations and each time the doctor would dismiss us both, treating her as the overbearing mother and me as the attention-seeking teenage girl.

woman in the hospital crying
Courtesy of Charlotte Jacobs

Then something amazing and unexpected happened. I fell pregnant. I was too young and it wasn’t in my plan, but that seems to be a theme with me. My son is a miracle and the best thing to ever happen to me, I only wish I could be a better mom sometimes.

Eventually, at 19, we were in a position to go privately and see a gynecologist consultant about my pain, which at this point had become chronic. She would suggest she perform a surgical procedure called a laparoscopy in two weeks’ time. I was suddenly very scared again. Surgery is always stressful but I worried about my diagnosis. What if they didn’t find anything wrong at all? And here’s the sad thing: I already knew the answer because my body was telling me loud and clear, but I had had enough doctors, friends, and family doubt me that I was second-guessing myself.

When I came round, the consultant stood by my bedside and told me she had found it, and enough for her to question how it had been missed in my previous surgeries. She told me I was right, and I cried. She also told me she had ‘got it all’ because she had used a laser to remove the Endometriosis she had found. I felt oddly relieved initially; nobody was calling me an attention seeker or accusing me of trying to get off school. Instead, I was validated. I had been right – something was wrong.

woman smiling taking a selfie
Courtesy of Charlotte Jacobs

The first surgery lasted about a year before symptoms really came back with a vengeance. This then began a cycle of treatment in the form of hormone treatments that have some really nasty side effects then surgery then back to treatment. Five years later, I had had six surgeries and we could no longer afford to see this consultant. I had another couple of laparoscopies and was also put into chemical menopause which was an awful experience. I spent another three years fighting to be seen by an Endometriosis specialist. When I was finally seen and operated on, she had another diagnosis for me.

This time it was Adenomyosis, a condition similar to Endometriosis but the cells invade the womb wall, so the only cure was a hysterectomy. I left another surgery feeling conflicted because I didn’t want to acknowledge that might be my only option. I couldn’t face the idea that if I wanted to dance like the little girl dreamed I would have to make the decision to trade away any chance of carrying my own again. I also didn’t like the idea of not having a womb, suddenly the very thing that had caused me so much loss and agony was a symbol of my femininity.

It took me a long time to adjust to the fact I could not live the life I had wanted when my health began to get worse. I grieved for the girl I was and the woman I thought I would be. I struggled to keep a job due to repeated hospital admissions, and yet despite the chronic illness, I’m a creative person and I wanted to express myself somehow. My last excision surgery happened the year before the pandemic hit. I was just hitting my stride as the world locked down. I had been writing a play script about my experiences with Endometriosis, as well as other women’s, called Yellow Ribbons and we were starting to work on production when we had to drop it all.

a knit uterus
Courtesy of Charlotte Jacobs

So I decided to make a documentary when the restrictions first lifted. I only had one camera and three women who were happy to talk on camera. Discussing periods has never been easy, but sadly it still comes with a level of shame as opposed to being the perfectly natural thing it is. I shot shadow work to use in the documentary and for a brief second, I was dancing again, using my body to express myself. I wanted the documentary to make others who are dealing with this a little less alone and to start an honest discussion about how these conditions affect us. To remove Endometriosis from the shadows and shed some light on the situation.

woman taking a thoughtful photo
Courtesy of Charlotte Jacobs

I started a social media account for the documentary which was also on YouTube called Yellow Ribbons and suddenly found myself a part of the online Endo Community, and it was like I had found a home. There are so many women with accounts spreading awareness and it inspired me to keep going with mine. To use the platform to share my story as honestly as I can. And so when my hysterectomy date finally came through after two years of waiting, I knew I would share about that, too.

I then found myself back in the hospital with a suspicious cyst. I had blood tests for ovarian cancer and anxiously awaited the results. They came back clear luckily but the cyst, however, would not be so easy to forget. At an appointment with a local consultant, I finally said what I thought I would never say and agreed to the hysterectomy. Confidently telling myself it was the right thing to do, I had had enough agony and bleeding, enough canceled plans and unfulfilled passions; all these things were possible again if I just traded my womb for them. I wanted to believe I was strong enough to do it, to tell other women they could too if it was what they had to do…but truthfully I was hoping that would be the case someday.

woman giving a thumbs up
Courtesy of Charlotte Jacobs

The day leading up to the surgery was the worst my anxiety has ever been. Worst-case scenarios intruded on my thoughts and I spent my days cleaning the house and getting my things sorted for the recovery. I packed my hospital bag with as many things to comfort myself as possible. Covid restrictions still apply, which means nobody was coming with me. I was doing this alone. And coming to terms with that one was hard. So, I wanted to have as many options to self-soothe as possible including my favorite smelling hand and face creams, essential oil, rescue remedy and yes, a cuddly toy my mother gave me. If that doesn’t sum up the dilemma I found myself in, I don’t know what will. I felt too young for this.

The night before I cried and didn’t sleep much at all, just like my first surgery I was telling myself what if this isn’t necessary, what if they get in there and see a perfectly healthy womb and remove it? As if that was an option. So surgery day came and I walk through the ward to my empty cubicle alone, aware of the other women who were on their own, too. Everyone was on their phone. This surgery felt so much bigger than any of the ones I have had before, it felt even more personal and I felt even more alone. Panic-stricken, I was already crying while they placed the heart monitors on, then the kind nurse did some deep breathing with me. I pretended to calm down but my mind was racing, I felt like a kid in a line for a rollercoaster they don’t actually want to ride, except they could get off.

woman in bed
Courtesy of Charlotte Jacobs

Eventually, I was under, and then three hours later I found myself in recovery. This was unfortunately traumatic. At first, I could feel everything, like a straight line of fire in my lower abdomen. I needed more pain relief. After a lot of shaking and crying and the nurse having to top up my medication, I was allowed to go back up to the ward. The first night was really hard because my mind was coming to terms with the fact it was done now. No turning back. But I also started thinking of other things I would no longer deal with like periods! The fact I would never bleed again honestly blew my mind and I couldn’t wait. Once I heal from this surgery, I physically cannot feel the place where most of my pain originated. I could maybe start living in a way I have never lived, there are possibilities again. I might dance again. It really is the most bittersweet of moments in my life.

As I write this, I am coming to two weeks post-op and it hasn’t been easy. I have developed Covid and a urine infection because apparently, I don’t know when enough is enough! But I see it this way, the worse I feel now…the better I will feel when I don’t! And that day will come, I just have to be patient, which isn’t a strength of mine! But I am still a strange mix of sad and hopeful, because if I get to live my life as I wished I had all these years then I have lots I want to do! And while this isn’t a cure for Endometriosis unfortunately, as my disease has been found outside of the reproductive organs, it is going to make a big difference. It has to.

So, while there’s a lot I don’t know about how things go from here or what is next for me, one thing I do know is I am going to keep talking about this condition and the difficult topics that surround it like periods, infertility, menopause and more. Endometriosis changed my life, it has dictated to me how it has gone so far and this hysterectomy was the day I took some of the power back. But I will keep sharing my experiences and others so that the people who suffer from the consequences of stigmatized conditions can feel a little less alone. And in turn, I feel less alone too.”

woman smiling and happy
Courtesy of Charlotte Jacobs

This story was submitted to Love What Matters by Charlotte Jacobs from Erith, South East London, England. You can follow her journey on Instagram, Facebook, and YouTube. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories like this:

‘We usually tell women at this stage to complete their families.’ I was only 17. That wasn’t an option. I had no idea how unlucky I’d be.’: Woman battles stage 4 endometriosis, 2 miscarriages, and hysterectomy

‘Ugh, you can have my kids. Just relax and it’ll happen.’ My journey ended with a hysterectomy.’: Woman diagnosed with Endometriosis after years of infertility, finally finds peace in a ‘beautiful, unexpectedly child-free life’

‘Look at you! What’s WRONG with you?’ Ants were crawling under my skin. I lay on the cold cement floor of my jail cell.’: Woman overcomes felony charges and drug addiction, ‘You CAN recover’

‘A 27-year-old woman asking to have a hysterectomy is extremely troubling. My choice has been difficult to understand.’: Woman fights addiction, endometriosis, ‘This is not a decision I’ve made lightly’

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